“Talking Head Pain” Episodes
Check out episodes of “Talking Head Pain” with Joe Coe and Sarah Shaw below and be sure to subscribe for access to future episodes.
In this episode of Talking Head Pain, Sarah is joined by Nicole, a nursing student living with migraine. Nicole shares her harrowing journey, the challenges of navigating health care, and how she turned her struggle into advocacy for herself and others. Nicole’s experiences highlight the power of advocacy, the impact of stigma, and the importance of community support in living with migraine.
Join Sarah and Nicole for an episode that offers valuable insights for anyone looking to advocate for better migraine care and understanding.
Advocacy in Action: Navigating Migraine with Nicole
Narrator 00:00
Be inspired, supported and empowered. This is the global Healthy Living Foundation Podcast Network.
Nicole 00:10
I’ve noticed it’s easier for me to advocate with other people even advocate with Headache on the Hill than it is sometimes with my own family and friends. So first, I want to acknowledge how hard it really can be to advocate for yourself around your loved ones.
Sarah Shaw 00:26
Welcome to this episode of Talking Head Pain, the podcast that confronts head pain head on. I’m your host, Sarah Shaw, Associate Director of Diversity, Equity and Inclusion and community outreach at the Global Healthy Living Foundation. I have been living with chronic migraine for almost 10 years, and I’m very open about navigating life with my chronic disease journey as well as my experience living with anxiety. This podcast will be a window into other patients lives as they navigate their own journeys living with chronic pain, migraine, and mental health. And today we’re joined by Nicole, a nursing student who also happens to live with migraine. Hi, Nicole, welcome to the podcast.
Nicole 01:08
Hi, Sarah, thank you so much for having me.
Sarah Shaw 01:12
Nicole, I like to start off each episode by having our guests walk us through what your worst migraine attack was. Can you help guide us through that?
Nicole 01:20
Of course, my worst migraine attack was in September 2016. I was in an accident and I had sustained a concussion. It was the start of my four year long migraine attack. It was the first time I had so many symptoms with a migraine attack and I didn’t know what to do or how to manage that. I had nausea, vomiting, vertigo, dizziness, lightheadedness, my head was throbbing pulsating aching, it felt like my head was going to explode. And nothing I tried was working, my neck hurt, my whole body really hurt. And that was really, really scary.
Sarah Shaw 01:59
I was just about to say that sounds very, very scary, especially when you don’t know what’s going on with your body or you don’t have the words to explain you’re going through this because of XY and Z. Do you mind sharing some ways that you’ve advocated that might be helpful for our listeners?
Nicole 02:17
Of course. So it wasn’t an overnight or quick thing. It was a multi year long process. But some of the things that really helped were educating myself on what migraine is. So finding different nonprofit organizations and reading the messaging and education they had to share. So I learned that having photophobia or light sensitivity was a symptom of migraine. It wasn’t something that was abnormal. And there was something wrong with my eyes, for example, or I learned that a lot more of my symptoms were associated with migraine, I learned the importance of seeing a headache specialist and I found a headache specialist through various lists from nonprofit organizations. I started attending a support group and I found others who were living with similar situations to me. I mean, everyone’s situation with migraine is so unique, but we all shared migraine in common. And it was the first time that I met others living with migraine. And that was really important. I initially felt so alone in my journey, none of my friends understood. And unfortunately, I lost a lot of friends in the process because people didn’t understand why aren’t you getting better? Oh, you’re still having a headache? Why don’t you just do this or that that works for me. And unfortunately, that didn’t work for me. My story wasn’t like theirs and they didn’t understand that. I learned from various organizations how to advocate for myself. I learned it’s okay to bring questions written down to the doctor. I learned it’s okay to take note at the doctor. I learned it’s okay to use my phone at the doctors or starting off saying I’m going to use my phone to take notes and I have notes written down in advance. And I’m not going on social media or trying to be rude, but this is how I keep track of my records and I want to make sure I don’t forget anything. So I wanted to start off by letting them know I wasn’t using my phone for other purposes or trying to be disrespectful, but I was using it to advocate for myself. I had questions written down, I had notes. I had all my symptoms. I also started to bring kind of like a summarized health history with me. So I typed out my name, personal information, any allergies I had my diagnoses, medications I was on and who prescribed them and why. I also typed out medications that I had previously tried and why I stopped them, what dose I was on, because that’s a lot of information to remember.
Sarah Shaw 04:45
Sure that so scroll along in our heads of everything. It’s really, really important what you did and what you’re doing to kind of stitch together the story of your health. Right? Totally.
Nicole 04:55
Totally, yeah, it’s a lot to remember and the medication names are a lot and I don’t know if you’ve experienced this, but when they ask what medications you’re on, they’re like, Well, so what is this for? How do you spell that, and sometimes I’m okay spelling it and educating. But other times, I’m not, I’m physically not able to do that I’m having a bad migraine attack, I’m having a flare. And I’d rather be able to hand this piece of paper to the provider, or the nurse or whoever is taking that information and say, Here’s my medical information, you can update. And then it just takes a level of stress off of me.
Sarah Shaw 05:29
I appreciate you sharing all of these tips from support groups to you know, learning how to advocate for yourself, and also from assistance from nonprofit organizations like us. In fact, at GHLF, we help patients advocate on behalf of their care. And also when they have to go to the doctor, like you said prepping and notes and being prepared in that way. I remember the first maybe first few years or so when I would go to the doctor and I would have the appointment. And then I would leave and I would be like, Oh my gosh, I forgot to say these three things that are really important to my care. So you mentioning writing down your notes on your phone, and then having them in front of you at the doctor’s office is a page that I took out of your book in the last few years. That way, I don’t forget anything, you know, I have that as a backup resource to make sure I cover everything as thoroughly as possible and don’t have those oh my gosh, moments of something that I forgot. I think when you know you’re like regular people sick like you have a cold or something people say you know, oh, just go to the doctor you’ll get taken care of. But what’s different is when you have a chronic illness or disability when you’re at the doctor’s office so frequently, having that right up as that backup is just really helpful to have as your you know, second brain when I go to the doctor, you know, people who live with brain fog symptoms, having that backup brain is a really good way to help you advocate, I’m so glad that you had that experience of knowing what works for you and what doesn’t.
Nicole 07:00
It was definitely a lot of trial and error. And I was fortunate that I found a headache specialist and provider I connected with but a lot of people just given the shortage of headache specialist people are fortunately have to stick with one provider or unfortunately, people have to stay with a provider who they might not connect with as well. And you see that provider only a handful of times per year. So like bringing these notes is really helpful, especially when providers aren’t as accessible either on phone or through mychart or whatever online portal, I have like a little section for each doctor in my notes app. And every time I think of something I add it.
Sarah Shaw 07:35
Oh that’s smart. That’s really smart how you have it split up that way. You know being migraine patients brain fog is one of those symptoms. So having our backup brain our phones, our notes is helpful and can make these appointments go smoother and are better in terms of getting the care that you deserve. And I wanted to note about your comment about the lack of headache specialists in the country. And we note that that’s a huge issue for people that don’t have access to or close by to a headache specialist. And so sometimes people end up seeing a neurologist or a primary care doctor even to get the care and sometimes things fall short. I want to go back to something that you said about friends and unfortunately like losing friends along the way to your migraine attacks. And I think a big component of there being like this misunderstanding of how serious you know living with chronic migraine or just migraine attacks in general are there is this huge stigma attached to it. And so when we don’t have loved ones or family or friends, I understand that that can cause a rift and I know that it’s difficult I fortunately have gone through something very similar. And in terms of stigma, though, you advocate a lot in the migraine community, what are some tips you have for breaking through that stigma that is you know, attributed to migraine being quote unquote, just a bad headache.
Nicole 08:57
Thank you for bringing that up. And I think it’s really interesting because I’ve noticed it’s easier for me to advocate with other people and even advocate with Headache on the Hill than it is sometimes with my own family and friends. And so first I want to acknowledge how hard it really can be to advocate for yourself around your loved ones. I think one place to start would be sharing your story because like you mentioned people don’t realize how disabling and impactful migraine can be and a lot of my friends and family did not realize that migraine impacts my entire body they didn’t realize it’s a full body disease and by sharing the symptoms I experience that gave them an entirely different perspective.
Sarah Shaw 09:42
What are some examples of you sharing that with your friends? Like is it just conversations that you have with them over the phone is it like you know, linking them to your Instagram advocacy account? Like I know for me like a lot of it has been like me being quiet and being like, Oh yeah, by the way. This is what I do and then being like, oh my gosh, I didn’t realize it was that serious? Have you found that that’s similar for you?
Nicole 10:06
Oh, totally, I feel like that’s a very similar parallel to me. Oftentimes, when a friend will share or they’ve experienced a migraine attack, that’s when I will sometimes open up and share a bit more, because I feel like we have that shared experience. And then I feel like they already understand. Otherwise, I might be a little bit more cautious in how I bring up that I live with migraine and other chronic illnesses. And it’s partially to protect myself. And it’s partially because and I’m sure you understand this as well, it can be really exhausting to advocate and educate others sometimes. And I want to make sure I do it at a time when I really have the full energy and attention. And I also am always cautious when a new friendship is forming, it’s always hard to know when to introduce this. And that can be challenging. So oftentimes, if I have to cancel an event or plans, that’s when I’ll share or if they ask, Oh, sometimes people say you don’t look so great today. That’s when I’ll introduce that I live with migraine and explain a little bit more. So I’ll wait till the door feels a little bit open and then introduce more what’s going on.
Sarah Shaw 11:19
See, I understand I can relate to some of that in the very beginning until somebody like you said, like, oh, like are you okay? And I’ll say actually, and then that’s a perfect lead in into that, and also letting them know what they can do to help. For example, at a previous employer, the fluorescent lights in the offices were extremely triggering for me. And so I would work in the dark in my office and my boss notice, and they’re like, why are your lights off, and I explained, well, actually, I have this condition, the lights are very triggering. And she was like, Oh my gosh, like take out those lights, and let’s get you a warm lamp. And that was sort of like an opener into the different ways that migraine can like impact us. And then also like talking more about it with like co workers, family friends. Now I’m at a point where I do introduce myself as someone who lives with migraine, just let them know about me to begin with. But I also see the other side of what you’re saying of you know, sometimes it’s best to wait and see how things progress in terms of you don’t want that judgment to be put on you immediately. You know what I mean? Like in terms of that. And so having that spoken about later down the road sometimes makes sense in terms of your safety, in terms of work, or in terms of just in general letting people get to know you for you and outside of your chronic illnesses. So I definitely see what you’re saying Nicole
Nicole 12:45
Yeah, I definitely feel like how I present myself has been influenced by one of my former employers, actually. It’s interesting you mentioned about the fluorescent lights and how your employer reacted, because I had the exact opposite reaction. I was working in an open environment. And that makes it a little bit more challenging if I needed to work in the dark. But I had requested to take out the fluorescent lights directly above my desk. And I was declined. And it was not the right workplace for me. And I didn’t receive appropriate accommodations. And my health was it felt like it was shared with everyone there. And that was really unfortunate. And so I definitely feel like that has impacted how I present myself moving forward now, because I’m always afraid of the worst happening because the worst case did happen. But I also know that that’s not always going to happen. And I’ve had some really positive experiences afterwards. And so I’m trying to remember and put those in the front of my brain. And remember that moving forward. Yeah,
Sarah Shaw 13:45
that’s true. I think in terms of your situation, it can be scary. And it’s frustrating when people don’t find ways to help accommodate us to be the best version that we can be whether that’s at work, whether that’s at home. And I think stigma has a lot to do with that as well. I think the stigma that’s associated with migraine prevents us from getting to a better place. And I do know the migrane community, we’ve come a long way in terms of addressing you know what migraine is and educating people, employers family about it. And I think there’s a lot to way to go. Just the simple action of speaking up and sharing your story, like you mentioned goes a long way. And I want to transition us into the last question which is about you know, you’ve been on such a journey in terms of trying to get the best care and advocating and moving around to get better treatment. Taking a step back. What do you think motivated you or encouraged you to make these changes to in relation to your migrane attacks in terms of where you are today? A better path to treatment.
Nicole 14:52
I was really frustrated and upset with how suddenly my life did a basically 180 and I went from feeling really independent and living my life in my 20s, to suddenly feeling really dependent on my parents. And that was really scary, I was worried that I would be dependent on them for the long term. And while there is absolutely nothing wrong with that, with needing to have extra support and relying on family, friends, etc, I had recently graduated and I saw my friends living completely different lives than me, I realized that I could put my research background to use and see what other options were out there as I didn’t feel like at the time I was getting appropriate care from my providers. And that’s how I ended up with the providers I am with today. I also continue to spend time in therapy, which has really changed my mindset and I feel like was really essential to my success. And I still do have migraine attacks. I mentioned to you, Sarah today that we might need to reschedule because this morning was really challenging. And even right now I’m stumbling over my words and thoughts a little bit. And that’s a result of the migraine postdrome. But the preventative and abortive medications I’m on now have allowed me to get to a much better place where I have moved halfway across the country from where I originally grew up with my family who I was living with for a really long time. I now am in nursing school and doing really well. But I also manage my health full time. And I also want to point out that you can do everything right and still struggle. And that’s okay. Migraine impacts everyone differently. So the comparison game or like the pain Olympics has no purpose and some medications people respond to better than others. And that’s just unfortunate. Yeah,
Sarah Shaw 16:48
I think we’re all different in terms of where we come from, like you said, how we respond to things. But I think what is similar between all of us is just the strength, I think in terms of being someone who’s living in pain and having to go through trials to get better access to care. And you are one of those examples of never giving up, keep having to advocate, knowing to not settle for less, which is very common. And I think you are a great example to lead the way for maybe someone who isn’t diagnosed yet with migraine hears your story or sees your social media and a light bulb goes off in their head and they’re like, I should bring this up with my doctor about my care, or I can advocate for better treatment. And I think that’s the power of community and the power of advocacy. And Nicole, I just want to thank you for coming on the show today sharing your story sharing, you know, the roller coaster rides of a person living with pain, and it’s been a pleasure talking to you.
Nicole 17:46
Thank you so much, sir. I really appreciate you inviting me on the show and talking with me today.
Sarah Shaw 17:51
Thank you for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you have any questions, thoughts or suggestions for us, you can send us an email at [email protected] If you liked this episode, please give it an honest five star rating write a positive review and spread the word by sharing with your friends and family. It’ll help more people like you find us. I’m Sarah Shaw and I will see you next time.
Narrator 18:20
Be inspired, supported and empowered. This is the global Healthy Living Foundation Podcast Network.
In this special episode of Talking Head Pain, Sarah is joined by colleagues Kelly Gavigan and Eric Stone as they delve into the nuances of episodic migraine care. They discuss GHLF’s UpEnd Migraine Project, which aims to enhance health care provider education in primary and emergency care settings for better migraine management. Through a conversation that spans personal experiences and the project’s objectives, the episode sheds light on the challenges and opportunities in treatment for those living with episodic migraine.
If you are a health care provider or a patient living with episodic migraine, make sure to listen to the episode and participate in our survey. This will help more patients like you, get diagnosed and on proper treatment.
Healthcare, Nurse & ER Practitioner Survey: https://www.research.net/r/FBDYLHM
Episodic Migraine Patient Survey: https://singuser0bd3f30c.iad1.qualtrics.com/jfe/form/SV_0OGZIOGI0mmtMsm?Source=Ext
Migraine Matters: Enhancing Care Through the UpEnd Project
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Sarah Shaw 00:10
Welcome to this special episode of talking head pain, the podcast that confronts head pain head on. I’m your host, Sarah Shaw, Associate Director of Diversity, Equity and Inclusion and Community Outreach at the Global Healthy Living Foundation. I have been living with chronic migraine for almost 10 years, and I’m very open about navigating life with my chronic disease journey, as well as my experience living with anxiety. This podcast will be a window into other patients lives as they navigate their own journeys living with chronic pain, migraine and mental health. And I’m really excited for today’s special episode of Talking Head Pain. I’m joined by two of my colleagues, Kelly Gavigan, Chief Data Management and Analytics Officer and Eric Stone Manager of Learning Experience Design. Kelly and Eric, welcome to the podcast. How are you doing today?
Kelly Gavigan 01:05
Hey, Sarah. Great. Thanks for having me.
Erik Stone 01:08
Hi Sarah. Yeah, super excited to be here today. Awesome.
Sarah Shaw 01:11
I’m really excited to have you guys on and have you as special guests. And for those of you if you’re new to the podcast, we talk about all things migraine and head pain from recent migraine news and research to sharing patient stories. We do it all. But what we haven’t done yet is cue our listeners in to the important migraine work that we do. Which leads me to Eric and Kelly being on the show today. Kelly, why don’t you tell us a little bit about the Up End Migraine project that we’re working on together? Sure.
Kelly Gavigan 01:38
Thank you, Sarah. So the goal of our UpEnd migraine project is to better understand the educational needs of healthcare providers, especially in the primary and emergency care setting related to how they treat episodic migraine. And now episodic migraine is when a person has up to 15 Headache days per month, so any more than that would be considered chronic migraine. And the surveys in this project, which are phase one of the project are to help us identify where the need is in improving care of episodic migraine. So for this, we created two surveys. One is a patient survey, and one is a survey for health care providers. And we use the American headache society guidance on treating adults with migraine as the basis for the survey questions. So we wanted to basically better understand the disconnect between providers who provided care that followed the guidance versus providers who did not. And then from a patient perspective, what is their treatment and care look like when their provider follows the guidance versus not. And then the results of these surveys will then be used to develop education for healthcare providers that we’ll be pushing out in phase two of the project.
Sarah Shaw 03:03
Thanks so much Kelly, for you know, doing a deep dive into this project. I think it’s really important because I feel like the last few years a lot of focus has been on chronic migraine, which is me. I’m a chronic migraine patient I have over 15 Headache days or more a month. But what about those that live with less than or maybe someone that has one to three headache days? How are they getting treatment? Are they getting the appropriate care? And Eric, as someone who lives with episodic migraine, can you share your thoughts on why a project like this is important for the episodic migraine community? Yeah,
Erik Stone 03:37
of course, Sarah, as an episodic migraine patient myself, I definitely felt a responsibility to ask the right questions and know what the right things were to say to my doctor in order to get the treatment that I felt I deserved and needed, but the reality is that that responsibility actually falls mostly on the health care providers. And what we’re trying to capture with this survey is really where that disconnect is happening so we can improve the diagnosis and treatment journey for everyone with episodic migraine.
Sarah Shaw 04:06
Thanks for sharing your experience, Eric. And just to hone in on just the importance of why we’re focusing on healthcare providers such as healthcare practitioners, nurse practitioners, and ER is not everyone has access to a specialist such as a neurologist or a headache specialist. And so being able to equip our physicians who most likely see episodic migraine patients more is just going to help a ton and being able to get people treated for something that they may not think is a problem you I think there’s a lot of people out there living with episodic migraine that might not even know that what they have is not normal. And so if a survey like this is so important, and then the phase two of pushing up the educational resources, I know is going to make a huge impact in so many people’s lives. So I’m really excited to roll this out to the community. As we wrap up here. We actually have a way that you the listeners can help us make change for those living with migraine attacks. As Kelly mentioned, part of the up end project involves surveys and as a team, we’ve created two surveys, one for episodic migraine patients and one for healthcare and nurse practitioners. We’re going to provide the links to these surveys today on the podcast, and we’ll include them in the show notes so you can share them with your communities. You can find the show notes on Talking Head Pain.org or under episode description on Spotify, Omny, or Apple podcast, Kelly and Eric, it was so fun to have you behind the mic day and give people a peek into some of the migraine work that we’re doing. Thanks so much for coming on the show.
Kelly Gavigan 05:36
Thank you so much, Sarah, for having us.
Erik Stone 05:38
Yeah. Thank you so much, Sarah.
Sarah Shaw 05:41
Thank you for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you have any questions, thoughts or suggestions for us, you can send us an email at [email protected] If you liked this episode, please give it an honest five star rating, write a positive review and spread the word by sharing with your friends and family. It’ll help more people like you find us. I’m Sarah Shaw and I will see you next time.
Narrator 06:09
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this special episode of Talking Head Pain, recorded live at Headache on the Hill, Sarah brings together a diverse group of patient advocates to share their personal stories and reasons for advocating for migraine awareness and better treatment access. The episode delves into the importance of advocacy, the need for improved health care policies, and the power of sharing one’s story to break the silence and stigma surrounding chronic migraine.
Join Sarah and her guests for an inspiring episode that highlights the collective effort of the migraine community to make a lasting impact on the hill and beyond.
Championing Change: A Conversation with Migraine Advocates at Headache on the Hill
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Erica 00:10
Both of our kids have migraine, too, and so with them living with the different types of migraine they have that are different from my kind of migraine and we do it for them.
Steven 00:17
Yeah
Erica 00:17
At the end of the day,
Steven 00:18
And it makes us feel better that we’ve gone through this so that way, we kind of know what avenue they’re gonna go through, and we can help them later on in life as well.
Sarah Shaw 00:27
Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host, Sarah Shaw, Associate Director of Diversity, Equity and Inclusion and Community Outreach at the Global Healthy Living Foundation. I have been living with chronic migraine for almost 10 years, and I’m very open about navigating life with my chronic disease as well as my experience living with anxiety. I’m here at Headache on the Hill and I have been chatting with a number of peers today. And I’m here with Sophia, a first time patient advocate for Headache on the Hill. So important to step up for Sophia today. Sophia, why is Headache on the Hill so important and why is advocacy important to you?
Sophia 01:05
Yeah, I’m so excited to be at Headache on the Hill for the first time because I’m representing not only my own story, but also my mom, who can’t be here today. She basically had severe migraines all of her life to the point where she had to quit her job, and it was really heartbreaking seeing her have to choose between her work, her life, and raising me, her child. So when I started getting migraines, myself, I had a lot of internalized anger and just fears around what happened. And I started realizing once I start telling my own story, how vitalizing and how open that makes everyone else open so that instead of all of us feeling like we’re suffering in silence, that we can actually come together as a community and make the world a better place.
Sarah Shaw 01:54
You put that so perfectly about being the one to kind of break the cycle and break the silence, to let others know – not even just other people in the world, but your own family members know – that it’s okay, and we’re going to get through this together. And I think that’s really what not only just this event, but what all migrant advocacy events are about: breaking the silence, reducing the stigma and letting others know that you’re not alone. Sophia, I’m really excited to be here advocating with you today on the Hill. And just so happy that you could join us for the podcast.
Sophia 02:22
Thank you so much!
Sarah Shaw 02:23
And we’re now joined by another patient advocate to D’Sena. D’Sena, same question: why Headache on the Hill? Why is advocacy so important to you?
D’Sena 02:31
Well, advocacy is important because people need to know that our headaches are more than just a headache. It is a migraine; it is a disease and things like step therapy need work. We can’t just go through all of these migraine treatments and then expect to hopefully get the drugs that we need to treat our migraine. So that’s why I came to advocate for migraine.
Sarah Shaw 02:56
Thank you to D’Sena. That’s such an important thing, step therapy. I feel like everyone listening to the podcast, myself, we’ve all been through – a lot of us have been through – this process of trialing medications that don’t work for us. And it would just be so much easier if we had a straight shot to these newer, better medications that are catered specifically for migraine. You know, instead of having to wait months trialing a medication or for some people, even yours to get to feeling better. D’Sena I look forward to advocating together with you today. And I’ve been meeting a lot of other advocates here at Headache on the Hill. So I’m now welcoming two guests with me: patient advocate, Erica and her husband Steven. Erica has been attending Headache on the Hill for about four years now. And this year, she’s brought along her husband, Steven, which is his first Headache on the Hill in person. Erica, why is an event like Headache on the Hill important to you?
Erica 03:45
2020 was my very first Headache on the Hill. And I remember coming and it was just such an amazing experience. And today we heard someone talk about their experience with their first Headache on the Hill. I had a job in government contracting. And when I came and visited different congressmen it gave me that same sense of purpose. I loved my job working for the government, and this felt like the same thing to me. It was that service but this time I’m speaking for people who can’t speak for themselves or don’t ever have the opportunity to do so. So doing something like this is really important to me and I’m really excited to bring my husband to this week because I want him to see what that’s like, experience that for himself because he’s never been to something like this.
Sarah Shaw 04:26
Yeah, I can’t explain the feeling, Erica, of just like being in closeness to people that are like us and then having our partners like witness this as well. you know? This is the magic that’s like happening behind the scenes. I do that with my partner, Tara. She comes with me every year and just having that support system with them experiencing it is so amazing. And now I want to turn the mic over to Steven, Erica’s husband. Steven with this being your very first Headache on the Hill, I heard Erika say a little bit about it. But why is it important to you?
Steven 04:54
It’s important to me because it’s important to Erica and migraine is now part of our lives. I remember when she stopped working. She would cry and she wanted to know, you know, like, what am I going to do now what’s what’s going to happen. And I said, we’re just one day at a time, one step at a time; we’re going to try to figure this out. We’re going to, you know, try different medications, different doctors, whatever we needed to do to get her better. And then when she found that she could be an advocate, I mean, she jumped on that so fast. She’s just a real big hustler, a lover of work. And this has definitely – has been a love for her. So being able to help people and to know that she’s not alone was a big deal for her. And anything that she’s involved, I definitely want to be involved in and help her in any way that I can.
Sarah Shaw 05:42
My heart loves that. I think everyone listening loves that as well, just being able to support your loved one, and just be there for them. And you are now part of the migraine family. So it’s part of the journey and part of the experience. I want to thank the both of you for all the work that you’re doing not only here, but also on the ground and virtually behind the scenes as well. I think it’s so important that obviously does not start and finish with just one of these events. It’s a like a lifetime of work.
Erica 06:07
It really is like both of our kids have migraine too. And so with them living with the different types of migraine they have that are different from my kind of migraine, and we do it for them.
Steven 06:15
Yeah.
Erica 06:15
At the end of the day.
Steven 06:16
And it makes us feel better that we’ve gone through this so that way, we kind of know what avenue they’re gonna go through. And we can help them later on in life as well.
Sarah Shaw 06:24
That’s – to have that – it’s almost like instructions. Maybe it’s not like the exact how to do it. But at least you’re left with like crumbs and steps like leading you to the big pile of information just to be able to have that for your kids. I think it’s so important and a big part of why all of us are here doing what we do. So thank you so much for everything today and behind the scenes.
Erica 06:41
Thank you!
Steven 06:42
Thank you for having us, appreciate it very much.
Sarah Shaw 06:43
And to conclude this special episode live from Headahe on the Hill, I want to turn to my last guest. She’s a patient advocate and it’s actually Becky’s first time at Headache on the Hill. Becky, why do you advocate? Why is it important?
Becky 06:54
I have been with migraine for most of my life. And I don’t want the younger population to have to deal with what I dealt with. I want to advocate for the younger population to get the meds that they need, and to get the research and the doctors that they need. I want them to have an easier time in the future.
Sarah Shaw 07:13
That’s so important. And I feel like events like this, we are kind of laying the pavement and the roads down for the next generation to come because if we don’t do it, who will? And I know that events like these and other advocacy events that other organizations are doing not just migraine, but, you know, across different chronic disease spaces are crucial and not having to go through step therapy of trialing medications that we know aren’t specifically created to treat migraine but have other effects. Maybe that will minimize, you know, disease burden that is going on, you know, patients like you other patients that are here. And I think it’s really powerful what we’re all doing here. I want to thank you for your advocacy and giving a voice to patients that maybe usually don’t have a voice
Becky 07:50
Thank you very much.
Sarah Shaw 07:52
Thank you for listening to the special episode of Talking Head Pain, the podcast that confronts head pain head on. If you have any questions, thoughts or suggestions for us, send us an email at [email protected]. If you enjoyed this episode, please give it an honest five star rating, write a positive review, and spread the word by sharing it with your friends and family. I’m Sarah Shaw live from Headache on the Hill, and I will see you next time.
Narrator 08:16
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this episode of Talking Head Pain, Joe is joined by Dr. Andrew Charles, Professor of Neurology and Director of the UCLA Migraine and Pain Program, as well as the current President of the American Headache Society (AHS). Together, they explore the groundbreaking updates in migraine prevention therapy, highlighting the AHS’s recent position on CGRP inhibitors as a first-line treatment. Dr. Charles shares insights into the development of these migraine-specific therapies, their efficacy, and the significant impact they have on patients’ lives, offering a glimpse into the future of migraine management.
Join Joe and Dr. Charles for a compelling conversation that shines a light on the latest advancements in migraine treatment and the positive changes they bring to the migraine community.
Breaking News: Discussing the American Headache Society’s New Migraine Prevention Guidance with Dr. Andrew Charles
Narrator 00:00
Be inspired, supported and empowered. This is the global Healthy Living Foundation Podcast Network.
Nahid Shukralla 00:10
When I graduated high school and I got two scholarships, one for arts and at the same time, I got a scholarship to study medicine. And my mom said, if you go into arts right now, it will be very difficult for you to get back into medicine. And when I graduated medical school, I did my residency in pathology. So I become a pathologist. And when things became really hard for me with health problems and chronic migraine, I decided, You know what, let me go back into art.
Sarah Shaw 00:47
Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host Sarah Shaw, Senior Manager of bipoc Community Outreach at the Global Healthy Living Foundation. I have been living with chronic migraine for almost 10 years and I’m very open about navigating life with my chronic disease journey as well as my experience living with anxiety. This podcast will be a window into other patients lives as they navigate their own journeys living with chronic pain, migraine and mental health. Today, we’re joined by Nahid Shukralla, a visual artist who lives with migraine. We’re gonna dive deep into her story about how she merged her migraine with her visual art. Hi, Nahid welcome to the podcast.
Nahid Shukralla 01:29
Hey, Sarah, thank you for having me.
Nahid Shukralla 01:31
I’m really excited to dig into your story and learn a little bit more about your amazing art. But let’s first start off with walking us through if you can remember what your worst like migraine attack has been
Nahid Shukralla 01:44
So I have many of those bad migraine attacks, and I’ve been to ER several times. But one migraine attack that always sticks with me that I can’t forget is when I was pregnant with my son. So I was in my early 30s. I was about six months or five months pregnant. And I’d developed severe migraine that for three days, I couldn’t move my head left or right because of the pain. And I had to stay home from work and couldn’t even fall asleep at night because of the pain couldn’t even lie down flat. And after two days. The third night I was just sitting in the bed and holding my head straight because I couldn’t move it. And at that point, my husband he woke up from sleep and he looks at me and I just the tears were pouring down my eyes because of the pain. And when he saw that he said, Okay, we have to take you to emergency room. And at that point, so we went to emergency room, They admitted me and the doctors were really puzzled what to give me for pain medication. The regular Angelica six didn’t help me, of course, Tylenol, ibuprofen and the being pregnant. That was a limitation of whatever medication they gave me. And whatever they could give me at that time they did and nothing worked. So even in the hospital three days, again, holding my head straight, can’t move it with severe pain until somebody came with a suggestion that maybe we’ll try anti histamine medication. Some of the literature mentioned that it’s second pregnancy. And if they give it IV rapid IV that might help. And that was the third day in the hospital. And when they push that IV n is just like everything brightened in my eye. And I’m like, Oh my gosh, I could move my head left to right. Wow. Yeah. So that was something that always stayed with me other than going to the emergency room being severe pain, but that particular you know, incident always stayed with me. Yeah,
Nahid Shukralla 04:05
for sure. Listening to your experience, it made me kind of think and reflect about, like the limitations and challenges of what being pregnant like people who are pregnant have to deal with the limitations of what they can and cannot be on when you are pregnant and just about making treatment safe and effective for people going through pregnancy and how difficult that must have been for you. You know, three days of not being able to move your head from left to right. You just have to keep it straight. Oh my gosh. Yeah, that sounds really awful and painful. I’m glad that you’re no longer in that space. Again. We’re going to touch on your migraine artwork in a moment. But I would love to know what drew you to art in the first place. Like how did you get into it? Walk us through that background?
Nahid Shukralla 04:53
Oh well, I was always into art. Since I was a kid. I would always be sitting with a pen and paper and just a sketching, drawing whatever it came in my mind and coloring pencil. Even if I was watching a TV show as a kid, I would have a sketchbook in front of me and I would paint. And as I got to high school, I had art teacher, that she was really impressed with my ability to paint. And she really encouraged me in that direction. So I became really better and better at the techniques. And the thing is that when I graduated high school, and that was in Bahrain, I was born and raised in Bahrain, I got a scholarship two scholarships, actually one for arts. And it was only two people at that time in Bahrain that got that scholarship, it was me and another person. And at the same time, I got a scholarship to study medicine. And I really had a passion to study in medicine. So I was like, in between the two, okay, what should I do, I love arts, and I love to become a doctor. And it was at that time that my mom advised me, she said, if you go into arts right now, it will be very difficult for you to get back into medicine. But if you go and study medicine right now, you can always go back to art. And I’m glad that I listened to her because that’s what happened that when I graduated medical school, I did my residency in pathology. So I become a pathologist. And when things became really hard for me with health problems, and chronic migraine, my daughter was born. So I have a son and my daughter. So when my daughter was born, and I found it very hard to practice full time. And with my chronic migraine, it was really difficult. So at that time, I decided, You know what, let me go back into art. And I went back to art and I joined private classes, and I went from there. Wow,
Nahid Shukralla 07:07
your journey is really interesting. And I think it kind of goes to show the way that we pivot and navigate when we’re faced with life’s challenges of being, you know, thrown like a chronic illness like chronic migraine. I know for me, I can kind of relate and like the same fence of thinking I was going to end up in a career so I did event planning for probably close to eight years. And it was a lot of really early mornings and late night events and that wasn’t working, my migraines had become more severe, kind of like you were you’re realizing you have to pivot. Yeah, and I just love how you were able to pivot in a way that still focused on migraine. And like now’s the part that I really want to dig into is I found you through Instagram and through your Instagram account where you bring your migraine Auras to life which I think is so fascinating because I feel like migraine Aras they’re talked about a lot but there’s not a lot of visual representation. I know when I first had my first migraine aura I didn’t realize it was a migraine aura I just kind of thought everybody like had these little like for me mine were kind of like snowflakes, it would be black and then I would just see white spots everywhere and I just assumed everybody was dealing with that and it wasn’t until like three or four years in when I learned about okay that’s an aura but there’s a lot of literature on it but there’s not a lot of visuals and that’s why I really love your account where you brought that to life. Can you talk about what inspired you to take what a lot of people will explain right a migrane aura is it happens right before you get the migraine attack so it’s kind of like a warning and how you turned it into these amazing visual art pieces. You know what light bulb went off for you? Yes
Nahid Shukralla 08:53
so as I told you I got into private classes and I started doing oil painting landscape is to lie pain the also acrylic and then you know I guess I always saw these auras but as you say, like I can relate to you I didn’t recognize them as such that these are auras or something that I’m seeing until you know my migraine got worse and I started getting treatment, Botox treatment and that when I noticed that okay, just before my migraine, I am seeing like different shapes and colors. And at that time, it was mainly bluish colors. It was really beautiful. They look beautiful moving like stars or a yellowish blue and being into art and studying all these different pigments. So I could relate to those colors at the time see, and then I started focusing more and more on them. Okay, what are these? And then I realized oh my gosh, these are auras before migraine attacks, I started to capture them at the beginning, just by coloring pencil on a sketch note in writing notes about them, then I progressed to painting them in acrylic in oil. So I had a big canvas in my basement that whenever I saw aura I would start painting it, so I did few of those paintings, then eventually, I realized, you know what, this is not making sense because migraine auras are moving shapes and colors, they are not static. So where would I capture what I saw, just for to give you an example, if it is a star that I am seeing the star moves in spirals, and it changes from big size to small size. If I’m painting, I can’t capture that, because I can just draw the star either big or small, even if I represent them in different shapes. Still, I can’t capture the movement, right? So I noticed that my son at that time, he was into sketching and painting and he got me this app procreate in, he told me, mom, maybe you should try this digital painting. So I had that on my computer for a while, but I could never find the time to dedicate and sit and learn that it was until January 2020. When I broke my feet.
Nahid Shukralla 11:34
Oh my goodness, you know
Nahid Shukralla 11:35
I broke two bones in my feet. So I had to stay home because my foot was in cast. And I thought you know what to pass time literally dig into digital painting. Let me see if I can master that or not. And I did. And for two months that I was home bound, I you know, practiced on my own looked on YouTube and basically self taught myself. I started at the beginning just to learn how to do landscape. And then eventually, I started painting my auras. And yeah, I saw them. And then I started animating them. And I said, Oh my gosh, this is a perfect medium. Finally, I can relate to the world, what I see, animate them the way I see them so that you know everybody else can see what we see and relate to it to the point I became so precise as to draw and animate my auras the way I saw them, which in the visual field, which quadrant of the visual field, I saw the aura is it upper quadrant, upper left or lower? Right, so I started doing all that. Wow,
Nahid Shukralla 12:49
that’s really amazing. Like you said that you broke both of your feet, you kind of took a negative, if I may call it that and turn it into a positive where you were able to actually slow down and like take the time to pour into this like beautiful representation, a symptom of migraine that isn’t noticed as much in a visual way. Right. And you’re absolutely right, you were talking about okay, I can paint my auras. But that isn’t a full representation of what an art is because it’s moving like you said, it doesn’t stay still and how has that been received? Like I know you were creating this art and then you put it on your Instagram account, what sort of feedback have you gotten from the migraine community about being able to visualize these auras?
Nahid Shukralla 13:35
You know, it was amazing feedback. I was surprised so I started by putting these on Instagram not knowing what will be the response but then I got encouraged because some people would say to me, they comment oh my gosh, this is exactly what I see. This is my most common aura Wow. So people can relate to these auras and you know, they can relate to it they seen the similar things and being from medical background like I searched the literature there is not much about auras written so I was really encouraged. So I started then as soon as I see the auras of course when I have pain I can’t draw I can’t do anything I have to be lying in bed dark till the pain goes away. So at the beginning I was just writing notes and then later on during the postdrum I would be sitting with my iPad and as you know during postdrome you know a person with migraine feels very exhausted and tired although the pain is gone, but the physical symptoms are still there. And I would sit with my iPad for hours just trying to animate what I saw in then when I posted on an Instagram people would comment that wow we didn’t know that migraine looks like that. And then I also had other comments, people saying that my teenage daughter can relate to your auras, she can see, you know, most of your painting, she can relate to them. And that really encouraged me. And by the end of the day at postdrome, I felt, okay, you know what I am putting my auras there, the day has not been wasted. With postdrome, we are still exhausted, can’t do much. But I feel productive by painting my aura by animating it and putting it out there helping other people make them feel that they are not alone. And they can relate to my art. Absolutely.
Nahid Shukralla 15:44
And even past like this idea and notion of productivity, us even dealing or working through our postdrum is doing something and you are able to do even more than that after you know you’re experiencing a migraine attack to help the community and dare I say like for people who don’t feel seen or represented or maybe don’t know how to describe to their doctor, what they’re experiencing now there is this visual template almost for people to be like, Oh, this is like what I’m experiencing. And they have a name. And they have a visual related to it. Because as we know, like, there’s this history of us being told or thinking it’s all in our heads. And because we don’t have like proof sometimes like this is something where you can be like, No, this is exactly what my migraine aura looks like. And you’re able to open up a dialogue and provide validation, I think for people. So I’m really, really grateful that your account exists and that it’s helping the community. And it’s just this visual representation that you’re absolutely right is missing. So I hope that researchers and doctors and other people in medical fields will look into your account and take the time to dedicate to the visual representation of auras. Yeah, I know, we’re coming down to the end. And so I like to kind of sort of end the episode where we talk about like mental health and self care. I know artwork is also a form of self care for people. Can you talk to us a little bit about what is your self care routine to make sure you’re taking care of you when you’re in the midst of dealing with a chronic illness like migraine. So
Nahid Shukralla 17:26
my name is strategy, I changed everything in life to make it easier for myself and for my family to deal with migraine and take care of myself open dialogue, as you said, with my family, you know, it’s very important. My husband is very supportive. My kids are very supportive of me, they understand by looking at me that I have migraine, and they let me take my time and rest. And I’m lucky alsothat I’m surrounded by friends who understand my disability, not every outing or every plan works, it can change all of a sudden because of migraine. So I’m lucky very lucky in that way. And the days that I’m really feeling down of course and have migraine, I can’t do much. But other days if I’m you know I’m feeling up to it, I go out I go for a walk I meet with friends. I think socializing is very, very important with chronic migraine because cancelling frequent plans, it really isolates a person first of all, is spending one whole day or two days in bed because of the pain and then the prodrome and postdrome that takes a toll on a person three days where you can’t meet other people, you can’t talk you can’t do your work. And now that the migraine is over, now you have tons of work to catch up and your friends and your family accommodating you and planning to meet your needs. That’s very important. So you know, I like to be frank with my friends that, okay, I have migraine, I can’t do this. Maybe we can schedule another day. And they are open to that and then so I don’t have to feel socially isolated all the time. So that helps a lot, going for a walk taking care of myself doing exercises when I can sitting with my iPad and painting I find that’s a big relief for me a big self care as I told you before that I feel that okay, the days were not wasted. I could do something for my migraine community and put my art there. So yeah, these are the main thing. Yeah,
Nahid Shukralla 19:46
You have an amazing catalogue of self care tips to kinda help you and I think we can all take I think society needs to take a page out of Nahids book in terms of being open with like our family and friends. and having a supportive community who understands us and meets us where we are and knows our limitations as to how we can engage after or during a migraine attack. I think having an understanding community and a support system is so beautiful. Yes. And I think more people in our community would benefit from that. And I just I hope that society, the more we do have conversations like this get help break that stigma. So I appreciate your support system. And just one note that rest absolutely is productive. And it’s essential to get us back to baselines.
Nahid Shukralla 20:35
Exactly.
Nahid Shukralla 20:36
Nahid. I want to thank you for coming on the podcast today sharing your story, and I look forward to seeing more of your art as you grow. So thank you.
Nahid Shukralla 20:46
Thank you so much for having me. It was really nice talking to you.
Sarah Shaw 20:51
Thank you for listening to this episode of talking had been the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating write a positive review and spread the word by sharing with your friends and family. It’ll help more people like you find us. I’m Sarah Shaw and I will see you next time.
Narrator 21:10
Be inspired, supported and empowered. This is the global Healthy Living Foundation Podcast Network.
In this episode of Talking Head Pain, Sarah is joined by Nahid Shukralla, a migraine patient and visual artist who uniquely intertwines her experiences living with migraine into her artwork. Nahid shares her journey and how chronic migraine led her back to her first love: art. Nahid also delves into her innovative approach to visualizing migraine auras through digital art, offering a rare glimpse into the visual phenomena that many with migraine experience but are seldom able to share. This conversation illuminates the therapeutic power of art, the importance of a supportive community in managing chronic illness, and how pivoting careers can lead to creativity and understanding.
Join Sarah and Nahid for an inspiring episode that bridges the worlds of art, medicine, and the lived experience of migraine, providing insights and validation for those on a similar journey.
From Medicine to Masterpiece: Nahid's Migraine Art Journey
Narrator 00:00
Be inspired, supported and empowered. This is the global Healthy Living Foundation Podcast Network.
Nahid Shukralla 00:10
When I graduated high school and I got two scholarships, one for arts and at the same time, I got a scholarship to study medicine. And my mom said, if you go into arts right now, it will be very difficult for you to get back into medicine. And when I graduated medical school, I did my residency in pathology. So I become a pathologist. And when things became really hard for me with health problems and chronic migraine, I decided, You know what, let me go back into art.
Sarah Shaw 00:47
Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host Sarah Shaw, Senior Manager of bipoc Community Outreach at the Global Healthy Living Foundation. I have been living with chronic migraine for almost 10 years and I’m very open about navigating life with my chronic disease journey as well as my experience living with anxiety. This podcast will be a window into other patients lives as they navigate their own journeys living with chronic pain, migraine and mental health. Today, we’re joined by Nahid Shukralla, a visual artist who lives with migraine. We’re gonna dive deep into her story about how she merged her migraine with her visual art. Hi, Nahid welcome to the podcast.
Nahid Shukralla 01:29
Hey, Sarah, thank you for having me.
Nahid Shukralla 01:31
I’m really excited to dig into your story and learn a little bit more about your amazing art. But let’s first start off with walking us through if you can remember what your worst like migraine attack has been
Nahid Shukralla 01:44
So I have many of those bad migraine attacks, and I’ve been to ER several times. But one migraine attack that always sticks with me that I can’t forget is when I was pregnant with my son. So I was in my early 30s. I was about six months or five months pregnant. And I’d developed severe migraine that for three days, I couldn’t move my head left or right because of the pain. And I had to stay home from work and couldn’t even fall asleep at night because of the pain couldn’t even lie down flat. And after two days. The third night I was just sitting in the bed and holding my head straight because I couldn’t move it. And at that point, my husband he woke up from sleep and he looks at me and I just the tears were pouring down my eyes because of the pain. And when he saw that he said, Okay, we have to take you to emergency room. And at that point, so we went to emergency room, They admitted me and the doctors were really puzzled what to give me for pain medication. The regular Angelica six didn’t help me, of course, Tylenol, ibuprofen and the being pregnant. That was a limitation of whatever medication they gave me. And whatever they could give me at that time they did and nothing worked. So even in the hospital three days, again, holding my head straight, can’t move it with severe pain until somebody came with a suggestion that maybe we’ll try anti histamine medication. Some of the literature mentioned that it’s second pregnancy. And if they give it IV rapid IV that might help. And that was the third day in the hospital. And when they push that IV n is just like everything brightened in my eye. And I’m like, Oh my gosh, I could move my head left to right. Wow. Yeah. So that was something that always stayed with me other than going to the emergency room being severe pain, but that particular you know, incident always stayed with me. Yeah,
Nahid Shukralla 04:05
for sure. Listening to your experience, it made me kind of think and reflect about, like the limitations and challenges of what being pregnant like people who are pregnant have to deal with the limitations of what they can and cannot be on when you are pregnant and just about making treatment safe and effective for people going through pregnancy and how difficult that must have been for you. You know, three days of not being able to move your head from left to right. You just have to keep it straight. Oh my gosh. Yeah, that sounds really awful and painful. I’m glad that you’re no longer in that space. Again. We’re going to touch on your migraine artwork in a moment. But I would love to know what drew you to art in the first place. Like how did you get into it? Walk us through that background?
Nahid Shukralla 04:53
Oh well, I was always into art. Since I was a kid. I would always be sitting with a pen and paper and just a sketching, drawing whatever it came in my mind and coloring pencil. Even if I was watching a TV show as a kid, I would have a sketchbook in front of me and I would paint. And as I got to high school, I had art teacher, that she was really impressed with my ability to paint. And she really encouraged me in that direction. So I became really better and better at the techniques. And the thing is that when I graduated high school, and that was in Bahrain, I was born and raised in Bahrain, I got a scholarship two scholarships, actually one for arts. And it was only two people at that time in Bahrain that got that scholarship, it was me and another person. And at the same time, I got a scholarship to study medicine. And I really had a passion to study in medicine. So I was like, in between the two, okay, what should I do, I love arts, and I love to become a doctor. And it was at that time that my mom advised me, she said, if you go into arts right now, it will be very difficult for you to get back into medicine. But if you go and study medicine right now, you can always go back to art. And I’m glad that I listened to her because that’s what happened that when I graduated medical school, I did my residency in pathology. So I become a pathologist. And when things became really hard for me with health problems, and chronic migraine, my daughter was born. So I have a son and my daughter. So when my daughter was born, and I found it very hard to practice full time. And with my chronic migraine, it was really difficult. So at that time, I decided, You know what, let me go back into art. And I went back to art and I joined private classes, and I went from there. Wow,
Nahid Shukralla 07:07
your journey is really interesting. And I think it kind of goes to show the way that we pivot and navigate when we’re faced with life’s challenges of being, you know, thrown like a chronic illness like chronic migraine. I know for me, I can kind of relate and like the same fence of thinking I was going to end up in a career so I did event planning for probably close to eight years. And it was a lot of really early mornings and late night events and that wasn’t working, my migraines had become more severe, kind of like you were you’re realizing you have to pivot. Yeah, and I just love how you were able to pivot in a way that still focused on migraine. And like now’s the part that I really want to dig into is I found you through Instagram and through your Instagram account where you bring your migraine Auras to life which I think is so fascinating because I feel like migraine Aras they’re talked about a lot but there’s not a lot of visual representation. I know when I first had my first migraine aura I didn’t realize it was a migraine aura I just kind of thought everybody like had these little like for me mine were kind of like snowflakes, it would be black and then I would just see white spots everywhere and I just assumed everybody was dealing with that and it wasn’t until like three or four years in when I learned about okay that’s an aura but there’s a lot of literature on it but there’s not a lot of visuals and that’s why I really love your account where you brought that to life. Can you talk about what inspired you to take what a lot of people will explain right a migrane aura is it happens right before you get the migraine attack so it’s kind of like a warning and how you turned it into these amazing visual art pieces. You know what light bulb went off for you? Yes
Nahid Shukralla 08:53
so as I told you I got into private classes and I started doing oil painting landscape is to lie pain the also acrylic and then you know I guess I always saw these auras but as you say, like I can relate to you I didn’t recognize them as such that these are auras or something that I’m seeing until you know my migraine got worse and I started getting treatment, Botox treatment and that when I noticed that okay, just before my migraine, I am seeing like different shapes and colors. And at that time, it was mainly bluish colors. It was really beautiful. They look beautiful moving like stars or a yellowish blue and being into art and studying all these different pigments. So I could relate to those colors at the time see, and then I started focusing more and more on them. Okay, what are these? And then I realized oh my gosh, these are auras before migraine attacks, I started to capture them at the beginning, just by coloring pencil on a sketch note in writing notes about them, then I progressed to painting them in acrylic in oil. So I had a big canvas in my basement that whenever I saw aura I would start painting it, so I did few of those paintings, then eventually, I realized, you know what, this is not making sense because migraine auras are moving shapes and colors, they are not static. So where would I capture what I saw, just for to give you an example, if it is a star that I am seeing the star moves in spirals, and it changes from big size to small size. If I’m painting, I can’t capture that, because I can just draw the star either big or small, even if I represent them in different shapes. Still, I can’t capture the movement, right? So I noticed that my son at that time, he was into sketching and painting and he got me this app procreate in, he told me, mom, maybe you should try this digital painting. So I had that on my computer for a while, but I could never find the time to dedicate and sit and learn that it was until January 2020. When I broke my feet.
Nahid Shukralla 11:34
Oh my goodness, you know
Nahid Shukralla 11:35
I broke two bones in my feet. So I had to stay home because my foot was in cast. And I thought you know what to pass time literally dig into digital painting. Let me see if I can master that or not. And I did. And for two months that I was home bound, I you know, practiced on my own looked on YouTube and basically self taught myself. I started at the beginning just to learn how to do landscape. And then eventually, I started painting my auras. And yeah, I saw them. And then I started animating them. And I said, Oh my gosh, this is a perfect medium. Finally, I can relate to the world, what I see, animate them the way I see them so that you know everybody else can see what we see and relate to it to the point I became so precise as to draw and animate my auras the way I saw them, which in the visual field, which quadrant of the visual field, I saw the aura is it upper quadrant, upper left or lower? Right, so I started doing all that. Wow,
Nahid Shukralla 12:49
that’s really amazing. Like you said that you broke both of your feet, you kind of took a negative, if I may call it that and turn it into a positive where you were able to actually slow down and like take the time to pour into this like beautiful representation, a symptom of migraine that isn’t noticed as much in a visual way. Right. And you’re absolutely right, you were talking about okay, I can paint my auras. But that isn’t a full representation of what an art is because it’s moving like you said, it doesn’t stay still and how has that been received? Like I know you were creating this art and then you put it on your Instagram account, what sort of feedback have you gotten from the migraine community about being able to visualize these auras?
Nahid Shukralla 13:35
You know, it was amazing feedback. I was surprised so I started by putting these on Instagram not knowing what will be the response but then I got encouraged because some people would say to me, they comment oh my gosh, this is exactly what I see. This is my most common aura Wow. So people can relate to these auras and you know, they can relate to it they seen the similar things and being from medical background like I searched the literature there is not much about auras written so I was really encouraged. So I started then as soon as I see the auras of course when I have pain I can’t draw I can’t do anything I have to be lying in bed dark till the pain goes away. So at the beginning I was just writing notes and then later on during the postdrum I would be sitting with my iPad and as you know during postdrome you know a person with migraine feels very exhausted and tired although the pain is gone, but the physical symptoms are still there. And I would sit with my iPad for hours just trying to animate what I saw in then when I posted on an Instagram people would comment that wow we didn’t know that migraine looks like that. And then I also had other comments, people saying that my teenage daughter can relate to your auras, she can see, you know, most of your painting, she can relate to them. And that really encouraged me. And by the end of the day at postdrome, I felt, okay, you know what I am putting my auras there, the day has not been wasted. With postdrome, we are still exhausted, can’t do much. But I feel productive by painting my aura by animating it and putting it out there helping other people make them feel that they are not alone. And they can relate to my art. Absolutely.
Nahid Shukralla 15:44
And even past like this idea and notion of productivity, us even dealing or working through our postdrum is doing something and you are able to do even more than that after you know you’re experiencing a migraine attack to help the community and dare I say like for people who don’t feel seen or represented or maybe don’t know how to describe to their doctor, what they’re experiencing now there is this visual template almost for people to be like, Oh, this is like what I’m experiencing. And they have a name. And they have a visual related to it. Because as we know, like, there’s this history of us being told or thinking it’s all in our heads. And because we don’t have like proof sometimes like this is something where you can be like, No, this is exactly what my migraine aura looks like. And you’re able to open up a dialogue and provide validation, I think for people. So I’m really, really grateful that your account exists and that it’s helping the community. And it’s just this visual representation that you’re absolutely right is missing. So I hope that researchers and doctors and other people in medical fields will look into your account and take the time to dedicate to the visual representation of auras. Yeah, I know, we’re coming down to the end. And so I like to kind of sort of end the episode where we talk about like mental health and self care. I know artwork is also a form of self care for people. Can you talk to us a little bit about what is your self care routine to make sure you’re taking care of you when you’re in the midst of dealing with a chronic illness like migraine. So
Nahid Shukralla 17:26
my name is strategy, I changed everything in life to make it easier for myself and for my family to deal with migraine and take care of myself open dialogue, as you said, with my family, you know, it’s very important. My husband is very supportive. My kids are very supportive of me, they understand by looking at me that I have migraine, and they let me take my time and rest. And I’m lucky alsothat I’m surrounded by friends who understand my disability, not every outing or every plan works, it can change all of a sudden because of migraine. So I’m lucky very lucky in that way. And the days that I’m really feeling down of course and have migraine, I can’t do much. But other days if I’m you know I’m feeling up to it, I go out I go for a walk I meet with friends. I think socializing is very, very important with chronic migraine because cancelling frequent plans, it really isolates a person first of all, is spending one whole day or two days in bed because of the pain and then the prodrome and postdrome that takes a toll on a person three days where you can’t meet other people, you can’t talk you can’t do your work. And now that the migraine is over, now you have tons of work to catch up and your friends and your family accommodating you and planning to meet your needs. That’s very important. So you know, I like to be frank with my friends that, okay, I have migraine, I can’t do this. Maybe we can schedule another day. And they are open to that and then so I don’t have to feel socially isolated all the time. So that helps a lot, going for a walk taking care of myself doing exercises when I can sitting with my iPad and painting I find that’s a big relief for me a big self care as I told you before that I feel that okay, the days were not wasted. I could do something for my migraine community and put my art there. So yeah, these are the main thing. Yeah,
Nahid Shukralla 19:46
You have an amazing catalogue of self care tips to kinda help you and I think we can all take I think society needs to take a page out of Nahids book in terms of being open with like our family and friends. and having a supportive community who understands us and meets us where we are and knows our limitations as to how we can engage after or during a migraine attack. I think having an understanding community and a support system is so beautiful. Yes. And I think more people in our community would benefit from that. And I just I hope that society, the more we do have conversations like this get help break that stigma. So I appreciate your support system. And just one note that rest absolutely is productive. And it’s essential to get us back to baselines.
Nahid Shukralla 20:35
Exactly.
Nahid Shukralla 20:36
Nahid. I want to thank you for coming on the podcast today sharing your story, and I look forward to seeing more of your art as you grow. So thank you.
Nahid Shukralla 20:46
Thank you so much for having me. It was really nice talking to you.
Sarah Shaw 20:51
Thank you for listening to this episode of talking had been the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating write a positive review and spread the word by sharing with your friends and family. It’ll help more people like you find us. I’m Sarah Shaw and I will see you next time.
Narrator 21:10
Be inspired, supported and empowered. This is the global Healthy Living Foundation Podcast Network.
In this episode of Talking Head Pain, Sarah is joined by chronic migraine patient Taylor, to explore the intricacies of living with chronic migraine and navigating the health care system. They discuss the evolution of emergency care for migraine patients, the shifting landscape of migraine treatment, and how living in pain can affect our mental health. The episode also touches on the critical role of patients in treatment decisions, the stigma surrounding migraine, and how just being fine, is not fine when it comes to patient health.
Join Sarah and Taylor for a heartfelt conversation that underscores the importance of support, understanding, and advocacy in the migraine community.
From Darkness to Light: Advocacy and Innovation in Migraine Care with Taylor
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Taylor 00:10
I have had a major improvement in my baseline now compared to where I was five or six years ago, a lot of that has come from just the huge advancements and treatment options that have become available in recent years. I was kind of ready to give up. I was like, I think I’m out, I might just have to get used to living with this kind of pain. I had tried probably like 15 to 20 different medications by that point. But when I had the opportunity to try these new treatments, I was like, let’s do it. Sign me up. Nothing else worked before like might as well see if any of these do.
Sarah Shaw 00:49
Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host, Sarah Shaw, Senior Manager of BIPOC Community Outreach at the Global Healthy Living Foundation. I have been living with chronic migraine for almost 10 years, and I’m very open about navigating life with my chronic disease journey as well as my experience living with anxiety. This podcast will be a window into other patients lives as they navigate their own journeys living with chronic pain, migraine and mental health. And I’m joined today by Taylor, who has been living with chronic migraine for over 10 years now. Taylor, welcome to the podcast.
Taylor 01:25
Thank you so much for having me.
Sarah Shaw 01:27
I like to start off the show by asking people what’s been their worst migraine attack and walk us through that.
Taylor 01:34
Oh, gosh. Well, I feel like any migraine attack that ends in the hospital, you know, ER is a bad one. I’ve had a number of those. But I think probably the scariest worst attack I ever had was one where I really couldn’t tell if it was a migraine or a stroke, which generally good advice I’ve received is in that case, you definitely want to go get checked out. But you know, I had the whole like drooping on one side, I could barely get my words out. The pain was so intense that it just felt like being in another dimension. And fortunately, my nausea has really improved in recent years. But at that period of time, I had some major GI symptoms as well. So that was a rough one. And then unfortunately, sometimes going to the ER is a problem in itself. It’s not exactly a pleasant experience. I kind of just found a white knuckle my way through that one.
Taylor 01:34
Yes, I have been to the ER once and only once for migraine and just will not go back just because of the experience. And we talk on the podcast a lot. I think every other person talks about how the ER is not a good place for people with migraine. It’s very loud, there’s bright lights happening. It’s not a good environment when you’re someone who just wants to curl up into a ball and be in the dark. Right? Exactly.
Taylor 02:55
Yeah, I was just there Friday, not nearly as bad as an attack, but just kind of trying to deal with a flare and was so fortunate that it felt like the hospital staff I was working with was a little more aware, they offered to turn the lights off for me if they had to turn them on, they gave me like a washcloth I could put over my eyes, they were much more like migraine literate. And I think that kind of has something to do with what we’re talking about today.
Sarah Shaw 03:21
So I was gonna say the same thing. I think we’ve come a long way. And I’m gonna get into this a little bit later on the podcast about stigma, as you know, I’m going to talk about it now because it kind of flows into the conversation, right? You were mentioning about the difference between the worst migraine attack that you had where you were at the ER to one that unfortunately, we’re just at the ER recently but had a better experience. And it’s the little things like you said putting a washcloth like over your head like them letting you know when they’re gonna turn on the lights and whatnot, just those little changes, speaking quieter, putting you in like in your own room, those make a difference then also being educated on what are the newer and better like migraine treatments to be on versus what has been done, you know, 20 30 40 years ago. And so I think there’s still a long way to go but I do see an improvement. And speaking of stigma and knowing that you’ve been living with migraine for over 10 years now, what are some tips that you can share in terms of helping break that stigma that is put on you know, the word migraine and like it being not just a bad headache?
Taylor 04:27
Yeah, I would say that as much as it has been a journey to get to this place. Living your authentic self is really one of the best things that you can do. Sometimes I feel like there’s this instinct when you’re meeting new people, you’re in a new job, whatever the situation might be to try to hide and mask your pain, mask your symptoms and in a lot of ways I feel like they come back to bite you. I think especially socially, I’ve found it so helpful if I’m, you know, making new friends and connections, I’ll just say, hey, there might be times that I have to cancel our plans. If nothing personal, it’s not that I don’t like you, I love to hang out. But this is just my life might look a little different. And I found that people have been much more receptive to that than maybe the alternative of, oh, sorry, I’m not going to be able to make it today, you know, again, and again. And again. Yeah, and just by being honest, it allows us to make plans that are more conducive to, you know, whatever my threshold is, for stimuli. And same with jobs, too. That’s a I think, a little more scary, just because you never want to lose an interview and an opportunity. But I’ve just found in my more recent opportunities, when I was looking for a new job, I was moving whatever else, I really sought out employers that had something on their application or their website about being a disability friendly employer, and I was just upfront about it from the beginning. So I’ve know myself well enough now to have a pretty good idea of what my abilities are, what I bring to the table and really selling that the best that I can, but just also saying, and here are some things that I need. So yeah, it’s made a big difference just to own it the best that I can.
Sarah Shaw 06:21
That’s so encouraging. And I think exactly where we want all migraine patients to get to that point. And I know you mentioned it being scary, kind of, you know, like admitting that you live with a chronic illness that does impact your life. And you talking reminded me of something that happened at a previous employer where I was like, should I shouldn’t I should I talk about and it was this back and forth in my head. And I was like, you know, what do I have to lose, it’s better for me to talk about it now just to see how they’re going to react. And in it, I told them, I was like a migraine advocate and talking about how it impacts my life. And the first question out of her mouth was, well, does it impact your work, and right then and there, I was like, Okay, we’re gonna have an issue. Like, of just like you, you don’t get it. And I did work there. But there was just a lack of understanding and empathy versus like, where I work now at GHLF. And just this understanding of, okay, we know you have a chronic illness, we’ll make accommodations, I can work from home, I, if I need to lay down for 30 minutes while I take a medication to let myself feel better. That’s what I’m going to do. And that’s how I’m going to show up as my best self. And I think what you were saying really, really aligned with that. And that’s the goal. That’s what I want everyone to experience. And I think addressing stigma and having conversations like this is a big part of the puzzle.
Taylor 07:38
Yeah, I would completely agree and to what you were saying, if that gives you the kind of heads up that you need to know, oh, maybe the supplier is not going to be a good fit, or this relationship might be more superficial than I thought it was, or whatever feedback that you get is really useful information. Because at the end of the day, like we have to protect our health and our energy too.
Sarah Shaw 08:01
Absolutely and I just want to make a note when I said earlier, when they asked about oh will that impact your work? It does and it doesn’t. But what a lot of people get wrong is okay, we’re just not going to be good workers. And that is the furthest thing from the truth. Like I know if I need 30 minutes to 40. But that’s when my medicine kick in, I’m going to show up so much better at work and put my everything into it. I just need accommodations. And so I think that’s the understanding that I want to see happen in terms of people who live with just not even migraine, but like chronic illness in general. We’re such a valuable members of society who contribute to a lot, we just work differently. And if we’re able to navigate that with people magic can happen. I’m slowly starting to see it, like you mentioned, like having organizations talk about disability and stuff like that. That’s the little icon to know. Okay, this is a good place for us. I know from us chatting briefly. You’ve had to advocate to get your migraine care that you deserve. Do you mind sharing some ways that you’ve advocated that might be helpful to our listeners? Sure.
Taylor 09:06
I would love to start just by maybe painting a picture of the dire circumstances of where it began. Because I think this is just so relatable for most patients, when we’re kind of starting out completely in the dark, not even really understanding our own condition, what works, what doesn’t work, we are totally putting our lives in the hands of our care practitioners. And so you know, I had kind of started out and my just PCP like my general practitioners office trying the very basic most rescue medications. We didn’t really quite get into preventatives. That was the point where they decided like, oh, we should probably turn you over to a neurologist and the first provider that I saw was so old school. I mean, I feel like he just managed to avoid picking up a journal article. or, you know, watching a news story for years on migraine. And so she had the advice of, oh, just take these over the counter medications, these anti inflammatories, these things that we come to learn, the more that you deal with chronic migraine are just going to set you up for more problems in the long run. So I inevitably developed the rebound headaches, the medication overuse headaches, and the advice at that point was, oh, well, you’re taking it too much, we need to just stop this cold turkey. So I’m like what, you know, we’re going from take this the second you even think you have a headache going on to just avoid it completely. And it was devastating. I completely broke my trust with that provider. That was the point at which I decided to switch to another neurologist. And this was the sweetest guy, so willing to try new treatments, exhaust all the options, but I just wasn’t getting better. And I just I always have to tell the story to people because it’s just such a like pivotal moment in my migraine journey. I went to his office and was just, you know, I was in college, I was losing all my friends, I was making awful grades, my life was just completely spiraling out of control. And I’m emotional, I’m crying, he starts crying. And then two weeks later, I get a letter in the mail saying that he had left his practice. And so I’m thinking, Oh, no, did I just break him? What’s that mean? I’m sure it wasn’t but just looking back on where my patient journey started, I came to learn through those experiences. At the end of the day, it’s me, like my neurologists are gonna be the ones to write the prescriptions and help me move throughout my treatment. But I’m the one who has to keep this train on the tracks, I need to really kind of take responsibility as much as I can. And as difficult as that can be when you’re in the throes of migraine. So I began doing things like tracking my attacks and triggers and responsiveness to medication, the best that I could, so that when I went to my appointments, I had some good solid data to show anybody who has been part of this process and knows that you’re gonna get the questionnaire that asks you how many headache days a month rate the severity, there’s a lot of numbers. So if you have something that you can look back, and just kind of plug in that way, it’s so helpful. I also have taken it upon myself to try to educate myself the best that I can as a patient, you know, as lay people have very different levels of ability and understanding that kind of information compared to other providers. But I’ve done some really great webinars, you know, online courses, support groups, all these different kinds of things where I could just get an idea of the lay of the land, and I could show up to my appointments, ready to ask questions and ready to say, hey, this didn’t work out so well, might we be able to do this? Might we be able to do that? And then of course, there’s always the component of how do we pay for all these treatments. And so it might be that we have some kind of private commercial insurance, we might be working with some kind of government funded source, whatever that may be, you have to kind of get an idea of how it works. So that then you can help push things through when they get stuck. So that’s kind of an ever evolving effort. I think I have the kind of leg up right now of actually working for an insurance company. So that’s really helped me get the inside scoop on some of these things. But just educating for yourself and speaking up the best that you can becoming part of your treatment journey as an active participant.
Sarah Shaw 13:42
Taylor what I’m hearing is you really took the reins, and you are like fine or quote unquote, like where I’m at is not okay, like I deserve better, I deserve better treatment. And given that I think you mentioned you were on better treatment now. Or at least maybe you’re feeling better now versus where you were five, six years ago. Can you walk us through how you went through that with like your current provider. I know with me, like my headache specialist, and I go over like shared decision making, she’ll bring something up, I’ll bring up something. And we’ll come into the middle to find it an agreement of what will work for us, I’m just curious that you’ve experienced that.
Taylor 14:22
That is so promising to hear that more providers are starting to take that kind of approach and involving patients and making decisions for themselves, which makes a lot of sense. You know we really should at least have one hand on the wheel with them. As we’re kind of driving down that road. I have had major improvement in my baseline now compared to where I was five or six years ago. A lot of that has come from just the huge advancements and treatment options that have become available in recent years. And I was at a place right about that time where these were least started to become more accessible the different treatment option, I was kind of ready to give up the same way that I got that letter in the mail from my doctor that he was out, I was like, I think I’m out, I might just have to get used to living with this kind of pain. But that might just be my normal for the rest of my life. And that’s devastating, but also, in some ways feels more feasible than just the constant fight to try to get better and not see any improvement. So I luckily had kind of kept one foot in the migraine education space at enough that when I started to kind of hear the buzz about oh, have you tried this? Have you tried that there’s this new thing. That’s kind of where I was like, I think it’s time to go back to the drawing board. I had tried probably like 15 to 20 different medications by that point. And these were, you know, again, the more like old school off label, I think they kind of call them treatments where it wasn’t developed for migraine in most cases. Yeah. So they really are just throwing things at the wall and seeing what sticks. But when I had the opportunity to try these new treatments, I was like, let’s do it. Sign me up. Nothing else worked before, like, might as well see if any of these do.
Sarah Shaw 16:17
What do you have to lose? Right? I was at that place too. Exactly.
Taylor 16:22
Right. Yeah. And some treatments are more or less pleasant than others. So you kind of have to buckle up and just say, Alright, I know, this is what I’m getting into by trying new things. But you know, let’s give it a shot. So I’m so glad that throughout the course of like the transitions with my different neurologist, and everything that was happening on that, and I did still continue to see the same general practitioner that had initially given me the kind of like first line of defense prescriptions. And so they were always so empathetic and always so encouraging about let’s try to do whatever we can to just get you some relief. And so when some of these new treatments hit the market, that’s the first place that I went back to was my GP and I also had a huge benefit where his wife was a long time, chronic intractable, you know, I’ve had plenty of episodes that were intractable, but she was that was just her status quo. So she knew firsthand what it was like for her, she was able to start some of these new treatments saw a huge improvement. And so when I went to him and just said, like, Hey, this is where I want to try to take this. He was like, Absolutely, let’s do it. So he was able to help me access some of those right away and then as time went on more treatments came out, it was kind of like, okay, let’s get you back to neurology. I had a move since then. So unfortunately, he’s no longer my main general practitioner, but I’ve had some really fabulous other ones. And I’m also now working with a really great neurologist who is in the same mindset that I am, where any amount of pain that I’m experiencing is not okay, there’s no reason that I should be living that way. And so I could have the mindset where I’m like, Yeah, I’ve improved a lot, maybe this is as good as it gets. I’m kind of like no, like, I’ve seen what it’s like on the other side, you know, I’ve seen what it’s like to really have my life just changed so drastically. And I want more of that. And my neurologist is very much the same way.
Sarah Shaw 18:26
It’s so refreshing to hear for multiple reasons, Taylor, I’ll try to do this in order. One being that your general practitioner was kind of the link to wanting to like work, collaborate and like work together with you, as we know, number one, like there are not that many headache specialists in the US and there are not as many neurologists who have an understanding of migraine. And so looking at that right off the bat, where do people go they go either to the ER or they go to their primary care doctor and so having our primary care doctors educated about these newer medications and you being able to have a conversation with him. I know personally, whenever I go to see any primary care doctor, whether they’re new or old, I’ll list out my medications and there’s like What’s this for um I’m like that’s for migraine. What’s this? That’s for migraine too. Like having just even that is like a form of advocacy if I’m at least making some sort of impression to be like if you have any other migraine patients maybe mention you know these for them because there’s too many things out there that’s hard to keep track of and now like you said, we have this I don’t say plethora, but we have all of these newer treatments and medications that like you said you are responding so much better too and I was at a very similar point where I was at an old neurologist and I just started crying because I was just like, I can’t keep living this way. I can’t I was struggling at work. It was hard. It was difficult and just moving from that into seeing like my current neurologist where she’s like, we don’t care. We’re gonna try every single thing, just knowing that you had someone that’s not gonna give up on you makes like a huge difference. And I think you’re also like a testament to that as being the patient who tries their hardest to educate yourself about what’s going on, because unfortunately, there are too many things and being able to bring something to the doctor, like I remember when I first used the term CGRP to my neurologist, they were like look at you! And I was like, there’s more where that came from.
Taylor 20:17
Yeah, hit him with the monoclonal antibody or ever.
Sarah Shaw 20:20
It’s exactly I’m like, we can talk these terms all day, let’s go at it. But no, it’s important. It’s important to advocate it’s important to also knowing that migraine is an invisible illness that’s already heavily stigmatized as just a bad headache, or, Oh, it’s stress and all of these like terrible things that are associated with it. And then you add being like a woman or a non-binary person on top of that, you know, we’re batting out their having to go hard. And conversations like these are really important to help move the needle forward. You kind of touched on this, but what motivated you to make these more positive health outcomes? I know when we get to that dark place, like I suffer from anxiety and other mental health issues, like how did you get to the point where you were like, I deserve better? I deserve more.
Taylor 21:10
Yeah I was so I mean just incredibly depressed when I was at my lowest low with migraine. And I mean, like, you’ll see all the time like the inspirational like, Hey, you got out of bed today, you know, you took a shower, like that was very much true when I was just in full on survival mode. I think when you start to experience the really small successes, and the very little changes that give you some insight that life can be better. It’s like a snowball effect. It can be a really, really slow rolling snowball effect. But I found that you know, whatever it was that like little voice inside that just said, like, hey, this could be it listening to that starting to have more and more pain free or manageable days seeing such a huge reduction in my my nausea, and you know, the other kinds of symptoms that were so common for me with migraine, it was just like, I would have these little windows open up where suddenly like something was possible that wasn’t possible before. And we know with migraine lifestyle, and the choices that you make every minute of every day can play such a huge part in your condition. Absolutely. So yeah, it was things like finally having enough energy to make a good nutritious meal, instead of just pulling something out for the freezer or finding more ways to like incorporate movement into my routine, all these things where it was just like compounding factors to I felt a little bit better a little bit better, this change helped that change help. And so it was really hard to kind of like pull myself out of the deep dark hole at the beginning. But once I did, it was just so validating and encouraging to just keep going. And so when I find myself in kind of like a flare like I’ve been experiencing recently, I’ll be honest, the first reaction is always panic, right? I’m looking at my migraine tracker, I’m seeing this huge increase in days and severity and, you know, return of some symptoms I haven’t had in a long time and some patterns that I thought I’d kind of overcome. And so my brain just goes, mermermmer, you know, high alert like, we don’t want to go back to where we were before like that it’s unimaginable. I don’t know, honestly, how you know, me or anybody else that has gone through that experience makes it through, it’s just so soul crushing and awful to live through. But I kind of just keep reminding myself, if you can just get a couple more pain free days, if you can just get back to the point where you’re exercising a little more, it’s just kind of trying to keep that progress. And the same way that I almost had to like relearn how to be happy and how to feel good. Like when I was coming out of that really depressive state, I started going to therapy more then than I did when I was actually depressed because I had to learn how to let that go. It was something where I just was always waiting for the other shoe to drop up just living in that constant state of like, This can’t be real. This can’t be right. I can’t be feeling this good for this long. And it was really helpful for me to learn how to just reframe some of those super ingrained thought patterns that I was living in. So that’s just kind of the mentality I’ve tried to keep and how I tried to keep tackling these flares when they come.
Sarah Shaw 22:29
Absolutely, I appreciate what you shared and being vulnerable about like depression and talk about mental health a lot on the podcast and how pain such as migraine you know, whether it’s arthritis or whatever it how that impacts our mental health and having resources and tools in place to work alongside that are crucial but the reality is Being pain sucks. Like, I’m not going to sugarcoat it. And so anything that we can do to bring relief to patients, whether they’re migraine, arthritis IBD, you know, we want to do. So I just want to thank you for coming on the podcast, sharing your story, sharing your experience, and just letting us get a peek into your life. So Taylor, thank you so much for coming on.
Taylor 25:22
Yeah, it’s such a pleasure. And I would encourage anybody who has the opportunity to do the same, it’s only going to help me be a better advocate. So thank you so much.
Sarah Shaw 25:31
Thank you for listening to this episode of Talking Head Pain. The podcast that confronts head pain head on. This podcast was made possible with support from Lundbeck. If you have any questions, thoughts or suggestions for us, you can send us an email at [email protected] If you liked this episode, please give it an honest five star rating, write a positive review and spread the word by sharing with your friends and family. It’ll help more people like you find us. I’m Sarah Shaw and I will see you next time.
Narrator 26:03
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this episode of Talking Head Pain, Joe Coe welcomes Izac Ross, Founder of the Haven Headache & Migraine Center and a patient advocate. They delve into Izac’s lifelong journey with migraine, beginning with his childhood diagnosis and the challenges of dealing with the condition through various stages of life.
Izac discusses his experiences with a range of treatments, highlighting the transformative effects of newer therapies like CGRP inhibitors and Botox. The conversation also emphasizes the importance of not settling for subpar treatment, advocating for oneself in medical settings, and managing a career while coping with chronic migraine.
Izac Ross: A Life Shaped by Migraine, A Future Shaping Migraine Care
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Izac Ross 00:10
I think going back to that idea of finding balance in your life: it’s tough. And I’ve made mistakes along the way, especially in the early parts of my career and when I’m doing something that’s really exciting for me, I’ve over-indexed on work and ended up suffering the consequences of that and not having balance. So a practice that I’ve really started is operating way ahead of deadlines and pushing things much earlier and making sure I have someone who always knows what’s going on on my team, or in my orbit, who can sit in for me if something were to happen.
Joe Coe 00:49
I’m here today with Izac Ross, who has been living with migraine since he was a child. He is the founder of The Haven Headache Migraine Center, a new virtual-first clinic in California. You can also find him on Instagram by going to the handle @gaywithaheadache. How are you doing today, Izac?
Izac Ross 01:26
I’m doing good, recovering from a bit of a bad migraine weekend, but really glad to be on the podcast.
Joe Coe 01:33
So let’s jump in with that. It wasn’t a pre-planned question, but what did your migraine look like during the weekend?
Izac Ross 01:39
Yeah, so funnily enough, I was down in Southern California with the whole team all seven of us Haven Headache and Migraine Center. And it was just such an exciting week that I had the classic letdown headache when I came back on Sunday and just laid up in bed and had a few, unfortunately, my least favorite migraine symptom of throwing up. But doing much better now, and just that classic like migraine hangover, which I think for people without migraine is probably the best way of describing it. Like, you had eight drinks the night before and have to function the next day.
Joe Coe 02:13
Izac, I remember having migraine attack. I was in the hospital, not for me; I was visiting my grandmother, and the bright lights in the hospital triggered something and I felt really sick. And I said let me leave the hospital. I walked into town where the hospital was and went to a donut place to get a coffee. And I couldn’t speak; I lost my words, for a moment. It felt like a long time; it probably wasn’t. And when I was able to ask for the coffee, the person was looking at me like I was strange. And they’re like, what’s going on? And I was like, oh, I just had a rough night, you know, and I was like I was out the night before instead of saying I had migraine because this young barista would understand a hangover, but I didn’t feel like educating folks on aphasia and all the things that could happen with migraine. So I totally understand that feeling, Izac.
Izac Ross 03:04
That’s so real. I think that’s such a big part of the experience of having migraine and or any sort of disability that makes you a little different that’s invisible is experience of masking and figuring out how to navigate social situations when you’re not doing that great.
Joe Coe 03:19
Totally. So when we were talking before the podcast you shared with me a bit about your migraine history and being so young with migraine. Can you explain what that was like as a child living with migraine?
Izac Ross 03:32
Yeah, so I was diagnosed at age two, which was back in 1990. And getting diagnosed with pediatric migraine that early was really rare back then, but had some classic signs even before I was speaking that I was photo phobic very often outside, I was grinding my head into the carpet, crying and having excessive crying fits that my parents couldn’t figure out. And I was blessed with a genetic cesspool of two parents with migraine. So I was pretty hopeless to escape without it. But luckily we were living in UCLA at the time, which had and still does have one of the best pediatric neurology practices and got diagnosed as soon as I could really speak and articulate what was going on. But back then, like the triptans didn’t exist, like nothing existed really for rescue medications other than sort of some barbiturates and opioids and anti-seizure medications back then. But as a kid, that was really isolating, right. Socially, I could not do as much as my friends and my classmates and was out of school at least one day a week on and off during different years. I think everyone with migraine who’s a chronic sufferer knows that there are good years and bad years. There’s ebbs and flows in your condition. But very isolating and I was very lucky and not lucky to also have dyslexia severe enough that I was able to go to smaller special needs schools that were more catered than a standard public school. And that really helped me navigate and also, in some ways, learn to navigate and advocate for myself for both my dyslexia and my migraine because to be successful in college, and later in life, I had to learn how to do that pretty quickly.
Joe Coe 05:19
Thank you for sharing that part of your history. Let’s push forward to the current day and your personal experience pushing for what some call migraine freedom. I had a doctor on last week who discussed that concept or the idea of crystal clear days with migraine. Are you there? And if you are there, how did you get there?
Izac Ross 05:40
Yeah, I can’t say that I’m always there but I have months and like whole seasons, where I’m there and at Haven are kind of words for this are ‘more good days’, and how we talk about this and what we aspire for all our patients to have, because for a lot of folks, you know, complete remission is just not a thing. I think we’ll be getting there with some of the new treatments that are in the pipeline over the next five years. But we’re not there yet. But being completely changed in the last 15 years. For me, we talked about the ebb and flow of like good times and bad times. And I was really lucky to graduate college at a time right as Botox for migraine was finally FDA approved, and got it just as I was entering the workforce. And that was the first time where I experienced the crystal clear days a lot more often and had a great sort of six years up until 2016 when I had another sort of setback or bad year and ended up in the ER with one of the worst headaches I have had since I was a kid. And from that point ended up with a daily status headache that just would not go away, which modulated between a low grade and a high grade migraine. And there was a gap between 2016 and 2018 when the new class of CGRP meds came out where I was trying everything, where I tried ablations of the occipital nerve. I tried DHE hospitalizations, which temporarily broke this headache, but nothing really helped until these like miraculous drugs. I know they don’t work for everyone but I was very lucky to get on the first CGRP inhibitor very early, I think in June of 2018. And it took about three months to fully get working. But once it was working, it really broke that headache and got me back to having the crystal clear or ‘more good days’ feeling and that medication plus me being very lucky to also be able to access Botox at the same time, changed my life completely, it was the most clear days I’ve ever had and the longer I’ve been on it with some exceptions, the trajectory has been pretty good. There’s been bad months, but my overall pathway has been great. And I’ve been able to do things that I’ve always wanted to do, which just weren’t possible before. A great example of this is like I did AIDS Lifecycle, which is a bike ride from San Francisco to LA. If I were to do that before the CGRP meds I would have triggered a migraine if I was just mildly dehydrated. And I would experience that on that ride. And I have been able to be more social, I learned that I’m actually an extrovert, where turns out it’s just my migraines that make me an introvert and able to do things like go to 30 music shows a year, which is my passion, and like not miss – for the most part – the shows I want to go to. They’ve really just completely changed my life and really want to spread that to more people.
Joe Coe 08:49
It’s amazing. What were some of the highlights of the shows that you went to in the past year?
Izac Ross 08:53
Oh my gosh, okay, Beyonce, first off, that was amazing. And then my true diva is James Murphy of LCD Soundsystem. I’ve seen him twice this year. Just amazing. And Janelle Monae.
Joe Coe 09:06
I see your vibe really. That’s really important that we find things that brings us joy and that we don’t settle so we can experience that. And that ties into my next question. Why do you advocate for people and yourself to not settle for subpar treatment and to find the right treatment plan for them or for you?
Izac Ross 09:26
I think one just segueing into that, I think it’s really important that what makes life worth living is following your passions and so many things with migraine prevent that and it’s so important to advocate not just to make it through your migraines but actually have a life outside of your experience as a chronic migraine patient. And I think doctors and other people in your surrounding often will give you guilt for going out and doing these things that make life worth really being a joy. And I think every person deserves to go do those things, go see Beyonce, if that’s the thing that you love, or go out dancing with your friends at night. It’s not just about protecting your head. And I think really making and talking about what your goals are with your doctor and having them be somewhat realistic. But you know, not always in your hermit shell of the experience of having a migraine is important to your mental health and your physical health. So pushing for that is really important. And sometimes that means pushing past your current provider and finding the right provider, which is so hard, especially if you’re outside of a major metropolitan area. And this is what’s so exciting about what’s sort of changing in headache medicine is, the studies around virtual care that happened in the pandemic show that the outcomes of receiving virtual care for migraine are exactly the same as in person, which I think is really going to be the future of headache medicine is sort of a hybrid approach of finding your expertise virtually, and then getting any sort of hands on patient stuff locally.
Joe Coe 11:15
Yeah, that makes a lot of sense. And it segues into almost my last question for you today. You are building and have built a very successful career; you’re an entrepreneur. How do you do that living with a chronic disease like migraine?
Izac Ross 11:29
I’m gonna to say it’s not easy. I mean, I think, going back to that idea of finding balance in your life, it’s tough, especially for me going into a new position where I’m the CEO of a company, a totally different set of responsibilities that I’ve had in the past. And part of my role right now is actually to take care of myself so I can grow this business. And I’ve made mistakes along the way, especially in the early parts of my career. And when I’m doing something that’s really exciting for me, I’ve over indexed on work and ended up suffering the consequences of that and not having balance. So I think one key is trying to figure out what your limits are, and making sure you’re never hitting them. I think the other aspect is, and this is unfortunate, it’s like people with a chronic condition have to be so much more hyper- performing than their peers, because they don’t know when they’re going to be out of the office. So a practice that I’ve really started is operating way ahead of deadlines and pushing things much earlier, and making sure I have someone who always knows what’s going on on my team or in my orbit who can sit in for me if something were to happen. That means I actually have a lot more work to do than those folks who don’t suffer from these conditions. But I think it’s also prepared me a lot more as an entrepreneur to give away my lego bricks faster, which is a big thing that comes up as you’re growing a company is to let other people eventually take over your responsibilities. And that is very hard in the early part of your career, but actually makes you a better leader later in your career where you’re going to have to depend on your team a lot of the time to be able to execute on things. And for me in the role that I’m on now hiring people that I really trust and can empower is what’s enabling me to do this. It also doesn’t hurt me right now that I have five excellent headache specialists in my orbit, which is a rarity that no one else will probably ever experience in their life. But before that, I didn’t have any of that. So this is the first time where I literally have people that I’m talking to every day who are headache specialists. But in the early part of my career, working early, telling people what’s on your plate and being able to call out because we have that are really important.
Joe Coe 13:59
I’m laughing in my head about it’s like Izac knows a guy. But that’s like a very New York vibe and feeling, not California.
Izac Ross 14:07
I spent three years in New York, I know a guy.
Joe Coe 14:10
One thing that I wanted to circle back on and just underscore what that statement was that I think our community and audience can relate to a lot is the idea of having to overperform to compensate for the bad days, so we feel like we’re productive. Particularly, the way that we value productivity in our society. We are defined by our jobs and our roles and the output that we give and we hear a lot from people with chronic disease, invisible conditions, the not feeling like they’re a valuable part of society or that their output matters and how to balance that as individuals that are able to work and it’s something I’ve struggled with. I thought I was going to go into politics for a while. I’m not; I hope I’m not, but I didn’t want to necessarily disclose or be very open about having migraine or other chronic diseases is because I’m like, will they say if I ran for office that he can’t really be present for constituents or he’s not totally performing because he has, you know, a headache. So that was something when I was younger than I thought a lot about. I don’t anymore. I feel much more secure in my position and role both, you know, in work, in society, and in myself, but it’s important for us to hear that even the people that look like we’re, it’s easy, and we just have it all together, and we’re doing it, there’s a lot of background stuff that’s happening. So I’m glad that you shared some of that background stuff.
Izac Ross 15:31
Yeah, just to add to that, I think this is a lesson that I’ve learned more from my other disability, which is dyslexia. Because if you read my emails, you can tell early, but this is a lesson that I’ve had to learn is that I need to disclose both very early to my employers. I don’t do it in the hiring process but I do do it very early within my first month of working with a new manager. And I think what’s really important for everyone to know is it is actually a manager’s responsibility, not HR’s responsibility, to provide reasonable accommodations. And if you don’t disclose, you could get yourself into hot water really quickly, especially if you’re more on the chronic side. And it’s really scary to do so it may take some education and actually talking about what the headache phases look like with your manager and how to have them be read into your condition. But the best relationships I have formed are when I have done that really, really early and would really recommend advocating for yourself. Going back to your career in politics, that’s actually what I thought I would do if I didn’t go into this weird career in tech, and I, as a like West Wing super fan, and kid who grew up in DC, I’m really excited to go to Headache on the Hill for the first time this year and advocate in front of the Congress folks for California. So I’m just really psyched for that. I don’t know if you’re doing it.
Joe Coe 16:59
Amazing. No, I was but I had a conflict, unfortunately. But two of my colleagues, Sarah Shaw, and JP will be there, and my legislators know me. So I make sure that they know what matters to us. My last question for you: you just launched Haven Headache & Migraine Center. What is it and why does it matter to folks? And why did you do it?
Izac Ross 17:20
Thank you so much for that question. So my whole career has been in the intersection of user experience and healthcare. And for the last kind of four years, I’ve been thinking about when’s the time to work on this for migraine, and went to World Migraine Summit and just saw the relief, I think this was in 2021, of headache doctors and the excitement of how they were thinking about the future of headache treatment. And I was like, Okay, this is the time to do this. And the whole reason why I want to start Haven Headache & Migraine Center is I am an expert in healthcare. I was an early employee at a startup health insurance company. I know how to navigate the system like no one else can. It took me a year in my moment of crisis in 2016, to get in to see someone in the Bay Area who was an actual specialist, because I was doing pretty well; I was just seeing a general neurologist. And that should not be the case. Everybody deserves access to amazing headache care. And even people who have access to UCSF, Stanford or UCLA, they’re not there in a moment of crisis. You cannot get a hold of your doctor, if you need an infusion, your ass is in the ER, excuse my language. And that is a horrible experience. And I wanted to design and build a headache and migraine center literally around that moment of crisis, which is what we are doing. And it’s so exciting. We have launched in Southern California in LA, OC, and San Diego for in-person care. But we’re virtual throughout California. And we have our open waitlist right now. But we’re gonna start seeing our first patients at the end of January, whenever this comes out. Hopefully we should be open and seeing patients but we’re trying to get folks in within two weeks. And unlike your typical headache center that tells you to fill out a paper diary and nothing gets done with it until you show up in the next visit. We have an interactive diary that we are monitoring on the back end. So if you have 48 hours of headache, we’re going to reach out to you with a solution on what to do and what your next step should be. And if you ever need help, we’re available during business hours to troubleshoot your care plan and work with you right now to be able to afford to do that we are charging a $35 per month access fee on top of your insurance copay is when you see our clinicians but our hope is through clinical studies to get our remote monitoring covered for patients with migraines.
Joe Coe 19:50
That’s amazing. Congratulations! Really excited for you and happy to hear that there’s something new out there for our friends in California.
Izac Ross 19:58
And we have an amazing clinical team of headache specialists and more are coming on board soon. I can’t disclose that quite yet. But you can check us out and join the waitlist at Havenheadache.com. And we’d love, if you’re in California, to see you and if you’re not, demand in other states tells us where we’re going to open up next. So we’re hoping to expand it to other states later in the year.
Joe Coe 20:22
Amazing. Well, thank you so much for taking time out of your schedule to connect with me today. Really appreciate it.
Izac Ross 20:29
Of course! Glad to be on.
Joe Coe 20:32
Thank you for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you have any questions, thoughts, or suggestions for us, you can send us an email at [email protected] If you enjoyed this episode, please give it an honest five star rating, write a positive review, and spread the word by sharing it with your friends and family. It’ll help more people like you find us. I’m Joe Coe and I will see you next time.
Narrator 20:59
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this episode of Talking Head Pain, Joe Coe welcomes Dr. Andrew Blumenfeld, Director of The Los Angeles Headache Center and a world-renowned headache specialist who helped develop the Botox injection protocol used in the pivotal migraine trials.
They delve into the complexities of migraine management, discussing recently introduced concepts like “migraine freedom” and the multimodal approach to treatment. Dr. Blumenfeld addresses the challenges in navigating patient care within the constraints of insurance companies. The conversation also sheds light on the critical role of caffeine in migraine control and explores the often-overlooked symptoms experienced between migraine attacks.
Join Joe and Dr. Blumenfeld in an informative conversation that offers new perspectives and hope for migraineurs.
Unlocking New Frontiers in Vestibular Migraine Treatment: A Brief Discussion with Dr. Anne Luebke at the European Headache Society
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:10
Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host Joe Coe, Director of Therapeutic Area Growth and Integration at Global Healthy Living Foundation, and also President of GHLF Canada.
Joe Coe 00:26
I’m here at the European Headache Congress with a very special guest. Can you introduce yourself and state where you’re from?
Dr. Anne Luebke 00:31
I’m Anne Luebke, Dr. Anne Luebke. I’m from the University of Rochester in Rochester, New York.
Joe Coe 00:36
Can you share some of the research that you’re presenting here andwhat it means to patients?
Dr. Anne Luebke 00:40
Sure! So my work is mostly focused on various translational assays of vestibular migraine, two focused ones are postural sway and a mouse readout of motion-induced dizziness. And in other work, I’ve looked at auditory, the increased auditory sensitivity that shows up in migraine, in all migraine. But these other assays, I’m doing postural sway which is also showing up in higher in migraine patients, but even higher in patients that have vestibular migraine or migraine with vertigo. And the other thing that I’m looking at is motion-induced dizziness. Because mice and rats don’t get nausea; they don’t throw up, but we can measure their extent of motion and dizziness by using a fancy IR camera to look inside their heads and so forth. And I looked at this in mice, different mice. The advantage of using mouse models: we can change how much of the CGRP receptor there is and we can also try and block the response to CGRP with various blockers and I guess the most important thing for your patient audience is while the Sumatriptan and Rizatriptan work in regular headache migraine, in migraine with vertigo we found – and we’ve also seen clinically – that Rizatriptan and Sumatriptan don’t work to relieve the vertigo of migraine. And our mouse model assays have actually replicated that. So we’re trying to find new drugs that could possibly help against vestibular migraine since it’s very intractable to current therapeutics.
Joe Coe 02:12
So for our audience, and in simple terms, that there’s hope if you have vestibular migraine or vertigo.
Dr. Anne Luebke 02:17
Yes, and luckily, there’s a lot of people working on it. And in fact, at this meeting, I just met a researcher that is working on transcranial stimulation, some devices, and they even have them that work on mice. So we’re going to try to use those devices and see if those would help in addition to using the various CGRP antagonists or PACAP antagonists, as well as Botox, maybe even do Botox in the mice to see if – because I think for vestibular migraine, it might mean you might have to do two or three therapies because it is sometimes rather intractable to just one of the therapies.
Joe Coe 02:50
Well, thank you so much for your time and insight about vestibular migraine.
Dr. Anne Luebke 02:53
Thanks so much.
Joe Coe 02:54
Thank you for listening to the special episode of Talking Head Pain, the podcast that confronts head pain head on. If you have any questions, thoughts or suggestions for us, you could send us an email at [email protected]. If you enjoyed this episode, please give it an honest five-star rating, write a positive review, and spread the word by sharing it with your friends and family. I’m Joe Coe from the European Headache Congress, and I will see you next time.
Narrator 03:22
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this special episode, Joe speaks with Dr. Anne Luebke at the European Headache Congress in Barcelona. Dr. Luebke, a researcher and Associate Professor at the University of Rochester in New York, shares insights into her work and research on vestibular migraine. She explains the challenges in treating this condition, particularly the ineffectiveness of older migraine medications in addressing vertigo symptoms.
Dr. Luebke offers hope, citing ongoing research into new therapies and emphasizes the potential need for a multi-therapy approach to effectively manage vestibular migraine.
Unlocking New Frontiers in Vestibular Migraine Treatment: A Brief Discussion with Dr. Anne Luebke at the European Headache Society
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:10
Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host Joe Coe, Director of Therapeutic Area Growth and Integration at Global Healthy Living Foundation, and also President of GHLF Canada.
Joe Coe 00:26
I’m here at the European Headache Congress with a very special guest. Can you introduce yourself and state where you’re from?
Dr. Anne Luebke 00:31
I’m Anne Luebke, Dr. Anne Luebke. I’m from the University of Rochester in Rochester, New York.
Joe Coe 00:36
Can you share some of the research that you’re presenting here andwhat it means to patients?
Dr. Anne Luebke 00:40
Sure! So my work is mostly focused on various translational assays of vestibular migraine, two focused ones are postural sway and a mouse readout of motion-induced dizziness. And in other work, I’ve looked at auditory, the increased auditory sensitivity that shows up in migraine, in all migraine. But these other assays, I’m doing postural sway which is also showing up in higher in migraine patients, but even higher in patients that have vestibular migraine or migraine with vertigo. And the other thing that I’m looking at is motion-induced dizziness. Because mice and rats don’t get nausea; they don’t throw up, but we can measure their extent of motion and dizziness by using a fancy IR camera to look inside their heads and so forth. And I looked at this in mice, different mice. The advantage of using mouse models: we can change how much of the CGRP receptor there is and we can also try and block the response to CGRP with various blockers and I guess the most important thing for your patient audience is while the Sumatriptan and Rizatriptan work in regular headache migraine, in migraine with vertigo we found – and we’ve also seen clinically – that Rizatriptan and Sumatriptan don’t work to relieve the vertigo of migraine. And our mouse model assays have actually replicated that. So we’re trying to find new drugs that could possibly help against vestibular migraine since it’s very intractable to current therapeutics.
Joe Coe 02:12
So for our audience, and in simple terms, that there’s hope if you have vestibular migraine or vertigo.
Dr. Anne Luebke 02:17
Yes, and luckily, there’s a lot of people working on it. And in fact, at this meeting, I just met a researcher that is working on transcranial stimulation, some devices, and they even have them that work on mice. So we’re going to try to use those devices and see if those would help in addition to using the various CGRP antagonists or PACAP antagonists, as well as Botox, maybe even do Botox in the mice to see if – because I think for vestibular migraine, it might mean you might have to do two or three therapies because it is sometimes rather intractable to just one of the therapies.
Joe Coe 02:50
Well, thank you so much for your time and insight about vestibular migraine.
Dr. Anne Luebke 02:53
Thanks so much.
Joe Coe 02:54
Thank you for listening to the special episode of Talking Head Pain, the podcast that confronts head pain head on. If you have any questions, thoughts or suggestions for us, you could send us an email at [email protected]. If you enjoyed this episode, please give it an honest five-star rating, write a positive review, and spread the word by sharing it with your friends and family. I’m Joe Coe from the European Headache Congress, and I will see you next time.
Narrator 03:22
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this special episode, Joe speaks with Dr. Franchesca Fiorito, Board Certified Neurologist & Headache Subspecialist in Puerto Rico, at the European Headache Congress in Barcelona.
Dr. Fiorito shares her extensive work in advancing headache medicine, and details her efforts in establishing headache medicine education, clinics, and a specialized headache center tailored for patient comfort. The conversation touches upon the challenges of patient education, accessing specialized care, and dealing with local insurance companies. Dr. Fiorito also discusses her efforts in fostering collaboration between neurology and rheumatology to better understand and treat pain disorders.
Shaping the Future of Migraine Care in Puerto Rico: A Brief Discussion with Dr. Franchesca Fiorito at the European Headache Society
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:10
Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host Joe Coe, Director of Therapeutic Area Growth and Integration at Global Healthy Living Foundation, and also President of GHLF Canada. For today’s special episode, I’m at the European Headache Congress in Barcelona, Spain.
Joe Coe 00:31
I’m here with a very special guest. Can you introduce yourself, state your name and where you’re from?
Dr. Franchesca Fiorito 00:34
My name is Francesca Fiorito. I am currently coming from San Juan, Puerto Rico. I am a headache specialist there in the island.
Joe Coe 00:42
So I was sitting outside one of the sessions and listening to a conversation between you and another provider. And I learned that you are doing really amazing work in Puerto Rico. Can you share with our audience what that work is?
Dr. Franchesca Fiorito 00:54
Yes, of course. So when I graduated eight years ago, from Montefiore Medical Center with Dr. Lipton, I decided to go back to Puerto Rico, and I was able to go back to the University of Puerto Rico neurology residency. I started a curriculum for headache medicine and the headache medicine clinics for the residents, which I was fortunate there was interest and one resident for a year had started to apply into headache medicine. So now, formally, there are five fellowship-trained headache specialists in the island. In addition, I started to create an outside headache center. So it’s a private headache center that’s specialized and there are three of us, formally. So, the idea is to continue expanding into a multidisciplinary headache center. But really, it’s just focused on all specialties related to headache medicine, and the center is set up in a way for headache patients, right, like the lighting is very low, it’s perfume free, there’s no noise, it’s a very quiet, calm clinic.
Joe Coe 01:53
That’s amazing.
Dr. Franchesca Fiorito 01:54
So that’s something that we’re working on.
Joe Coe 01:56
What are some of the top unmet needs in the population in Puerto Rico?
Dr. Franchesca Fiorito 02:00
I think the main one is first just the patient having access to education, you know, Spanish wise as well, and them recognizing they have a problem. Because if the patient does not recognize that this is not normal, living with headache, living with pain, and they don’t seek help, then it doesn’t matter if there are providers or not. That’s the first step. But then unfortunately, the second step – and I think the biggest barrier – is getting an appropriate provider. And there were no formal headache specialists before I went back there, and even me going back and being the only one for six years, there was no way I could see the amount of patients that have a need for a headache specialist. So that’s why it was important to grow. And even though there’s a group of us now, there’s still such a big need. And I think also the insurance companies educating them because they have local insurance companies. And even though they’re supposed to follow the guidelines of the US territory, it does not always go that way. So really getting into meetings with them specifically about the headache guidelines for them to appropriately approve medications was another step in my career.
Joe Coe 03:11
So important to deal with those access issues. One last question. We were talking a little bit prior to the interview about your work across specialties. What has been some of the work that you’ve done in rheumatology and neurology?
Dr. Franchesca Fiorito 03:22
Oh rheumatology? Well, I haven’t formally done any work with rheumatology. I know Dr. Oscar Soto, which you know, who’s an amazing rheumatologist back home, and he has helped me out and we’ve done clips on migraine and interviews on that. But now we’re looking into our society. We have the Puerto Rican Academy of Neurology. I’m the current President. So we’re looking into doing a Congress now. We have a yearly convention and Congress, including the impact of different pain disorders in neurology, so we want to unite the rheumatologists with us to educate us as well regarding how our conditions intertwine at many times.
Joe Coe 04:04
That is such amazing work, excited to hear about the society being formed, and really appreciate your time and energy here today. Thank you so much.
Dr. Franchesca Fiorito 04:12
Thank you for having me. This was great.
Joe Coe 04:15
Thank you for listening to the special episode of Talking Head Pain, the podcast that confronts head pain head on. If you have any questions, thoughts or suggestions for us, you could send us an email at [email protected]. If you enjoyed this episode, please give it an honest five-star rating, write a positive review, and spread the word by sharing it with your friends and family. I’m Joe Coe from the European Headache Congress, and I will see you next time.
Narrator 04:42
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this special episode of Talking Head Pain, Joe speaks with Dr. Miguel Lainez, Chairman of the Department of Neurology at the Hospital Clínico Universitario, and Professor of Neurology at the Catholic University of Valencia, at the European Headache Congress in Barcelona.
Dr. Miguel Lainez shares his valuable insights on key topics at this year’s congress, including medication overuse headaches and vestibular migraine. He underscores the significance of new treatments like monoclonal antibodies and highlights the importance of patient education and reducing stigma associated with migraine.
Medication Overuse Headache and Vestibular Migraine: A Brief Discussion with Dr. Miguel Lainez at the European Headache Society
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:10
Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host Joe Coe, Director of Therapeutic Area Growth and Integration, at Global Healthy Living Foundation, and also President of GHLF Canada. For today’s special episode, I’m at the European Headache Congress in Barcelona, Spain.
Joe Coe 00:30
I’m here with a very special guest. Can you introduce yourself and state where you’re from?
Dr. Miguel Lainez 00:34
I’m Miguel Lainez, I am Chairman of Neurology and Professor in the Department of Neurology in Hospital Clinico of Valencia, Spain.
Joe Coe 00:42
And we’re here today at the European Headache Congress. From your perspective, what are some of the most interesting pieces of research or discussions that are happening?
Dr. Miguel Lainez 00:50
Well, I think there are many, many things interesting this morning. We have attended a session interesting about the medication overuse? Now, we have a session on vestibular migraine. I think many topics are interesting. And maybe the most important is that there are the results of the last studies with all the new drugs, monoclonal antibodies, the gepants, lasmiditan, and all the new compounds and even some devices that’s in review. A very interesting forum for discussion with friends and colleagues about new ways to improve the quality of life for our patients.
Joe Coe 01:24
That’s so important. What were some of the takeaways from the medication overuse headache discussion and the vestibular migraine discussion?
Dr. Miguel Lainez 01:32
I think it’s important that the patients are conscious that overuse of medication can chronify their migraines. And for this reason, it’s important that they restrict as much as possible the use of acute medication. But I understand that [if] you have severe pain it’s impossible to maintain this position. But fortunately, we have now with the new medications specifically, monoclonal antibodies have very, very good data about how the medication overuse can be reduced with the new treatments. And I think this is very important. And years ago, we thought that the preventive medications don’t work in the case of overuse. Now, we know very well that these medications work even in this kind of basis.
Joe Coe 02:12
So is it safe to say that the newer medications don’t cause medication overuse headache, like some of the older acute medications then?
Dr. Miguel Lainez 02:18
Yes, I think that the new, especially monoclonal antibodies, works very well even in this. Previously, the botilinum toxin was in this medication. And even there are some data on topiramate. I think the important thing is that it is a combination the management of medication overuse, a combination of education, aptitude to the patient, knowledge about the problem and use of the correct preventive medication.
Joe Coe 02:42
And you mentioned a talk about vestibular migraine. What was the takeaway for our community to learn from that talk?
Dr. Miguel Lainez 02:47
I think it’s important that patients lose the feeling of stigma. I think it’s important to live better with the disease. It’s important that they are conscious that they have a normal disease. They are not the reason. The reason because why they have migraine is the reason because other people have another conditions such as arthritis or asthma or similar. And it’s not a problem of the patient, it’s a problem of the disease. But now, probably many patients think that the problem is [of] themselves, but it’s not themselves; it’s the disease.
Joe Coe 03:17
Well thank you so much for your time, and I really appreciate the information that you shared with our community, and I look forward to the rest of the conference
Dr. Miguel Lainez 03:24
Pleasure to be here and to share these opinions with your community.
Joe Coe 03:29
Thank you for listening to this special episode of Talking Head Pain, the podcast that confronts head pain head on. If you have any questions, thoughts, or suggestions for us, you could send us an email at [email protected]. If you enjoyed this episode, please give it an honest five-star rating, write a positive review, and spread the word by sharing it with your friends and family. I’m Joe Coe from the European Headache Congress, and I will see you next time.
Narrator 03:56
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this special episode of Talking Head Pain, Joe speaks with Dr. Jana-Isabel Huhn-Doll at the European Headache Congress in Barcelona. Dr. Huhn-Doll, a neurologist and pain specialist from Germany, shares insights into the use of Botox for chronic migraine treatment.
Together they discuss the PHASE III Research Evaluating Migraine Prophylaxis Therapy (PREEMPT) protocol and the ‘follow the pain’ approach, which offers a more individualized treatment plan by targeting specific pain areas as identified by patients.
Following The Pain: Botox's Role in Migraine Treatment with Dr. Jana-Isabel Huhn-Doll
Jana-Isabel Huhn-Doll 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:10
Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host, Joe Coe Director of Therapeutic Area Growth and Integration at Global Healthy Living Foundation, and also President of GHLF Canada. For today’s special episode, I’m at the European Headache Congress in Barcelona, Spain.
Joe Coe 00:31
I’m here with a very special guest who just spoke about Botox and following the pain. Can you introduce yourself and state where you’re from?
Jana-Isabel Huhn-Doll 00:38
Hi everybody. My name is Jana-Isabel Huhn-Doll, and I’m a neurologist and pain specialist from the beautiful city of Essen, which is in Germany.
Joe Coe 00:46
Very nice and I just had the privilege of listening to do a presentation about following the pain and Botox injections. Can you explain what that means for our patient and provider community?
Jana-Isabel Huhn-Doll 00:55
Yes, as you know that Botox is used for patients with a chronic migraine, which means patients having more than 15 headache days and eight of these being migraine, typical[ly]. And Botox is a good medication and preventive treatment of migraines, and Botox PREEMPT scheme means that we inject patients with Botox in 31 areas of the face and pericranial muscles. And follow the pain means that you have the opportunity – if the Botox is not responding very well or if the patients are not responding well enough to Botox – that you actually follow the pain that patients tell you, ‘my predominant pain is in the back of the head’ or ‘in the trapezius area’, and you are able to do more injections and have a more tailored and individualized approach to their headaches.
Joe Coe 01:46
That’s really important, so as a patient if I’m having more pain in my traps, I should tell my neurologist that.
Jana-Isabel Huhn-Doll 01:52
Yes, definitely. This is what ‘follow the pain’ is about, that you and the patients, together, look at the tenderness of the muscles to decide where does the pain start? Does it start on one side or both sides? And you are able to do the injections in the specific areas.
Joe Coe 02:06
Thank you so much, really useful information and shared decision making in medicine is so important. So thank you.
Jana-Isabel Huhn-Doll 02:12
Thank you.
Joe Coe 02:13
Thank you for listening to this special episode of Talking Head Pain, the podcast that confronts head pain head on. If you have any questions, thoughts or suggestions for us, you could send us an email at [email protected] If you enjoyed this episode, please give it an honest five-star rating, write a positive review, and spread the word by sharing it with your friends and family. I’m Joe Coe from the European Headache Congress, and I will see you next time.
Jana-Isabel Huhn-Doll 02:41
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this special episode of Talking Head Pain, Joe speaks with Dr. Eyal Maoz Halevy, a Frontiers Award recipient at the American Headache Society’s Scottsdale Headache Symposium.
Dr. Eyal Maoz Halevy shares what he has found most impactful at the Symposium, and discusses his research on the role of physical activity as a vital sign (PAVS), revealing surprising insights about physical activity levels in migraine patients.
Moving Beyond Pain: Uncovering Migraine Patients' Surprising Activity Trends with Dr. Maoz Halevy
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:10
Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host, Joe Coe, Director of Therapeutic Area Growth and Integration with the Global Healthy Living Foundation, as well as President of GHLF Canada. For today’s special episode, I’m at the American Headache Society. I’m turning to a very special guest, can you tell me your name and share what you find most impactful at the American Headache Society?
Dr. Eyal Maoz Halevy 00:38
So I’m Dr. Eyal Maoz Halevy. So the most exciting thing is that I got to meet professionals from different areas from the country from the US and headache and I was surprised to learn how much they differ. They have different interests in the field of headache that of course, they all complement each other. And just yesterday, I was in a very fascinating lecture about LGBTQ medicine. And there was a doctor there, who talked about interactions between medications for headache and for gender reassignment things we should all be really aware of. So that’s just for instance, something I learned there. So yeah, for me, it’s a learning experience and meeting the right people.
Joe Coe 01:15
I love that so much. That’s an important topic that we’ve covered on Talking Head Pain. I want to turn to a recent award that you got just the other day here at AHS, the frontiers award for your research on Physical Activity as a Vital Sign in migraine. Can you talk a little bit more about that?
Dr. Eyal Maoz Halevy 01:31
Physical Activity as a Vital Sign (PAVS) is actually already in use and some medical fields to assess the amount of physical activity done by patients with chronic diseases such as arthritis, for instance, and patients with schizophrenia for instance, because we know the amount of physical activity patients do. Patients who are going to do affects the disease, we wanted to look into what amount of physical activity patients with migraine do, because we know it’s never been quantified, and we wanted to see if we can actually utilize this PAVS also in the field of migraine. So we took just positive cohort of patients with chronic migraine or episodic migraine, and we took the PAVS score, which is made up of the amount of days a week that they do any amount of physical activity and how many minutes each day. So you multiply the days by the amount of minutes each day to see if they do enough physical activity that meets the recommended guidelines, which is 150 minutes a week. And we saw how patients with chronic migraine do physical activity but less than patients with episodic migraine. However, the surprising fact that we saw is that patients who have migraine overall whether chronic or non chronic, on average do more physical activity than amongst the average general population in the United States, which means that patients with migraine are aware of the fact that they need to do physical activity as part of balancing their migraine headaches.
Joe Coe 02:51
That’s so interesting. And that’s a topic that I find personally interesting as someone who just became a personal trainer and nutrition coach who lives with migraine. So really excited I’ll check out this research Physical Activity as a Vital Sign really interesting. Thank you so much for your time and for joining me on Talking Head Pain.
Dr. Eyal Maoz Halevy 03:09
Thank you very much for having me.
Joe Coe 03:11
Thank you for listening to this special episode of Talking Head Pain, the podcast that confronts head pain head on. If you have any questions, thoughts or suggestions you can send us an email at [email protected]. If you enjoy this episode, please leave us an honest five star rating, write a positive review and spread the word by sharing it with your friends and family. I’m Joe Coe at the American Headache Society and I’ll see you next time.
Narrator 03:38
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this episode of Talking Head Pain, Joe Coe is joined by Kelly Gavigan Lorant, Director of Data Management and Analytics at GHLF, as they explore the findings from a recent patient-centered survey on migraine. Kelly also explains how GHLF’s research registry, originally focused on rheumatic and musculoskeletal conditions, has expanded to include a broader spectrum of chronic diseases, including migraine.
Discover the insights gained about migraine patients, their treatment paths, and how these can intersect with other chronic conditions. This episode provides a unique look into the evolving understanding and management of migraine within the chronic illness community.
Expanding Insights: GHLF's Recent Migraine Survey Results
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Kelly Lorant 00:10
Our research registry is a place for people to engage in research and provide information about themselves about their condition about their disease activity and disease journey. And now it has been brought in to be more comprehensive of chronic disease in general.
Joe Coe 00:31
Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host, Joe Coe, Director of Therapeutic Area Growth and Integration with the Global Healthy Living Foundation, as well as Co-President of GHLF Canada. I’ve been a migraine patient for over 20 years, so I know firsthand how debilitating this disease can be. I am really excited today to talk to a colleague at the Global Healthy Living Foundation, Kelly Laurent. Kelly is part of the team that looks at our data and research and really helps us communicate it externally to our patient community. Today, we’re going to be talking about a survey that we conducted in a research registry and Kelly will explain what a research registry is. A research registry that was focused initially on muscular skeletal conditions, and now we’ll be focused on multiple chronic diseases including migraine. So we’re really excited about this entry point into an important body of research as well as an underserved patient community. Welcome, Kelly to Talking Head Pain. Yeah, thank you so much, Joe. So Kelly, can you tell us who you are and what you do at the Global Healthy Living Foundation?
Kelly Lorant 01:46
Absolutely. So I am the Director of Data Management and Analytics. I’ve been with the Global Healthy Living Foundation for about seven years now. I work really closely with all of the teams at GHLF. I work closely with research, I work closely with tech with education and support, as well as advocacy to make sure that their data needs are met, that we are collecting information from the people in our community that can best help serve the people in our community and give them access to materials, educational materials, advocacy materials that they might need, as well as connecting them with research that is useful for them.
Joe Coe 02:33
And that’s where we are today. A couple of us at GHLF wanted to learn about the current participants in our registry. So we produce a survey about migraine. What did we want to accomplish with the survey? Kelly?
Kelly Lorant 02:46
Absolutely. So with this survey, Joe, as you mentioned, our research registry is a place for people to engage in research and provide information about themselves about their condition about their disease, activity and disease journey. And and all of that information contributes to research. And as you mentioned, Joe, our research registry was previously focused on rheumatic and musculoskeletal conditions, conditions like rheumatoid arthritis, osteoarthritis, psoriatic arthritis, things like that. And now it has been broadened to be more comprehensive of chronic disease in general. And so we wanted to have an understanding of how the people who were already in our research registry, how they may deal with migraine and migraine headaches, because it’s not a condition that we were previously looking into in the past. And we thought that it was possible that people already in the registry with these rheumatic and musculoskeletal conditions also had chronic conditions like migraine. So we wanted to see if they did first and then we also wanted to see among the people who do have migraine, what their migraine was like, what type of clinicians they were seeing to treat their migraine, what they were doing, what medications they were taking, things like that to treat their migraine headaches and migraine attacks.
Joe Coe 04:13
Yeah, really important information. And I was really excited when I looked at the findings that we have here at GHLF. From the survey about how many people took the survey, Kelly?
Kelly Lorant 04:25
Sure. So we had 625 people complete the survey, which I think is a good indication that we’re already poised to start migraine research within our research registry.
Joe Coe 04:39
And how many of those people had episodic migraine which is up to 14 headache days a month versus chronic migraine, which is more than that? If you can imagine for those of us that don’t live in migraine, that’s a lot of headache days, even for episodic people. So what was the breakdown for episodic and chronic?
Kelly Lorant 04:57
Sure, so most people who responded to the survey reported having fewer than 15 migraine days a month. So episodic migraine and that was 83% or 519 people, whereas 96 people, or 15% reported having more than 15 migraine days a month.
Joe Coe 05:18
Kelly, can you explain to the audience what type of providers our survey respondents spoke with about their migraine?
Kelly Lorant 05:27
Absolutely. So I would say by and large people were seeing a primary care provider as well as a neurologist either currently or in the past for their migraine attacks. But I will say that as many as 20% of the people who responded to the survey reported that a healthcare professional has never talked to them about their migraine attacks. So that’s over 120 people, or like I said, 20% of the total survey respondents who are not receiving any type of care for their migraine attacks, and are not seeing a health care professional about those attacks. So that was really a striking number to us. And then another thing to consider, as well as the use of urgent care and emergency departments, we saw that almost 50% of people who responded to the survey have gone to urgent care or the emergency department because of the severity of the migraine attack that they were experiencing. So all these things certainly help us have a better understanding of what the people who’ve responded to this survey are experiencing with their migraine.
Joe Coe 06:39
And what were some of the commonly used treatments in this cohort?
Kelly Lorant 06:42
So over the counter medications were definitely most common. So that would be over the counter pain relievers were most commonly used. 83% of people reported having ever tried over the counter pain relievers for their migraine attacks. And then another common medication was triptans, resin triptan or Maxalt, you know. So those are examples of triptans. In terms of maybe more like therapies or not over the counter or prescribed medications ice therapy was pretty common use by about half of the participants who responded as well as vitamins or minerals like vitamin D, vitamin B2, magnesium supplements. Those are also reported as being used by about half of the participants.
Joe Coe 07:34
As a migraine patient, it makes sense that a lot of the participants in the survey are trying multiple treatments. It was interesting that most are not on some of the newer medications. And that could be something else interesting to look at in future studies, why they are on certain medications and not others. Something that I think is interesting, this cohort, this group of people that we surveyed, they opted into a registry for research purposes based on a condition other than migraine. So we’re looking at a very interesting subset of the migraine community, those with likely inflammatory conditions, what are some of the potential research questions that we might want to ask in the future? Looking at these groups together?
Kelly Lorant 08:20
Yeah, that’s a great question. Joe. I think that what would be interesting to see among this group of people is how their other chronic condition their inflammatory condition, like rheumatoid arthritis, etc, how that coexists with their migraine, you know, so what happens to their migraine when their RA symptoms are worse and what happens to their RA when their migraine symptoms are worse? And you know, so things like that, as well as how do their RA medications impact migraine attacks or migraine days and vice versa? How did their migraine medications have an impact on their RA symptoms? I’m using RA as an example. But you know, could be lupus or gout or different things like that different inflammatory conditions. So I think that would be a good place to start is, you know, what is the intersection between their two chronic condition?
Joe Coe 09:17
And what is so exciting for me from my perspective, is that now with this new property and program and initiative that we have called Patient Spot, which is absorbing the research registry that we talked about earlier in this podcast, as well as providing education and advocacy programs for people with all sorts of chronic diseases, inflammatory, oncology, obesity, so metabolic issues, it’s a really a spot for all patients and that’s what he called it Patients Spot. So it’ll be fun to see how we can look at a person as a whole person that has a lot of different things going on and they might have multiple chronic diseases they might have have different types of challenges and others. So patient spot is just a really exciting program that was just launched and will continue to roll out in a phased approach. Everyone is welcome to join it and participate, including migraine patients in terms of research and education. And if anyone has a research question that they would like to ask, I’ll give my email my personal email is the letter J, the letter C, the letter O, the letter E at the letter G H L F.org. So it’s [email protected]. If you have a research question or a comment about this episode, you can let me know there. Kelly, it was amazing having you on for this little update. We’re going to do so much more in sharing research and creating research in making sure that patients are at the center of migraine research at GHLF. So really happy that you were on and that you will be on in the future. Thank you very much.
Kelly Lorant 11:02
Thank you so much, Joe.
Joe Coe 11:05
Thank you for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you have any questions, thoughts, or suggestions for us, you can send us an email at [email protected] If you enjoyed this episode, please give it an honest five star rating. Write a positive review and spread the word by sharing it with your friends and family. It’ll help more people like you find us. I’m Joe Coe and I will see you next time.
Narrator 11:32
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this episode of Talking Head Pain, Sarah is joined by Kellie, a staunch advocate for migraine and traumatic brain injuries (TBI). Kellie walks us through her journey of living with a TBI from when she was in college to now with the critical work she is doing to provide migraine educational resources to employers and employees via Migraine at Work.
Listen in as Kellie bravely opens up about her struggles with depression and migraine and her battle of overcoming the stigma attached to seeking help for mental health issues. Kellie also shares the significance of having a supportive network and the role of education and advocacy in reshaping the narrative about migraine attacks.
Breaking the Silence: Kellie's Journey with Migraine and Depression
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Kellie Pokrifka 00:10
I have always had a really happy, optimistic disposition. And it wasn’t even at first after my TBI that I started feeling depression, I think it was maybe two years in and I just couldn’t understand what was happening. It got to the point where I didn’t want to be around anymore. It was just so much pain and so much to take on. But I was able to get that core disposition back and I don’t want anyone else to do that to themselves. I don’t want this gross stigma preventing anyone from getting help.
Sarah Shaw 00:47
Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host Sarah Shaw, Senior Manager of bipoc Community Outreach at the Global Healthy Living Foundation. I have been living with chronic migraine for almost 10 years and I’m very open about navigating life with my chronic disease journey as well as my experience living with anxiety. This podcast will be a window into other patients lives as they navigate their own journeys living with chronic pain, migraine and mental health. Today, we’re joined by Kelly Prokifka, a migraine advocate and TBI patient in the migraine community. We’ll have a deep conversation with her and leave no stone unturned in regards to Kelly’s chronic illness journey. We’ll be digging into depression, suicide among other mental health topics that often go hand in hand with living with a chronic illness. It’s important that we have these conversations to help battle stigma and help others feel less alone and get the support they need. Hi Kellie welcome to the podcast. How are you doing?
Kellie Pokrifka 01:44
I’m great. Thank you so much for having me, Sarah. I’m really excited to be here.
Sarah Shaw 01:46
I’m really excited to have this conversation. So Kellie, I like to start off every podcast by asking people what their worst migraine attack was like, Do you mind walking us through that?
Kellie Pokrifka 01:58
Yeah, that’s a tough one, I would have to say it was probably last summer, there was a point where I just couldn’t get out of such a bad vomiting cycle. And it got to the point that my my partner and my mom, they were begging me to go to the hospital. But I’ve had so many bad experiences with that in the past where you’re just dismissed. You’re not given help. You have to explain so much when you can’t even form a sentence together. So I was so resistant to it. And I think I was lying. Yeah, like in my bathroom. And the only point that I was like, Okay, you can take me If you will do all the talking for me if you’ll do all the advocacy for me, because I think I’m going to die if I keep going through this.
Sarah Shaw 02:40
Yeah, no, that’s a really good point that that you bring up we know as migraine patients, the emergency room is kind of one of the worst places for us. It’s really loud. The lights are super bright. There’s a lot going on. And it’s hard. I like that you brought up about your family members and loved ones advocating for you. I bring my partner along with me to almost every single doctor’s appointment that I go to where I feel that she can help advocate for me support me bring up things that maybe I forgot to mention because she sees me every day and she’s like, Okay, I know that you had a lot of migraine attacks last month, we should bring that up to the doctor or remember when you did X, Y and Z and I think utilizing our loved ones as part of our like migraine toolkit is like an amazing thing to help us advocate for each other. So I’m really glad that you brought that up and that your family members can advocate for you.
Kellie Pokrifka 03:28
So much so. I am 30 and i still bring my mom to like all of my appointments and it’s amazing. She is so diligent about note taking things I forget or if I’m flustered in the moment with so much to remember and so many things to bring up that you really do forget so many things and you get so anxious and there’s just so much and especially if it’s an ER situation like to do all the performances we have to jump through to get care in those situations. It can be near impossible when you’re feeling at your absolute worst and it’s just so nice to have someone you can trust and will drop anything to be there. It’s amazing.
Sarah Shaw 04:03
Absolutely. It’s really good. I’m glad that you have those loved ones and care partners you know at hand to help you with that. Just from you know being in the migraine world and just we all kind of like know each other but like haven’t always met I know that you have a TBI, traumatic brain injury. Do you mind walking us through the your traumatic brain injury diagnosis?
Kellie Pokrifka 04:24
YYeah, absolutely. So I was 19 and before this point, I didn’t have a migraine attack ever. I used to get carsick a lot as a child which looking back that was probably a I fainted a lot which looking back I probably had POTS my entire life, but we just didn’t really care too much about it just because like it wasn’t so prominent that it was controlling every aspect of my life. And so when I was 19, I went hiking when I was in college, and I got a tick bite and I got Rocky Mountain Spotted Fever, which we didn’t actually find out until maybe six months later when the doctor just did like a shot in the dark blood test and was like Oh, here’s what’s continuing all of the brain damage and etc. But then I went to a friend’s art performance and it was standing room only. And again, with the POTS, I’ve never really been great at standing. But definitely with the tick bite coming into play, I fainted. And I just hit my head. So all I was doing was standing and this was the worst concussion of my life. I had had so many before. And you know, you’d be over it and two days, so I never thought it was serious, you know, especially as a teenager, I thought it was sort of a badge of honor. You know, like playing soccer and be like, yeah, so tough like, please don’t do that. But anyway, so I was really bad. And I wasn’t really stringing sentences together. And my friend Holly was with me. And she convinced me to go to the hospital because I was like, I’m fine. Like, this happens all the time. It’s nothing. And then she was like, I want to call your mom. And I was like, I don’t know what she’s got to worry. It’s late at night. You know, she doesn’t live in the city. But she did. And thank God. And so my mom came up and then I just never returned to college for a couple years after. Until I was so excited. I finally got into what was considered like Virginia’s top neurologist, and it was two years after my concussion. And I was horrible. I was in such a bad state that I so desperately wanted to get some semblance of control and my life back and missed my goals. I missed, like my social life. And so I was like, So what do I have to do to get back to school? I need I will do anything. I would love to do anything. And that neurologist said the thought of me ever going back to school was laughable.
Sarah Shaw 06:37
Wow, that’s really, really horrible.
Kellie Pokrifka 06:39
But then, you know, that day, I was just like, Okay, well, if it’s never gonna happen, I might as well try now. So I went back that semester, and it was absolutely brutal, horrible, but I was able to finish, which is really cool. But still, even to this point, I can’t work full time. I can’t every second of my life is dictated by my symptoms, everything I do is dependent on this. So that was a really long, long winded answer.
Sarah Shaw 07:03
No, no, I appreciate you taking us onto that journey. And also the reality that that is the reality for so many people living with chronic illnesses like migraine like TBI, as with a bunch of other chronic illnesses, I think I first just want to address that when we’re in pain. And when we’re not able to do a lot of things, we can do them. But with accommodations, like we can do them, but maybe at a slower pace, or we can do them. But I’ll need to be in my bed with my laptop, or I’ll need like reduced screen time or I’ll need an extension on papers. And I’ll need time to take tests. You know, I didn’t start experiencing severe migraine attacks until after I graduated. And one of the things that I think would have made it really challenging for me is if I would have been more chronic when I was undergrad. But I also, you know, now learned that there were accommodations that could have been put in place for me, I was on a 504 program for my attention deficit disorder when I was younger. And all of this is relating to the fact that people living with chronic illnesses are valuable, we just interact with the world differently. And I want to touch on what you mentioned about you know, you can’t like hold like a full time job. And I wanted to connect that to what something that I know about you is that I believe you work with migraine at work. Do you want to like talk to us a little bit about that transition from not finishing university, but not being able to like work full time? What led you to migraine at work? Can you talk to us about that?
Kellie Pokrifka 08:28
Yeah, absolutely. And this is one of the things I’m most excited about. Because like you said, we can do so much valuable stuff. If we are just given accommodations, if we’re giving given the room to thrive. Even the professor’s when I went back to college, whether I was able to pass that class or not was dependent on what were the teachers willing to do? Did they roll their eyes and be like, Well, no, you have to be at the same playing field as everyone else. And being in a silent room isn’t really giving me a leg up on someone else. But it would make it possible for me to actually go through this. And that definitely translates into my work for migraine at work. Because if people just took these accommodations seriously, the amount of value we could bring to every situation is just so much and disabled people have so much to offer. And we can do so much. But it’s often just so dismissed because people are fearful of the unknown. And they’re afraid like oh, what if I do this and it might be they make up these situations in their head that we’re just gonna abuse the system. And that’s just not true at all.
Sarah Shaw 09:33
There is this stigma especially against invisible illnesses for like migraine, fibromyalgia, even like mental health like anxiety and depression. I feel like society puts this pressure on us that we’re not even pressure but they perceive us as being quote unquote lazy or taking advantage of the situation that could be like the farthest thing from the truth. Like I don’t know how to explain this, but we want to do everything we just need the world to interact with us differently. And then we can work alongside it. And I just wanted to touch back about what you’re doing at migrant at work and how you’re helping so many people.
Kellie Pokrifka 10:10
Yeah. So back to how you asked, like, how did I get involved with all of this, I was able to just live with my parents and not work after college because I truly was not able to. And I was very privileged. I love them a lot. It wasn’t like a bad situation. Most people don’t have that I felt very lucky. But I was able just to sort of do full time research. And I always wanted to be a neurological physical therapist. So like working with Alzheimer’s and stuff like that. So I love being able to break articles down and make it actually accessible to patients that worked really well. So for a while, I was just able to research and research and I had my own website where I would put the blogs, and it’s called concussion gameplan. And then I found the Migraine World Summit. And it was like the best resource I had found thus far. And I really loved it. And so I started volunteering with them. And I’ve been doing their social media along with a huge team since that point. And through that I got close with the founders, especially Carl, and he was like, You’re good at this, like you you can do this, would you want to come on for migraine at work? It’s one of our associated nonprofits, you know how to like he went through a similar thing, he had to quit his job entirely. He had his entire life dictated by chronic migraine. And because I have my boss who gets it and knows, like, I cancelled the meeting five minutes before, it’s not because I’m flighty, or I’m flaky, it’s because I can’t I’m trying my hardest. And I just wish everyone could have that kind of support. So what we’re doing for that is we’re trying to get even just education and accommodation programs into workplaces, there’s been a lot of studies that, you know, most people with migraine are not, you know, on our level, they’re not dealing with this 24/7. They’re not dealing with this constantly. And there’s so many people, especially who are still episodic, that if they had the education, they could turn their lives around, and they could never go down the alleyway of chronic migraine, it could never get to the intractable state. And even if they are in that intractable state, if their employers are willing to provide this education, these new medicine options, these like accommodations, there’s just so much that we could be doing and making workplaces available for people like us. And I think that’s truly amazing. And so I love it. I love getting on webinars and just telling people that hey, even if you’re like, you know, migraine is largely genetic. So a lot of us have had relatives who are like, Oh, I went to the doctor, and they said, There’s nothing you can do. So don’t waste your time. But like 2018 you know really changed the game. It was the first preventative actually designed for migraine. And there’s just so much now that people don’t know if they’re not living, breathing, reading, researching migraine all day.
Sarah Shaw 12:56
It’s it’s really ironic what you bring up. I remember when I first started working out of college, that was three months later, I had my first migraine attack, it was episodic. And then throughout the years, it went from episodic to chronic. And during my like, I’ll call it My migraine journey to getting more educated about it and talking about it when I was hospitalized. And I had to kind of tell my employer, like I’m in the hospital for these migraine attacks that just won’t break. And it was just so interesting how when I like came back to work, like four or five other people were like, oh my god, I get like, I get migraine attacks too. And it was just like this thing of just openly like talking about something that they were like, oh, yeah, I get this. And I see this neurologist or I do this. So everyone was kind of walking around with this knowledge. But because we weren’t talking like about our pain, because in society, especially as women, we’re not supposed to like talk about those things. But it just I saw like a light bulb go off. And the next employer that I went through the same thing, like I was more confident than I was like, Yeah, I get chronic migraine. I get like 15 Plus headache days per month. And they’re like, oh, yeah, I get migraine too. And I see a neurologist, and it was just this theme that kept happening again and again. And I just feel like if we all would have talked about it and like shared resources, we could really help a lot of people like get on like better treatment or even see like a neurologist, there were a few people that I had come across, they’re like, Oh yeah, I get migraine attack. I’m like, Oh, are you seeing a neurologist? And they were like, no, but some of it also has to do with like access to you know, insurance issues, like we talked about all of these things. And just I was listening to what you were saying about you know, if it’s genetic and someone in their family has it, but then they’re like, Oh, I went to a doctor and they didn’t do any help are not going to help you. And I think we’ve really seen migraine education resources, medication like evolve especially like you mentioned since since 2018, and know that these newer treatments and better treatments are out there. It’s such a shame that there are so many people that just don’t have access like games, they don’t have the education don’t have the access to the education And what migraine at work is doing is putting that at like the center of discussion so that way employees can get better and feel better. I just I think the more we talk about it, the more we have webinars and podcasts and articles that talk about something that for so long, so many people, especially women, we’re not talking about, we’re just grinning and baring it, I think is so important. I talk a lot about like mental health on this podcast. And I like to bring it around of what do you do for yourself that like is like feeding your soul as you’re doing self care?
Kellie Pokrifka 15:32
Yeah. So that’s, that’s a big one. I think it’s important for me to like, go back. So I have always had a really happy, optimistic disposition. I think I was born that way. I think that was my just overall, like, I always want to every person I met, I want to be their friend. Like I want to have so much fun always. And it wasn’t even at first after my TBI that I started feeling depression, I think it was maybe two years in. And I just couldn’t understand what was happening. It got to the point where I didn’t want to actively kill myself. But I knew that the next time I got really sick, because my immune function had been severely impacted by it, I was just not going to go, I was not going to tell people, I was not going to go to the doctors. And I would just let that happen. So that way, my loved ones don’t have to deal with it. But I just I didn’t want to be around anymore. It was just so much pain and so much to take on. And I don’t because it was a slow gradual process. I don’t even know if I recognized it as depression at the time. And because I always thought, Oh, I’m so happy. Like, this is great, yada yada. Whenever one of my doctors suggested that I really pushed back. And then I think I was sort of in my mind, I was tricked into taking antidepressants, because they’re like, Oh, it’s a migraine preventative. And so that way, I was like all the stigma I had like about myself, and I wasn’t being grateful enough. And I wasn’t realizing I still got to live with my loving family. And I just I hate that I had that. But I did. And then I realized, Oh, my life is okay. Again, this helped a lot. Why did I go so far denying this when life is hard enough? Give yourself help. Like, why would I contribute like that extra stigma to what I was going through was a terrible thing to do to myself, like I could have gotten so many, like a couple years of my life back where I didn’t just truly hate every minute. And I hate that I had that. But like you said like the caregiving thing, like, I would never say that to someone else. But I felt it for myself. And it sucks. And there’s like one stat that I was even saying and like telling to other people, but it was nearly one in five brain injury survivors report suicidal ideation plans or attempts in the five years after, and but for some reason, I couldn’t be like, Oh, but that’s also me like something about it. I was just not being honest. And it was horrible. I hate that I did that. But I’m so glad that someone quote tricked me into taking medication and helping myself get through that and I didn’t need it forever. And then once I got to a place where I wasn’t sobbing every day, I could take like some of my other like self care and like treatments that were more holistic and like more things I was a little bit more comfortable with, then I can get back to that place of like happiness and feeling so much pain and there’s still so many days I like break down all the time. But I was able to get that core function and like that, like disposition back. And I don’t want anyone else to do that to themselves. I don’t want this gross stigma, preventing anyone from getting help and letting themselves suffer to a degree we’re already suffering. Life is hard. Life is hard for every person, like give yourself a little help. If you need help, don’t try to you’re not tougher for not getting help. It’s really hard to get help.
Sarah Shaw 18:54
It’s very hard to get help. And I want to touch on a few points of what you said Kellie, like number one, being gentle on yourself. You know, I think it’s really hard with mental health and I live with very severe anxiety when you’re in it. It’s really hard to see what it is that you’re going through until you’re able to take a step back and be like okay, I went through a really bad patch for five months where I was having this and I feel like I also have to state that I appreciate this statistic that you brought up about TBI patients anxiety and depression go hand in hand with migraine. I feel like there’s so many people that I talked to where they have one or the other anxiety or depression and migraine or just anxiety and migraine or depression and migraine or C, PTSD and migraine, I feel like it’s so common, but it’s not talked about enough. And you talked about stigma. And we talk about the way the world views mental health and even like growing up in TV shows and movies, depression and anxiety were kind of taboo, or like seeing like a therapist, which they used to call shrinks. There had to be something like wrong with you and like, you’re like, you know, you’re like broken and like you need like to see professional to get help. And like it was like, Oh, you need a shrink. And like now looking back I definitely internalized society’s the way that that society views mental health, anxiety and depression to the point where even though I was I said, I was like a mental health advocate five or six years ago, when I suddenly got diagnosed with anxiety, and I had my first panic attack. And I was prescribed anxiety medication, I felt the shame of needing to take a medication for my anxiety. And my therapist, and I had a really like candid conversation about it. I brought it up to her. And she was like, Sarah, when you get a migraine attack, do you take your medication? I was like, Yeah, of course. No, I do. And she’s like, why can’t that be the same for you when you have anxiety? And we obviously went through the background of like stigma and society and women and all of these other barriers, such as, like, being a woman of color, a queer woman of color, like all those different like layers that like get us to this point. And I think you brought up a really important point about depression and suicidal ideation. And bringing up such a topic on a podcast, I think is really important for other people to hear to one know that they’re not alone. And two there’s this meme that like I always see, like going around on Facebook and Instagram and Twitter, or x is it’s a pill bottle, and it’s like, full of like cats. And it’s like store bought neurotransmitters are absolutely fine. Like, it’s okay, if you need to get your dopamine from like medication. And I want to see more of that I want us to continue to have these conversations to let people know there’s nothing wrong with you that you just need a little cat prescription to get you through your day or to get you through a really rough patch. And it doesn’t matter if it takes two months to a week to six months, however long you need it to get back to that level, that’s okay. And we’re gonna have bad days being in pain sucks. It does. I’m not gonna beat around the bush with that. But I think sharing stories like yours, talking about the real things, let’s so many people know they’re not alone, and that they have a buddy to get through those rough spots. So thank you for bringing that up and having that really vulnerable conversation with us. And for our listeners.
Kellie Pokrifka 22:01
I feel like very much like what you’re saying, first of all, yes, I love that meme. But also, I felt that way. When I saw medical PTSD in my chart, I was like, that is so wrong. I have so much privilege. How could I have PTSD you know, like, I didn’t suffer like a horrible, like mugging or I didn’t go to war, yada, yada. And I thought it was somehow taking away from other people to say that I had that. And no, not at all. If anything, it’s supporting them knowing that it doesn’t have to be this ridiculous option. I went through so many doctors telling me this wasn’t real, or this was you know, just get over it. And because I had never heard of like medical PTSD, I said there was no way because I never did anything brave. I was just going to the doctor. And for some reason I thought that would take away from other people’s pain. And that’s not how the world works at all.
Sarah Shaw 22:53
Yeah, going to the doctor is brave. It is like, I feel like I have to gear up, have all my lists. Okay, here’s my list of things that I need to bring up to my doctor, like, Okay, let me start back when I was 12, and walk you through my entire history, I think, you know, going to the doctor is brave, it’s vulnerable. And also it can be really good. Like I have now some really great experiences with a few of my doctors, they know me, you know that I’m an advocate, I’m able to have conversations with them about what has worked, what hasn’t worked, what I’m traumatized by, you know what I mean? I feel like that’s what I wish for everyone is to have these conversations with their doctors to not only help them feel good, but feel good longer. I want to thank you, Kellie, for coming on the podcast today and having this conversation with us. I know that it’s going to impact a lot of patients. So thank you for coming on.
Kellie Pokrifka 23:40
Thank you so much for doing all of this. It’s incredible. And I love it. And I think it like you said it is helping and reaching so many people and so many groups that just get passed over and I think with all of the work any of us are doing if it touches one person who had no idea that other people were going through this I think it’s so incredible and so important and I’m so proud and I thank you for doing all the work you’re doing.
Sarah Shaw 24:03
Thank you for listening to this episode of talking head pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating write a positive review and spread the word by sharing with your friends and family. It’ll help more people like you find us. If you or a loved one are experiencing mental health related to stress, particularly if the thought or feeling is new or has increased recently, you can call or text the National Suicide Prevention Lifeline at 988 for help at any time. This lifeline provides free and confidential support for people in distress prevention and crisis resources. I’m Sarah Shaw and I will see you next time.
Narrator 24:42
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this episode of Talking Head Pain, Sarah is joined by Avi, who lives with migraine and other chronic illnesses. Through his migraine journey, Avi shares with us the difficulty he and his family encountered trying to get diagnosed. Avi also breaks down the challenges he faces navigating the health care system as a trans man and non-binary person. He shares his experiences of being misgendered and deadnamed (when a transgender person is referred by their birth name after transitioning) in doctors’ offices, highlighting the need for greater gender-affirming care.
Health Care's Crossroads: Avi on Navigating Chronic Pain as Trans/Non-binary
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Avi 00:10
“I think disabled people just for their own well being, because it’s so hard being gaslit so constantly, like so continually that like, you start to not believe yourself, like even myself, like sometimes I’ll be like, maybe I’m faking it. And I’m like, I’m by myself. I’m in debilitating pain, like and I’m not faking it. But when you hear it, like almost every day, your whole life like you start to believe that even when you don’t want to.”
Sarah Shaw 00:31
Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host, Sarah Shaw, Senior Manager of BIPOC Community Outreach at the Global Healthy Living Foundation. I have been living with chronic migraine for almost 10 years and I’m very open about navigating life with my chronic disease journey as well as my experience living with anxiety. This podcast will be a window into other patients lives as they navigate their own journeys living with chronic pain, migraine, and mental health. Today, we are joined by a special guest, his name is Avi, he is a person living with migraine disease, as well as a couple other chronic illness conditions, which we’re going to dive into in today’s episode. Hi, Avi, welcome to the show.
Avi 01:15
Hi, thank you for having me. I’m so excited to be here.
Sarah Shaw 01:17
I’m really excited to have you on. So one of the first questions I like to start each guests off of asking is if you could use one word or attitude to describe your migraine attacks. What would it be?
Avi 01:31
I mean, like probably nauseous, have debilitating nausea from it.
Sarah Shaw 01:36
Yeah, and I’m nodding, people who can’t see on the podcast, I’m nodding my head along in agreement because I’m in let’s see a six day migraine attack right now. And the nausea is like I don’t have the head pain today. I just have that all encompassing nausea, where you don’t want to eat something. But you know, you need to eat something. Eating something will help make it go away. But you can’t. It’s a vicious cycle.
Avi 01:58
Yeah, I mean, I mostly have the symptoms that people wouldn’t associate with, like classic migraine, the way that people just think of migraine in general, as like headaches. If I get a headache, like it’s all about the photophobia. It’s all about the aura. It’s about the way that like, that makes me nauseous. And then it really affects the GI system. And people don’t talk about that. Like I literally had the diagnosis of migraine for like 15 years before anyone was like, hey, it does things other than headaches.
Sarah Shaw 02:25
Right.
Avi 02:26
Like my mom has it like everyone in my family has it. And we still didn’t know.
Sarah Shaw 02:29
Would you be able to talk a little bit about this feeling right of having these symptoms, but not having a diagnosis, but you your family has this history of it being in the funeral, but nobody kind of talks about that? Do you want to dig into that a little bit?
Avi 02:43
It’s sort of mind blowing, because it’s not like these people, my relatives and like the people who came before me who also had these conditions. It’s not like they weren’t trying to find help. Even most recently, my mom raising us, like she went to doctors and asked for help. Like, she went to multiple different types of doctors and asked for help. And like they routinely were just like, no, there’s nothing wrong. Like we went through so many evaluations as children and like almost nothing came of it. So it’s just like this hopelessness, like interacting with the medical system.
Sarah Shaw 03:12
Especially when you are living with an invisible illness, right? Something that people can’t see. And then you add on being either a woman or a person from the LGBTQIA plus community or add on the layers of if you’re someone from a marginalized community, like it’s so hard for us to get the care that we so deserve, especially when you can’t see our pain, right? It’s invisible. And I’m sorry that you and your family have had to go through that. And something that we’re really passionate about here at Global Health Living Foundation and Talking Head Pain podcast is making sure that patients’ stories that typically do not get told are given the microphone to tell their stories and Avi and I met through a group for queer people living with endometriosis, and we got to talking and we also found out that Avi also lives with migraine attacks. And I think it’s so interesting the intersections of being a queer person and living with an invisible illness such as chronic migraine or endometriosis. And Avi I’d liked if you wouldn’t mind talking about your experience as a trans man and non-binary person living with migraine attacks. What has it been like for you navigating the healthcare system?
Avi 04:34
I mean, in general it’s just like this is exhausting thing that I have to do like it’s frustrating because you know, going into it that like the best case scenario is not super great. And every time like my legal name has not changed yet it still I have to deal with that whole rigmarole every single time and like a lot of these places don’t really see the danger in outing a trans person in their lobby, but I’ve been like followed back to my car and like harassed by like random people in the lobby because like, you never know who’s there, they’re just other patients. So I’ve had to address that with all these different clinic systems. And that’s before even getting into the care. And when you’re talking about care for, like different things going on at the same time, like when I went on testosterone, like, my aura got worse. And I’ve thought about it a lot over the years about whether I want to stay on it or not. And a big reason that I am staying on it is because it is probably helping not, you know, the endometriosis not get like, much worse, because if I was just with my natural estrogen, like that’s not good for that’s gonna flare the symptoms. So it’s just this annoying, like thing where I have to like pick one.
Sarah Shaw 05:38
Yeah, that’s exhausting the kind of like, you have to choose your battles, which verses which and when you live with comorbidities, it’s kind of like, okay, what can I do to help the one that isn’t going to make the other one worse? And yeah, that’s something that I’ve had to have discussions with my OBGYN and my headache specialists. And if you add another layer of being a non-binary person and a trans man into that, we’re talking about testosterone, like that’s something that you have to have serious conversations with your providers about and you want to feel safe, having those conversations with your providers. If you can’t even get into the lobby and you’re dead named. How does that make you feel like you can go into the situation feeling heard, seen, validated, and safe?
Avi 06:28
Yeah, I mean, right off the bat, it like damages the relationship with whichever provider you’re going to be seeing, because you’re already dysregulated. And I have a diagnosis of like, just autonomic dysfunction. And I know part of it is like inappropriate Tachycardia Syndrome. But there’s other stuff that we’re not sure if it’s something with a specific diagnosis. But in any case, the triggers for that, I mean, like with all these conditions, right, there’s triggers. So with my dysautonomia, big triggers are like stress, like very bad stress. So having to worry that I’m going to deal with an entire lobby full of people asking you about being trans knowing that I’m trans, all this stuff, like it makes it hard just to like keep my heart rate down for when they’re going to be taking my blood pressure and everything. Like I get comments all the time, they’re like, oh, it’s high. I’m like, yeah, that’s because you guys have been stressing me out. Stop it.
Sarah Shaw 07:16
I have high blood pressure, I know that going to the doctor, in general is a very stressful experience. Like maybe we should be playing some calming music when we go into there and maybe not have the light so bright or making the atmosphere more patient-centered. And I think that leads into my next question, which it shouldn’t be but you know, how would you like health care providers and practices to engage with the LGBTQIA plus community to make their practices more welcoming, more gender-affirming, you know, I know the word safe spaces. It’s hard to find these days. And I don’t use that term lightly. But what are ways that they can make it a better environment for patients like you?
Avi 08:00
I think that the number one way that these places could genuinely enact, like actual change is if they start hiring actual trans people to do the teachings because they’re not hiring trans people at the moment, like I have been dealing with Patient Relations at all these different clinic systems. And there’s one large clinic system that my whole team used to be at, I would ask them, you know, I’m getting dead named and misgendered at the gender clinic, like, why is this happening? And they finally got me an answer on like, who exactly provides their trainings, and it was the head of the gender department at this large clinic system. And she’s a maybe like, 70 year old white cis woman who I had an appointment with in like 2017 18, something like that. And she is very fatphobic. She told me at the time that like, I shouldn’t get top surgery until I lost a lot of weight because it wouldn’t be aesthetically pleasing, which is just like her saying that she wouldn’t be attracted to me. So why would I do it? Like, why would she say that to a patient? That’s so weird.
Sarah Shaw 08:55
That’s not necessary in my patient space at all.
Avi 08:58
Yeah.
Sarah Shaw 08:58
That doesn’t make you feel safe and doesn’t make you feel like your top surgery shouldn’t matter on that level to her.
Avi 09:04
Yeah. And it’s not that it matters because everyone every size should be able to access surgery, but my weight was not even at the limit. They’re like, where they worry about if you’re gonna be able to fit into machines and stuff like that. It wasn’t even like that. And I was bed bound for like that year. So she knew that I wasn’t going to be able to get up and exercise regardless. And then after, you know, top surgery, not only is that weight gone off your body physically, but you then you usually lose some more weight because you’re able to walk around and do things that you enjoy and feel confident in yourself. Oh, it’s just silly. If she wanted me to lose weight, that would have been the way to help me do it. But instead she like actively like she sent a message to my surgeon saying that the surgeon should gate keep me from it until I lost weight. She told me that it’s fine to refer to all trans people as transsexuals. And there’s like 2018 and I was like, no, that’s not fine. Like, why would you think that’s fine? And so she’s the one who’s providing like these trainings to the entire system, which is probably almost 100 clinics like in the metro area here in hospitals as well.
Sarah Shaw 10:00
Not good representation is so crucial and so important in healthcare settings. And this is the gender clinic, there should be transgender people on the team helping, I don’t want to say guide, but helping be that representation to have these conversations. I think, you know, as someone who just started seeing my very first queer doctor two years ago, it makes all the difference for me and I think everyone should be able to get equitable care. There should be that representation filtered throughout healthcare. And I think you helped answer my question. Absolutely, it starts at the top. And if there is not representation, helping guide these practices, and helping inform medical procedures and ways interact with patients and what to not say and what to say that is so crucial, right?
Avi 10:54
Yeah. And there’s this other clinic system, like a different one that I’ve been working with recently. And it’s been a much more positive experience, just like their entire response to when I have a complaint or whatever is completely different. But they are using my free labor to change all of these things that they should have hired a trans person to come and assess, and, you know, analyze and see like, where are these gaps in equity here, and I’ve told them this and like, you should hire somebody, like, you shouldn’t just wait for me to point things out and have it all be my free labor, even the best places, at least they’re listening to me, but like they’re exploiting. When I’m there for an appointment, I’ve literally offered to them, I was like, I will provide I don’t even need to present, you could have somebody else present it. But I will provide materials to teach these doctors because I don’t have time in my 20 minutes with this doctor that I have to talk about all my complex medical issues to also like teach them about trans stuff like that needs to be a separate thing.
Sarah Shaw 11:47
Absolutely, absolutely. You shouldn’t be there to give a lecture, we are there to get care for yourself, and you’re there to feel better. And that should absolutely fall on the office to implement and to learn and to be better. These are conversations that are really important in that I think we need to be hearing and the conversations that need to continue to happen. And I hope that the people that are out there listening to the podcasts are willing to make changes. And I think waking up and like realizing that we need to be all in. But I think when you get into less cities, and when you’re more rural, we see those go far and few in between. And it shouldn’t matter where you live, you should be able to get good health care, no matter where you live, and you should be able to feel good and feel safe and not feel like you’re giving a lecture on hey, here’s trans 101 when you’re at the doctor, right?
Avi 12:42
Right. I mean, the system is so stressed. It’s obviously people are leaving, there’s a whole parts of the United States now that are like struggling to find any OBGYN. So obviously, there’s all this stuff going on. And at the same time trans people are applying that pressure, people are standing up for themselves, disabled people are standing up for themselves. But yeah, I think that people need to research their disability advocacy history, because that’s intentionally not being taught. They don’t want us to know about the the file for sit in, they don’t want us to know about how we got the ADA in the first place. Because like these things are relatively recent. And like they don’t want us to know about ugly laws, like about like, where disabled people literally weren’t allowed to just be seen in public. So I mean, there’s all these different intersections here, we’re talking about, like trans people with bathrooms, like, all this stuff is being brought back.
Sarah Shaw 13:30
Right.
Avi 13:30
And so I think like disabled people just for their own well-being, because it’s so hard being gaslit. So constantly, like so continually that like you start to not believe yourself. And I’ve known so many disabled people who are like even myself, like sometimes they’ll be like, maybe I’m faking it. And I’m like, I’m by myself, I’m in debilitating pain, like, and I’m not faking it. But when you hear it, like almost every day, your whole life, like you start to believe that even when you don’t want to. So I think that researching that history and seeing that people did make a stink, and they did get things as a result of that. And and that’s the only way we’ve ever gotten results.
Sarah Shaw 14:02
Yeah, I agree. And I think that’s why having these conversations having you on the podcast, being that representation showing the medical community, hey, listen, there are trans people out there that are trying to get care that are trying to go to your facilities that are trying to get medical treatment, but we need more and we need your places to be safer for us. Right now, the climate in the U.S. there are a lot of anti-LGBTQ, specifically anti-trans, like laws going out that are really harming the community. And one of the ways that the healthcare system can help is by not doing that by making the one place that we should feel safe, safe enough for trans people. And so I just appreciate you talking so openly about your experience and knowing that your story is going to be heard by other people and hopefully we can make change happen and make another trans person out there feel like okay, like I can do this I’m not gaslighting myself, I know that these things exist and I can advocate for myself and it takes a team it takes patients speaking up, it takes the healthcare systems cooperating, it helps them being more gender-affirming, welcoming all those things. And with all those things comes obviously like mental health, right. And I talk a lot about mental health on the podcast, I live with anxiety. And I’ve really come to talk more openly about living with anxiety and how debilitating it can be. But I also know that there are different things that they can do to help manage my anxiety and being a non-binary person, Avi, a trans man, what are the little things that you do for yourself to take care of you, when you’re dealing with all the things that are happening being a person living with multiple disabilities?
Avi 15:50
The little things as an autistic person, I take a lot of refuge in music, that’s one of my favorite stims. And I can listen to the same things over and over again, that I’ve been listening to since I was a child. And it’s very regulating for me, I use Silly Putty when I’m in a stressful situation, like I can just and it’s relatively, like, not going to attract attention. It’s not going to bother other people there. So it’s one of those ways that they like, allow you to stim you know what I mean? Yeah, yeah, they’re like, oh, yeah, it’s normal for a guy to just play with silly putty. That’s normal. When it’s like, no, I’m actually being autistic right here in front of you. So yeah, I mean, unmasking for me has been a key part even like in literally like in the health of my like, neuromuscular systems. And I think it’s important,
Sarah Shaw 16:31
Absolutely, do you find that like, I know, for me, a big part of my self-care is community and being with people who share similar chronic illnesses as me or people who are like the endo queer community, or just like finding migraine people that are queer that also, you know, live with my chronic illnesses. Those have been some really, I don’t know, healing, like things of being in community. You talk about being disabled and being in the disability community, have you found that within your circles?
Avi 17:02
Yeah, I mean, I think that community is a concept that I didn’t really grow up with much of as a white American with not much not much tangible connection to my cultural background, I think coming into community has been feeling like you said, and to see reflected, it’s been healing. But it’s also been painful, because I have to see that not only have I gone through all these things, but the system has done this to all these other people. And so you have to sort of sit with that massive pain. I think a lot of Autistics struggle with low empathy, but also with hyper empathy. And so the feeling of hyper empathy of just feeling like everybody’s pain can be just so overwhelming that of course, then you swing back to the low empathy to try and take care of yourself. And yeah, so seeing their pain is difficult. And it’s like the I don’t remember who said it, but it’s, you know, let this radicalize you rather than lead you into despair. Seeing other people and like organizing with them is the only thing that matters. That’s how humans came to be successful. And we’ve somehow like lost touch with that with this, like individualistic nuclear family experiment. That’s just so terrible for all of us.
Sarah Shaw 18:07
I’m a big proponent of chosen family, and finding my people and finding the people that uplift me, and who I can uplift as well. Like, I feel like there’s not enough empathy and not enough compassion these days. And I feel like when I think about the disability community, the migraine community, I feel like and the LGBTQ community, I feel like those intersections, like the little advocates that are coming out and standing up for themselves and being like, we’re not going to take it and it gives me a wonderful sense of pride and hope that we’re in this together. And we’re there for each other. And I think that’s why I brought up community because I feel like in some ways, it’s been a saving grace for me.
Avi 18:49
Yeah, I was just thinking like brought to mind these two different creators that camp on my for you page on TikTok in the last week that they do some gentle parenting content, but it’s like specifically for their like autistic families and just seeing like them talk about like a restraint collapse, which is like when kids come home after school, and they’ve spent all day highly masking and now they can finally they’re in a safe place. And so that they can act like wild little kids and how like misunderstood that wasn’t my own childhood. But to see like these parents that are like millennials, young Gen X, actively recognizing like the neurodivergence in their family and like working with it rather than against it. Like it makes me sad for things that could have been and it makes me so happy to see that things are changing.
Sarah Shaw 19:34
And representation. Like I feel like it’s just so important for our own journeys and seeing people speaking up and seeing the generational boundaries like like us breaking generational ties, and being able to do our own healing and to see ourselves reflected and like in other people, and it gives me hope so I appreciate you bringing that up, Avi, and I appreciate you coming on the show. It’s been wonderful talking with you learning more about you and sharing your story and your experience. And I do hope that things get better. I know that it’s a long journey, but I do have hope. And I think it’s a team effort for us to all keep working together. And I’m glad that we have our little things that give us hope and bring us back down you’re able to unmask at the end of the day and be your authentic self.
Avi 20:23
Yeah, yeah, I think there is hope. Definitely. And I think that it definitely lies in community.
Sarah Shaw 20:28
For sure, for sure. Thank you for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating, write a positive review, and spread the word by sharing with your friends and family. It’ll help more people like you find us. I’m Sarah Shaw and I will see you next time.
Narrator 20:50
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this week’s episode of Talking Head Pain, Sarah is joined by Amanda, a migraine patient, advocate, stay-at-home parent, and educator living with multiple chronic health conditions. Join Sarah and Amanda as they dig into the ebbs and flows of being a parent living with chronic migraine, things we’ve learned from the migraine community, getting the confidence to advocate and speak up for ourselves, the importance of normalizing talks about your chronic illnesses and mental health with your family unit and finding time through self-care of dopamine searching through bird watching and memes.
Navigating Parenthood with Migraine and the Search for Dopamine: A Conversation with Amanda
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Amanda 00:06
“The online space that we have in the migraine community is so invaluable, especially the women doctors in that space who offer their own time to educate the community. They’re invaluable because I’ve learned so much from them. And it’s like, gosh, I wish I could have learned this 10 years ago.”
Sarah Shaw 00:30
Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host Sarah Shaw, Senior Manager of BIPOC Community Outreach at the Global Healthy Living Foundation. I have been living with chronic migraine for almost 10 years and I’m very open about navigating life with my chronic disease journey as well as my experience living with anxiety. This podcast will be a window into other patients’ lives as they navigate their own journeys living with chronic pain, migraine, and mental health. Today, we’re joined by Amanda, a chronic migraine patient, a parent, and a person living with multiple chronic illnesses. We’re going to dig into mental health, parenthood, and navigating chronic illnesses and mental health. Hi, Amanda, welcome to the Talking Head Pain podcast. I’m so happy to have you on today.
Amanda 01:16
Thank you for having me, Sarah. It’s nice to be here.
Sarah Shaw 01:19
I like to start each podcasts off by asking our guests you know, if you could use one word or adjective to describe your migraine attacks, what would they be?
Amanda 01:28
Currently I would use the word dynamic for where I am in my disease journey.
Sarah Shaw 01:33
Do you mind going into that a little bit dynamic?
Amanda 01:36
So I am 41 and entering perimenopause. And my headache specialist has kind of discussed with me that for a lot of his patients when they are people who have a uterus and they are going to enter perimenopause that they can see that their disease may start to change. And I have seen that happen kind of rapidly. And I kind of thought having dealt with my migraine disease since I was a child. I kind of knew what my disease was. And I could kind of coast but my disease has become more dynamic and it’s changing. My symptoms are changing. My auras are changing. I’m having different migraine subtypes that I never have experienced before. And I’m having to learn new things about migraine disease that I didn’t expect or anticipate I would have to do at this point in my life.
Sarah Shaw 02:34
Yeah, thank you for going into that. You mentioned that you have had migraine since you were child, do you mind just walking us through your migraine journey?
Amanda 02:44
Yeah, so I don’t remember when I had my first attack. Because of some other childhood trauma. I don’t have a lot of memories of my childhood. But I just remember migraine always being a part of my life. My mother has migraine disease. And it was kind of just for me a normal part of life, which I know sounds kind of silly. But it wasn’t until actually a couple years ago that I had the realization that it wasn’t normal for a person to be having daily migraine attacks. And when I say that to people who are outside of the migraine community, or the chronic illness space, it seems really silly to them. I’ve had people laugh and say like, oh my gosh, that’s silly. That’s ridiculous. That’s wild that you would think that but I think people inside the migraine community or the chronic illness or the disability community understand what that might feel like, especially as children of people with migraine disease. Because we normalize being in pain, we normalize, living and pushing through those attacks, especially, you know, my mom parenting and running a business out of the home and me parenting and being a stay at home parent educating, you know, being a homeschooling parent and to have that kind of realization in my mid 30s. I felt silly, but it was like, oh, wait, I shouldn’t have pain like this every day. And it wasn’t until after my child was born that I even decided maybe I shouldn’t just have my family doctor treating me for this. Maybe I
Sarah Shaw 04:24
Right
Amanda 04:25
should go see a neurologist. I grew up in a family where we didn’t really go to the doctor go to the emergency room. We didn’t go to the hospital. We just kind of pushed through and we dealt with it. So it was hard for me to say okay, maybe I do need to seek care for this to try to improve my quality of life. So it was a big deal for me to accept that I needed help. I needed to get a doctor involved and try to do something to make things better.
Sarah Shaw 04:50
Yeah, in general, we as a society, especially with women, we don’t really talk about pain because I feel like we are afraid of it being used against us. And also if we talk about pain in families, if we see our parents or our grandmothers or our aunts or people living with pain, if they can, quote on quote, push through the pain, we feel like we need to push through that pain as well. And I appreciate what you said about you know, really, I why had a child I feel like I needed to, I guess sort of like break those generational habits. Things should change.
Amanda 05:24
That’s absolutely it Sarah. Yeah, as a mother, I had that realization, how do I want my child to view herself growing up? Do I want her to prioritize herself? And I do. And I think the best way to teach her to prioritize herself, if she’s in pain is to show her that as a mother, I’m doing that I’m taking care of myself, and I’m seeking help when I need it.
Sarah Shaw 05:49
Right.
Amanda 05:49
The same way, like we talked about for mental health, you know, I needed help with my anxiety, I needed help with my depression that I struggle with, and I want to teach her, it’s okay to do that. And it’s the same thing for help with migraine, I needed help, I couldn’t just go to my GP who was prescribing me a medication, you know, I can’t take NSAIDs because of another medical condition. So I was getting a medicine that I shouldn’t have been prescribed, I didn’t know about medication overuse adaptation headache, I was going through fertility treatment. So it was just, you know, throw this at it because you can’t take anything else. And now all of a sudden, you’re chronic. And you’ve got daily high frequency high severity attacks, and it’s like you need to do something about it.
Sarah Shaw 06:34
And that shouldn’t fall on you as the patient. There is so much stigma still with migraine being such an invisible illness and not being taken seriously where people are getting misdiagnosed, or maybe not given the right medication, because they’re seeing their GP, their general practitioner, because sometimes that’s all the people have access to.
Sarah Shaw 06:55
People don’t have access to neurologists or headache specialists. And what we need to change is for people that can only go to see their general practitioners, there should be more education about migraine disease, and how to treat migraine disease properly so that way our patients, patients like you are not getting over adaptation, headache, they are given medicine that makes them feel good and feel better, or they’re given medication that works properly. And it sounds like your experience fell into that category.
Amanda 06:55
Right.
Amanda 07:26
Yeah, it absolutely did. I look back at what my history has been, especially for a medication, and I feel embarrassed. And I shouldn’t have to feel that way. I feel silly that I wasn’t educated, and I’m an educated person, but I wasn’t educated about my own disease that I couldn’t advocate for myself to my GP to say you shouldn’t have given me this medication, you shouldn’t have told me to take this much of this medication, you were my trusted care provider, and you didn’t give me the level of care that I should have been receiving. Yeah, and that’s hard, especially as a woman to advocate for yourself. And online space that we have in the migraine community is so invaluable. And I know you feel the same way, especially the doctors, especially the women doctors in that space, who offer their own time to educate the community. They’re invaluable, because I’ve learned so much from them, you know, at this point in my age, and it’s like, gosh, I wish I could have learned this 10 years ago, I wish 20 year old me could have read this tweet by this amazing doctor who we all love who’s giving this education to our community because maybe I wouldn’t be chronic now, you know? So you just try to amplify that and try to make sure that everybody who potentially could benefit from that is learning it is seeing it, so maybe it will help someone else.
Sarah Shaw 08:52
Absolutely. I appreciate you bringing up the migraine community and especially the female doctors that are in this space people like Dr. White that are out there.
Amanda 09:00
That’s exactly who I’m referring to.
Sarah Shaw 09:01
People who are out there being staunch advocates for people like us to not only I want to say educate ourselves, but also feel comfortable and confident to have these conversations like with our doctors about the care that we deserve and the migraine community I appreciate what you’re saying about you know, I wish 20 year old me could like take a look at these tweets and advocate and now with the work that I do at Global Health Living Foundation like of course like I’m a lot more confident like standing up for myself and advocating for myself a doctor’s appointment but I there’s still a little part of me that’s like I’m afraid to speak up but like I know that like in order to advocate for myself, like that’s what I need and have to do. So I appreciate you bringing that up.
Amanda 09:43
Yeah, I think it really empowers us, especially as women and kind of gives us the tools that we need to go into these doctor’s appointment. Maybe we’re not feeling confident or we’re not feeling safe because sometimes I feel like it’s an issue of you know, we’re anxious there might some anxiety there, for a lot of us, you know, we’re not feeling safe because we don’t know the environment, we don’t know if the doctor is gonna listen to us or trust us or believe us or give us time that we need to spend with them. And these conversations and community we’re having in these spaces, you know, hopefully can empower some of those conversations and give people the tools they need.
Sarah Shaw 10:24
You brought it up a couple of times about like living with anxiety and migraine, and I’m someone who talks also a lot about like living with anxiety and migraine. And it’s not something that I used to talk about a lot because I was ashamed about living with mental health issues. Do you want to talk a little bit about the journey that like you’ve had with living with an invisible illness like chronic migraine and also living with mental health issues like anxiety and depression, kind of like how those two go hand in hand for you?
Amanda 10:52
Yeah, I have had a struggle with anxiety and depression since early childhood. And it’s something that thankfully, I’ve always been able to be very open and honest and talking about, I haven’t always been kind to myself. But that’s part of I think all of our journeys with our own mental health challenges. I have struggled with going on and off medication how for part of that was my journey becoming a parent struggling to conceive and infertility challenges. I struggled immensely after my daughter was born with postpartum anxiety and kind of hit a wall where I realized I needed to get back on medication to manage my anxiety and depression. But it’s such an integral part of my migraine disease, because they are so interconnected, I feel that every facet of my migraine disease is impacted by my anxiety. And it’s also impacted by my depression that I struggle with, you know, I have some of my most severe attacks that are related to my menstrual migraines. And I also struggle with depression related to my menstrual cycle. And knowing that I’m going to have challenges with depression, at the same time that I’m going to have, you know, a seven to 10 day flare of a migraine attack helps me plan for how I’m going to manage daily to be functional, because I still have to be a mother, I still have to be a partner to my spouse, I thankfully have a very supportive partner who I couldn’t manage my life without, he’s the best teammate that I could have. And I have a child who is learning how to be a child of someone with a chronic illness, who also struggles with mental health issues. That’s part of life, you know, when there’s a whole other cacophony of challenges that come with, right being a parent with chronic illness and mental health issues. And how is that going to affect my child? But that’s how life goes. But being honest, not only with myself, but with the people around me about where I am not only daily with my migraine disease, but with my mental health, make our life more functional for all of us. So my spouse will check in with me and say, how’s the traffic today? And that means am I a green light, am I yellow, am I orange, is a red light day. And that’s not only for my migraine disease, but also for my mental health. And it’s important to check in that way, because it’s all interconnected.
Sarah Shaw 13:42
Right. And being able to communicate in that way is honestly like, I don’t see like a negative of it. There’s only benefits there. I feel like having that communication is just key to benefiting not only you but you guys as a unit, right?
Amanda 13:55
Absolutely. And we do and as a team, you know, for my eight year old to have the emotional intelligence to come up to me and say, you know, Mommy, I feel like I’ve got the morbs today, that’s kind of our family speak for they’re feeling off. They’re feeling down, I want them to have that emotional intelligence. So I feel like us being open as a family team to have those conversations. And you know, my partner also struggles with anxiety, being open and talking about it and normalizing mental health struggles. And also medicating when you need to, is important because that’s just it’s a fact of life. That’s how life goes. I feel like more of us than not struggle with these kinds of things and we need to talk about it.
Sarah Shaw 14:38
Absolutely. You brought up something just now that made me like reflect and think about you know, when I first got diagnosed with migraine, I didn’t have to think twice but okay, I have this pain that I need to take medication for and I would take my medication with no guilt or shame and when I started taking medication for my anxiety, I would feel I don’t know how to explain it, but I’d be like, let me try and push through this anxiety attack without my medication. And I was like, it’s weak of me to need this medication for me to function. And my therapist was like, okay, Sarah, do you feel shame when you take your migraine medication? I was like, no, of course not. And she’s like, then why do you feel that shame for your anxiety? Like she’s like, I know why, because society doesn’t take mental health seriously. And it’s seen as this weakness,
Amanda 15:25
While you have a whole other aspect to as a woman of color.
Sarah Shaw 15:28
Yes, yeah.
Amanda 15:29
And living in a white supremacist society that builds into that you’ve got a whole other layer that built into it, Sarah, absolutely. But your therapist is right, you have to normalize it.
Sarah Shaw 15:39
Absolutely.
Amanda 15:40
But the emotional side of you is separate from the intellectual side of you, intellectually, you know, it’s fine to take this medication, I know that I need it. But as human beings, we’re leading with our emotional brain and to tell that lizard part of our brain,
Sarah Shaw 15:58
Lizard, I love that
Amanda 15:59
You know that like, okay, listen to the intellectual part that saying, we need to do this not the emotional part that’s tapping into that shame and that fight or flight response, get over it.
Sarah Shaw 16:11
Right.
Amanda 16:11
It’s not that easy.
Sarah Shaw 16:13
No, it’s not.
Amanda 16:14
It’s not that easy. And that’s why therapy is so important.
Sarah Shaw 16:17
Love therapy, hear for it.
Amanda 16:19
They are the ones that help us to quiet that lizard brain.
Sarah Shaw 16:24
Absolutely, absolutely. No, I appreciate you saying that. And I want you to talk a little bit about being a parent with a chronic illness being a parent with mental health, depression and anxiety, what that’s like for you.
Amanda 16:38
So being a parent, I feel like the moment your child is born, you and I think especially as the birthing parent, you immediately have this guilt, that just is a part of being a parent that you’re going to fight I think the whole time that you’re a parent, and again, it comes to that emotional part of your brain you’re constantly trying to fight with. So you know, intellectually, I know that I’m doing the best I can. And that having her watch me struggle with my chronic illness and showing her that I can be resilient, you know, are all good things for her to learn. But then that emotional part of my brain struggles with is she going to resent that I couldn’t always run around in the yard with her or that there were things we couldn’t do, because you know, mommy was having an attack that day, or in the world that we’re living in, in a global pandemic, we’re still shielding from COVID, I have a complicated health status, you know, I have multiple chronic illnesses, you know, we can’t just be back immersed in the world is she going to resent that she missed out on things. So there’s the two sides of it. But we, as a family live kind of just an open lifestyle with our child, and we always have since she was born, so we have open and honest conversations with her. And we tell her the truth. And she knows all the facets of my illness, and we don’t hide things from her. So when I’m having an attack, I tell her I’m having an attack. When I’m struggling with medical issues. I tell her, I’m struggling with medical issues. If I need to cry, I cry in front of her and we talk about why I’m crying. But if we’re joyful, we’re joyful when we talk about why we’re joyful. And I feel like emotional intelligence is just as crucial a part of raising my child as is the social intelligence of being honest with her about what the world looks like.
Sarah Shaw 18:39
That’s honestly, I feel like all you can do and all that kind of goes into like my next question, which is about like self care, and like mental health, and like, I know that like on Twitter, like, I look forward to like your bird updates, like every single day when you’re talking about your birds, and it’s a part of my self care routine, where I’m like, okay, what’s happening in Amanda’s backyard today? What are the titmouses is doing today? What is the like, I’m sure that’s a part of your self care tips. Like what do you do to make sure you’re taking care of you?
Amanda 19:12
Yeah, it’s hard, especially as a parent, you know, I’m a stay at home mom, and I’m her educator, we learn through doing life, but there’s not a lot of time left in the day to have time for me. So I try to find moments where I can and like you said, you see the memes where people are like, you know, you’ve hit middle age where like bird watching is like what you do. I am literally the dictionary definition of that. I got a like a bird camera for my 40th birthday. And you cannot take my birds from me. I love my birds. We name them names. They have little families. We have bird drama, and it is calming to watch them and they’re beautiful. And so I watch my birds, I do fiber art. I do needle felting and embroidery. And I tried to find some time in the evening where my spouse takes some time to hang out with the kid. And I take some time for myself. And sometimes I have that end of the day, you know, let down flare where my head is just killing me. And that could mean that I’m just laying in the bed after taking a half an hour shower, trying to get an attack to break with my eyes closed. And sometimes for people with migraine disease, that is our self care, especially as parents because I don’t have the option of laying in bed all day. That’s never an option for me. As much as I’d like to say I can’t you know, we shouldn’t push through a migraine attack. I don’t always have that choice, you know, so you have to find pockets. Yeah, pockets of self care.
Sarah Shaw 20:46
Absolutely. Those pockets are so important. And whenever you can find them, I’m sure you cherish them. And you’re like, It’s mommy time. Like, it’s time for me to just,
Amanda 20:54
Yeah
Sarah Shaw 20:54
Exist with myself, even if I’m in pain like that steal your time.
Amanda 20:59
Right. And you know, it’s so funny because there’s been some conversations in the online space like, well, if you’re in so much pain, why are you on Twitter? And it’s like, because I need to see like what funny memes Sarah has posted on Instagram today so that I can have 10 minutes of joy and community. And yeah, I’m in if you could even know the level of pain I’m in right now, you’d probably drive yourself to the emergency room, but I’m dealing with it. And I want to see Sarah’s funny memes because they bring me a pocket of joy. And that’s my self care right now both mentally and that’s what I need.
Sarah Shaw 21:34
I’m glad that you are able to find these pockets of time to enjoy your birds, enjoy your needling, enjoy the memes because that is what keeps us going. And I think it’s the extra dopamine that we need to get through.
Amanda 21:47
It is it is and it’s so funny because even my kid they will say like, yeah, mommy’s scrolling TikTok for some dopamine. Let’s watch some snake hatching videos for dopamine.
Sarah Shaw 21:58
We’re on the search for dopamine, that’s what we’re going to call this episode.
Amanda 22:01
We’re on the search for dopamine.
Sarah Shaw 22:03
Oh, well, Amanda, thank you so much for coming on the show today. It was just such a pleasure to talk with you and to learn a little bit more about parenthood, migraine, mental illness, and searching for that dopamine. It’s been a pleasure.
Amanda 22:15
Thanks for having me, Sarah. It was really a lot of fun.
Sarah Shaw 22:19
Thank you for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating, write a positive review, and spread the word by sharing with your friends and family. It’ll help more people like you find us. I’m Sarah Shaw and I will see you next time.
Narrator 22:39
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this week’s episode of Talking Head Pain, Sarah is joined by Bernadette, a migraine advocate, digital creator, and somatic-informed certified educator who runs a chronic illness Instagram account called “chronicaccounts.” Bernadette is a former classroom teacher who now focuses on educating and supporting others to understand their life with migraine disease better.
Join Sarah and Bernadette as they discuss Bernadette’s journey navigating multiple misdiagnoses, leading to a delayed migraine diagnosis, pivoting from a well-loved career, and finding community. Hear how Bernadette’s migraine diagnosis journey ultimately led her to patient advocacy.
From Misdiagnosis to Advocacy: A Conversation with Bernadette Gorczyca
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Bernadette Gorczyca 00:06
“By the time I started teaching full time, I was a wreck, being an overachiever, and at that point, still trying to figure out what’s wrong with me. Then I was diagnosed with an autoimmune condition and even that doctor knew, yeah, I have migraine attacks, no conversation about treating the migraine or anything, so I just thought it was normal to live with migraine attacks.”
Sarah Shaw 00:30
Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host Sarah Shaw, Senior Manager of BIPOC Community Outreach at the Global Healthy Living Foundation. I have been living with chronic migraine for almost 10 years and I’m very open about navigating life with my chronic disease journey as well as my experience living with anxiety. This podcast will be a window into other patients lives as they navigate their own journeys living with chronic pain, migraine, and mental health. Today we are joined by Bernadette, a migraine and chronic illness support advocate and digital creator who runs an Instagram account called chronic accounts. Hi, Bernadette, welcome to the show. I like to start each episode off by asking our guests if you could use one word or adjective to describe your migraine attacks, what would it be?
Bernadette Gorczyca 01:18
Hi, Sarah, thank you for having me. That’s a hard question. I have such a range of attacks, but I would definitely say debilitating.
Sarah Shaw 01:26
Yeah, that’s a common word that a lot of our guests use. Yes, it’s debilitating. And I think it helps express to people the severity of what migraine is because typically, as we know, we’re still fighting stigma against what a migraine attack is and how people think it’s just a bad headache. And when you use the word debilitating, I think it helps paint like a broader picture. And I know that you’ve been like living with chronic migraine for a while now. Why don’t you walk us through what your journey has been like, how and when you got diagnosed and where you’re at now?
Bernadette Gorczyca 02:00
Yeah, absolutely. My story. It seems unique, but unfortunately, isn’t at all. It’s a story of a lot of people living with migraine in my family. There’s just a history of generations of undiagnosed migraine disease. So when I started having symptoms of migraine as a very young child, which was more abdominal migraine, my parents were trying to figure out what what was wrong with me. So we’d go to the pediatrician, we ended up with specialists at GI specialists, and I ended up having a scope being done and they thought, oh, she fits all of the diagnosis criteria for hiatal hernia, but it wasn’t there when we looked so she must have a sliding hiatal hernia because that comes and goes, but really, I was having abdominal migraine.
Sarah Shaw 02:44
Wow.
Bernadette Gorczyca 02:45
So that was my first misdiagnosis. And then from there, by the time I was in middle school, I was having classic migraine attacks. But when I went to the pediatrician, she would look at me diagnose me and say, oh, you have all of the symptoms of sinusitis, but you don’t have a fever, that’s so weird. As an adult, now I understand, oh, that’s classic sinus migraine. But then I was misdiagnosed with chronic sinusitis, because I was already having really regular episodic migraine in middle school. And then by the time I hit high school, I was just having regular migraine attacks all the time, but no diagnosis. And I finally got to a neurologist at the age of 17, because of course, my parents kept advocating for me, but when I got to the neurologist, she diagnosed me with stress headaches, and didn’t have any conversation about migraine disease, obviously, and didn’t give me any information about medication overuse headache, because I used to get through high school, I was very active. I had a job. I was volunteering regularly, I was around the clock athlete, I was captain of the varsity soccer team, I would plan my day around if I had a test or if I had a soccer game. You know, like that was how I got through high school, I would be so tired in the morning. Sometimes my parents would have to like spray water on me to get me out of bed to go to school because I didn’t have accommodations or anything. I was just living with undiagnosed chronic migraine and I was trying my best to keep up with everyone around me and act like everything was fine when nothing was fine. And then by the time I started teaching full time, I was a wreck because I was being an overachiever. as a classroom teacher, and at that point, still trying to figure out what’s wrong with me. Then I was diagnosed with an autoimmune condition and still no conversation even that doctor knew yeah, I had migraine attacks, no conversation about treating the migraine or anything. So I just thought it was normal to live with migraine attacks. And so did everyone else in my family. My mom was living with undiagnosed migraine, my sister, my aunts, my cousins and flash forward to down the years in my teaching career. It was the fall of 2019, I would always take care of my students with migraine attacks because I could see it right away if a student was going through a migraine attack and one of my students came to me and was like like, oh, I’m having such a bad attack, but I just took a triptan, so hopefully we’ll be okay. And I was like, well, what’s a triptan? And she was like Miss G, you don’t know what a triptan is? Are you kidding me?
Sarah Shaw 05:10
Bernadette Gorczyca 05:10
I was like, no, because obviously they knew I had bad migraine attacks is like you need to get back to the neurologist. So at that point, I was like, you’re right. Again, I still don’t understand it was a neurological condition. I didn’t understand any of this. So I went to my GP at this point, I was probably having one to two days a month without a migraine attack. Like I was always high frequency episodic as an adult, I just didn’t understand that and cried to my neurologist because I was like, I don’t have a life at this point. Like it’s just survived work, crash, teach through extreme pain get through the day. And yeah, I finally got to a neurologist, January of 2020, I had a brief period of being a little better because triptans were helping me even though the preventative meds didn’t help yet. And then I had a virus that was most likely COVID-19, right at the start of the pandemic sick for six weeks and after that, I progressed to a severe intractable attack that was completely resistant to treatment. So at that point, I had neurologist, nothing was working, but at least I was in care. So I had this severe and intractable attack where I was desperate because I always knew my attacks would break. Even if they lasted for 14 days, they would break all of a sudden, I had this attack that lasted over a month. And that’s when I realized, oh, my god, this hasn’t broken. And it was the lowest of lows. I thought, How can you live like this? I get emotional thinking about it. And that’s my just started researching, how can I break this migraine attacks still not getting I found the migraine community, I found all these resources. And that’s when I finally understood what I was facing what my family had been facing. And that’s what started this journey being an advocate, essentially.
Sarah Shaw 06:44
Wow, wow, a lot of like, what you’re saying is so common is so so common from what you’re saying about it being in your family and your family members being undiagnosed so you as a child like living with it, and doctors not knowing what is going on and misdiagnosing you as a kid. And then as a kid, like having to push through that pain and deal with like school and wondering like, well, I have to be on the same level as my peers. So I have to push through these attacks. And as we know, now, when you push through attacks, it makes it worse. And I feel like too, if you add the added layer of being like a woman living with an invisible illness, there’s just so many different barriers and hoops that like we’ve had to kind of jump through. And there’s a lot of onus on us to like do the education to read more about what this disease is how it progresses, that it’s not your fault, that it is not common to be living in pain 24/7 weeks out of the year, and only having two days of break of pain. And I can relate to a lot of like what you’re saying, because it took me a while in my chronic illness journey to start even, like openly speaking about the pain, right? Like there’s this stigma, where especially like for women, if we talk about pain, like it, there’s this thing of like, oh, you’re just a hypochondriac or its anxiety or we’re not strong enough. And we want to be on the same level as our peers. And you know, god forbid, if we have a chronic illness, people think that it makes us weak. But in fact, I think it’s the exact opposite. I think it makes us strong and just how long you’ve had to be dealing with this journey. And so many people that I’ve been speaking to recently 2020 has been about the time where they’re like I finally got my your diagnosis in getting on the right treatment. It’s been so common, and I think we’re starting to see in the migraine community more and more resources, more and more people talking openly about it and breaking the stigma and also the whole rhetoric of it’s not just a headache, right? Like, it’s so much more than that. You’re talking about abdominal migraine of where I didn’t know the word for what I was experiencing as a kid was most likely abdominal migraine, my stomach would hurt so much. My dad would just think that I was carsick or seasick or just I ate something bad and looking back and I’m like, that was probably abdominal migraine attacks.
Bernadette Gorczyca 09:08
What’s so interesting about what you’re saying, too, is when you’re a kid and you’re trying to figure out what’s wrong with you, and you’re know you’re having these pains, but then the adults are looking at you like, well, we can’t find anything. You already at that age, even as a young kid I knew to then start being quiet about it because you feel like you are making it up even though you’re absolutely not. But even at that young age, you then start to think oh, I’m going to be quiet about what I’m experiencing. Even recently, I remembered this memory and now I know it was a migraine attack. I remember waking up in second grade and feeling like I couldn’t move. It was like felt like shards of glass to move my muscles in my body and my mom was like, come on, you know, you got to get to school even now as an adult, I have these attacks where my whole body’s impacted in prodrome. You know what it took me a long time to figure that out. And that’s what I was experiencing. And I remember walking down the hallway, all of a sudden throwing up in the middle of the hallway, and everything broke after that I felt fine after. And if now I know looking back, that was a migraine attack.
Sarah Shaw 10:15
Right. And it all comes down to education, resources, access to education, access to doctors, and people that know the short tail time of a migraine attack. And just from what you were speaking to, when you were working with your students where you knew you could see it on their faces, and then you were able to navigate and work with them through that attack. And I think knowing those signs allow us to jump into action and take our abortive medications to kind of get ahead of the attack. I want to talk a little bit about I know you mentioned that you lived abroad for a little bit. I’m curious to know, you know, were you still dealing with chronic migraine while you were living abroad? And what was that experience like for you?
Bernadette Gorczyca 10:59
Yeah, I’ve lived with chronic migraine for as long as I can remember. So my life just consisted of pushing through constant migraine attacks, because this was before I was educated in migraine before I was treated. So I just thought this is normal life, right? So I live my life with constant migraine attacks. And I just continued to perform at a high level, I had one of my students say to me once like Miss G, were you born smiling? My kids had no idea what I was going through when I was teaching. So I would just keep going, I would get through the day, and I’d crash. You know, Ida had always wanted to live abroad. So I had a conversation with my partner, we looked into ways to do it. And we did it. We moved abroad, and I was a teacher. So I was able to get a job at an international school. So a few years into that. I remember Ryan turning to me and say, well, I don’t think we should plan any more trips. Because if we go on a trip, what’s the point? You’re sick in the hotel room with a migraine attack over the toilet? You know, like for him, he couldn’t understand it. And I didn’t have the words to express it then and I didn’t understand again, what I was going through back then. But I remember being so heartbroken thinking, well, you know, what, if even if I’m out for two days during the trip, I still had three days where I was able to experience it. Because I just I still wanted the opportunity to live even if I was going through these constant attacks. And I wish now that I had my whole life changed when I finally understood the depth of what I was going through when I finally understood that migraine is a neurological disease, you know what it reframes my entire life. And it also helped me learn how to take care of myself because before that time, I wasn’t taking care of myself. It was push crash, push crash, and my body was so past how I should have been taking care of it for a very long time. Because I didn’t understand I was disabled and I just was completely disconnected from my body essentially.
Sarah Shaw 13:00
Yeah, I think it like goes like this stigma of invisible illness, the stigma of even for a lot of people using the word disabled people still are uncomfortable. I didn’t talk about the fact I live with a chronic illness. I think there’s like a grieving process that we go through of mourning the person that we once were, but I thought it was really beautiful what you said, like, I still wanted to do what I wanted to do with migraine. And I think there’s a balance, like there are things that I know that I can no longer do. But there are adjustments that I can make to you know, still enjoy and live my life and you know, to advocate for myself and to speak up when things get really, really bad and you brought up your partner and my partner is a big part of my migraine toolkit of just having someone that’s supportive and empathetic and understanding. Can you talk about like what it’s been like to be in a relationship with someone who doesn’t have a chronic illness?
Bernadette Gorczyca 13:53
Yeah, what’s really interesting is before I was educated in migraine, I would say there was a lot of miscommunication because I didn’t have the words to express what I was going through. So he couldn’t understand why oh, why she dragging in the morning? Or why isn’t she able to do this and this and this, what’s been so interesting is I’ve gone on this huge journey of learning about myself and how to care for myself and he’s gone on that journey right alongside with me. So what’s been great is there’s just been this openness and and not to say that it hasn’t come with hardship, because it’s been a journey for him as well. But we’ve grown together and I find that to be so helpful because I even have family members that have a hard time understanding they think but you were okay before you had the severe intractable attack. Well, no, I was never okay. Right. And even like you said, this term disability might come with grief. Well, for me, it came with relief because I had struggled so much and didn’t understand why. And for me, it was like, oh, this is why you know, and it gave me the permission to live alongside migraine rather than trying to push through it and ignore it and you know push it away. It gave me this freedom to do build and design a life that was in tune with my needs. And Ryan’s been able to go alongside me in that journey and respect that and try as best as he can to support it and understand it. But it’s definitely been a learning journey for both of us for sure. Yeah.
Sarah Shaw 15:16
Of course, of course, I feel like anything, when you’re on that journey, your partner is also on that journey. And in the beginning, I was kind of quiet and silently suffering without telling my partner and she was like, tell me when you’re in pain, please and she’s like, I can sometimes see it on your face, but then you won’t tell me that you’re struggling and trying to push through a migraine attack when you really should be taking your medication and laying down and being in a dark room away from people. And I’m like, why’d you know, I didn’t want to, like, disappoint you. And it’s come with a lot of learning curves for both of us. And I think the fact that she’s kind of seen me, she was there at the very beginning of my migraine journey. So I think it like made it a little bit easier of knowing, like what to do and how to navigate. And she comes with me to my doctor’s appointment, which is just, it’s super helpful to her to learn the terminology and the language. And you know, it’s so cute. Now she’s like, did you need your medication to like, name, the name, and she’ll come and bring it to me. And she’s like, you’re on this, this and this, and this. And I think it’s just being able to have these conversations. And you know, in that openness definitely helps with your treatment plan. So I wanted to focus a little bit on your Instagram account chronic accounts, can you tell us what inspired you to create this space for people living with chronic illness?
Bernadette Gorczyca 16:30
Yeah, what’s interesting, when I first created it, I saw I had this severe intractable attack that at this point I had already lived with for a year and a half about and the first year I got approval to work from home. So I worked from home with a nonstop severe intractable attack teaching, because it was the first year the pandemic and it was that year where teachers were working from home. So rather than taking time off, I was like, oh, this is great. I might be housebound, but I can still work. Because again, I still wasn’t understanding, hey, you need to stop and take care of yourself. So I worked from home that year, in the second year, that wasn’t an option. And in the Netherlands, there is sick leave. It’s your right, if you need it, you take it, there’s a system built in place for it. So that second year, I was still hoping I could do part time even though I still wasn’t able to commute. I don’t know what I was thinking. And my HR and my head of school where Iike you tried to work alongside this, you you’re not better, you need to take the time to heal and they’re like take a year off like they were the ones pushing me to do it. So that was filled with a lot of grief. I adored my students. I was teaching high school, my students were in their 12th grade year, I wanted to get them over the finish line. And I had to let go. That was sort of a lot of grief. I was about a month into sick leave where I was just like I felt like people didn’t understand their thinking my colleagues like, oh, this person’s on sick leave for migraine. You know, I just knew people would have no clue of what I was going through. And I had just fallen off the face of the planet. I had a full life, not a full life. But I had somewhat of a social life. I had friends, I got this severe intractable attack, I was gone, I was home, I was barely trying to go for a walk and get to my doctor’s appointment. And that was my life at that point. And I just felt like I wanted almost like I think it first came from the need to like want to defend myself or something. Just share this as my experience. I wanted people to just know my friends and family. This is what I’m going through. And also it was so hard to have conversations, I was so exhausted that I felt like okay, this is a way where I can update people in one place. And then everyone can get tuned in to what’s going on and where I’m at, because I just didn’t have the ability to keep up with my relationships. And then it just became like a huge passion project from there where I wanted to reach people like me, people living with migraine thinking it was normal, and helping them break through that stigma and finally realize, oh my gosh, there’s nothing normal about this. Let me get treatment so I can reclaim my life. And it’s gone from there. And I was an English teacher for about 10 years before it transitions to teaching learning support. So there was a point where I got really passionate about migraine language and I still am I thought I was gonna be teaching for my entire life never once that I ever think I wouldn’t be in the classroom. Like I was so passionate about it. I saw my students like literally as my kids like I love teaching and sorry I get emotional talking about it. And yeah, like realizing what I had to grieve leaving the classroom fully grieve it but then after I grieved it and it’s something I still grieve obviously, possibilities opened up because then you look at your and this is for anyone going through migraine having to leave your career, you get to sit back and think, wow, these are all the skills I have.
Sarah Shaw 17:11
Right.
Bernadette Gorczyca 17:12
What else can I do? And then you get to transform. And I’m so glad that I had the ability to create content that helps people express to the people they needed the most in their support system to be able to get that support hopefully or help people understand just a little better of what they’re actually going through because it’s so hard. The migraine stigma runs so deep that we end up like gaslighting ourselves because we just don’t understand that the person next to us isn’t going through those debilitating symptoms on a daily basis or monthly basis if they’re not on chronic migraine or whatever it is, but you know, it’s not normal. That’s my biggest thing migraine is there’s nothing normal about it and I wish people could understand the level of severity of what it inflicts on people that have to learn to live alongside it.
Sarah Shaw 20:31
Right, and a matter of transition and a matter of the things we have to give up and the things we have to navigate. And I think what you said is something that about grieving, like the career that you had, and but you were able to pivot and I think we don’t really talk about grieving enough in general, as a society, but like grieving, you said that you thought you were going to be a teacher for your entire life. But I’d like to kind of twist it a little bit, you are still a teacher, you are still educating and you are still touching a lot of people’s lives and helping the community kind of take not pride in themselves, but to take ownership and learn how to advocate for themselves and learn how to share these conversations like with their family members, with their friends with a friend who maybe is somebody who’s like, why are you always canceling on me last minute or I don’t understand like you were fine yesterday. And no, no, I’m actually never fine. Like, I’m not fine anytime. I’m putting on this mask, like you said, I’m putting on this mask for you. So that way I can quote unquote, seem normal. But what even is like normal? What is normal these days?
Bernadette Gorczyca 21:37
Yeah. And like you said about masking? Like I I’m an open advocate. And really the people that mainly see me without my mask on. It’s Ryan, it’s my parents, my sister, you know what I mean? It’s the people closest to me, where I know I have the ultimate safety like these people will love me no matter what. Other than that there’s a mask and all the time, like you’re not going to see how I’m actually feeling if I’m spending time with you, because I’ve done it my whole life. And this goes for many people living with migraine disease and chronic illness like you can’t see by looking at us all of what we’re feeling or that heavy fatigue?
Sarah Shaw 22:09
Absolutely. It’s something I think a lot of people can really relate to. And it goes into my last question which talking about putting up a mask, but like I talk a lot about like mental health and migraine and the importance of taking care of yourself on your wellness journey, what sort of like self care tips do you do for yourself to make sure you’re taking care of you?
Bernadette Gorczyca 22:29
So one of my favorite self care practices is literally just being in water. So I realized like two summers ago, whenever I was in water, my migraine symptoms are better. And I think it’s because my nervous system just kind of like calms down and find some safe space. So it’s just like finding practice things like swimming is really helpful for me, gentle walks, pacing is huge for my self care, just like adjusting to a gentle way of life. But yeah, it’s a lot of like soothing nervous system practices, even drinking a cup of tea at the end of the day. But it puts you in a space where you have to listen to your body and then adjust to take care of yourself.
Bernadette Gorczyca 23:08
In those moments where all of a sudden you’re feeling high anxiety, okay, I have like a toolkit of things I can do to help myself in those moments. So you know, I take a bath, I might do some restorative yoga, might put a weighted blanket on me, just having kind of like a toolkit of self care practices that I can use for different moments. If I’m angry, if I’m anxious if I’m super exhausted. Yeah.
Sarah Shaw 23:08
Right.
Sarah Shaw 23:29
That’s amazing. Thank you for sharing all of what you do. And I think being in the water like is super calming to me too. So being able to be in tune and in touch with yourselves and bring yourself down to a more calm and like restorative space, I think is crucial. And I’m glad that you’ve been able to navigate and figure out what works for you. Well, Bernadette, thank you so much for coming on the show with us and talking about your journey and what’s been helpful for you and how you’ve been able to pivot and navigate I really hope that it resonates with our listeners and just thank you again for sharing your story.
Bernadette Gorczyca 24:00
Thank you so much for having me on. This was lovely.
Sarah Shaw 24:04
Thank you for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating, write a positive review, and spread the word by sharing with your friends and family. It’ll help more people like you find us. I’m Sarah Shaw and I will see you next time.
Narrator 24:23
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this week’s episode of Talking Head Pain, Joe is joined by Dr. Nina Riggins, a board-certified neurologist who specializes in headache medicine and traumatic brain injury. The episode sheds lights on the intersection of migraine, weight management, and the impact of a new class of weight-loss drugs, GLP-1 agonists. Joe provides his own patient insight by sharing his personal experience with weight loss and migraine. Together, they also discuss the importance of a patient-specific plan and open communication between doctors and patients.
Unraveling the Weight Loss-Migraine Connection: A Conversation with Dr. Nina Riggins
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Dr. Nina Riggins 00:10
So beautiful part about this new medication class GLP-1 agonists that they do not narrow vessels. So GLP-1 receptors, they are responsible for multiple things. They affect our glucose, blood sugar, and so we get more insulin, and we can potentially lose weight and fight diabetes.
Joe Coe 00:38
Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host, Joe Coe, Director of Therapeutic Area Growth and Integration with the Global Healthy Living Foundation, as well as Co-President of GHLF Canada. I’ve been a migraine patient for over 20 years, so I know firsthand how debilitating this disease can be. I’m here with a really wonderful neurologist who is a friend Dr. Nina Riggins. She is a board certified neurologist who specializes in headache medicine and traumatic brain injury. She’s from a UC San Diego School of Medicine and among other things, she trains medical students, residents, and fellows. And she looks at really interesting research questions and that’s why she’s with us today. It’s at the American Headache Society’s meeting in Austin, a month or so ago. And there was a poster that Dr. Riggins presented that was super interesting about weight loss and weight loss, drugs and migraine. So what we’re going to be talking about a very sensitive topic, but one that we should be talking about. So Dr. Riggins, how are you doing today?
Dr. Nina Riggins 01:47
I’m doing great, thank you so much, Joe. I’m super excited to be here. We have such an amazing conversation about lifestyle and new medications, new ways to treat, pause migraine, headache, and approach weight loss. And I’m very grateful to be here today.
Joe Coe 02:08
Yeah, and this is a really difficult conversation to have. And as someone who has struggled with weight issues and weight management, it’s something that I wanted to, at some point really tackle here on Talking Head Pain. So the conversation that we had in Austin was really enlightening about how we have to approach people as a people. And we get shamed by our doctors, we are told really negative things about weight, we are hearing things that might not make us want to take action. On one spectrum, we have people that need to lose weight, according to their physicians on the other, we have people that might need to gain weight that could help them with their condition. So it’s a really, really challenging thing. And it’s such a personal topic. So wanted to just put that out there that this is both my experience and as an n of one. So I’m going to be speaking from my experience as Joe and we’re going to be sharing some interesting research about a newly approved weight management drug. It’s not a new class of medication. It’s been around for quite a bit, but it’s becoming newly approved for weight loss in particular. So Dr. Riggins, can you give us a little bit of an overview of the research that you presented in your poster?
Dr. Nina Riggins 03:29
Yes, thank you so much. So it was June Headache and Migraine Awareness Month, and I was thrilled that medical students are our future they’re able to travel with me to American Headache Society in Austin, Texas, where we presented a poster on GLP-1 agonists and potential effects on people who live with migraine, and specifically this chronic migraine. For me it was eye opening experience when I was in my clinic with our excellent group of medical providers but also trainees and we start to see patients coming in on this new medications. In the past we only had medications with more side effects for weight loss, an example would be something amphetamine-like which can narrow your vessel and this coupled with triptan which also narrow vessel make me really concern at times. So when new class of medications arrived, we immediately start looking what does it do to vessels are we potentially narrowing them and I was relieved to learn no, so beautiful part about this new medication class GLP-1 agonists that they do not narrow vessels.
Joe Coe 05:04
So how do they work? They work on hormones, the GLP-1 antagonists.
Dr. Nina Riggins 05:10
So we think that there’s few ways of action. So GLP-1 receptors, they are responsible for multiple things, and they can lead to better metabolic balance. They affect sympathetic nervous system in the ways that a person might use in GLP-1 agonists may have better blood pressure control, but also they affect our glucose, blood sugar. And so we get more insulin, and we can potentially lose weight and fight diabetes with this class of medication GLP-1 agonists, what does it do to headache immediately was my concern. We know that things like processed meat or nitro open up vessels, and it can actually trigger migraine attack. So immediate concern was, what do we do if those medications which used for weight loss and seems like getting very good reviews from cardiology and the endocrinology. What do we do as headache specialists or primary care or neurologist who see patients with chronic migraine? They need this medication, but can it increase headache? And what do we do? What do we recommend? So that was a topic of our study. And we were able to follow participants in this RB approved retrospective review study and figure out that maturity of the patients who use those GLP-1 agonist medications, they improved with adjusted doses with our headache treatments, they didn’t need to stop those medications. And we achieved better lifestyle, but the headache control altogether in majority of patients, not 100%. So that was a relief from my headache specialist point of view. But I also think that lifestyle plays huge role. And we still need to learn much more about this new medications, what long term side effects they can have, would be one of the questions for any new medication. So when Joe mentioned about exercise, and diet, and I really love our discussion, that very strict diet when you recommend to people don’t eat is not going to welcome patients with migraine. And it’s really hunger can trigger migraine attack. So I always stands when someone tell them stop eating and no no no, balance diet and no hunger are much better answers.
Joe Coe 08:21
The hunger concept is super interesting. But let me let our audience know a little bit about what we talked about at this meeting from my perspective. So I live with migraine, as everyone knows, I host the show. And as I was navigating treatments, I ended up on a medication that lowered blood pressure that helped for two things. One, I was overweight and had high blood pressure. And it also was used to treat migraine as a prevention medication. It was a beta blocker. As I started to make the shift in my health for many reasons. And migraine was a part of it, but not the whole part. I started to move more. And really, really slowly. It was just some light walking, maybe a 10th of a mile, maybe a quarter of a mile, whatever I could tolerate at the time. And I started to look at what I was eating. And I’m so glad you said about hunger. I’m glad that during this process, no one told me to be hungry. They said if you’re hungry, then you’re doing something wrong, you might need to adjust a little bit. But there are ways that you can kind of hack that by looking at the amount of protein that you’re taking and the fiber that you’re consuming. And really that idea of a balanced diet, that there aren’t bad foods that it’s about moderation. And I think as migraine patients, we often think about things in binaries because of how historically we’ve discussed triggers and there’s even the new way that we discussed triggers is more of a drops in a glass until it overflows as opposed to one trigger causing something we look at things in a dichotomy often in society and definitely with migraine. So it was important to get out of that dichotomy, and yeah I started losing weight. And then what doctors and others didn’t tell me was that you might feel worse before you feel better. And as I was adjusting to a new body, migraine brain and people, you know, we liked stability. So my body liked in a certain way that overweight, really pro inflammatory state, in a strange way, it was what it was normal, it was what I lived with. As I started to get how I define healthier, I was passing out I was feeling worse. And it was because of this medication plus the losing weight and my blood pressure was naturally being lowered. So I wasn’t necessarily monitoring my blood pressure, and I would go for a walk and I would get dizzy and I would almost pass out or go to the gym and almost pass out, get blood work, take it and I did pass out in an ambulance had to come because they couldn’t wake me up from my blood pressure being so well. So I think it’s important when we talk about lifestyle changes and migraine that there is evidence that certain things help we know that a Mediterranean balanced diet can help, we know that maintaining a healthy weight range. And we’re not even saying BMI and all of that stuff. Because that could be debated, but a healthy weight range determining what that is for you with your physicians is important. And then the types of movement that you can tolerate and how you can build on that I would love to see more research in strength training. I know that there has been research in aerobic training and migraine and how it has a positive effect strength training has been my go to form of exercise. And I know it helps me but again, n of one.
Dr. Nina Riggins 11:45
Well, it sounds like you did just unbelievable job, I do have to say that it breaks my heart to hear that one has to almost pass out. So I hope we as medical professionals can be there by everyone’s side to prevent that. And I really amazed what you said that it’s might get a little bit worse before it gets better, because it’s exactly what we noticed. And other researchers noticed about this new class of medications in the way we think about headache at this point. So when someone start GLP-1 agonist for diabetes control or weight loss, we do see spike in headache. And this is how it’s actually came to our attention that we need to do maybe little bit more, as head specialist to support our patients during this time. And it’s possibilities that we have to adjust those, as we learning about those medications, during GI symptoms, sometimes people who prescribe it for weight loss and for diabetes, they also have to adjust it. So at times, I would say okay, so medication increases slowly to watch out for GI symptoms, please keep headache diet, and I lowered us and I lowered if medication come in from some other source like endocrinology, that we might have to adjust it if it’s not tolerable. And when we go slowly, and we support with headache management, maybe we do some little bit more frequent procedures to decrease headache frequency and intensity during this time, basically working together really helpful during this time. So it’s amazing that you brought up to attention the one of the major points, it’s might get worse until it’s get better. People feel better to the point that they can exercise more people feel better to the point when they have energy to do more with their life. And maybe they will be more adherent to some things which usually not that easy.
Joe Coe 14:14
Yeah, that’s so important. Because I know that we’re told, you know, do all of these things. And it’s daunting. And then when you start to do them and they might not work or you might feel worse, it really demotivates people. So I think the more that we create the shared decision model where we’re talking very directly with each other as patients and providers about what success looks like for me, what are the risks, what are the benefits? What is the right plan for me? The better position we are for success as patients and I think that being communicated more will help manage expectations. And you’re absolutely right Dr. Riggins, people need something to push us, and we need that break, and for me, I somehow magically got it. And people will say that it’s willpower. It’s this. It’s a convergence of a lot of different things, a lot of privilege, a lot of access to resources to a nutrition coach, a trainer, a flexible work schedule, the ability to buy fresh fruits and vegetables every week from my grocery store, I don’t live in a food desert, all of these things that really removed barriers for me to be able to do that. We also need to give ourselves every opportunity. So if there’s a potential that a medication like this could both help my head and chronic weight management issue, I might want to try it. It’s something that I should provide myself that opportunity. And certainly if I was in the category where I would be eligible for that medication, it would be something that I would be discussing with my provider today, because it’s really interesting. I wanted to circle back to the concept of hunger, my understanding of how these medications work in some way they impact your hormone ghrelin, which is what makes you hungry. So makes you feel hunger. And is there theory potentially that the reduction in that feeling of hunger might be one of the pathways that reduces the migraine frequency?
Dr. Nina Riggins 16:20
I don’t think migraine frequency depends on sensation of hunger in this way, does medication do this but there are some feeling satiety, like they don’t have to eat right now they have less craving. We don’t think that’s one of mechanisms for pathophysiology for migraine. But it’s more about mismatch of energy in migraine theory. If we know that we use in some wonderful nutraceuticals really like Coenzyme Q 10 or vitamin B2 be very successfully in headache medicine with very little side effects actually, to replenish this energy our brain needs I love when our passions speak I am big fan of many passions advocacy organizations and always feel supported. We know from this voice of our passions, I saw the spoon theory about energy, we have to keep energy for our passions up and when we discuss I love what you said about a best plan for this individual if we talk about someone who actually planning to lose weight, we probably we definitely actually should disclose that some medications they contribute to weight gain example would be one of more classic all the classes like Depakote and it would be an excellent point to discuss that some of medication actually new ones can contribute to weight loss too. So CGRP blocking medication called atogepant was presented about a year ago the American Headache Society Conference as one where people reliably lost weight on atogepant for preventive headache management, migraine management. So this new medications for headache management for migraine management have this nice side effects if someone’s interested. So we always try to not to put blame or pressure and not assume that someone would like to lose weight. We have people who say I actually trying to gain more muscle and I cannot afford to lose more weight. I don’t want beyond the pyramid.
Joe Coe 18:56
I learned that too, that you have to gain weight to gain muscle and that’s okay. I think the energy discussion is super interesting, because I know both from my experience and from what dietitians and health coaches would say once you start going into a calorie deficit, you your body might feel more tired initially and there are ways that you counteract that when you’re doing this healthy a don’t go into a very large calorie deficit you do it slow and to you eat sustainably throughout the day different hold type foods and proteins and things that may sustain energy a bit longer than some of the overly processed simple sugars. So there are ways that you balance that energy loss. I’m curious about what you’re talking about with energy and brain and migraine because that to me is actually a new concept. I know that there are vitamins and minerals and supplements that are somewhat validated or have strong evidence surround their efficacy with migraine but I didn’t know it was connected to energy. Can you explain a little bit more about that connection?
Dr. Nina Riggins 20:06
Yes, it’s extremely interesting reports coming out and were presented in the American Academy of Neurology, about this mismatch of energy some basic labs finding in people and they do in like basic models for migraine we still learning we know, it’s genetic neurologic disease, but we still learning are they neuron stalking different to each other. Like there is one of the wonderful researchers at the American Headache Society. They group publishes how treatments and treatments for example the CGRP block and new medications restore how brain cells talk to each other in the brain. And then there is different groups which they will work together but they saying well there is also energy component to that and it’s actually make sense to me when I listen to someone even presenting from a patient advocacy group they saying well, when person without migraine, you’re told okay, let’s go somewhere out so person result migraine take shower getting dressed and feel energized, maybe person with migraine, by the time they took shower, got ready, got everything together to go, they might need even break just from doing this activity because they feel drained of energy. So the spoon of energy needs to be replaced again. So it’s very interesting theory and interesting allegory from persons advocacy group about The Spoon Theory, which I do hear in different variations throughout the day.
Joe Coe 21:52
Super fascinating. And for those that don’t know, the spoon theory was developed by chronic pain and chronic disease advocate to explain the limited amount of resources so she was sitting in a diner and grabbed all the spoons around said I’m given 10 spoons a day to shower, three spoons to go for a walk, four spoons, and you have to allocate those resources, really interesting cycle about energy and something I could again as an n of one personal story, as I started to get better managed with my migraine and moved on to some of the more targeted therapies, I have found that I’m able to do more, and it helps me break the cycle of migraine, I would often get migraine attacks that would last multiple days. And I can’t recall when that has happened to me in the past three years. Because the medication that I’m prescribed now I take and it allows me to function. And I will say this past weekend I woke up we had crazy torrential downpours here. And I don’t know if that caused me to have an attack. But I had an unusually intense attack in the morning. And I was like, oh man, this is rough. And I was like, All right, do what you practice and preach. Take your medication right now. Don’t wait, take it. Why are you going to wait because it was the weekend I was like, do I really need to take it I don’t have anything to do. I took it probably reduced my pain about 50%. Then I took an over the counter medication with it, which I often will do when I have an attack like this, then it was gone within two hours between both of the medications. And I was able to go for a nice long walk that I probably wouldn’t have been able to do before being on the right treatment. And I know that that walk helps me have less attacks. Me personally, I know that engaging in that outside in the break of the rain, I actually had to jog back because it started to pour. So it was nice to be able to do that. And I think that contributes at least for me to how I manage. But I wasn’t able to do that right away. And I think we have to manage expectations that we have to give ourselves a realistic timeframe to a see if medications work. And if lifestyle interventions work and vitamins and minerals work because I think we just want we’re in so much pain. We want it to work like that second, and there are medications that will work that second, the longer term stuff, we have to set reasonable expectations to try it and there have been things that you’ve listed some that I’ve tried all of them I currently take one and not the other two, because I found that the other two didn’t work for me but one I will always take because why not? It doesn’t hurt.
Dr. Nina Riggins 24:34
Yes, I just wanted to amplify that. We don’t know yet. So well biomarkers to identify what works for each individual person. So I just wanted to say that it’s so true that we have to still do trial and see which preventive medication work or which acute medication work and it’s wonderful that we have choices now.
Joe Coe 25:03
Definitely. Well, this has been an amazing and super informative discussion. I so appreciate your time. I know that you’re extremely busy seeing patients and doing research so value the time and energy that you spent with me today.
Dr. Nina Riggins 25:17
Thank you so much, Joe. It’s actually been very inspirational to me personally, and to see such excellent success stories of ways that you dedicated to all our advocacy community. And that’s where we met. And I can see that this podcast and you will work is also part of advocacy. So it’s really appreciated. It’s shows everyone we are not alone. We are community, we share ideas when some new medications showing up we start to look and what does it do for people living with migraine and headache, and we all put our information together and use it to all get better.
Joe Coe 26:04
Thank you. Thank you for listening to this episode of Talking Head Pain of the podcast that confronts head pain head on. If you have any questions or thoughts or suggestions for us, you can send us an email at [email protected]. If you enjoy this episode, please give it an honest five star rating. Write a positive review and spread the word by sharing it with your friends and family. It’ll help more people like you find us. I’m Joe Coe and I will see you next time.
Narrator 26:33
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this week’s episode of Talking Head Pain, Sarah is joined by Simar, a university student from Australia who lives with migraine and runs a migraine advocacy Instagram account called “studywithmigraine.”
Join Sarah and Simar as they dive into navigating life as a university student living with migraine, the challenges of getting a migraine diagnosis as a woman of color, and the importance of finding doctors who take migraine and mental health seriously. Hear from Simar as she shares her lived experiences of coping with the isolation of chronic migraine and navigating accommodations in college.
The Challenging and Empowering Experience of Navigating University with Migraine: A Conversation with Simar Batra
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Simar Batra 00:06
“I think one thing that I really struggled with at the beginning of my chronic illness journey was feeling like everything was lost and I had this like feeling of overwhelm and like catastrophizing, which I’m sure you understand is like such a huge part of anxiety. Feeling, everything is just gone, but you come to realize that they’re just like new ways of doing things. Find like new joys.”
Sarah Shaw 00:30
Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host, Sarah Shaw, Senior Manager of BIPOC Community Outreach at the Global Healthy Living Foundation. I have been living with chronic migraine for almost 10 years and I’m very open about navigating life with my chronic disease journey as well as my experience living with anxiety. This podcast will be a window into other patients lives as they navigate their own journeys living with chronic pain, migraine, and mental health. Today, we are joined by Simar, a migraine advocate and student living in Australia who runs an Instagram account called study with migraine. Hi Simar. Welcome to the show.
Simar Batra 01:05
Hi, Sarah. Thanks for having me.
Sarah Shaw 01:07
No problem at all. I’m so happy to have you on and to dive into this conversation. I like to start off each episode by asking our guests if you could use one word or adjective to describe your migraine attacks, what would it be?
Simar Batra 01:23
I think for me, it would be kind of ongoing, just because I’m living with refractory migraine at the moment. So I’m chronic, but they kind of intractable, so I’m stable, but they’re just never ending. That’s how I would describe it. Ongoing.
Sarah Shaw 01:38
Ongoing, ongoing is a very good word to use. I feel like when it was chronic every single day, it was like when will this pain end like when will it stop? When will I find relief? And I feel like a lot of our listeners can relate to that sense of ongoing and a lot of people that don’t live with chronic ongoing pain can’t really understand that. And I know you and I have had some conversations online about like people not understanding that it means that I’m in pain every single day, and that sometimes there’s no relief. And I appreciate you talking about that.
Simar Batra 02:14
Yeah, I think sometimes what a lot of people don’t realize as well is that even if you’re not in pain all the time or in pain every single day, you still have symptoms, some kinds of symptoms every single day. And other symptoms can be more debilitating than your pain. So something like photophobia or feeling dizzy or feeling faint or nauseous. Sometimes that can really just mean you need to lay in bed or have a nap that can really stop you from getting through the work that you need to do during the day.
Sarah Shaw 02:42
It’s very distracting. Right?
Simar Batra 02:44
Exactly.
Sarah Shaw 02:45
It’s very hard to like focus and do work and you know, live when you have like you said you mentioned these other symptoms of migraine. It’s not just the pain. It’s the photophobia. It’s the nausea. It’s very hard to do anything when you have nausea. It’s very hard to do anything when you’re dizzy. How are you walking? How are you driving? How are you focusing on writing a paper? And I know we’re gonna dive into a little bit of that I want to pick your brain and talk to you about your Instagram account. And we’ll get into that later.
Simar Batra 03:14
Yeah.
Sarah Shaw 03:15
But first I want to kind of dig into you know, migraine affects a lot of women. And that’s something that is very common, and it’s very well known in the migraine community. As we know, being a person of color, it can lead to like different obstacles in our access to health care or being believed or different struggles. And I wanted to know, for you for your experience, did you find that you dealt with any issues like getting a migraine diagnosis or anything else in kind of your migraine care being a woman of color?
Simar Batra 03:47
Well, the first thing I noticed was the our family doctor was the kind of doctor that my whole family and I and my sister my parents and I had been seeing for like 20 years, the whole time, we’d been living in Australia, and I had been living with another chronic pain disorder that wasn’t affecting my head, but just the rest of my body. And then when I started having migraine attacks, the first thing that my doctor kind of did, he laughed at me, and it wasn’t in a kind of snarky way. But it was just in a kind of, oh, it must not be that serious. He wasn’t really worried. And he literally said sometimes symptoms are psychosomatic and I was like yes, I do acknowledge that I deal with mental health issues that’s valid, but like I don’t think that would be leading to me throwing up right and me like lying in bed. Do you know what I mean? Like it just doesn’t it doesn’t seem plausible for me to have like a 72 hour attack from a mental health issue.
Sarah Shaw 04:43
Right? As I like to say the math ain’t math in the numbers aren’t connected. I hear the words that you’re saying but for me to like you said be laying there in pain for 72 hours and throwing up and the nausea I’m sorry, but anxiety, mental health, depression. That’s not what happens when we’re living with mental health issues. There are other figures at play that I wish that you had had the empathy and the wanting to dig into it more. So like, sometimes what happens is I feel like sometimes when doctors are don’t know what’s going on, they like to, especially for women, you know, as women of color, they like to play everything out on mental health issues. And a very common thing that happens for women is, oh, it’s just anxiety. Oh, it’s just depression. Oh, it’s just stress. And that’s such a common thing that, you know, happened to me in my journey and a lot of other women that I speak to, that’s the first diagnosis that they get before they get the migraine diagnosis. So I want to know, what did you do after you have that experience? Did you seek care elsewhere? Did you advocate for yourself? How did you get from the doctor that told you that your symptoms were psychosomatic to now I have a migraine diagnosis?
Simar Batra 06:00
Yeah. So I actually started seeing a different doctor, I was so mad. I was like, this doctor is being really defensive. I think I was like, I am a mystery case to him. And I think he’s just really upset that he can’t figure me out. So he’s trying to, he’s coming up with the most plausible solution in his own head because he doesn’t have the education to really figure out what’s going on. So I did some googling of my own. And I found a neurologist, and I found like a different GP. So I went to a different medical practice, I asked to be referred to a neurologist, and that family doctor was really nice. And they referred me elsewhere, when he believed me, and it was a much more progressive clinic as well. And they took me much more seriously. So I find sometimes women take me more seriously, because this was a male doctor that hadn’t taken me very seriously. He didn’t take me very seriously with my other chronic pain condition either. But once I saw the neurologist, who was a female neurologist, she was able to start me on some other medications that started helping as well.
Sarah Shaw 06:59
I think, unfortunately, it’s a very common thing that happens to women in the chronic illness space, especially when we’re dealing with invisible illnesses that people cannot see.
Simar Batra 07:11
Yeah.
Sarah Shaw 07:11
I think when you can’t see the pain, there is this barrier that blocks us from getting the care that we need. And I know for me, I specifically seek out like women doctors and for me, I specifically seek out women of color because I feel I’m the most relieved by women of color I’m I can connect with them. It’s just there’s something that is unspoken about being able to see that there’s this unspoken understanding. I think that happens and,
Simar Batra 07:42
Yeah.
Sarah Shaw 07:43
Every single woman of color that I’ve been able to see whether it’s for my migraine or my anxiety, these are my endometriosis my invisible illnesses. It’s I’m 100% believed and supported and validated and what I hope for, for the future is for other people to follow suit so that way we don’t have to bounce around from doctor to doctor to doctor could be believed,
Simar Batra 08:07
I think looking for doctors like of color, women of color, but then also finding ones who understand anxiety and mental health I feel like is really important as well because I started seeing a headache specialist and a new neurologist recently and I feel like she takes my symptoms and migraine really seriously. I feel like some neurologists tend to take other neurological conditions seriously like epilepsy, stroke, traumatic brain injury, which is so valid, I totally understand that. But then they I feel like kind of tend to neglect migraine. And I think they don’t understand how disabling it really is. So she was a good doctor, but she didn’t really believe how much it had really upended my life. So respect to her. But that’s why I started to seeing a different doctor.
Sarah Shaw 08:47
I’m glad that you advocated for yourself and got the help that you need and the treatment that you deserved. And I think a lot of people like especially for me, when I was younger, I didn’t know that I could advocate for myself and to hear you, you know, speak up and be like something’s not right. And I deserve better care, I think is amazing and I think is very inspiring for other people to listen to to know that you deserve better and you deserve to be believed. And you also talked about a mix of you know, dealing with mental health issues like anxiety and living with migraine two things that are very invisible, that not a lot of people can see and empathize with. I want to switch gears a little bit and we normally hear a lot about older people living with migraine like when a lot of people hear the word migraine. It’s often like associated with people that are older, older women, older white women navigating life and jobs. But we don’t really hear about like the stories and the experiences about young adults like living with migraine and navigating college and university and that was one of the things that really drew me to you was your account and I want to know if you don’t mind like sharing about like the obstacles that you’ve experienced as a student living with migraine while navigating college, which in of itself is like its own adventure. So would you mind talking to us about that?
Simar Batra 10:09
Yeah, of course, I think probably the biggest obstacle has been kind of communicating to my peers and kind of trying to like bridge the gap of understanding there, obviously, because people my own age, most of them don’t live with chronic illness or haven’t experienced chronic pain. Obviously, that might change as we get older things happen. I think party culture, especially in Australia, drinking culture is really big. I don’t go out or drink as much anymore, just because one, I don’t like it, too. It’s not good for my head. But yeah, just trying to communicate as much with my friends and close friends has been, I think the biggest challenge a year living with chronic migraine, I have improved, but it has been pretty difficult to navigate. I think university has been really accommodating, as I mentioned on my account I have registered with Disability Services. And they do let me sit exams alone, and they give me extensions for assignments and things like that. But yeah, I would say the feeling of like, isolation from my peers is probably the most intense thing.
Sarah Shaw 11:11
Yeah, I can only imagine how isolating that must be as my migraines didn’t really pick up until I was six months after graduating college. And I give props to seriously any student living with migraine attacks, daily migraine attacks, even episodic migraine attacks and how that is navigating. Not only college life, like exams, you know, studying, going to class, but also being a young person and like, you know, hanging out with your friends and going to social events going out to the bar, or like you said, party culture, like we have to navigate the world differently than our quote on quote, able bodied peers. And when you don’t have people that kind of understand what you’re going through, it can be very isolating, and a lot of people can maybe misunderstand, the reason for you not in or not engaging or not interacting is not because you don’t want to, of course, you want to still engage and interact with your social life the way that you always used to, but you’re unable to do to migraine. And what I like to say to people is that it’s not that I’m unreliable, it’s that my chronic illness is unreliable. And that’s what’s making life so difficult. And we have to like you mentioned, you can’t drink because of your head like that. Alcohol is a very huge trigger for a lot of migraine patients living migraine patients. And when you have a society that that’s a huge part of college life, you are kind of left out. What’s one thing that I guess you wish you could tell people that are out there, in a similar situation as you that where they’re struggling to kind of acclimate to life with a chronic illness like migraine.
Simar Batra 13:08
I guess I would say that loss it is really isolating at first there are ways to socialize with your peers, even if it’s not in the traditional sense and like a bar in like some really crazy overstimulating environment. Maybe in like an outdoor arena, you find, I guess, new ways to do things. And I guess the grief is really ongoing. But I think one thing that I really struggled with at the beginning of my chronic illness journey was feeling like everything was lost. And I had this like feeling of overwhelm. And like catastrophizing, which I’m sure you understand is like such a huge part of anxiety, feeling. Yeah, everything is just gone. But I think you’ve come to realize that they’re just like new ways of doing things. And you just like, you find a way to re navigate your college experience, you find like new joys, but yeah, that’s something that I’m always working on though like the anxious mind loves to catastrophize. So
Sarah Shaw 14:02
Anxiety is a friend that you don’t want that just knock knock, knock, Hello, are you there, it’s there. When I wake up, it’s there when I go to sleep and you add migraine on top of that. It’s like they’re the two annoying siblings that I didn’t want to engage with. But I love what you said about re navigating. I think that’s really beautiful about you know, learning kind of like when you miss a stop in life when you’re on your GPS and you miss a turn, but you’re able to reroute and reacclimate or readjust and re-engage with the world in a different way. And what really should be happening ideally is the world should be more accommodating to us. It shouldn’t always have to be us readjusting to the world. I wish the world was more accepting of people with disabilities and that employers were more acceptable and you know, I’m really lucky where I work at a job where I know if I’m having a migraine attack and I cannot work I’m able to take my medicine and lay down and wait for my medicine to sit in. And not every employer is like that. And you mentioned earlier talking about accommodations. And I know that so many people would benefit from listening to this conversation, if you don’t wouldn’t mind going into talking about how you navigated that? How you navigated getting accommodations, you know, what was the process like? And what are some tips you can share with our listeners about seeking out accommodations for the first time in university?
Simar Batra 15:28
Yeah, I think most universities, especially like in Australia, Canada, the US have pretty good disability services. They’re not perfect. But the first thing I did was like, just Google, like University of Sydney Disability Services, I hopped on a call with like the disability counselor, and she actually recommended to me what we could do for my symptoms, she was like, we can put you in a room with natural light for your exams. Because if we put you in a room with the rest of the students in the new building with the fluorescent lights, like and you lose, you have brain fog during your exam, if your performance is poor, it’s really not ideal. You can have extensions for your assignments, I was like, that would be really helpful. I already had like a prior academic plan in place for like another condition. So it was just an add on from that. And I think if I have an attack, I can apply for special consideration for like a further extension and on top of the one that I already have. So there are lots of different things that you can add on I also like I there are things that I do that my university because like I said, it’s not perfect. Sometimes they do say to me, there are things that you have to do that we can’t like accommodate. So they’re like, you have to bring your own textbooks. So we can’t give you a textbook or like print things out for you. Because if you can’t look at a screen sometimes. So I’ll be printing things out and preparing for class. So I’ll be honest, like, a lot of it is on me, like I find that a lot of the time, I have to do a lot of extra preparation. I think a lot of people living with migraine, like have to do more work. Because we just live in a very, we’re trying to adjust to a world for able bodied people. I so agree with you. I wish the world was more accommodating for us. And they try to do what they can. But most of the work I do feel like it’s on me, but it’s good to ask for what you can, but yet asking for extensions, and extra time on us on exams has really helped me as well, because they do I have like an autoimmune condition as well. So sometimes my hands can hurt when writing assessment. So that’s helped as well.
Sarah Shaw 17:24
Has it helped for you? Since you I know, you said you already had something in place. But getting a doctor’s note explaining your condition to get disability services, is that something that you had to do as well to kind of get accepted into accommodations?
Simar Batra 17:40
Yeah, so they actually had this like long form, I think it was like a bit too long. There’s lots of red tape around it, but they just had like a, I think six or seven page kind of form. And the doctor had to explain like, what kind of accommodations I need and how kind of severe my level of disability was, and how often my attacks were. And that’s how I got the accommodations. It was just from my family doctor, I didn’t have to go to the neurologist to get it. So it wasn’t too bad.
Sarah Shaw 18:04
That’s good. I’m glad that you realize, okay, this is something me going into university that I’m going to need to adjust to, and I’m going to need accommodations for. And I know for me, growing up, I had a learning disability. And I was very, I was very ashamed of it, I’m going to admit and so when I went to college, I remember my dad would tell me you need to go to the Office of Disability Services and like, explain to them but I had so much shame that I felt like I was less than and like now, you know, I’m so far into my migraine journey and like in the advocacy world, and I see that and I see you and I see you, you know, standing up for yourself and advocating for yourself. And I wish you know, I could tell younger me, “Hey, listen, like it’s going to be okay. There’s nothing wrong for you to ask for accommodations, if anything, it’s going to make your experience at college better.” And I think that’s exactly what you’re doing and what you’re doing with your Instagram account about sharing tips and tricks to help young people make their experience at college as best it can be with the hand that they’ve been dealt with living with a number of chronic and they replaced and more than just chronic migraine but with like anxiety, with depression, with arthritis with fibromyalgia, other invisible illnesses. And so I think you really took like the reins and you kind of took the narrative in your story to kind of make things work for you. And I just appreciate that you’re around and you exist in your you already are making so much change in the migraine community. Like you just made a post the other day about like tips for doing accommodations and it’s helped so many people and I saw so many comments saying I wish I had this when I was younger. And so I just know that you’re making a really positive impact on the community by leaving these tips for future you know, migraine elders and future migraine university people and so I appreciate you for paving the way for that.
Simar Batra 20:01
Yeah. And saying that also like it was really hard for me because I similarly to you, I also struggled with kind of self blame, I did feel kind of ashamed and like, I was like, maybe migraine is my fault. Maybe I did something to make it so bad took me about a year after being diagnosed, to make the study with migraine account and really start advocating for myself, but I was like, you know, I need help, because I can’t really see any students and or college students in this space. And I need to raise awareness and kind of share tips that helped me, and maybe I can help other people as well. So it takes time, I think to build up the courage. So I totally relate to your experience.
Sarah Shaw 20:43
Absolutely. And you’re right, it’s not going to happen overnight. It takes you mentioned grieving, you mentioned adjusting and taking time. And I think as people who I don’t want to say who were once able bodied, but now I have a chronic condition that you have to learn how to re engage with the world different way. I know we kind of touched on this earlier about living with migraine attacks can be very isolating, I want to turn around and see what sort of self-care tips do you do for you to make sure that you’re taking care of you.
Simar Batra 21:13
I think it doesn’t sound like self-care, because I feel like a lot of self-care tips are a lot of like spending time on your own and like bubble baths and stuff like that. But a lot of my self-care is like interacting with the migraine community, because that helps me feel less alone and just like understood, so nobody else in my immediate family lives with migraine. It’s just me, they’re very supportive. But obviously, they can’t really understand. So interacting with people on Instagram, living with migraine really helps me just reading about migraine and kind of staying up to date helps me as well. And also, I think doing my own self-care. So making sure I’m sleeping well like eight to 10 hours and eating regularly. And yeah, not pushing myself too hard. Because I think we can all do that. And that can really trigger an attack as well.
Sarah Shaw 22:01
Absolutely. I know you said it’s not self-care. But 100,000% is self care. And engaging in a community helps not only letting us know that we’re not alone, but it helps our mental health because I feel like for so long as women, you know, we’re especially like women of color, we’re told, like it’s not talked about our pain, and that it’s something that makes us look weak, or all of these other things. But in fact, like I feel like the fact that we live with this pain makes us that much stronger. And also taking care of you, like you said, like making sure you’re eating enough sleep and not pushing yourself too much not being too hard on yourself. Those are all wonderful things that we can do for ourselves, because society is already hard enough on ourselves as it is and living with anxiety is also completely exhausting. And we’re already hard on ourselves. So taking that extra time to take care of you is so important. Simar, it’s been so wonderful talking to learning more about your journey, what you’re doing for the migraine community. Is there anything else you wanted to add before we end here?
Simar Batra 23:03
No, I think so. I think you touched on everything, especially wanted to talk about just re navigating the world and overcoming that experience of isolation because I really do think it does get better, especially if you work on like not catastrophizing as much. But it’s hard.
Sarah Shaw 23:18
It is hard. It’s hard. But the more that we do it I think the easier it becomes and knowing that you’re not the only one alone out there dealing with it makes the journey a little bit easier.
Simar Batra 23:27
I agree. Yeah.
Sarah Shaw 23:29
Thank you so much for coming on the show and I hope you have a good rest of your day. Thank you for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating write a positive review and spread the word by sharing with your friends and family. It’ll help more people like you find us. I’m Sarah Shaw and I will see you next time.
Narrator 23:53
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this episode of Talking Head Pain, Sarah welcomes back guest Shruti Shivaramakrishnan, a migraine and mental health advocate, to explore the complex relationship between chronic migraine, mental health, and navigating health care systems.
Join Sarah and Shruti as they discuss the profound impact of migraine on mental health, and shed a light on the need for continued dialogue and support in the migraine community.
Surviving the Invisible: A Conversation with Shruti Shivaramakrishnan
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Shruti Shivaramakrishnan 00:06
Over-the-counter medication feels a little more powerful in India than it does over here. But here, although I’m glad that I have access to prescription medication, which is much more targeted towards migraine, newer meds, it’s really hard to navigate the system. It’s hard to find the right doctor, it’s hard to advocate for yourself.
Sarah Shaw 00:30
Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host Sarah Shaw, Senior Manager of BIPOC Community Outreach at the Global Healthy Living Foundation. I have been living with chronic migraine for almost 10 years and I’m very open about navigating life with my chronic disease journey as well as my experience living with anxiety. This podcast will be a window into other patients lives as they navigate their own journeys living with chronic pain, migraine, and mental health. Today, we’re joined by Shruti, a migraine and mental health advocate who we’ve had on the podcast before and we’re so excited to have her back on. Shruti, how are your pain levels today?
Shruti Shivaramakrishnan 01:09
Today’s a green day so I’m enjoying that.
Sarah Shaw 01:12
Awesome green and green. And can you talk a little bit about people maybe that don’t know the stoplight symptoms? What a green days like?
Shruti Shivaramakrishnan 01:20
Okay, basically the stoplight scale functions as red is when your symptoms are too high so you have to stop. Yellow orange for when your symptoms are more than baseline. You can be functional, but you might have to slow down and green as you are symptomatic but you can be completely functional for as much as possible. And for those of us with chronic pain, it’s a fairly good day.
Sarah Shaw 01:43
Great, great. No, I appreciate that explanation. I think a lot of people might relate to that. And one of the things I like to start the show off with is by asking the question, if you could use one word or adjective to describe your migraine attacks, what word would you use?
Shruti Shivaramakrishnan 02:01
I’m stumped right now, because I’ve been reframing migraines, I don’t want to look at it as debilitating or anything. But I remember reading a long time ago about full blown assault on the body. And it pretty much feels like that, it does feel like an assault, but also more like this annoying roommate who doesn’t pay rent and who doesn’t want to get out. So that’s not one word. But that’s how it started.
Sarah Shaw 02:23
I’ll take that I will take the annoying roommate that shows up, doesn’t pay rent, doesn’t give you
Shruti Shivaramakrishnan 02:30
personal space
Sarah Shaw 02:31
Doesn’t give you personal space, right? It’s always there. I know some people name their migraine attacks and call them certain names. So I think that’s a very visual representation, you know, doesn’t clean up after themselves, make you take medicine. So I appreciate that. So for those of you that have been following Talking Head Pain for a while now, we’ve had Shruti on the podcast before and in that episode, you were very vulnerable and shared with us the realities of mental health and migraine. And I just wanted to take a moment to like thank you, number one for being so open and vulnerable with us and sharing with followers, you know, to know that it’s not easy, but that they’re not alone, I know that you share with us that was the first time you had kind of opened up about the realities of mental health and migraine. And my focus for these episodes is to allow our guests to talk about the intersection of mental health and migraine. I think it’s such an important topic that often doesn’t get talked about. And so I think the more and more that we talk about it, and it happens to be Mental Health Awareness month, I think it’s very fitting, I am especially really drawn to the work that you’re doing with chronicallymeh from both your website and Instagram page, especially the message that you share with your followers about like it’s okay to not be okay, I would love it if you would just share with us why you started your page and why the focus on migraine and mental health.
Shruti Shivaramakrishnan 03:58
So first of all, thank you for giving me the platform the first time and it’s because I had that platform, I was able to confront whatever I’d been through so which is why it was so easy talking to you and Joe so it was so easy to open up and be vulnerable about it. So why I started this, I was in a really dark place. I have lived with migraine since I was a child. And for most part at least for 30 years, I thought that was normal. I thought my pain was normal, and something was wrong with me and that I was lazy that I was not able to keep up. And as the symptoms got worse and worse. I just kept pushing myself and things just snowballed. And it still didn’t stop until I hit burnout. Lucky for me or I’m lucky in a way I moved countries exactly at that point. And I was able to take a break because I had a kid that I had to take care of but it was also a very scary period of time because I did not have my support system. My husband and I were new here. He had his own stress from work and trying to keep us all afloat and all that and I had been off my medication for a year because of pregnancy. So migraine got really bad. My mental health also is something that I’ve struggled since I was a kid. Again, we can talk about that later. But this was a period of time when I was on no medication, had no support, had nobody who would understand not that I had people who understood before, but it just felt very real. I felt very isolated. And I did ask for help, because I’ve been quite intuitive about my health before. I’ve been intuitive. And you know, the voices in my head started saying, hey, maybe it’s time to quit, you know, can’t do this anymore. But I didn’t get the help. Like, I asked my doctor, I tried all the helplines, I didn’t get the help. And I ended up overdosing on meds because my brain just said, okay, this is it. I don’t want to live anymore. And when I survived that when I got through that, I realized that I was not alone, because I was introduced to a community of people who felt the same way. That was the first time I heard someone say, hey, I’m having memory issues because of migraine, hey, you know, my pain is so bad that I can’t get out of bed. Or as simple as you know, I’m not able to engage my kid, or I’m not able to do laundry. Those things felt so isolating. It felt like my own struggle, and only my struggle. And it felt like I was a failure. It was really hard for me to deal with. So when I met the community, I realized, okay, I’m not alone. And that changed everything for me, just knowing that I wasn’t alone. And then I heard someone else’s story she said, I’ve been living with this for a long time. I’ve been to every doctor, the doctor says he can’t do anything for me. And I asked him, okay, I can’t live like this, can you help me die, and he gave me the number for medical assistance in dying. And I thought a doctor shouldn’t be doing that. Like nobody should be doing that having been through it myself. I knew even at that point that there is another way, I just wish someone would show me the way. So I didn’t want another person to feel that way again, and migraine is invisible. And the mental health impact of it is very real, especially because it’s invisible. So I started the page just to share my story and let people know that they’re not alone.
Sarah Shaw 07:09
I’m so glad that you’re here with us today. And that you have created your Instagram account and your blog page, You are absolutely right, knowing that you are not the only one going through these symptoms. Because when you live with migraine, it sometimes it feels like you’re living in a bubble because like you said, it is so invisible. So you could be walking down the street and a migraine attack. And you wouldn’t know the person, you know, in the same office as you, in the same building, and in the same community, and the same mom group as you is also living with this debilitating illness. And we’re all kind of walking around alone. And that’s not how we have to be. And I remember, I relate a lot to your story, because that’s how I felt I was in my very early 20’s when I started getting my first migraine attack. And I was like, what is wrong with me? Like, why am I so sick, but so many of my other friends are still going out? They’re still doing things, they’re going to weddings, they’re going to places that I couldn’t be in anymore. And I really thought like I was the only young person in the world living with migraine because you go to the waiting rooms and you see you look around and you’re like, I’m the youngest person here. And I think what I found like you was finding that online community of support, and I think that’s what your page does for people. I think that’s what drew me to your page where I was like, oh my gosh, finally like somebody else that is talking about the very serious implications of mental health and migraine because the two are comorbidities, they go hand in hand, if you’re in pain, and it’s not seen, and it’s not validated by doctors, by your family members, by your friends, you’re going to feel very alone. And so I think these communities that we found are super important to our mental health. And so I think the posts that you create, let other people like really know, I think the illustrations just show they’re not the only ones going through something like that. And you mentioned that you were moving countries right around the time that your migraine attacks started to get worse. And I know for those of you don’t know, I know that Shruti is originally from India, and now you’re currently living in Canada. I know you talked a little bit about it on the last podcast episode. But do you mind sharing with us your experience of navigating the healthcare system in India versus navigating the healthcare system in Canada?
Shruti Shivaramakrishnan 09:31
It is so different. I mean, I’ve been asked this question multiple times. It’s been hard to answer it because it’s so different. India has got so many doctors, like we have clinics on every street. We can walk and knock on a doctor’s door and asked to be seen right now. Canada, I have to wait a year, a year and a half to see a specialist. I need a referral from a GP. I have to convince the GP that I need to see that specialist. That’s really hard for me to navigate a system that way, but when it comes to taking care of myself, I keep doing this, I don’t know which is better. In a way, India is not as educated about migraine, the doctors themselves aren’t as educated about it. So I was on prescription medication for a very long time. And the same medication which which is probably not prescribed as much today, I was not educated on medication overuse headache, medication adaptation headache, I was not told that I shouldn’t be on the prescription medication for that long. And it will cause issues with let’s say, kidney and liver and heart and have side effects or long term use. So I was not educated on all that. And that ended up adding to the disease. So migraine was actually not in control at all, all those years that I was on medication, we just kept increasing the dosage every single year until I hit a limit. And every time I went back, I said, this is not helping at all. But nobody told me that there’s something else we can try. Because there, there isn’t much available there. I mean, the CGRPs and other stuff is not available.
Sarah Shaw 09:34
They’re not there yet. No.
Shruti Shivaramakrishnan 11:05
And neurologists don’t think migraine is exciting enough to treat, there’s still a lot of stigma. So you’re sent back home with the message that, hey, you just have to live with this. And it’s common. But when it came to alternative remedies, that was easier for me to access. When I was in pain, I just go to the salon and spa and get a massage, I’d go get you know, acupressure, I would find different ways to relieve myself with a headache in the moment, even over the counter medication feels a little more powerful in India than it does over here. But here, although I’m glad that I have access to prescription medication, which is much more targeted towards migraine, newer meds, it’s really hard to navigate the system, it’s hard to find the right doctor, it’s hard to advocate for yourself, because they don’t want to hear they don’t want to listen to you for more than 15 minutes. I mean, even if your appointment is 15 minutes long, you’re out in five or four minutes even. And that just feels really unsupportive. Like it’s not enough. And on the other hand with medication, you have to prove to your insurance provider that you need it even after your doctor prescribes it like I’ve had a year long fight to get my current medication. So that’s been really stressful and taxing. With alternative health remedies, it’s been so difficult to be able to pay for it because tax in Canada is really high, regardless of how much you make half of it goes in tax. 40% of it goes in rent, you know, the rest of it goes and groceries and everything. So it’s really hard to pay for the tools that you need to treat yourself even if you don’t have your prescription medication. So yeah, I try to have the best of both worlds in a way that we are feeling lucky. So I have a therapist in India. So therapy really helps me with, you know, managing the stress and the mental health aspect of it. I do get a lot of herbs and all that from India, let’s say pain bombs and stuff. And every time I visit, at least this time that I was there, I went and got a massage almost every single day. So that would have cost me nearly like 10’s of 1000’s of dollars over here, over there, I was able to do it and make less than 500 for the entire visit. So yeah.
Sarah Shaw 13:13
Wow, you have a lot of really important things. First, you were talking about your doctor’s appointments and how they were only five to ten minutes long. And I think that that point is something that is being felt across at least I know, in the U.S. too. There’s not enough neurologists, there’s not enough doctors anymore, and our healthcare systems are starting to become very overwhelmed. And I think that it’s now trickling down to affecting patients to affecting patient care where doctors are having to rush through their appointments because there’s just not enough time to see the heavily influx of patients dealing with migraine conditions. The second thing that you mentioned, which I’m so glad is that you are seeing a therapist and you’re seeing a therapist in India and you’re adding to your migraine toolkit of you know, massages and herbal remedies and I think that a lot of people think that there’s only one way to treat migraine but I think having a toolkit like for me, my therapist is part of my migraine toolkit. My partner is part of my migraine toolkit, you know my peppermint oil as part of my migraine toolkit. To make sure that I am trying to live and navigate the world as best as I can while living with a condition where you’re in some amount of pain or nausea or brain fog or light sensitivity it affects every part of our day, even if it’s not just pain. The brain fog for me is sometimes the thing that I struggle with the most especially the postdrome of that that feeling of feeling drowsiness and like dizziness and confusion and trying to like navigate and speak coherently where I’m like, I forgot the word for this and I have apologizing saying that in meetings, but normalizing it by talking about it more, I think has allowed me to take back the power a little bit of like, I’m going to talk about this, this is who I am, and this is how I live. And I just happen to be a person that lives with anxiety and migraine. And here I am, I want to switch gears and talk about something that is really important to me. And I think something that I don’t know if you realize you’re doing but it’s so important, and It’s about your Instagram account and your comics. And I take such joy in like reading and seeing your illustrations. I’m such a nerd, I love comic books. And so anytime I see any kind of comic that’s related to someone living with a chronic illness, I get excited, because I’m like, look at someone like me in a comic living with a disability or living with a chronic illness. But what speaks to me the most is that your comics reflect you as a woman of color. And that is so important, because I don’t think there are many spaces out there that intersect both chronic pain and being a woman of color. Usually, the illustrations are all white people. And it means a lot as a black woman to see a brown woman comic where I’m like, oh, my gosh, I’m going to share this because it’s going to make people feel seen and feel heard. I want to know why you it was important for you to make sure that your illustrations reflect you as not what you typically see online.
Sarah Shaw 13:16
First of all, thank you for being kind and all the compliments, I’m not good with hearing good things about me, I don’t know how to respond to that. It’s a part of the imposter syndrome and the anxiety and everything that comes along. So two things, the reason I chose to illustrate and I’m not an illustrator, you know, it was not a part of whatever I did, I’m actually a writer, and I could really write well. And I could be sarcastic and funny and however I want it. But I realize people like me probably like me don’t have much of an attention span. So you know, this is the best way. And even for me, when I was writing, I just lose track of my thoughts. And I was not able to write this was easier. And doodling was a way for me to reclaim my childhood. It was something that I really enjoyed doing as a child. Art. And I stopped doing once migraine hit, I can literally remember the seventh grade and I completely stopped. So this is a way for me to reclaim that. And when I started illustrating, I didn’t think that actually create characters, I just wanted to share it and whatever words text, you know, in textual form, but the more I did it, the more I really wanted to put a character out there. So people have something funny, relatable, explaining something that’s morbid and depressing, you know, just a combination of that trying to lighten the situation and talk about things like how we talk about them in our heads. When I first started doing it, I did not use color, because it was just doing the doodle itself was taxing for me. So color felt like more effort. So I just left it. And someone commented saying what, hey, you’re a person of color. And this is a representation of you know, all white people. And I understood how important that was. And I took that feedback. And I saw thanks to you that being a person of color has its own issues and its own struggles, I recognized that I was being discriminated against. And I was facing challenges in the healthcare system, or even otherwise. And I saw that there was nobody who looked like me in this space talking about migraine. So I just want it to be that for others. So I wanted to tell the story as myself, that was the best way I could do it.
Sarah Shaw 18:41
I I’m such a fan of that and your story. And I’m so glad that you continue your doodling hobby after having to put it down for so long. And I think that I’m no artist, I’m no doodler. But that’s something that I always wanted. I was like, I wish I could doddle though I wish I could do that. So anytime I see comics or representation of someone in a chronic illness space that kind of reflects and looks like me, it’s so important. And so I’m so excited that you can that you took that feedback and that you made it into you and you made it into your own you made this character who’s now this representation of you know, brown people out there. And I think you know, you mentioned that you were talking about Migraine India and allowing people to kind of see themselves in your art will encourage them to say wait a minute, like this person has these conditions and is taking it seriously and going to the doctor and getting treatment maybe I should also you know it is more than quote unquote just a headache. It is invisible that can’t be seen. But there are options out there to get better treatment.
Shruti Shivaramakrishnan 19:49
I’ll be honest, one of the reasons why I didn’t want to use color apart from of course not having the energy to do it was I felt like an imposter in many ways. I’ve felt like there’s nobody looking like me out there. So maybe my story wouldn’t be taken as seriously. Or maybe I’ll get laughed at. That’s always in my mind, like, every day when I doddle, and I put in the color, I think maybe I should just leave it white. And my question that thought that’s when I ended up at this answer, you know, maybe we’ll reach more people if it was white. So it’s just the conditioning, that I’m trying to unpack all the internalized racism and everything that I have learned and I’ve grown up with just trying to unpack that. And yeah, pushing on and trying to represent people so that more people not just in India thing across the world, especially in the east, we are taught not to complain about our pain. We talked about this before, we’ve had so much intergenerational trauma. And it was hard for people to get food that was something they would struggle with, it was hard for people to survive. You know, they’ve been through all of this. So they will never complain about pain. My grandma had 16 kids, she had no opportunity to complain about pain.
Shruti Shivaramakrishnan 20:59
So when I started complaining of pain, people would say, oh, but your grandmother was so active until she was 80. And that’s when I realized that nobody was ever given the space. And it’s okay for us to complain about pain. It’s easy for us to believe that we are drama queens, and we’re just being lazy, or we’re being overly melodramatic and we just seeking attention. It’s easy to believe that because so many people are telling you, but there came a point when I realized it’s okay, every generation has it struggle to struggle wise, this is my struggle. And they’ve done so much to bring me here. So it’s okay for me to take another step forward for let’s say my daughter so that tomorrow, she can complain about, hey, you know, sun is too bright, whatever she wants to know,
Sarah Shaw 20:59
Right.
Sarah Shaw 21:44
I think you brought up a really, really important point about generational trauma and the differences that the generations before us had to go through and struggle with, and us breaking those, I don’t want to call them chains. But what our generations before us had to go through, we are breaking that cycle by saying that we don’t have to go through that because we now have the resources. There’s advocacy groups out there. Now, there’s other resources that are out there now that unfortunately, our parents and our grandparents did not have access to and what better way as we get more access to treatments and medications and advocacy, and learning how to use our voice for good. For me, I take that with I’m doing this not only for myself, but for the generations that came before me because they did not have that access. I think that’s such a beautiful thing that you’re doing to break the chains for your daughter, you know, coming up as well.
Shruti Shivaramakrishnan 22:43
Thank you. Absolutely, I think they did their best to bring us here where we don’t have to worry about food, we don’t have to worry about freedom of speech, and all those things. So we can now look at the other issues, we can now normalize mental health, we can normalize migraine at work, we can normalize migraine at school, having a chronic illness and living with it. So my hope is just to make this world more inclusive and more compassionate towards people like us, at least for my daughter’s generation, if not ours, and I’m sure it’s happening. Like I can see a lot of changes in the past two years alone, but I hope we can do more.
Sarah Shaw 23:19
Absolutely. That was so beautiful. I have one last question. We’re gonna round it up. I know that with living with chronic illness like migraine, it can be very isolating and lonely. What self care tips do you do for yourself to make sure that you are taking care of you?
Shruti Shivaramakrishnan 23:34
I used to do a lot of things before I had a daughter. And then I didn’t have time for anything. So I found little things like taking an hour for myself in the morning to just sit and enjoy the birds singing or maybe listen to the train. And then I started adding one after the other have a morning routine where I wake up, I make tea, I juice the celery because I start my day with a lot of water. And then I sit and read a book or I doodle as I’m sitting in the balcony, regardless of what weather it is. I watch TV when I can. I take a walk with my dog, self-care can be taking a nap for me like I take a nap before my daughter comes home from school. And it’s often saying no to things. So it’s often giving myself permission to say no permission to just be selfish. So that’s something that I’ve really worked on. And I’m proud of, because I can’t burn out again. And you shouldn’t have to burn out to know that you have to take care of yourself and put yourself first.
Sarah Shaw 24:33
Absolutely.
Shruti Shivaramakrishnan 24:34
Unless you take care of yourself, you can’t really take care of anybody else. You can’t be that for anybody else.
Sarah Shaw 24:39
As I say to a lot of people you can’t pour from an empty cup right, when our cup is full and when our cup is empty. It produces different kinds of results and when you’re pouring from an empty cup, the end result is not good on either end. So I’m really glad to hear you say that you are prioritizing yourself. You’re making yourself number one you’re putting up boundaries is to protect your cup, to make sure your cup stays full. So I think that that’s a beautiful message for our listeners. Well Shruti, I just want to thank you so much for coming on the show again today. It was a pleasure having you on and I learned something new and just become so inspired by your messages you share with not only our listeners, but your followers everywhere.
Shruti Shivaramakrishnan 25:20
Thank you so much for the opportunity again. It’s always a joy talking to you.
Sarah Shaw 25:25
Thank you Shruti. Thank you for listening to this episode of Talking Head Pain the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating write a positive review and spread the word by sharing with your friends and family. It’ll help more people like you find us. I’m Sarah Shaw and I will see you next time.
Narrator 25:47
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this special episode of Talking Head Pain, Joe speaks with Dr. Barbara Nye, a Neurologist, Headache Specialist, and the Program Director for the Headache Fellowship at Atrium Health Wake Forest Baptist. Recorded live at the American Headache Society’s (AHS) Annual Scientific Meeting in Austin, they discuss the latest trends and developments in headache research, including a focus on diversifying patient representation and understanding the unique experiences of different ethnicities and genders. Dr. Nye also sheds light on the AHS’s ambitious plan for the next five to 10 years, with an aim to enhance headache diagnosis and management, possibly incorporating AI and genetic-based strategies.
American Headache Society Update: A Brief Discussion with Dr. Kristyn Pocock
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:10
Hello, and welcome to Talking Head Pain, a podcast that confronts head pain head on. I’m here live at the American Headache Society’s Scientific Meeting. I’m sitting with Dr. Pocock, who’s going to talk to you about some of the research she’s presenting, as well as what it means to be a headache and migraine fellow. How are you doing today, Dr. Pocock?
Dr. Kristyn Pocock 00:30
I’m doing well. How are you, Joe?
Joe Coe 00:31
I’m great. So it’s so nice to meet you.
Dr. Kristyn Pocock 00:33
Nice to meet you, too.
Joe Coe 00:34
Can you share with our audience the research that you’re presenting?
Dr. Kristyn Pocock 00:37
Yes, so as a headache fellow, meaning a physician in training for a specific subspecialty like headache, I submitted a summary of my research and exploring the impact of breast size on headache. This is a topic that’s been explored thus far, primarily in the plastic surgery world. And there’s really been no crossover crosstalk with the fields of neurology, pain medicine, or headache medicine. So I’m excited to bring some of that data to the conference and start increasing awareness of the studies that show that there actually is a correlation with breast size that women with larger breast size can experience headache and can experience improvement after breast reduction. As a headache specialist though we have no idea what headaches actually get better for breast reduction, because the surgeons are not asking those headache oriented questions. So it is my goal in the future to help you answer that question.
Joe Coe 01:30
And what drove you to attempt to answer this question?
Dr. Kristyn Pocock 01:34
That’s a good question. I experienced a worsening of my own migraines following the birth of my son when I chose to breastfeed, and I started exploring that relationship. And there were a lot of just blogs and blogs and kind of non-formal data out there that suggested maybe had something to do with breast size. There’s a lot of evidence already out there scientific evidence that links worsening with headaches during certain parts of pregnancy and breastfeeding with hormone fluctuations. But breast size itself had really never been talked about, given the fact that a lot of women’s breast size actually increases dramatically during their seasons of breastfeeding. So I started asking that question myself during my own breastfeeding journey. And it’s led to forming a lot of really fantastic collaborative relationships I’ve had a lot of women approached me saying, oh, my gosh, I’ve thought about this too, you know, when I went from breast size X to breast size Y or when I was breastfeeding myself, or when I lost a bunch of weight or gained a bunch of weight. So there’s a lot of enthusiasm for this topic.
Joe Coe 02:31
That’s so important for our audience to hear that people that are doing research are people and you happen to be impacted by the research that you’re doing and it’s personal to you. I think we often don’t see that on the other side of dissemination of research or hearing about research as patients. So I think that’s a really nice thing to highlight here that you are prompted by your lived experience to tackle this research question.
Dr. Kristyn Pocock 02:57
Absolutely. I was just speaking with another investigator earlier today who’s exploring how fertility treatments affect migraine headache and tension type headache and that was driven by her own personal experience. So even negative experiences or challenging experiences can bring an investigator to asking a really important question.
Joe Coe 03:16
Is there anything in your research that indicates headache frequency or prevalence in the transgender community?
Dr. Kristyn Pocock 03:23
That’s a good question as well, especially as we’re talking about hormone exogenous hormone use. I know that that is a priority for the AHS research community. They actually just spoke about that yesterday. But I myself have not explored that body of literature. I know that body of literature exists outside of the headache world, but I know as of 2023, it was highlighted yesterday as a priority for kind of catalyzing research in that growing field of medicine.
Joe Coe 03:50
And in the poster hall, have there been any other posters that have stuck out at you that you think our audience should know or at least be aware of?
Dr. Kristyn Pocock 03:59
The one poster that really drew my eye was a poster that came from University of Connecticut Health. It was a lead author in the obstetrics and gynecology department there and her team actually explored or tried to answer the question, is Botox safe during pregnancy, and they actually used five human placentas and infused the placenta as after birth with Botox up to 200 units of Botox which is an important number because we actually tend not to go above 200 for treating migraine and they found that none of the Botox cross the placenta so that I thought was a pivotal, small, albeit small study a pivotal study to really help answer the question, can we use Botox safely in pregnant and lactating pregnant patients, because we don’t actually have too many therapies available for the pregnant woman or pregnant patient with headaches? So I thought that was an exciting starting point that’ll begin to answer that question.
Joe Coe 04:50
Super interesting. And my last question for you I had Dr. Nye on earlier today. You’re her fellow. What does a fellow do and what does that mean?
Dr. Kristyn Pocock 04:59
What being a fellow means is that you are a trainee kind of toward the terminal end of your training experience. So you’ve completed medical school, you’ve completed your basic residency training, and you’ve decided to pursue additional specialty training. I myself actually left practice as a kind of an attending or faculty member doing a different field, practicing a different field of medicine, neuromuscular, because I really fell in love with headache and wanted to gain that really kind of niche experience of how do I treat not just headache, but the really kind of esoteric headache conditions, the rare headache conditions? How do I treat the patient that’s maybe tried 40 to 50 meds, and is not responding to anything? What types of questions should I be asking? What types of procedures or diagnostic interventions do I need to perform? And fellowship not only kind of challenges you to learn how to think in the box and outside of the box, but it also gives you the opportunity to, to establish fantastic mentoring relationships, it allows you to attend events like this and network with people outside of your institution. And it gave me the opportunity to explore the world of clinical research, which I fell in love with which I hadn’t, I had no idea that I love clinical research before returning back to fellowship.
Joe Coe 06:13
That’s so amazing and important for people to hear that there are doctors that want to help some of the hardest to treat patients because I know that the people that are listening that have had tried 30 and 40 medications are at the end, and they feel like there’s nothing left. So hearing that there are people coming into the field to help us that are in that space can be life changing. So really appreciate all of your energy and anything that you want to share that we didn’t cover.
Dr. Kristyn Pocock 06:44
Well, I would just add to that end that if there are patients that are listening that feel like they have exhausted options, but have not yet consulted with a fellowship trained neurologist or visited a tertiary academic center, that that’s something that they should absolutely do, because it’s really it tends to be the UCNS headache fellowship trained folks who are more comfortable with those complex situations. They sit down as a group talk about difficult cases. So I would just explore if you’re listening I would implore your listening audience to consider meeting with a fellowship trained tertiary neurologist if they’ve not yet done that and have are feeling hopeless.
Joe Coe 07:22
Amazing. Well, thank you so much for your time really fascinating research that you’re doing, and I look forward to following your career and trajectory.
Dr. Kristyn Pocock 07:30
Thank you, Joe. Thanks for having me.
Joe Coe 07:32
Thank you for listening to this episode of Talking Head Pain. The podcast that confronts head pain head on. This podcast was made possible with support from AbbVie Canada. If you have any questions, thoughts, or suggestions for us, you can send us an email at [email protected]. If you enjoyed this episode, please give it an honest five star rating. Write a positive review and spread the word by sharing it with your friends and family. It’ll help more people like you find us. I’m Joe Coe and I will see you next time.
Narrator 08:04
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this special episode of Talking Head Pain, Joe speaks with Dr. Barbara Nye, a Neurologist, Headache Specialist, and the Program Director for the Headache Fellowship at Atrium Health Wake Forest Baptist. Recorded live at the American Headache Society’s (AHS) Annual Scientific Meeting in Austin, they discuss the latest trends and developments in headache research, including a focus on diversifying patient representation and understanding the unique experiences of different ethnicities and genders. Dr. Nye also sheds light on the AHS’s ambitious plan for the next five to 10 years, with an aim to enhance headache diagnosis and management, possibly incorporating AI and genetic-based strategies.
American Headache Society Update: A Brief Discussion with Dr. Barbara Nye
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:10
Hello, and welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m Joe, your host, and I’m here in Austin at the American Headache Society. I’m sitting with Dr. Nye who’s going to share some of the exciting things that she’s learning about at the conference today. How are you doing, Dr. Nye?
Dr. Barbara Nye 00:28
I’m doing fabulous, thank you. I work over at Wake Forest Atrium Health Wake Forest to be specific. I am the Program Director for the headache fellowship and you’ll get a snippet of what that means from my fellow shortly. But as far as the headache conference, this is a really exciting time to be able to collaborate with my colleagues come together, get our research aligned, figure out what our goals are. And I think the exciting things that are happening right now are that the American Headache Society is actually assessing where we are in the field of research and where we going in the next five and ten years. And that’s been a major focus of this particular meeting, it is our scientific meeting. And so focusing on the science that is underneath the underpinning of migraine headache disorder, as well as all the other headache disorders. I’m excited this morning, there’s going to be a plenary session looking at kind of lesser researched headache disorders cogenic headache, new daily persistent headache, which I know you’ve spoken about in the past. I think the other really neat thing is figuring out what our research initiatives are. So looking at the diagnosis, the animal model, the basic science model of the research that’s going on in the space of headache, and migraine, specifically.
Joe Coe 01:38
Dr. Nye, can I ask you a follow-up question? So you were talking about the American Headache Society reviewing a five to ten year strategy? What does that mean to patients?
Dr. Barbara Nye 01:47
Hmm, that’s a really great question. I think what it means to patients is that we’re going to start having goals that are tangible. And so the hope is that we identify our patient population better. And I think that’s one of the major things that I would like to see is some diversity in our research identifying not just the white, middle-aged woman and how she usually she responds to headache management, but rather getting a diversity of ethnicities and genders involved in the headache research and understanding how headache may manifest differently, are there differences in the way we treat folks with these headache disorders? One of the goals was actually to evaluate how we optimize headache diagnosis and management. And within that categorization, they’re looking at developing strategies for how do we identify if a patient responds to one therapy versus another. And some of this may be AI-based, some of this may be genetic-based. So this is the opportunity to do that research and figure out how do we identify our patients that are going to respond to things rather than having a we have to go through step one, step two, step three, and see how medications work?
Joe Coe 03:02
That’s a really interesting piece of information, particularly the AI so that there was a session about AI. Were you able to attend that?
Dr. Barbara Nye 03:10
Unfortunately, I have not. It is on my list to listen to, hopefully very soon.
Joe Coe 03:15
Very good. Is there anything else that you wanted to share with our audience while we’re together?
Dr. Barbara Nye 03:19
I think raising awareness that headache has a subspecialty fellowship program and how to get people interested that we train folks that have come from internal medicine backgrounds, as well as family medicine, neurology and psychiatry, that folks should be starting to get interested in medical school maybe even before that encouraging folks, especially those younger in the audience that are thinking about medical education, interested in the space as being something that’s worth taking the effort, and really developing new questions and answering them, much like my fellow has coming up with new questions and hopefully coming up with answers over the next coming years.
Joe Coe 03:58
Awesome. Well, thank you so much for spending this time with us. I know that our audience will appreciate the insights that you shared.
Dr. Barbara Nye 04:05
Thank you.
Joe Coe 04:06
Thank you for listening to this episode of Talking Head Pain. The podcast that confronts head pain head on. This podcast was made possible with support from AbbVie Canada. If you have any questions, thoughts, or suggestions for us, you can send us an email at [email protected]. If you enjoyed this episode, please give it an honest five star rating. Write a positive review and spread the word by sharing it with your friends and family. It’ll help more people like you find us. I’m Joe Coe and I will see you next time.
Narrator 04:37
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this special episode of Talking Head Pain, Joe speaks with Dr. Hida Nierenburg at the American Headache Society’s meeting in Austin.
Dr. Nierenburg sheds light on the transformative potential of recent therapies in managing head pain and migraine, along with her anticipation for future breakthroughs in treatment. She also provides insight into her role as a mentor for her first fellow
American Headache Society Update: A Brief Discussion with Neurologist Dr. Hida Nierenburg
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:06
Hello, and welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m here live at the American Headache Society sitting down with Dr. Nierenburg she’s going to share with you what she’s excited about learning at the American Headache Society’s meeting here in Austin.
Dr. Hida Nierenburg 00:26
Hello, Joe, thank you for having me. So I’m very excited about seeing how the newer therapies that we have in the past few years are changing people’s lives and potential side effects and where we can go next. Also, I’m excited about potential new treatments that will come down the pipeline or potential new treatment targets, which is this is a fun meeting where we find out all the research that’s going on.
Joe Coe 00:52
And you currently are a practicing provider, how do you see this research impact the way that you deliver care with your patients?
Dr. Hida Nierenburg 00:59
So I’ve seen live on from the era where we didn’t have CRPS. Now we have nine new different treatments in the past few years. So I see how that changed my patient’s life like I always joke, yes, it makes my job a lot easier, because I have better options that are safer and the patients that didn’t respond to their treatments nowadays respond. So I think I will be excited about seeing the shift, potentially newer treatments for those patients that the treatments we have they don’t always work.
Joe Coe 01:25
And do you find that you talk to your patients about what you learn here?
Dr. Hida Nierenburg 01:29
Oh, all the time. So before coming here, I tell my patients I’m going to the scientific meeting and it’s exciting. And I’m gonna learn about new treatments. So I always talk about my patients about what’s coming. So yes, all the time.
Joe Coe 01:41
And what do you think the most important thing for a patient to know about these scientific meetings?
Dr. Hida Nierenburg 01:47
That there is hope that there’s a lot of people working how to better at the life of people that are suffering with migraines, and nobody should suffer in silence. Which is something I tell all my patients.
Joe Coe 01:59
Yeah, I think it’s so important for patients to understand there’s hundreds if not over 1,000 doctors and health care providers here in Austin, all talking about headache and migraine treatment, there are so many people that care about us that are advocating and that are pushing the boundaries of science to better understand our disease. So it’s really exciting to hear that. So you currently are working with a fellow how is that impacting your practice? And what do you do with a headache and migraine fellow?
Dr. Hida Nierenburg 02:28
So actually, she’s gonna come in July, it’s my first fellow but no, I’m very committed to making sure that she knows all the new treatments on making sure they’re up to date with whatever the newer treatments and how to better improve patients’ quality of life.
Joe Coe 02:42
For our audience, what is a fellow?
Dr. Hida Nierenburg 02:44
So a fellow, it’s what you do after residency training, so it’s a specialty training. So I always say to my patients that they say oh, there used to be the doctor that did a little bit of everything. And now we have a doctor that specializes and learns a few conditions very, very well. So it’s mostly for headaches and all kinds of headaches that are not just migraine, as some people are aware so she will be focused or he focusing learning how to be an expert in treating these conditions.
Joe Coe 03:11
Any last words for our audience?
Dr. Hida Nierenburg 03:12
I like to always tell everybody you’re not alone. And there’s hope and I’ve seen that happen from when I graduated fellowship to now I am excited about what’s there to come.
Joe Coe 03:22
Amazing. Thank you. Thank you for listening to this episode of Talking Head Pain. The podcast that confronts head pain head on. This podcast was made possible with support from AbbVie Canada. If you have any questions, thoughts, or suggestions for us, you can send us an email at [email protected]. If you enjoy this episode, please give it an honest five star rating. Write a positive review and spread the word by sharing it with your friends and family. It’ll help more people like you find us. I’m Joe Coe and I will see you next time.
Narrator 03:55
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
In today’s episode of Talking Head Pain, Joe delves into the personal journey of Marta Mrozek, a psychotherapy student who lives with migraine. Marta opens up about chronic migraine and her initial reluctance to accept her diagnosis. She also discusses the powerful realization about needing therapy and finding the right support system, which helped her navigate her condition.
Join us, as we explore Marta’s unique insights into reimagining her life in the face of chronic migraine and her journey toward advocacy.
Reimagining Life with Migraine: A Conversation with Marta Mrozek
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Marta Mrozek 00:10
“The main thing that I would change, it would be to really listen to my body and not to feel like I need to perform. Like I need to be somebody for everyone else. And as you said, you know, putting the smile on our faces, it’s very challenging, and at the same time, that’s why this disease is so invisible, right.”
Joe Coe 00:34
Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host, Joe Coe, Director of Therapeutic Area Growth and Integration with the Global Healthy Living Foundation, as well as Co-President of GHLF Canada. I’ve been a migraine patient for over 20 years. So I know firsthand how debilitating this disease can be. I’m here today with an amazing advocate Marta Mrozek. She’s a psychotherapy student who lives with migraine. She also is a volunteer advocate with Migraine Canada. And in our pre-interview, I learned that she loves animals and has a dog that takes up a lot of her camera roll. I can totally relate because my two cats do the same. How are you doing today, Marta?
Marta Mrozek 01:19
I’m doing okay. Thank you for having me, Joe.
Joe Coe 01:22
My absolute pleasure. So a question I like to ask folks on Talking Head Pain is to explain in a couple of sentences, what their worst migraine attack was like? What they felt? What went through your head? Can you walk us through that?
Marta Mrozek 01:36
Well, it is an interesting question, because I’ve been living with this condition since I was five years old. So I had a lot of bad migraine attacks. But when I think about my worst, for some reason, while I kind of know why, but my thoughts gravitate toward my last week at work. And back then I worked in healthcare, I used to be an event specialist. And we had a three-day event conference. And I had this excruciating migraine pain for all these three days, 72 hours. And with all the symptoms, you know, the sound sensitivity, light sensitivity, nausea, obviously, my speech was affected. But at the same time, I had to be responsible for the registration. I was the first contact for speakers, and I had to have a smile on my face. So it was really, really tough. And to be honest, I still don’t know how I managed. But what I remember the most actually was when I said in the cab on my way home, I remember the feeling. And that was the first time I was 33 years old then, and that was the first time I felt defeated. I felt lost and so petrified. I felt like this is the end. And I just didn’t know what will happen next. And when I got home, I still didn’t know what to do. It wasn’t you know that I had an action plan in my mind. It was still my family. And with their support, I actually made the decision to take a sick leave, which because I was kind of in the denial about my whole condition that was already chronic. I thought that it will take me probably oh, you know, two weeks and I will go back to work. But yeah, I found myself on disability for over 10 years. So I think it was my worst because it changed my life. It really truly changed my life.
Joe Coe 03:25
That’s a really powerful and vulnerable story that you’re sharing. I appreciate your honesty. It’s a good reminder for folks that are listening that people might have a smile on their face and going through a lot and could be in a lot of pain, could be going through a lot of emotional stuff. So it’s really important to remember that we’re all dealing with different things and sometimes you can see them sometimes you can’t and Marta’s case, she was smiling as she was in excruciating pain at this life changing moment. So a really, really important reminder for our audience, thinking back, Marta, what you know now and where you are today, what would you want your younger self to know maybe that Marta in her early 30’s?
Marta Mrozek 04:10
I think about it a lot because, as you know, I’m psychotherapy student. So that’s a lot of going back and analyzing, but really the main thing that I would change, it would be to really listen to my body and not to feel like I need to perform. Like I need to be somebody for everyone else. And probably I would start therapy a lot sooner than I did. Because it is very tough. It is very tough. And as you said, you know, putting the smile on our faces. It’s very challenging, and at the same time, that’s why this disease is so invisible, right? But then we want to go ahead, we want to have normal lives, but we need to have a support. And I think I would probably seek this support a lot sooner. But yes, as I said, I was in denial, I just didn’t want to face it, I wanted to be as everyone else. And to be held to a certain degree, I was controlling my, you know, I felt that I control my migraine because I was taking the medication helped to a certain degree for some time until it stopped.
Joe Coe 05:18
There are two questions from that beautiful statement that I want to dig in a little deeper, can you the first one that I have for you is, can you explain a little bit more what you mean by you would learn to not perform? What is performing migraine look like to you?
Marta Mrozek 05:33
To me, it was and sometimes it still is, to be honest, it’s like putting a mask, because I find that people don’t really want you to see being sick. You know, and as I said before, like you go to work or you are with a family, and you want to be with a family for whatever event it is or even like to get together. And you put this mask on, and pretend in a way if you can, if you can, because obviously when the pain takes over, it’s not possible anymore to do it. But I think it’s very difficult at least it was for me, admitted that I am sick, because in my head was that I’m less than for some reason, like being sick meant that I’m not good enough. And that’s why admitting that I have this pain, it meant that I will not be accepted. So um, so I pretended.
Joe Coe 06:23
I understand that sometimes my friends now like to, I guess play a game. It’s not a game, but it is where if I post the picture, they sometimes comment oh, you look like you’re having a migraine attack. I could be out in the world doing anything. And the last time maybe a month ago that someone commented I was like, no, I’m just tired. So it swings in the other direction. Sometimes when you raise a lot of awareness. You often talked about the importance that you found of being in therapy and getting into therapy sooner. What was the process like for you? Did you have to see a lot of different therapists to find one that you liked? How did you find someone that gelled with you and also understood migraine?
Marta Mrozek 07:06
With me? Actually, yes, I went through a process of finding the right therapist, it was that I was thinking of working for right therapist, but back in the day, when I was on sick leave from work, my mind was set. You know, like I was admitting that I have a migraine and I need help. But I was more with a fault was that I need to go back to work. So fix me fix me now. And you know, and I wasn’t patient, it was not about fixing me it was about fixing my migraine. It was like two different things. I was not connected to my disease at all. I didn’t want to be connected to it, because it was taking away my life. And I just wanted to get rid of it. So that’s why it took me a long time to actually meet someone, a therapist that while I’m with her now that she started asking me different questions. And she started making me want to go a bit more deeper and tackle a bit more, you know, issues inside that actually answers some questions for me. It’s not even about why I have a migraine because you know, it’s genetic. Many members in my family, they do suffer from migraines, but it’s more about my relationship with migraine.
Joe Coe 08:13
That’s super helpful. And is that what drew you to study psychotherapy?
Marta Mrozek 08:18
Yes, for sure. That’s one part. But really, for the longest time, as I said, like with work I, you know, marketing, public relations, communication, it was something that I was very passionate about. So during all these years, when I was on disability, in my mind, I was going back to my job, you know, like I was going back to communication, I was going back to marketing to event planning. So when I started to feel a bit better, when I found the right combination of medications that actually started to help me get back on my feet, I tried marketing again, but I didn’t feel it. I just didn’t feel it anymore. In the back of my mind, I started thinking that maybe you know, I already started, you know, doing a bit more in a sense, like helping people, not professionally, obviously, but like through my specialists, you know, other patients if they had questions about migraine, and I sounded very healing for me as well, but also very rewarding. And at the same time, I saw the need that there are still so many of us who just are so lost in the whole system, that it’s not very set up to help us to the degree that it should. So I started thinking about counseling, maybe you know, thinking, oh, maybe if I could work in a headache clinic as a patient, something along the line. So psychotherapy just landed on my lap by pure accident as it usually does in life, you know, those type of things through friend who really made me think about it more seriously and she pushed me to apply and here I am in my second year but it’s a five year program, so I still have a long way to go.
Joe Coe 09:51
One step at a time. And your story is similar to a lot of folks that I speak with that have chronic disease and go through a process of mourning and rediscovery. And I think that that’s something we all need to understand that with these life changing diseases or diseases that impact us on a daily basis, we might need to reimagine, and reconstruct what a quote on quote normal life is for us. And that’s the beauty of being alive is that we have those choices and ability, once we realize that we have those choices, and you went through a long process, this was not something you did overnight. And folks need to hear that when they see success stories, that this is about a lot of trial and error. This is about a lot of soul searching says about going on a lot of different medications, working on a lot of different doctors and figuring it out. But you know, a different life and world is potentially possible. And we don’t have to be confined by some of the societal burdens that were given around what productivity is, what success looks like, what a fulfilling life looks like. And we can find meaning and all different ways. So really appreciate that story and process that you went through and sharing with the folks that listen, the last question, I want to ask you, I know that you’re involved with Migraine Canada, how did you get involved with an advocacy organization? And why is that important to you?
Marta Mrozek 11:15
You know, what I mentioned, when I started having those ideas about counseling, actually, my neurologist, he mentioned the organization, and he gave me this idea that maybe it’s something that I should consider when I was still kind of pushing back thinking that there is no way that you know, at that point in my life that I can be used for anything, you know, that my brain is good enough, again, good enough is like really something that it’s you know, it follows me that I like the idea, obviously, and I liked what it stands for. And because whenever I would look for the information, as a Canadian, there’s a lot of information coming from the states, but we don’t have a lot of that here in Canada. So I saw that it’s missing. So I saw the need for it. And I wanted to be part of it. I just didn’t know exactly how and what I can, you know, help with? I was still thinking maybe communication background, maybe marketing, I still don’t know, you know, I’m still like helping, but not really knowing what my real faction is. But I guess as a patient advocate, it’s more about being there and telling my story and from my point of view, yeah.
Joe Coe 12:25
it is. They’re a great organization. And Marta, you get to define your function.
Marta Mrozek 12:30
Yeah, I know. I know.
Joe Coe 12:31
So really amazing. So appreciate your time. Is there anything that I didn’t ask that you wish I would have? Or that you want to share with the audience?
Marta Mrozek 12:40
No, no, I thank you for making so comfortable. First of all, because it is the topic that I learned to talk about it. But to go deeper, you know, about more personal part of this experience. It’s tough, but it’s something that I know, I recognize that it’s very important to share with others because I know myself when you hear, when you read, when you find similar stories, there’s this like, aha moment, it’s like, wow, we know if she they can do it, or they were in the same situation. They’re like me, and then when you see yourself and others is just like it’s so empowering, you know.
Joe Coe 13:16
And that’s why we do this and I really am grateful that you found it to be a good experience and that you were comforted. And I know people listening will find comfort in your words and in the story that you share because we aren’t alone. There are so many of us are putting a smile on our face and it’s okay if we have to do that. It’s also okay, we choose not to. Really thank you for everything and for spending these moments with us.
Marta Mrozek 13:42
Thank you, Joe.
Joe Coe 13:44
Thank you for listening to this episode of Talking Head Pain. The podcast that confronts head pain head on. This podcast was made possible with support from AbbVie Canada. If you have any questions, thoughts or suggestions for us, you can send us an email at [email protected]. If you enjoyed this episode, please give it an honest five star rating. Write a positive review and spread the word by sharing it with your friends and family. It’ll help more people like you find us. I’m Joe Coe and I will see you next time.
Narrator 14:15
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
On this episode of Talking Head Pain, Joe chats with Rabia Kiani, a lifelong migraine patient. Rabia reflects on how her migraine attacks and ability to manage them have been significantly influenced by her access to various treatments across different periods of her life and geographic locations. Rabia also discusses her experiences with medication overuse, or ‘rebound’ headaches, due to frequent use of over-the-counter medication to keep her migraine at bay.
Navigating Migraine Across Continents: A Conversation with Rabia Kiani
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Rabia Kiani 00:06
“I think I carried the embarrassment for a really long time because I didn’t want to be seen as someone who was sick. I wanted to compete with everybody else. I didn’t want to have an excuse for not being able to keep up with everyone else. And so I tried to hide it from everyone.”
Joe Coe 00:29
Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host, Joe Coe, Director of Therapeutic Area Growth and Integration of the Global Healthy Living Foundation, as well as Co-President of GHLF Canada. I’ve been a migraine patient for over 20 years, so I know firsthand how debilitating this disease can be. Today I’m here with Rabia Kiani, who is a person whose lived migraine for her entire life. Today we’re going to learn about how her personal and professional life has been impacted by migraine and the unique ebbs and flows that she’s experienced living with migraine disease. How’re you doing today, Rabia?
Rabia Kiani 01:10
I’m great. Thanks for having me, Joe. It’s nice to be here.
Joe Coe 01:14
My pleasure. So I want to jump right into a question that I asked a lot of folks, before we begin, can you explain to our audience in a couple of sentences, what your worst migraine attack felt like? What went through your head? What were you thinking?
Rabia Kiani 01:29
Oh, the worst migraine attack I had was probably one of my earlier migraines when I was much younger, where I probably didn’t know what was happening. And I thought I was gonna die. It was this feeling that my head was gonna explode. I do remember distinctly my brother being called into the room. And I just remember using my arms to hold my head really tightly together. And my brother who’s just only a couple years older than me having to come in to keep me calm. But I remember thinking my brain was going to swell up so big and just explode. I was just that much pressure and pain.
Joe Coe 02:05
Yeah, that’s the really scary thing, especially as a child, how old were you when you started to get migraines and then diagnosed?
Rabia Kiani 02:12
I was 10 or 11 when I first started having headaches, and we went to my family doctor who wasn’t terribly surprised that I was I was having headaches. I’m one of five kids and my mom had migraines. So I don’t think he was surprised that one of us was genetically going to be inclined to have migraines or headaches. It was something that was tracked, you know, is this a headache is it a one off thing? And so for a few months, it was kind of followed. And he did try to determine whether or not it was too young, kinda to be hormonal. And so it was just like, what is bringing these on?
Joe Coe 02:46
And how did it feel as a young person in school living with head pain and the related symptoms of migraine?
Rabia Kiani 02:53
To be honest, I was really embarrassed. I think I carried the embarrassment for a really long time, because I didn’t want to be seen as someone who was sick, because from the outside, I was pretty fine. But I didn’t want to be seen as somebody who was less than. I wanted to compete with everybody else. I didn’t want to have an excuse for not being able to keep up with everyone else. And so I tried to hide it from everyone. Actually, I remember that that was kind of my initial feeling.
Joe Coe 03:25
And when did you start to change that feeling in your life?
Rabia Kiani 03:29
Honestly, I don’t know if its ever gone away. You know, like, there’ll still be moments actually when we have like a family event, you know, coming up, and I won’t say that I have a migraine. I’ll just self medicate and I get embarrassed having to be that person. That’s not feeling well, that has the migraine even though I think it’s because it’s so you know, it happens still so frequently. I don’t like the reaction that I get from someone that’s like you have a migraine again? Even though I don’t think it comes from a bad place. I still have a stigma even though I know people loved me, but I have let go of a lot of friends who I haven’t been able to see because I’ve cancelled because I have a migraine. I used to make a lot of sacrifices, where I would show up to dinners and nights out even though I wasn’t feeling well medicated. And I just wasn’t valued for the sacrifice that I made. And I’ve let go of those people wholeheartedly and I do not regret that at all.
Joe Coe 04:28
I think it’s so important. And thank you for being honest about this process for people to hear that a successful woman and we’ll learn a little bit more about your career and how you’re looking to sit for the New York Bar, a successful woman who’s traveled the world who has had all these opportunities and is strong and empowered. And still because of stigma and the way society treats people with invisible diseases feels that you haven’t quite fully reconciled the fact that you can’t be totally honest without feeling something negative inside of you. And I think it’s important to be gentle with ourselves and for our audience to remember that it’s okay to not feel like you’re doing everything right or that you’re perfect because it’s a process living with a chronic disease. So I really appreciate that openness, wanted to jump in a little bit into how your migraine attacks changed and progressed based on access. In talking about you before we did the interview, you talked about in different points in your life where you had different levels of access to treatments and how the access to treatments there is a direct relationship to better outcomes for you and quality of life. Can you talk a little bit about that?
Rabia Kiani 05:42
Yeah, absolutely. So I’ll just quickly summarize. So when I was younger, what was available, I guess, back in the 80’s, and maybe it was because of my age, what was available was kind of a cocktail of medication, and it was over-the-counter medication. And that was while I was here in Toronto. When I was a little bit older, what was more available were preventatives, and that was while I was living in Australia, and there was more of a, I think, an understanding and that was in the early 2000’s. And by then I was kind of in my early to mid 20’s. And I felt that was a really great understanding of migraine, then, because I didn’t have to jump through so many hoops. I didn’t have to see a neurologist, and it was at an on-campus doctor at my law school. And, you know, we went through a few tests, and he had my history, and I was able to have a preventative medication. And it was it dramatically changed my health. And the way that I approached life. I also I was living in a part of Australia where the weather was quite consistent. And I was really sensitive to weather. And so the barometric pressure was quite consistent. I had very few migraines, but when the weather did shift, the preventative really did kick in. And I was also sensitive to hormonal migraines. And so I kind of had a really great quality of life for the most part, as I shifted into my late 20’s, my early 30’s, I had a really high stress career, but by then I was kind of back in Toronto, and my access to health care shifted again in a different way, I didn’t have access to medication and different areas of maybe medication that I would have liked to have. And so I kind of had to rely on a mishmash of medication. And I kind of had to do a little bit more on my own. Like I really had to get a bit more physical, do a little bit more yoga, things like this, to try and help myself actually, I really had to wait for doctor’s appointments quite a bit, actually. It was like a three month to six month waiting list to get access to specialists. And my career was really busy. I was really high stress. I then moved to Abu Dhabi. And again, really consistent weather there barometric pressure wasn’t so much of an issue and I had access to private health care. And all of a sudden my migraines and my access to medicine improved dramatically in a different sense as well. And I was back on preventatives that were available under their drug regulations. And my health improved dramatically. And I also started to partner it with a lot of alternative therapies because they were available in a really progressive way there. And so I was able to do things that I didn’t think were necessarily possible. I had my first son there, when we decided to consider expanding our family, I did do a round of IVF things that migraineurs I think don’t necessarily consider doing because it may trigger a lot more risk to their migraine health. And so I did have a really great health experience there because my access to a different level of drugs and alternative therapies is just available.
Joe Coe 08:39
How does it feel knowing that you have had these treatments that have worked for you, and you’ve been really successful on them, and knowing that you can’t access them in Canada?
Rabia Kiani 08:53
It’s hard. So now that I have come back, the medication that I was on, isn’t available here, it is available in the U.S. And so to get these things approved is you know, it’s a different ballgame. And again, I’m not familiar with how to get access to this kind of medication. And it is really difficult. My migraine health has declined considerably in the last few years since I moved back. And it is really hard. And it causes a lot of stress because you there’s things that you plan for you have certain milestones you need to achieve. And you mentioned like the New York bar, I was meant to sit it earlier. And after several months of you know, an influx of horrible weather that we experienced over the winter, I had to delay an exam because I literally had weeks of nonstop migraines where I was medicating and so it is really frustrating and I feel for people who get on new medication and it takes months until you actually find the right dose or I read about it all the time and are various advocacy groups where people just can’t find the right thing for them after they’ve spent years. You know how long it takes to find a medication that works for you that doesn’t have these detrimental side effects only for you to like, maybe relocate or have to, you know, you just can’t then switch it up. And it’s really frustrating. You’ve just lost years of your life trying to find something. So it’s kind of depressing to be honest with you. And on top of your physical decline. Yeah, you have days where you’re like, you’re furious,
Joe Coe 10:18
Especially when you know that this works for me.
Rabia Kiani 10:21
Yeah, I absolutely have days where I’m just, I am furious. And then there’s days where I’m just like, okay, I’ve had this for, you know, over 30 years, and I’m probably gonna have this unless like, I don’t know, like, the hormonal part is gonna kick in, and it’ll be gone in 10 years, like, there’s hope. And some as I think of my mum, who passed away last year, and I think, gosh, she had this for like, 60 years, and she was okay, I can do this for another 30 years, it’s fine. Like, you just kind of, you almost have to just keep telling yourself, like, people have it worse, like, I’ll be okay, I can hide this a little bit longer, it’s fine. It could be worse.
Joe Coe 10:57
I’m very sorry about your loss. You can live with migraine for another 30 years, but you shouldn’t have to.
Rabia Kiani 11:03
That’s really kind of you. I appreciate you saying that. It’s nice to be able to talk to someone who understands, I feel like I’d love to say that there’s some hope. First, I am a hopeful person, I’m a generally optimistic person. And I want to be optimistic, because when I see young people that are coming up and you hear their stories, you want to be able to tell them, oh, we’re gonna figure this out. You’re not going to be my age dealing with this. There’s no way because we’ll have figured it out by then.
Joe Coe 11:30
Another aspect of your story that I wanted to highlight, you talked about how you use a lot of over-the-counter medications, both as directed by a physician, but also you use the term self-medicating, and you develop what some call medication overuse headache, or a rebound headache or medication adaption headache. How did that impact your migraine journey?
Rabia Kiani 11:54
I think that’s probably one of my biggest regrets. And that goes to the fact that I was really embarrassed about having migraines. So I did, I did use a lot of medication to hide having migraines, and it was widely available, like it was over-the-counter for the most part, and it was terrible. And I distinctly remember having to go through periods of time that were really high stress. So I would medicate, medicate, medicate for like days, 10 days, 12 days at a time when I would have a migraine, and then the rebound would kick in. And I would continue to medicate, medicate, and then I would just crash. And there would be like a two three day period where I was just in my apartment, just sick, just sick, almost like like I would have my brother would show up and he’d be like, what, like you’re recovering from a really, we’re really, really bad migraine. And I’m like, oh, yeah, it’s really, really bad migraine, and it would be just horrible. And I think to myself, and it wasn’t because I was it was because I just was trying to keep up at work. It was really just that it wasn’t like I was like living my best life. It was because I was trying to maintain deadlines at work or something like that, you know.
Joe Coe 13:03
And for those who want to learn more about that topic we had on Talking Head Pain, a neurologist, Dr. Alan Rapoport, talk about medication overuse headache and his research and it’s a really tough thing because on one end, you’re living in pain, you have the migraine, you’re using the medication that’s available. On the other hand, if you have newer treatments, that might reduce the opportunity for a rebound, that will be better. But you also have access issues as many people do to get these newer treatments. So It’s a real catch 22 for migraine patients and you’re now you’re stuck between a rock and a hard place do I use the over-the-counter medication if I can get access to the medication that might not cause the same amount of rebound or medication adaptation to my migraine. So really challenging topic and then getting patients off of the over-the-counter drugs or even the prescribed acute drugs that are being used that are a little bit older and might have different mechanisms of action, but I am not the expert. I am not a doctor. Listen to the episode with Dr. Alan Rapoport. It was amazing. Rabia, before we end, is there anything that I didn’t ask that you would like to share?
Rabia Kiani 14:11
No. I mean, God just I hope that this helps somebody out there that is suffering from migraine, that they’re definitely not alone. I think we all anybody who’s out there that comes into migraine, whether it’s when they were young, whether unfortunately they’re coming into it later, we’re all in our journey somehow I think made mistakes or are figuring it out. I mean, I still make mistakes. Were thinking to myself, I could have taken something earlier and prevented the migraine instead of like trying to tough it out or we all I think make mistakes during our journey, but I think it’s just being kind to ourselves. I think that’s the key.
Joe Coe 14:48
I so agree.
Rabia Kiani 14:49
Yeah.
Joe Coe 14:50
I struggle with the taking the medication at the right time, too. It’s like why don’t my waiting but you wait because you’re like, do I really need it I get a certain amount of a month for these and is this enough you know? Should I, am I going to need more next month and it’s a game that we shouldn’t have to play. But yeah, really listening to your health care provider sharing decisions with them being open really helps and I so appreciate you coming on sharing your experience and your strength and being vulnerable with us today. It’s important for people to hear and feel that because we’re not alone. So thank you so much.
Rabia Kiani 15:26
Yeah, thank you. Thank you for engaging the wider community. It’s really kind of you.
Joe Coe 15:30
Thank you for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. This podcast was made possible with support from AbbVie Canada. If you have any questions, thoughts or suggestions for us, you can send us an email at [email protected] If you enjoyed this episode, please give it an honest five star rating. Write a positive review and spread the word by sharing it with your friends and family. It’ll help more people like you find us. I’m Joe Coe and I will see you next time.
Narrator 16:02
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
On this episode of Talking Head Pain, Joe is joined by Genevieve Pharand, a lawyer and a member of the Board of Directors of Migraine Quebec. Genevieve discusses her journey from her first migraine attack at the age of 10 to the debilitating chronic migraines she began to experience in her 40s.
Genevieve discusses how her journey led her to become an advocate for fellow migraine sufferers. Tune in to listen to Genevieve’s testament to resilience and hope amidst the challenges of living with chronic pain.
Embracing Change and Finding Hope: A Conversation with Genevieve Pharand
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation podcast network.
Genevieve Pharand 00:06
I’d been diagnosed with migraine in 2012. But I didn’t really understand what it meant I thought migraine was just another word for headache. So as I started getting those attacks, I just thought that the headaches were getting worse. And it wasn’t clear to me at that time, what was going on and what I was heading for that but gradually migraine also affected my work and my family too.
Joe Coe 00:40
Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host, Joe Coe, Director of Therapeutic Area Growth and Integration with the Global Healthy Living Foundation, as well as Co-President of GHLF Canada. I’ve been a migraine patient for over 20 years, so I know firsthand how debilitating this disease can be. Today I’m here with Genevieve Pharand who is a lawyer and a member of the Board of Directors of Migraine Quebec. She had her first migraine attack around the age of 10. I’m really excited to speak with you today, Genevieve. So how are you doing?
Genevieve Pharand 01:16
I’m fine. Thank you.
Joe Coe 01:18
So I like to begin this podcast by asking all of our guests, what their worst migraine attack was like?
Genevieve Pharand 01:24
Even though my first migraine attack, I was about 10, like you said, I would say that my worst migraine attack was in 2016, about seven years ago in between the age of 10 and 43, which I was at the time, it was mainly headaches and dizziness. But in September of 2016, I got my real first migraine attack, we were invited by a company on the weekend, my ex-husband and I, all paid all activities and I ended up staying in the room of the hotel in the dark for the whole weekend with this big headache, nausea. And this was my real first big migraine attack that I got. And that started the cycle of becoming from episodic and going to chronic migraine in about two years.
Joe Coe 02:15
Let’s talk a little bit about that transition, that negative transition from being episodic to chronic. How did that feel? I know physically, you feel different, having more attacks more symptoms. How did that feel emotionally? And how did you process that?
Genevieve Pharand 02:31
Well, first, I have to say that I’d been diagnosed with migraine in 2012. But I didn’t really understand what it meant I thought migraine was just another word for headache. So as I started getting those attacks, I just thought that the headaches were getting worse. And it wasn’t clear to me at that time, what was going on and what I was heading for. But the impact is that eventually I started losing friends because I was getting those attacks first every three months, then every two months, every month, every three weeks every two weeks. And it was getting worse. And so I kept canceling movies, restaurant with my friend. And I couldn’t explain what was going on because I couldn’t explain it to myself. And then it was very hard to see them go because they didn’t understand. And over the months that went by, I just concentrated my energy on the work and my family. But gradually migraine also went back to my work and my family too.
Joe Coe 03:37
Before we recorded this, you were talking a little bit about the stages of grief that you went through. Can you explain what that means to folks around migraine? That might seem like a strange concept. We normally think of grief as when someone passes away and the stages of grief in relation to that. How did you process migraine using a similar thought process?
Genevieve Pharand 03:57
Well, just like I said, first I lost friends. After that in 2018, I went on sick leave. So I lost all contact with my colleagues identifying myself to my work. So I was like somewhere in between. I didn’t know I lost the sense of contribution. So all those losses that came one after another it was very hard to live. I was angry about myself for having this illness. And then I felt sad for losing friends, colleagues but also losing opportunities that I said that was in my work, people were getting promotions and I was on sick leave. And so I think it’s similar to when someone dies, I was losing so many things that I had to all go through those stages to finally realize that migraine was taking me somewhere else and to accept that it’s now part of me that I have to live with it.
Joe Coe 05:02
And how is it living with migraine in Canada?
Genevieve Pharand 05:05
Well, I think we’re all lucky here in Quebec. A lot of the medication is covered by insurance or RAMQ, we still have an issue of a neurologist they’re not enough for the population. But I’m lucky I have a good doctor that tried to help me. And when she couldn’t, she referred me to a neurologist specialized in migraines. So I’ve been followed by the two of them since 2020. New medications have arrived here in Canada, and I’m trying one of them right now. So I’m really grateful for everything that’s been coming our way in the last few years it’s getting giving hope to every person living with the headaches and migraines.
Joe Coe 05:47
And you took this very hard and deep and painful experience of living with migraine for so many years, and somewhat turned it into a positive by getting involved in advocacy. Can you talk a little bit about the advocacy work that you do and why that’s so important to you?
Genevieve Pharand 06:05
In 2020, I got the first medication that started helping me. I went from 15 migraine days a month to about eight or nine, so I was feeling a little bit better. And really, the feeling of not contributing to society or to something was very heavy on my shoulder. And I was a member of Migraine Quebec since 2018. And I received an email saying that we’re looking for volunteers. So I gave my name and started helping the director, she needed some help to revise some policies that needed another lawyer to intervene. So I was the contact between the lawyer and the director. And that’s how I started volunteering. So it was not really my field, but it was something I was used to doing. And from there, they asked me to be on the advocacy committee. So again, defending the rights of people is something I have inside of me. So I really enjoyed and I was really glad they asked me and I’ve been on this committee since 2020. And after that, they asked me if I would sit on the Board of Directors, as an administrator, and I was name on the board in February 2021. So it really helped me out, first, the sensation that I have are not contributing now I have something a cause. And it also helped me I say, I would say getting better because I started using my brain again, I felt I was doing something, there’s no pressure in doing anything because it’s a very a caring environment. If we have a meeting and someone who has a migraine, well, we just canceled the meeting. And that’s it, there’s no pressure. So it’s really a caring environment. So really, it helped in the emotional way. And it also helped me getting better by started using my brain working a bit at my own pace whenever I was all right, but really made me in action.
Joe Coe 08:04
That’s so important. And it’s really valuable for our audience to hear that we can find purpose in many different ways. And you’re talking about how you found a slightly different purpose that you may have not envisioned for yourself, you also discussed pacing. And if you live with a chronic disease, our pace might not be at the same pace as someone who doesn’t. And we live in a culture that we’re all looking at Instagram and social media and all these different influencers that are showing their pace might not be our pace. So we need to figure out what that is for ourselves. And it’s beautiful that you’ve been able to find that purpose and that pace in your life. It’s a really important.
Genevieve Pharand 08:49
Yeah, before I got chronic migraine, I was going 100 miles an hour, always working. And my brain stopped me from doing that. So I have to find my new pace. Now, what’s best for my mind, my body, and my work.
Joe Coe 09:04
Great point, we have to continually check in with ourselves and see if we’re doing enough if we’re doing too much, and really keep adjusting and re-evaluating it’s a really good life lesson. I’m certainly learning and I’m trying to practice it more.
Genevieve Pharand 09:19
It’s not easy.
Joe Coe 09:20
It’s not. One of my last questions for you. We talked a little bit about you being so young when you got your first attack. If you could go back and tell your younger self one or two things in relation to migraine and chronic disease, what would they be?
Genevieve Pharand 09:38
I would tell myself that, first it’s an illness. It’s not something that you can control because all the time I was in my 20’s and 30’s I was trying to control the headaches to work and take care of my family and that I wasn’t taking care of myself. I didn’t listen to myself. So I would tend to realize that I have this and I have to take care of myself to make sure that it won’t get to chronic migraine. Because really, I wouldn’t go back to that stage. It was really painful. And so I would say to myself to really listen to my body and my head.
Joe Coe 10:17
Very important, was there anything that I didn’t ask that you wanted to cover or discuss on Talking Head Pain?
Genevieve Pharand 10:25
I just want to tell people to keep hope. Because I say it migraine in my life was like a bomb exploding my social, my personal life, my professional life. And now I’m rebuilding all those aspects in my life. And we have to keep hope I never thought a few years ago that I would be here talking to you or I would get at this point to feeling better. And so we have to keep hope that things are gonna get better.
Joe Coe 10:55
Well, thank you so much for being part of that hope.
Genevieve Pharand 10:58
Thank you.
Joe Coe 10:59
And we know that your story will help and inspire others that listen, and I really appreciate the time and energy that you took to join me today. So thank you so much.
Genevieve Pharand 11:09
Thank you Joe. I appreciate it.
Joe Coe 11:12
Thank you for listening to this episode of Talking Head Pain. The podcast that confronts head pain head on. This podcast was made possible with support from AbbVie Canada. If you have any questions, thoughts, or suggestions for us, you can send us an email at [email protected] If you enjoyed this episode, please give it an honest five star rating. Write a positive review and spread the word by sharing it with your friends and family. It’ll help more people like you find us. I’m Joe Coe and I will see you next time.
Narrator 11:43
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
On this episode of Talking Head Pain, Sarah is joined by Judith Klausner, a migraine patient and an artist from Massachusetts with a love for small, intricate, and overlooked things. Judith’s experience of invisible disability and chronic pain plays an integral role in how she views the world and creates art. Her work has been featured in Harper’s magazine, Reader’s Digest, the Huffington Post, and NPR.
Join Sarah and Judith as they discuss the inspiration for her children’s book on migraine attacks, Noah the Narwhal: A Tale of Downs and Ups as well as creating art with chronic and mental illnesses, and the importance of rest as a form of productivity.
Turning Migraine Pain into Art: A Conversation with Judith Klausner
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Judith 00:10
For a strong community of people who I’ve met through the chronic migraine community have been some of the most empathetic people I’ve ever encountered. I think that people have been really giving and good at listening to other people and just really yeah, just really empathetic.
Sarah Shaw 00:24
Welcome to talking head pain, the podcast that confronts head pain head on. I’m your host Sarah Shaw, Senior Manager of BIPOC Community Outreach at the Global Healthy Living Foundation. I have been living with chronic migraine for almost 10 years and I’m very open about navigating life with my chronic disease journey as well as my experience living with anxiety. This podcast will be a window into other patients lives as they navigate their own journeys living with chronic pain, migraine and mental health. Today we are joined by Judith Klausner, an artist with migraine from Massachusetts with a love for small, intricate and overlooked things. Judith, I like to start off the show by asking everyone on if you had one word or adjective to describe your migraine attacks, what would it be?
Judith 01:10
Oh, wow, that’s a big question. I mean, the first thing that popped into my head was inconvenient, which is such an understatement. They are very inconvenient.
Sarah Shaw 01:20
They absolutely are so inconvenient. You know, you’ll be trying to like start your day and it’ll be there being like, Hey, it’s me again, interrupting your day inconvenient is a really good word.
Judith 01:30
I just feel like there was a way of amping inconvenient up like a couple orders of magnitude, because inconvenient is like, Oh, the button fell off of my favorite cardigan that I was gonna wear today. And the migraine is like, Oh, I tried to make plans for my life. And now it turns out, I can’t actually keep to any of them. So let’s completely reframe What a life looks like.
Sarah Shaw 01:48
Yeah, It’s inconvenient, but like on level 10, we’ll call it that It’s amped up, like you said, what has been your worst migraine attack? Can you tell us what that experience was like?
Judith 02:00
I don’t think that I have one particular attack. But I can point to it saying this was the worst because there’s also so many parts of migraine disease that are difficult and painful or uncomfortable, or we’re saying derailing. So it’s hard to say whether worst would be was the highest pain level, which don’t get me started on those pain charts. I don’t know a single person with chronic pain who doesn’t hate the pain chart because they just feel so inadequate. But I don’t know if I’d say that my worst migraine attack was the one that was the worst pain, or the one where the combination of pain and nausea was the most intense, or the one that happened at the time that I most wanted to be able to live in a sort of semi normal way. I have been married twice, but I have had three weddings because one of them was a COVID Micro socially distanced outdoor micro wedding. But out of three weddings. I had migraines at two of them. And so they may not have been the worst pain I’ve been in. But those were certainly times in my life where it was particularly awful to not be able to be there and experience What was happening in the way that I really wanted to.
Sarah Shaw 02:58
Yeah, I’m really glad that you brought that up. I feel like that’s something that we don’t really talk about is we’re talking about migraine inconveniencing us and derailing us but nobody really talks about like when migraine impacts like really big things like a wedding, for example. Like I think that I’m someone you know, I actually got engaged last year and like every once… thank you… and I hate to say one of my first thoughts was: Oh god, am I gonna have a migraine attack during my wedding? And so like these are real conversations and things that like happened to people and It’s not like something that I feel like we talked about about how that’s something that able bodied people don’t have to worry about right? Yeah, migraine is always there for us. It’s there for us during our hard times in our happy times. It’s just that little buddy that keeps on giving right. Oh yeah.
Judith 03:48
It’s like Clippy, the Microsoft paper clip has…
Sarah Shaw 03:51
Exactly he’s… my migraine is just like Clippy that’s such a good thing. He’s always like, Hey, It’s me.
Judith 03:57
I saw you were doing anything. Would you like me to be here? No, no, I wouldn’t. Are you sure? Cause I really think I should be.
Sarah Shaw 04:05
I see you’re trying to write a letter. Do you want me to interrupt your day? That is exactly I love that analogy that is so great. And I feel like the people the younger kids today don’t know Clippy but like I grew up with Clippy. So I I know Clippy so Well. I listen I’ve been such a fan of your work for a long time now and comes back to the you know, I know you’re an artist and but like mine stems back from the days when I first got on Twitter. And I was kind of in this isolated trying to find a community of people that were living with migraine because there was nobody my age going through what I was going through. And so I took to Twitter to just find a community and there was Mia and you and there was a couple and Angie and there were a couple other people and I found you through your book that you wrote Noah the Narwhal: A Tale of Ups and Downs, which is a book that focuses on a Narwhal that lives with migraine attacks and I remember getting so excited the See a book that a children’s book that featured a condition that I live with? I would really love it if you could share with us What inspired you to like write the book? And also why a Narwhal?
Judith 05:12
Absolutely. So yeah, It’s interesting, because I think I’m trying to remember but I think that I ended up on Twitter, because at the time, people said, Oh, if you’re going to go into children’s literature, that’s where you have to be to network and to know people. And it ended up that while I did meet some really neat people in a children’s book world, mostly, What I found was a community of migraine people like I had never had before, I also had felt really isolated. And I didn’t even really know to look for the community. And I can’t remember how it happened. But somehow I feel like it came through me somehow. But but then suddenly, there was this other there was this world of people like me who understood this experience. And that felt so freeing, somehow, I don’t know, it wasn’t just me in a corner being like, well, I guess I’m failing at life, it was other people talking about experiencing similar things and how they dealt with it, and how you could have a life that was still meaningful. In terms of the picture book, I’ve always loved picture books. Children’s literature is something I’ve been passionate about. I mean, since I was a child, but I never really grew out of picture books. And I feel like they are an incredible medium for education and change. And the picture books that my parents chose, because my parents chose very carefully what they were giving me in ways that I really appreciate and that they help for my ideas about identity and social justice, and all sorts of things that you think like well picture books, but I was raised on swimming and unions. And I felt like that It’s It’s an incredible art form, to be able to have an impact throughout somebody’s life. And because I had felt so alone with migraines, and I didn’t see I mean, in general, I didn’t see invisible disability represented in children’s literature. And I think that that starts the process of people feeling isolated, because whenever these symptoms start to come on, and for some of its as kids, you don’t see that reflected, you don’t hear your own story places. And we know how important it is for all different kinds of identities for people to be seeing themselves reflected in the media around them. So I wanted to make something that both could help reflect a child’s experience, or could help explain in a child friendly way, a parent who was going through This, or an aunt or uncle or a family friend, because It’s hard with kids and I have spent a lot of my life working with kids, it can be hard to explain. This is why I can’t engage with you like This right now. And It’s not because you did anything wrong. And It’s not because I don’t love you, you know. And so I wanted a way also that adults could communicate with the children in their lives to say, This is how I feel. And sometimes there are going to be days that I can’t play with you the same way.
Sarah Shaw 07:28
Absolutely. I feel like if I had had a book like that growing up now I didn’t start getting migraine attacks until like my early 20s. But even like having to explain like you were saying to younger family members, I was just still like migraine attacks, the kids they didn’t understand they were like, huh, like What play with me play with me and play, like, come on. And I’m like I can’t and I think having that language at a really early age. And also I think you brought up a good point about It’s nothing that they did wrong either, you know, and giving that language to kids at such a young age. So that way they can also be aware of maybe if they could be experiencing migraine attacks that they would have the language to communicate to their parents about what they’re experiencing. And I just love that you chose a narwhal. I think narwhals are so cool. Like I think that there’s not a lot of love given an narwhals but like I’m a huge I’m like they’re the unicorns of the sea. Come on.
Judith 08:19
It’s interesting, because I feel like right around when I was writing this narwhal is kind of got their moment in the sun and they started having narwhals on everything. And you ask the reason I chose one, It’s because I think about my pain very visually, which makes sense as a visual artist. I’ve often described it as like a pickaxe in the side of my head and me and narwhal had This very visual projection of a spike coming out of his head. And that felt really applicable to me in a way that I could easily visually say, you know, there’s a line in the book about he felt like his horn was growing into his head instead of out of it. Because to me, that was an easy way of explaining one of the types of pain feelings that can come with it.
Sarah Shaw 08:55
I never thought about it like that, that’s a really good visual, I would often describe my attacks as ice pick, like a um, I feel like it was I was being stabbed into my eye and the horn represents that that’s I didn’t think about that. And nice connection
Judith 09:09
I did actually end up doing a small series earlier in the pandemic of trying to visualize the pain in my specific migraine attacks and like doing little sketches of trying to visualize what the shape of the paint was and what the texture was and what the color was to me. And that was helpful way of processing some of it and I made these, these little sculptures of they were pain portraits of What the pain looked like for these particular migraines.
Sarah Shaw 09:32
That was actually gonna be my next question. I was gonna say, Does your art get influenced by a chronic illness like migraine, but you answered it, you answered it before I could get to it.
Judith 09:41
I mean, it impacts it in so many ways beyond that. I think that’s one of the most direct was literally trying to sculpt the migraine episode, but I did a series a number of years back called “Coming out of the Medicine Cabinet” that was basically doing Swarovski crystal micro mosaic on all of my medical ephemera. So I take a lot of medications And we’re all we’re sort of taught in our culture that we should be embarrassed about medication. And that medication is a crutch, which even that is a phrase that bothers me a lot. Because if someone broke their leg, would you take their crutch away from No, that would be cruel, like why. And also, because I like most people, I have many comorbid conditions. And some of mine are psychiatric. And there was a particular stigma around psychiatric medications. And so I took all of This, my migraine meds, my anxiety medications, all of it and turned them into these like bright and glittering pieces that were intended to be shown instead of hidden away. So that was another one that was a pretty direct just taking that and putting it out there. Having chronic migraine disease is such an intrinsic part of who I am, and how I interact with the world, just all the time that anything I make, I think, is impacted by migraine. But also, the work I’ve been doing for the last few years is all pieces that are of elements in nature. So animals, plants, fungi, that people tend to think of as gross or something has been ruined by them. So mold or insects, which I love insects, people don’t like them, things like that, but sculpted really painstakingly to try to give people an opportunity and invite them to look for longer and try to see the beauty that’s there and the life that’s there and things about it that aren’t just Oh, that’s gross. Oh, that’s ruined. And to me, that’s a lot. I mean, that’s very related to migraine and my experience of it, which was having a life that for a long time, I was just very depressed. And I thought, Well, It’s ruined, I had all these ideas of the things I was going to be and do and make. And I can’t do them because I can’t live like an able bodied person. And it took a long time and a lot of processing and a lot of therapy and finding my community with you guys on Twitter, and just a lot of working through things to get to a point where I realized that it was a different life than the one I envisioned for myself. But it wasn’t ruined, there’s joy in it. And there’s beauty in it. And I need to help myself learn to see and feel those pieces of it instead of just focusing on the parts that didn’t work the way I want them to.
Sarah Shaw 11:58
Absolutely, I really do.
Sarah Shaw 11:59
You said so many like important, impactful things. I wanted to address the medicine cabinet art that you were doing. A lot of people that live with migraine have a lot of comorbid conditions, myself included, I live with migraine and anxiety. And for so long, there’s such as you said, there’s a huge stigma associated with mental health and anxiety and depression and stuff like that. And I just love that you’re giving that a spotlight for something that for so long, there’s just been This huge stigma just like migraine migraine is an invisible illness, it cannot be seen anxiety and depression is invisible. And it cannot be seen. And we’re often judged so heavily by society by workplaces. And we’re seen as quote unquote, less than, but I liked the way that you’re turning it out. And you’re saying like we’re just as impactful and creative and artistic as able bodied people, we just interact with the world in a different way. And I love the art series that you’re doing, where you’re giving a light to pieces that a lot of people tend to look over. And I feel like that’s representative of the chronic illness community of where we’re seeing less than, but really, we’re a beautiful, strong, empowering community. And I think for some of the strongest like people out there personally, I feel like I don’t know, I just I just I love What you’re doing with the art and shining a light on things that are typically not seen as amazing or beautiful or resourceful or like and it just I’m connecting to them. Like that’s me, that’s us, that’s the community.
Judith 13:33
That means a lot. And it really does that, that, you know, that is always my hope as an artist is that pieces can come like that. And people can feel their own experiences in them or have a window into other people’s experiences. And I think that, you know, like you were saying, we’re a strong community, we’re the people who I’ve met through the chronic migraine community have been some of the most empathetic people I’ve ever encountered. I think that so many people take living with these challenges. And it really impacts them to give other people the benefit of the doubt, to want to share their positive experiences and share anything that’s helped them just I think people have been really giving and, and good at listening to other people and just really Yeah, just really empathetic.
Sarah Shaw 14:14
Yeah, I agree. I absolutely agree. What advice would you give out to artists maybe just starting off on their their artistic journey that maybe they’re like, oh, I don’t know if I can do This because I live with an illness like chronic migraine like What advice would you share with them that you’ve learned along the way?
Judith 14:31
I think part of it is the definition of do this, which seems like sort of a silly answer. But in the society that we live in right now, in the late stage capitalism. If you define yourself as being an artist by being able to make a living wage by doing art, then basically no one is an artist. So I think It’s pretty important to break away from that as a definition, which is really hard and also relates to other things that I’ve struggled with in my chronic illness journey, which is that I can’t work at traditional job, the way that society tells us our value is measured by how Well we do at a career, which is defined it as a thing that pays us. And that’s been really hard. Because for a very long time, I thought, well, I’m just I’m failing as an adult, because I can’t have a job in this way, I can’t support myself financially in these ways. And that’s, that is the definition that we’re given. And I think art has for a very long time had to exist outside of that, anyway, because financially, It’s just not really a feasible, This doesn’t work Well on a podcast, because I’m just waving my hands around. I think it’s very difficult, but trying to separate doing it. And being an artist and letting yourself define yourself that way from any of the financial like nonsense is really important. Because otherwise, there are so many things that will make you feel like you’re not really you’re not a real artist, you’re not, that’s as much as you can try to just block that out. It’s also I think, there’s sometimes an idea in certain, or the idea has been pushed in at times that if you’re a professional creative, you have to have a structure about like, you work on your art X hours a day, or, you know, I know a lot with writers, It’s like, you should always put aside this many hours and write for this many hours a day. And, and that’s not a thing. I mean, a it’s not everybody’s style anyway. But also, if you have a chronic condition, often there gonna be days that you can’t do that. But that’s Okay. One of the things about art that’s wonderful is that it works on your time. And if you let it so when you feel creative, when you want to make things, make them and let yourself make things. And if you are not well enough to do it, let yourself not.
Sarah Shaw 16:36
That’s really beautiful. And I think we need more people to say those things to us to remind us to take a step back. And you know, It’s Okay, that you’re not like, I think there’s a lot of competition. And we’re with social media, too. We’re always like, comparing ourselves to What other people are doing. I’m guilty of it. Listen, I do. But I think It’s so amazing that we can be also been mentors for the next generation coming up to say, like, Hey, I’m doing this and this is okay. And you know what, if there’s a day where I cannot work. That is also Okay, because that is my body is telling me that I can’t I’m physically unable to do that. And that does not make you a failure. And that leads into my next and final question, which is, we talked about how migraine can be really isolating, looking for a community is crucial. What self care tips do you have that you do for you that makes sure that make sure that you’re being your best self? I know we talk a lot about I talk a lot about mental health. And that’s one of the things that I like to share with the listeners about what you’re doing to take care of you.
Judith 17:38
Absolutely. And actually, I think I have something that spans the last question to This question really Well, that I was thinking about before, which is I saw something recently that said, rest is productive. And I thought, wow, I wish someone had said that to me. 20 years ago, I still have so much ingrained shame about the times when I need to rest and I’ll say oh, it was It wasn’t very productive today, I just had to like lay down all day. And they will always stop me and say like, Hey, you needed to rest that was that’s not you not being productive rest was what you needed to do. And I’m very grateful that I have a partner who’s not only supportive, but actively really does help me with my mental health journey to better accept myself and those times that I need to take care of myself as being valid. And It’s really helpful because sometimes as much as it’s great and important to be able to have a lot of internal dialogue about this, sometimes having external reinforcement can make a really big difference. Because as we’ve talked about this condition is already so isolating, that sometimes coming from outside can help it feel less isolated. So yeah, I think one of the biggest things has been working on trying to really feel and not just academically acknowledged, but emotionally acknowledged that rest is productive. It’s important. It’s not what you’re doing that’s less than somehow that’s not a very that sounds didn’t quite make sense.
Sarah Shaw 18:53
But I got it, I understood it. Listen, folks, you heard it here, rest is productive, do not feel guilty about resting when your body needs to because we’ve all been in those spaces of where we push and push and push or push ourselves when we’re in the middle of a migraine attack. And 99.9% of the time, it makes it worse. I’m guilty. I’m guilty of it. So I think I’m loving This era of us reclaiming and taking a step back and letting ourselves rest.
Judith 19:20
I think It’s really important. And I do think that there is a move forward on that. I think in some ways, it seems like the younger generation, I feel real, the younger generation should I think is getting better about it, which is good. I’m really glad to see that. And I do think that that mental health is a huge part of it. I mean, because It’s all inter woven. Again, I’m doing hand things which is not but they’re inter woven hands. Oh, I spent a lot of time feeling feeling ashamed and not examining that. And I think one of the things that’s been really important for me is pulling that out into the light. Shame has a much harder, harder time existing in the light and a lot of that has for me taken the form of voicing it out loud and not only seeing it as Oh, I’m sorry, not voicing the way that give it credence, but voicing it in a way that says, This is What I’m feeling. But I’m going to say out loud that I don’t need to be feeling. And again, This is something where my partner is really helpful, because It’s generally I will say to them, and they know that they’re a sounding board and this basically, but It’s an excuse to say it out loud. If I say, I’m feeling like I didn’t do well or I wasn’t productive today, or I didn’t do What I should have today because I was resting or because I didn’t feel good. And I feel like I I feel like a slug is one of the ways I will often describe it, even though I actually love slugs. And then I will try to unpack out loud saying, but here’s why I should not be hard on myself for that. And even if I don’t feel it in the moment, the fact that I’ve been practicing saying it out loud, has been helpful and really has brought me farther towards having that those be internal processes that when I start to feel the shame, part of my brain kicks in and goes, Wait, hold on. Nope.
Sarah Shaw 20:56
I love that. I love I feel like that goes hand in hand with like unlearning and saying things one of the one of the things that my therapist like says to me, for example, when I’m like having an anxiety attack is to say out loud, I am safe. I am Okay. This is something that is the gist of the action of saying it out loud. Maybe you don’t believe it right in the second. But your brain I think starts to rewire and you know, feel more calm and feel more accepted or feel less guilty. So I’m all for saying affirmations out loud. Well, Judith, I’ve really had such a lovely time chatting with you. And you know, finally getting to meet you face to face after so many years of being you know, seeing each other’s avatars on social media. And It’s just been It’s been really great. So thank you so much.
Judith 21:40
Thank you so much for asking me to be on This and it really is wonderful to get to see as much as the cartoon avatar face is great. It’s even better to get to see your real face
Sarah Shaw 21:51
Thank you for listening to This episode of talking head pain, the podcast that confronts head pain head on. If you liked This episode, please give it an honest five star rating write a positive review and spread the word by sharing with your friends and family. It’ll help more people like you find us. I’m Sarah Shaw and I will see you next time.
Narrator 22:11
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
On today’s episode of Talking Head Pain, Sarah is joined by chronic migraine patient D’Sena’ and Bailey, her service dog, who helps her with her chronic illnesses. D’Sena’ is also a single mother of a child with migraine attacks, and she shares with us how she supports him during these episodes.
Join Sarah and D’Sena’ as they dig into topics such as caregiving, parenting, advocacy for children, service dogs, health insurance, and discrimination related to chronic migraine and health care for women of color.
Navigating Migraine and Motherhood: Finding Strength in the Storm - A Conversation with D'Sena'
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
D’Sena’ 00:06
“I think since COVID and finding other people in the disability community and finding Headache on the Hill and things of that sort that I have like really found my home. That’s what I feel like. I found my home I found my people.”
Sarah Shaw 00:06
Welcome to Talking Head Pain, the podcast that confronts head pain, head on. I’m your host Sarah Shaw, Senior Manager of BIPOC Community Outreach of the Global Healthy Living Foundation. I have been living with chronic migraine for almost 10 years and I’m very open about navigating life with my chronic disease journey as well as my experience living with anxiety. This podcast will be a window into other patients lives as they navigate their own journeys living with chronic pain, migraine and mental health. Today I’m joined by D’Sena’ a chronic migraine patient and mom, and Bailey, her service dog that helps her out with her chronic illnesses. Welcome to the show D’Sena’. I like to start off the show just by asking if you could use one word or adjective to describe your migraine attacks, what would that word be?
D’Sena’ 01:15
Consuming.
Sarah Shaw 01:16
Ooh, “consuming”, that’s a really, really good adjective. When we live with a migraine, it affects every part of our day, right? Our personal lives, our work lives, our family life. Do you mind going in… talk a little bit more about what that consuming feeling is like for you?
D’Sena’ 01:20
Well, I live with chronic migraine. My migraine is every day, all day. So it literally consumes my life. But since I am a single parent, I feel like there is no just time to just stop and just rest.. It’s a go go. I have to do it even when I don’t feel like doing it, so…
Sarah Shaw 01:55
That’s very true. And I actually have a question to talk about parenting with your child who also lives with migraine, right?
D’Sena’ 02:02
Yes.
Sarah Shaw 02:03
Yeah. Do you mind sharing a little bit, uou know, I think your son… he’s very still very young. Can you talk about what that’s like to be a mom with migraine attacks, and then also taking care of a child who’s experiencing migraine attacks? Like how has that experience been? When did you first notice that he was getting migraine attacks?
D’Sena’ 02:21
So my son started experiencing his attacks when he was five. Right now he’s nine. So he’s been dealing with them for the last four years. Usually every kid wants to play and they’ll play through anything. But he gets to the point where he’s playing and then: “Okay, I don’t feel good. I want to lay down.” If he gets really nauseous, he’s throwing up, he is going through it. And like… it just drains him.
Sarah Shaw 02:48
Yeah. Did you know… were you able to pick up like on: Okay, this is something that my son is going through and it’s definitely migraine, or did you have to kind of like wait to figure it out? Or did you know right away, you were like: I know exactly what he’s feeling because that’s what I’ve been experienced.
D’Sena’ 03:04
Yeah, I knew it was migraine. I knew it was real. And I knew I wanted to see him get treatment right away because I do not want him to become chronic. So if we can get a little Zofran to stop with the nausea, we’ll take that. We can start with the Tylenol, the Advil, that’s what he usually takes, that’s fine. I will take out my toolkit and I will use everything that I’ve gotten from a retreat just to help him or to help relieve some of his migraine. And with his attacks, sometimes he’s missed school. So he’s one of those kids that actually miss school with his migraine attacks.
Sarah Shaw 03:41
That’s so rough from a really young age to, you know… we often on Talking Head Pain, we hear a lot about adults and older adults or teenagers maybe living with migraine, but not young children. And I feel like it’s a lot more common than we realize. Like, have you met other parents that have children with migraine?
D’Sena’ 04:01
I think this year when we did Headache on a Hill, that was the most that I met other parents talk about them dealing with the accommodations because that was one of our asks: Hey, you know what I’m talking about? It’s not just like: Okay, well, you know what I’m talking about because you have migraines too. You’re a parent of a child that has migraines, so…
Sarah Shaw 04:21
Exactly. And speaking of accommodations, was that something that you’ve been able to put into effect within the schooling system with your son yet? Or is that something that maybe it’s not something that you’re able to do?
D’Sena’ 04:32
Well, it’s a back and forth because I believe that it’s an issue with the migraine, whereas his dad is kind of like: Oh, you know, he can sleep it off. So… and now it’s difficult when one parent believes that it’s an issue and the other parent doesn’t.
Sarah Shaw 04:48
And that goes along, I think with the stigma of migraine of it being an invisible illness when you don’t physically see bleeding, or you don’t see, you know, someone with their hand cut off or a broken bone where we know that we need to get a view on… You need to be on disability if you had some of those things or a little bit more time off from work, or school. But with migraine, it’s a little bit different because a lot of the side effects that we experience are invisible to a lot of society and a lot of that stigma that comes in about it’s not that serious or it’s just a headache, and you can just sleep it off. That’s definitely an interesting struggle for especially kids at a young age where it’s sometimes hard to like… You’re a kid you just want to play, you want to see your friends, you want to live like a normal life and it’s really hard when your migraine stops. What advice would you… You said that you met a couple of parents this year at Headache on the Hill since one of the asks was about accommodations? What advice would you give to share for parents of children who experienced migraine attacks? Like what are things to look out for? How have you helped care for him? What are ways maybe for somebody that does not live with migraine that might be helpful for them caring for younger children?
D’Sena’ 05:57
Well, first of all, it is a real disease. And not only with seeing it in my son, we see it in his cousin, which is my niece. She’s four and she started saying she feels it in her tummy. So I don’t know if you’re aware of Migraine Diva where she talks about, you know… she was young and it was the tummy. That’s… that’s where the migraine is first. Sometimes look out for those signs: “My tummy hurts”, you know, “I’m not feeling well” and then go through the steps of: “Okay, when we do this or do that does it make it feel better? Do we need to turn the lights down low? Do we need to… Is too much sound too much for you? Is that sent a lot for you? so that we can adjust to make them feel comfortable during that period of time. It’s just like an adult, but they’re a child and they’re learning but they gotta learn to advocate for themselves as well. So here’s their starting point, but when they get out in the real world, they’re going to have to know how to do it themselves.
Sarah Shaw 06:56
Absolutely. I think that’s some really good advice. Growing up, I think I probably was experiencing migraine attacks, but I didn’t have the word for them where I was often be super nauseated all the time. And I didn’t know that there are some migraine attacks that you can experience without the headache. I didn’t understand that was something that is common. I assume once I started to get diagnosed: “Oh my god, my stomach really, really hurts” but I didn’t have the head pain and then I realized so I started to see people and talk to them about it. Yeah, there are different types of migraine attacks that don’t always present with the head pain. You know, there’s aura, there’s vestibular migraine, there’s hemiplegic migraine, there’s so many different types of migraine attacks. And I feel like if we don’t have the resources or the education about that, from a young age that we can miss out on getting treatment as early as possible. I want to switch gears and bring it back to you and ask what was your worst migraine attack like?
D’Sena’ 07:56
Oh my goodness. That’s hard to say because I started having migraines when I was a child. So I started off as episodic. But I was involved in a motor vehicle accident back in 2010, December 2010. And then I… which resulted in a TBI. I was told that it’s just a headache, it will go away. And that headache turned into like a year of never going away and it never went away. And I was put on different medications. And you know, just I wasn’t believed. So the worst is not being believed. Going back and forth to urgent care or the hospital and then saying: “Okay, you know…” with any migraine sufferer, “What are you here for?”
Sarah Shaw 08:40
That’s rough when you’re not believed. And especially if we add the added stigma being women, of being women of color to try and get treatment. I feel like it’s a lot harder. So how does that make you feel?
D’Sena’ 08:51
Ah, it was very frustrating. It got to the point where it’s like, you know, I’d rather suffer in silence at home, than go there, because I’m going to be around a lot of loud people. I see the fluorescent lights. And I’m probably going to be one of the last people to be seen because ‘migraine is just a headache, it’s just a headache’. “She’s just there for a headache. Nothing serious.” But I did have some doctors that did believe me. And they would come in and say: “Okay, Well, what would you like?” Even though they have my cocktail of choice in my chart. “What would you like?” So would tell them: “Well, this is what I would normally take,” and then we would go from there. And then I would you know, go home. It wouldn’t bring it down from… I wouldn’t be at a one but at least I wouldn’t be at my 10 or off the charts, at least. I would be able to function at least.
Sarah Shaw 09:41
It took you… and I think that you bring up a really… you brought up this earlier. I think it’ll bring up a really good point about people that take medications to help knock out a migraine attack versus the people who take medications to just get you back to baseline, right? You’re like: “Okay, I’m no longer at a 10, maybe I’m at a four or five, but I can function at those levels.” And we don’t talk about that a lot about how sometimes we could with… especially with chronic migraine, we sometimes are dealing with pain and working through that. You mentioned, you’re like: “I’m a single mom, I have to work through this pain because my kid’s relying on me,” you know. That is something that we don’t talk about. And I think that that’s a really important aspect to play in terms of our treatment and care. And I want to just go back to you know how sorry, I am that you weren’t validated that you weren’t seen because that’s our health care system failing us that you should be believed we should want the doctors to come in and treat us and take us seriously. What are you like now? I know that was a couple of years ago, how has your care changed? Have you noticed a difference? Are you being believed more?
D’Sena’ 10:48
I think, since COVID, and finding other people in the disability community and finding things like Miles for Migraine and Headache on the Hill and things of that sort that I have, like really found like my home. That’s what I feel like I found my home, I found my people and we can bounce ideas off of one another. You know: This is what I dealt with; or how would you handle this situation? That has really helped out. And then just having my little corner, my little space on IG with my service dog, that has helped because I’m seeing more people that deal with migraine notches, chronic migraine, hemiplegic migraine, Thunderclap migraine or TMJ, or all different types. I didn’t know there was 200 plus migraines. But like, wow, and I knew there was a shortage of Headache Specialists for sure, because at the time I was with one insurance company, and I could not go out of network, I had to stay in network. And we only had one Headache Specialist. And that Headache Specialist just like kind of scarred my experience after reading his detailed doctor’s notes that I just did not want to go back to him at all. Although I loved all my other doctors and network, I ended up changing my insurance completely just so that I could see the doctors that I wanted to see, that could help me with my migraine.
Sarah Shaw 12:21
I think you bring up a really important point that we haven’t talked about, is about insurance companies, I always call them my nemesis because I feel like with prior authorizations and different step therapy that we have to go through… And also keeping you in a bubble of you know, you only had one Headache Specialist to choose from in that insurance plan that you had to switch insurance companies to be able to see better doctors. And that’s very limiting, and it’s not fair for patients that if you’re stuck with no, maybe a not so helpful doctor that you have to either keep seeing them or just not going to see them and suffering through the pain. I’m really glad that you were able to switch and to open up your horizons to other and better care, because that’s what we all deserve. All patients deserve good access to care. It shouldn’t be: Well, the fewer than one insurance plan, you’re only limited to a certain level of care. It should be across the board.
D’Sena’ 13:17
Exactly. And I think like one of the big things with seeing that prior physician I was always taught if you’re going through something or a chronic illness to bring an advocate or someone with you. Because if you’re not able to talk at least you have that person there with you that can help you and that person for me was my mom and because we’re women of color, he wrote it off as: “Oh, you know, her Mom is angry.” No, my mom is not angry she’s advocating for her daughter, “and I think she goes see behavioral health because it’s all in her head.”
Sarah Shaw 13:54
Oh my gosh, that is completely. I’m… First of all, I’m sorry that you and your mom had to go through that. As black women, there is this unfortunate stereotype that we get put in an angry corner. When we speak up and advocate for ourselves we’re seen as angry and that is not at all what it is we’re just trying to advocate for our children advocating for ourselves, advocating for our parents, advocating for our friends, and those notes stick with you and traumatize you and make you want to switch and leave or not go back to the doctor at all and we have to do better as a society, we have to do better to not put those stereotypes and microaggressions into the health care field because we need more and more people to be getting better care to make sure like you said that you… you once started with episodic and now your chronic, we have to avoid going from episodic to chronic and the way to do that is by not putting notes like that in our patient’s files. I wanted to… I know we’re kind of coming down to a little bit more time but I wanted to talk a little bit about you mentioned your Instagram and service dog Bailey; a huge fan. Can you talk about how how she supports you during migraine attacks or your other chronic illness where it’s like: What does that mean to you to have that support?
D’Sena’ 15:10
Oh my goodness, it… First getting Bailey was like: Why do you need a service dog? So obviously, I have a disability. Even though my disability is an invisible… invisible disability, when I do go through certain things, it becomes visible. So she has helped me out a lot. This year, Bailey will be four and she is… we’re glued together. We are definitely glued together. Like right now she’s laying at my feet. And she’s listening to us talk. I couldn’t ask for a better dog. So I’m glad that she has helped me, she… she knows how to bring me water. She knows how to bring me my medication. She knows how to respond and bring someone if I am having a seizure, because I have a seizure condition. She alerts when I am going through like […] and I’m about to faint, she can let me know like 10 to 15 minutes: Hey, you need to sit down or you’re gonna fall down.” So yeah, she’s been amazing. I love her.
Sarah Shaw 16:10
She sounds like a great right hand dog. You know, just always they’re just near you. And she’s, you know, like an accessibility for you. She helps you live your best life, it sounds like. That’s so wonderful and so beautiful. And I’m glad that I had a chance to meet Bailey during Headache on the Hill. And she was just such a joy in such a pleasure. So I’m really glad that she’s made such a positive impact in your life.
D’Sena’ 16:33
Thank you.
Sarah Shaw 16:33
So I have one final question. Living with migraine attacks, I know can feel like really isolating and lonely. What self care tips do you do for yourself to make sure you’re taking care of you?
D’Sena’ 16:44
Self care. So I really like getting my nails done. So I do that at least once a month. And I think that’s like my one like relaxation thing away from like my kids. And even like my nail tech, he knows… he knows Bailey baby. So even the other day, like: Where is she, we haven’t seen her.” I’m like, well, I’m gonna bring her in the summertime when it’s not so crazy right now with dropping off and picking up the kids, but they miss seeing her. And it’s amazing when you go somewhere they ask about her and don’t have her. That is the one place that we really feel like at home. And I do. I’m a big body art person so I love getting tattoos, so that’s another thing that I do.
Sarah Shaw 17:28
Yeah, that’s awesome. I think we all need to like take a step back and really hone into the little things that like you said, feel like home feel like maybe an escape or make yourself feel better because living in pain 24/7 or even weekly or daily is a lot and I think what we forget to do is to take care of ourselves. So if you’re all listening out there, make sure that you are doing… going to the nail salon, getting your nails done, and taking mindful moments for yourself. Well D’Sena’ I’m so glad that you joined us for Talking Head Pain and do you have anything else you’d like to add that we maybe didn’t discuss?
D’Sena’ 18:04
Next month is Retreat Migraine. I’m super excited about that. So hopefully some of our or your listeners will be there and I get to meet them. I am a friendly person. Don’t be afraid to talk to me.
Sarah Shaw 18:16
Yeah, you definitely are. Well, I hope you have a wonderful time at Retreat Migraine and it was such a pleasure having you on!
D’Sena’ 18:23
THank you so much. Thank you for having us.
Sarah Shaw 18:25
Thank you. Thank you for listening to this episode of Talking Head Pain the podcast that confronts head pain, head on. If you like this episode, please give it an honest five star rating, write a positive review, and spread the word by sharing with your friends and family. It’ll help more people like you, find us. I’m Sarah Shaw and I will see you next time.
Narrator 18:47
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this episode of Talking Head Pain, Sarah is joined by Kate Schwab, LCSW, a somatic therapist who also happens to live with migraine. Kate uses a client-centered approach to therapy, tailoring her treatment to each individual’s unique needs and goals. Kate integrates evidence-based techniques such as cognitive-behavioral therapy (CBT), mindfulness, and psychodynamic therapy to help her clients achieve lasting change.
Join Sarah and Kate as they have a real conversation about how migraine and mental health intersect, what drew her to become a therapist, the stigma around speaking up about mental health and pain, and the importance of having an inclusive therapist that creates a safe space for those living with chronic pain like migraine.
Breaking the Stigma: Understanding Migraine and Mental Health with Kate Schwab
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Kate Schwab 00:10
I’m so shocked by how little knowledge people have about migraine, even doctors, even therapists across the board, and I wish I had had a therapist who specialized in migraine 10 years ago.
Sarah Shaw 00:22
Welcome to Talking Head Pain, the podcast that confronts head pain, head on. I’m your host Sarah Shaw, Senior Manager of BIPOC Community Outreach at the Global Healthy Living Foundation. I have been living with chronic migraine for almost 10 years and I’m very open about navigating life with my chronic disease journey as well as my experience living with anxiety. This podcast will be a window into other patients lives as they navigate their own journeys living with chronic pain, migraine and mental health. Today, I’m here with Kate Schwab, a somatic therapist who also lives with migraine attacks. Kate, I’d like to start off by asking you if you could use one word or adjective to describe your migraine attacks, what would it be?
Kate Schwab 01:04
Whoa, that’s such an interesting question. I imagine eight years ago, I would have a very different answer, but now I’m like, kind of at a loss. The first word that came to mind was like: Relentless. And that’s less of how I feel now. But that is how it used to feel. I think now there’s more of like a flow to it.
Sarah Shaw 01:22
That’s good. Relentless is a really good word that you chose because I think when we’re first starting off on our migraine journeys, and you’re kind of confused, and you’re like: What is this pain that will not end that I do not know enough information about to take care of myself? Relentless; We can all relate to that. Now, what was the word that you chose?
Kate Schwab 01:40
I think I said flow, but I don’t know. The word isolating comes up, right. It’s inherently so isolating and overwhelming.
Sarah Shaw 01:48
Those are all good words. All good words. I like to start off the show by asking those questions because I feel like every single person is going to have a very different answer or sometimes similarities. So I like to show like: Migraine is annoying, migraine is frustrating, migraine is relentless, migraine is isolating. So I think a lot of our listeners can relate to that.
Kate Schwab 02:07
It’s interesting, and I noticed my impulse to try to make it sound nice. It was like what’s the positive?
Sarah Shaw 02:14
You can be mean to your migraine. Our migraine attacks are not always nice to us. There’s no need for us to be nice to them.
Kate Schwab 02:20
Right.
Sarah Shaw 02:21
Speaking of migraine attacks, can you share with us what your worst migraine attack was like?
Kate Schwab 02:27
Interesting. I would say my first worst one was the worst because I didn’t know what was happening. You know, I thought there was… obviously it wasn’t an emergency but it felt really confusing and scary. And I had been dealing with what I know now is rebound headaches for months that no one had told me about. I didn’t know anything about it. There’s no way for me to know. And then I remember like one Sunday morning, I was like home from college and staying with my family. And I just had… I like woke up with unbearable pain. And it just continued all day. And I had to go to the ER and that was the first time I had to go to the ER for migraine pain. And so that definitely jumps out as like the most overwhelming, and like confusing. I think we were all like really scared because we didn’t know what was happening. And the ER as I’m sure many of us know, is not like the best place to go in the midst of that. But it was also like the thing we knew to do.
Sarah Shaw 03:22
Yeah, what are we supposed to do and we don’t know what’s going on with our bodies. We’re scared. We’re in pain, we want relief. So many people living with migraine attacks end up going into the ER because there’s just not enough education or resources about what your first migraine attack feels like. Because I think every single person… I know for me, I have a very similar story where I didn’t realize what I was experiencing was a migraine attack because there was no education out there for me about it. I always thought that migraine attack means that you can’t move, that you… and some… for some people, they can’t move. But for me, I was standing up I was with my friends and the nausea just overtook me and I had a lot of pain. And I didn’t know the word for nausea. I was just like, my stomach hurts. And I didn’t know back then that very common side effect of having a migraine attack. And again, very scary, very isolating. I’m sure if you think back that that experience must have been very scary for your entire family. When you went to the ER were they able to figure out what was going on or were there sort of like confusion still about what was happening?
Kate Schwab 04:31
Yeah, definitely still confusion. I think they knew it was something pain related. Certainly, you know, a lot of neurologists are not headache experts. From what I remember they gave me a lot of IV fluids and kind of like sedate… you know, like gave me some thing to kind of be able to sleep, but I remember having… It’s actually wild. I haven’t talked about this before but I had an allergic reaction there that day to an anti nausea med in the IV. That is an odd reaction because… I’ve since learned from a doctor what it was. It was a reaction that looks like panic.
Sarah Shaw 05:06
I know exactly what you’re talking about. I was just talking with a friend about this, she had the same reaction.
Kate Schwab 05:11
And so I was in the ER having what felt like a unbelievably huge panic attack. And none of the doctors or nurses… I don’t know if they didn’t know that that was a possible side effect, or they didn’t put it together. But I was like, am I… Like what is happening? And my parents were terrified. And we just thought I was like, really having a hard time with the pain, which I was. But then years later, I was at Jefferson getting IV, like inpatient. And I had the same experience. And I was like, oh, no, what’s happening again, and the nurse said: This is fine. This is normal. And it’s a reaction… they took it out of the IV, and I never experienced that again. So it’s just like another really isolating scary part of really not knowing what was happening, and then not really even knowing what’s happening, you know?
Sarah Shaw 05:54
Yeah, that must have been so scary. And as someone who lives with like, I live with anxiety, and I’ve experienced panic attacks: You’re in pain, and now you’re having a panic attack, and nobody knows what’s going on. Oh, goodness!
Kate Schwab 06:07
Exactly!
Sarah Shaw 06:08
I’m so glad that the next instance where you had that the nurse was able to explain: It’s alright, this is a very common reaction, we’re going to give you something to help because I also went to Jefferson, and they knew that I was somebody who had anxiety. And so they already gave me that medication to help calm me down, because it’s such a common reaction. But wow.
Kate Schwab 06:29
And I think since I’ve been working in this field, clinically, part of what I notice is how often if someone shows up with anxiety, and this was not news to anyone listening to this, I’m sure it’s like, that’s kind of seen as the thing, the reason why you’re having any sort of reaction to the pain, not the fact that the pain is unbelievably overwhelming in and of itself, and I think that was like my first glimpse of that experience of like: This is a literal reaction to a medication, but I’m just kind of being placated or like told to be quiet about it. And it just really blew my mind and still blows my mind.
Sarah Shaw 07:02
I’m really glad that you shared that because I feel like that’s something with migraine, and I’ll get into this later but talking about mental health and things like you know, for so long, because our pain is invisible, you can’t really physically see that we’re having a migraine attack. Maybe your eyes, look more droopy, or you’re unable to leave the bed, but sometimes with doctors, especially as women, we’re told it’s all in your head, or we’re told that our pain… For me, I was told my pain was just anxiety. And I was like, I know what anxiety is.
Kate Schwab 07:32
Yeah.
Sarah Shaw 07:33
This is not anxiety.
Kate Schwab 07:35
Exactly. Which is another way that we’re not being seen as like experts on our own bodies and experience. You know what anxiety feels like in your body, and you’re saying that’s not what this is. You have the most information in the room about what happens in your body, and you’re having anxiety and it’s just as endlessly frustrating that there are practitioners who are not looking to patients or clients as the expert on that experience, right?
Sarah Shaw 07:59
Absolutely. Absolutely. We need more trauma-informed, mental-health informed doctors that know how to talk to patients, especially when we’re going through something that’s really scary, like not knowing… I’m thinking back to you and your family, not knowing what was going on with you. Very terrifying experience, so I hope that we can find more and more doctors to help patients, you know, get help and to get relief. So I found you on Instagram, and we’ve been following each other for a while, and I was really, really drawn to your Instagram handle @yourmigrainetherapist, and I immediately thought… felt like a sense of belonging. I speak pretty openly about my experience living not only with chronic migraine, but anxiety as well. I like to share that with my followers because I am human. I’m someone who, you know, for a while I was ashamed of living with anxiety, and since going back to therapy, I’ve kind of reclaimed it. That’s who I am. I’m a person who lives with chronic pain. And I also live with anxiety. And so I was really jazzed that there was a therapist out there that was inclusive and is talking about chronic pain in therapy. I would love to learn about what led you on this journey to create this specifically as your career path, and also what led you to start your Instagram account.
Kate Schwab 09:14
So nice to hear that. I really appreciate how you’re talking about your own experience. I think therapists in general are kind of… or in some cases are taught to be a blank slate. That’s kind of what we’re taught in grad school, etc. That’s not how I function, that’s not realistic. I don’t really think that helps anyone. So I love what you’re saying. And in terms of what’s brought me to this. I think I… way before I had a migraine diagnosis or was dealing with migraine on a more chronic basis. I knew I wanted to be a therapist and was in undergrad for psychology and then started experiencing migraine and in college… late college, and then later once I went to grad school for social work, I just was really drawn to working with connection and disconnection and found that to be such an interesting scene. And I’m very relationally oriented. So I really work on relationships with the person I’m working with. We work on what safety and connection gonna feel like here; how do we make that together? And then find that for you out in the world as well. And how do we find that internally for you? And I think that in the decade plus that I’ve been dealing with pain, I have been acutely aware of how much pain disconnects us from each other, and how… and of course, I’m going to speak as a white woman; whiteness, and like white supremacy, and the way that we’re in capitalism, and the way we’re taught to be, keeps us from each other in these huge ways, and keeps us from being able to tolerate sitting with people in pain, or just being with each other in pain, right, like, in whatever way. And that’s not specific to migraine, or physical pain, I think that shows up with trauma and relational trauma and intimate partner violence and all these other things. But I noticed that I work with a lot of queer people. And one of the last jobs I had was working at a place where we really focused on relationships and equity. And there’s just such there’s so much there about connection and disconnection and building safety. And I think at a certain point, I kind of felt like I’ve spent a decade learning everything I can about migraine, learning how to figure it out in my life, and my relationships and my own body, and I feel like I have all this information, and I just got this degree, and so like, I think there’s a thing that it felt like a responsibility to talk about this stuff more. And it’s something that I still am so shocked by how little knowledge people have about migraine, even doctors, even therapists across the board, and I wish I had had a therapist who specialized in migraine 10 years ago. And so I think that’s a big part of why I started the Instagram, I truly sorted out because I thought it’d be fun. And it would be like, you know, I could put some things up that I’m thinking about for my practice and maybe connect with other therapists. And they did not expect the amount of like interest in it that quickly. It just felt really fun. And it’s such a sweet group of people everyone’s so smart and like curious and excited about, you know. Stuff that people are talking about… It’s been, like delightful. And I think for me, it was kind of just about the sentiment I have about why I do this work is like I don’t want people to feel alone with this stuff. I think often that’s what people have had to do, is be like really alone. And that’s… I have that experience for sure.
Sarah Shaw 12:27
Absolutely. Thinking back to what you said about safety and how important it is for people to feel safe, to feel vulnerable, and that’s a lot of what therapy is, is having that safe space, but also with people living with chronic pain, living with migraine, living with cluster headaches, a lot of times we don’t feel safe because we are constantly in pain. And so knowing that there is a therapist or multiple people out there, because I see a therapist who… she doesn’t live with migraine but has had experience with chronic pain, and there’s just this level of like… you get it you understand. Like I know for me, I’ve shown up to my therapy appointments like in the middle of a migraine attack. And she is so kind and so understanding and empathetic and is like we can reschedule this, you do not have to endure this session. Like I want you to take care of yourself and I want you… and then the next time… We’ll reschedule and I’ll come back. And I was like I really needed that break. Thank you so much. And just like knowing that there are people out there that can understand I think is brings that level of safety and community. A lot of people living with migraine and chronic pain in general also live with comorbidities like mental health issues like myself. I live with anxiety and a little depression. In addition to medications to help manage my anxiety and panic attacks, I also go to weekly therapy. In fact, in a survey run by the American Migraine Foundation, patients with migraine reported being diagnosed with anxiety, almost 60%, with depression 50%, or PTSD 25%. Can you talk about how important it is to have a therapist that is also informed in their sessions on how to talk or validate with our clients about chronic pain, for instance, with neurological disease like migraine?
Kate Schwab 14:17
Yeah, that’s such a good question. I think the… One of the things I think about a lot with how important it is to understand what’s happening is; a lot of the people I work with have tried so many things, are completely exhausted, feel pretty helpless or powerless, and are extremely used to going into a provider, and not being seen, and being kind of told what to do, maybe given like a couple of seconds to talk about what they are feeling or thinking. It’s just like not a collaborative experience. And it’s not an experience. It’s about the person in front of them. And so I think that a lot of how I try to work is by really slowing everything down and figuring out what… Yeah, what do they need and what have they not been getting. And there’s such a clear impact on the body and on the mind, but on the body in this very specific way, when I see someone come in, and they have not been believed, or they’ve been dismissed, or they’ve been going through school where they haven’t had any support or resources. Your body gets so tight and exhausted, and you’re in that kind of hyper vigilant state, right, you have to take care of yourself all the time. You have to check everything all the time, because no one else is doing it for you. And what we’re taught over and over is the migraine is not something that people really are invested in supporting in a systemic way. And I don’t mean that for everyone, I think there’s fantastic people doing really lovely, really important work. But on a large scale, historically, it’s not something that people really get support around. And so that has an effect, physiologically, right, it becomes a terrifying thing to have to move through the world because no one is looking out for you. And so when I think about what therapy can offer, I’m sitting with someone and we’re talking about that, and we talk about the possibility of this being a space where they don’t have to do that, and their shoulders like fall down, right, or like a deep breath comes out or something like that, where we’re building relief and building connection, where they aren’t the only one holding it. I can hold it with them, actually, and we can figure out what they need here together. And I have found that to be really important, and really not something they’re getting in other places, unfortunately, because migraine is such a, you know, we know all the things about that, but it’s just such an underserved community. And of course, on top of that, you know, depending on other identities that you hold, you’re very used to that already. And the safety part of that is extremely complicated. And it just compounds.
Sarah Shaw 16:47
Absolutely, I remember the first time that I was believed by a healthcare provider, and I was like, I was like ready to like have my list… my long list of things. But no, this is… I understand you’re in pain, and It’s not okay that you’re in pain, and we’re gonna figure out a way to make you not be in this much pain anymore. And we’re not going to give up on you, because I had been told in the past, you’re a problem patient because all the treatments were not working for the kind of how much pain I had been in. And I remember you’re talking about your shoulders relaxing, like I just remember the sense of calm that like came over me and feeling like we talked about safe spaces, but like that safe space of like knowing; okay, someone’s got my back, they believe me, and I can like I’m not doing this fight with my pain alone anymore.
Kate Schwab 17:34
Oh, yeah, absolutely. And I do think that what we know clinically is that yes, theory is important. Yes, training is important. But the thing that is therapeutically going to make the biggest difference is if you feel safe and connected to the therapist. And so I think that’s why I’m such a proponent of learning how to show up for clients better who deal with chronic pain and chronic migraine because it is a literal safety thing, right. But I think when you take the time to learn about any identity, you’re building safety, and you’re building connection, and that is one of the most important things you can do as a therapist
Sarah Shaw 18:10
Absolutely. Since we know that living with any kind of pain, but migraine attacks, it can sometimes you know, we talked about it feeling isolating, what self care tips do you do for yourself to make sure you’re taking care of you?
Kate Schwab 18:22
That’s nice. I do a lot at this point with that. I have some really specific morning and nighttime kind of routines that start my day and my day really nicely. I mean, I talk a ton on my page about building internal safety and connection, and that’s something I’ve been lucky to work with an amazing somatic therapist myself for years at this point. And that’s been huge in just building like a really solid, safe relationship with myself. And so I lean on that a lot, and how I talk to myself and how I move through the day is really has really been transformed through that. And then I also think something that a lot of people with migraine struggle with is some rigidity, right? We’re kind of taught you have to do everything… zero, you know, one way or the other. If you’re not doing it all this way, if you’re not cutting out all these foods, you’re gonna get you know…it’s gonna be terrible. And so I think building some flexibility and some tolerance for things kind of just going how they’re gonna go has been a huge self care practice for me. I don’t know if that makes sense.
Sarah Shaw 19:26
No, that absolutely makes sense. I feel like with migraine, it’s unpredictable, and so we need to be a little loose and fluid with how we… every day is completely different. Some days I wake up without a migraine because I don’t and that’s how, you know, we have to learn how to take care of ourselves and be gentle with ourselves. And if we don’t follow the “rules” 100% not to be hard on yourself about that, that it’s okay.
Kate Schwab 19:49
Absolutely. Yeah. And that again, is like the just building safety. I think about that a lot as yeah, I’m actually going to be able to figure this out and handle this no matter what happens today. I’ve done it before I’ll be able to keep doing it, that feels so crucial and the self care as well.
Sarah Shaw 20:05
Absolutely. Well I just want to thank you for coming on the show today I’ve learned a lot and I can’t wait for listeners to hear this episode.
Kate Schwab 20:13
Thanks so much, Sarah!
Sarah Shaw 20:15
Thank you for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating write a positive review and spread the word by sharing with your friends and family. It’ll help more people like you, find us. I’m Sarah Shaw and I will see you next time.
Narrator 20:34
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this special episode of Talking Head Pain, Joe is joined by his colleague Sarah Shaw, Senior Manager of BIPOC Community Outreach at the Global Healthy Living Foundation, to discuss an exciting update for Talking Head Pain: Sarah will be joining the podcast as a co-host.
Join Joe and Sarah as they discuss the podcast’s new direction, and how they will continue to uplift the voices of the migraine community that are not always represented.
Expanding and Better Serving Our Community: A Conversation with Co-Host Sarah Shaw
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:10
Welcome to Talking Head Pain, the podcast that confronts head pain, head on. I’m here today with Sarah Shaw, who is a colleague at GHLF with me. Sarah has been featured in two previous episodes of Talking Head Pain so you’ve probably heard from her before. We’re going to talk about some exciting news and changes to Talking Head Pain. Welcome, Sarah, how are you today?
Sarah Shaw 00:32
Thank you, Joe. I’m really excited to be here. I’m migraine free today, which I will celebrate every day being on here, so really excited to chat with the listeners about what we have in store.
Joe Coe 00:45
So let’s just get to it. We have been doing Talking Head Pain at GHLF for quite some time, produced three seasons, have spoken to dozens and dozens of patients and providers about migraine-related diseases… We took some time to think about how we can better serve our community. And one of the ideas that we came up with was making it bigger than me being the singular host. So we’re really excited to announce that Sarah will be co-hosting Talking Head Pain moving forward. How do you feel about that Sarah?
Sarah Shaw 01:19
I’m super excited. It’s funny, I think, you know, I was always told in college that I had a voice for radio, so I think it’s soothing that we expand and we go out and we get to connect to more and more patients in the migraine community. And I feel really honored to, you know, to help pass the mic, theoretically, hypothetically, to more and more patients in the migraine community. So I’m really excited about this change.
Joe Coe 01:44
Definitely. And I felt that it was important for you to be elevated and have your voice heard even more because you have so much to share and your connection with patients and people that live with these chronic diseases has been so deep and profound, that I’m really excited to hear what you are going to do and who you’re going to speak with, and the types of issues you’re gonna draw that out, so that will be super, super exciting and interesting for me.
Sarah Shaw 02:10
Yeah, I’m really looking forward to it. I think in terms of like… the direction that I’m gonna go in, I feel like Joe laid like a really great blueprint for Talking Head Pain and all the guests that you’ve had, and all the people that you’ve been highlighting and giving a voice to that, that were… didn’t really have a voice, that didn’t really have the spotlight put on them. And I want to continue that legacy, if that you’ve led, and also put a little spin on it in terms of; I’m very open about my migraine journey, but I’m also very open about like my mental health as well. I’m very open about the fact that I’m a queer black person living with migraine and anxiety. I’m very open talking about therapy and what I learned this week in therapy and what my therapist maybe helped me navigate. And I think that one of the things that I really wanted to dive into is; we know that people living with migraine can have mental health issues such as depression and anxiety, and we as a society often shy away from talking about issues like that. So I want to bring that front and center because mental health issues can be a comorbidity of someone living with a chronic disease like migraine or cluster headache. And I want to talk to listeners and the guests that we have on about like what they do for self-care what they do to make themselves feel better. You know, living with a chronic disease like migraine and head pain, it can be a pretty daunting task, and I want us to feel free to have open conversations about it and share tips and tricks with the rest of the community about what you do to help navigate out of some pretty scary or dark times.
Joe Coe 03:41
I so agree with that. And really look forward to hearing how you’re going to draw that out, and the stories that you’re going to share. I know that we’ll continue to do health care provider outreach, and be at medical conferences, and talk to those folks as well, so it’ll be a really interesting marriage between these very different but also similar disciplines and experiences. And I think that will be the beauty of this relationship and this new process and evolution of Talking Head Pain. As an organization, we have to continue to stay in front of the curve and make sure that we’re serving patients in all the ways possible so I think this will be a really important and cool way that we’re doing that.
Sarah Shaw 04:26
Yeah. And I think as long as we keep passing the mic to, you know, often underserved communities that typically do not get heard; BIPOC, LGBTQ which is… you’ve been doing such a great job at making sure that those voices are heard. I hope to take up the baton and continue to share those stories.
Joe Coe 04:42
And if you want your story to be featured on Talking Head Pain, you can reach out to me or Sarah. My email is [email protected] and Sara’s is sshaw, that’s [email protected], and you can reach out to us and we all schedule a pre-interview and hopefully be able to share your story.
Sarah Shaw 05:06
Yeah, we’re looking forward to it. Hope you all continue to support us and listen to some really interesting stories.
Joe Coe 05:13
So stay tuned to listen to Sarah really crush it, talking with patients and highlighting stories that are so important to our community. And don’t worry, I’m not going anywhere. I’m going to pop in every now and then at medical conferences, talking to health care providers, researchers and others about some of the new areas that we should explore in migraine. So stay tuned.
Sarah Shaw 05:38
Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain, head on. If you like this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Sarah Shaw and I will see you next time.
Narrator 05:53
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this episode of Talking Head Pain, Joe is joined by Dr. Nina Riggins, Director of the Headache and Traumatic Brain Injury Center at UC San Diego Health, a Neurologist, and Headache Specialist. By applying her passions for education and advocacy, Dr. Riggins is very active in the headache community and has participated in Neurology on the Hill as well as Headache on the Hill.
Join Joe and Dr. Riggins as they discuss her work providing migraine education to primary care doctors as well as her education and advocacy efforts aimed at bolstering awareness so patients can reach earlier diagnosis and achieve better management of their symptoms. Dr. Riggins also shares the latest on migraine treatment options and research advancements.
Dedicated to Helping Migraine Patients Live Pain-Free: A Conversation with Dr. Nina Riggins
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Dr. Nina Riggins 00:09
“One of the things I am doing: I participate with American Headache Society to provide education directly from headache specialist to primary care, OBGYN, and truthfully, we can expand our information to any specialist who is interested.”
Joe Coe 00:29
Hello and welcome to Talking Head Pain, the podcast that confronts head pain, head on. Hi, I’m Joe Coe, Director of Education & Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m here today with an esteemed neurologist, Dr. Nina Riggins who is a board certified neurologist who specializes in headache medicine and traumatic brain injury. She also is a fellow at the American Headache Society and the American Academy of Neurology, and she is no stranger to advocacy, having participated in Neurology on the Hill and advocacy of that in DC, as well as Headache on the Hill, which also is in DC. Dr. Riggins, it’s so nice to have you today. How are you doing?
Dr. Nina Riggins 01:11
Thank you so much for having me here. Hi!
Joe Coe 01:18
Can you tell our audience about what you do as a neurologist? And what is exciting you in this field right now?
Dr. Nina Riggins 01:25
Thank you so much. That’s a great question. So I am a headache specialist, and I’m a neurologist. And right now it’s a super exciting time to be in the headache field of medicine. We have so much advances in new treatments for our patients. And I feel so happy that it also draws all these amazing new brain powers to our profession. I see unbelievable interest from students, residents, fellows, and education is one of my passions and as one is advocacy. How do we get all these new, amazing treatments accessible to our patients?
Joe Coe 02:14
In terms of students, what draws them to headache medicine?
Dr. Nina Riggins 02:17
I think they really can see that we can help now. So it’s amazing when students come and visit us for follow up appointments and they see improvement from before in disabling headache disease. It’s beautiful to experience together as they feel part of the team. And I always say students and any other learners [are] always welcome to join us. And one of the things I am doing: I participate with American Headache Society’s “First Contact”. This is a program who provides education directly from headache specialist to primary care, OBGYN, and truthfully, we can expand our information to any specialist who is interested. Like one of the most recent projects, we [are] working on vestibular migraine with ENT group. So this collaboration is always super exciting for me.
Joe Coe 03:24
That makes so much sense, and it’s so important because those are the folks that a lot of migraine patients are going to see. I was talking with some of your colleagues at Headache on the Hill recently about how the majority of us as migraine patients aren’t going to see them as headache specialists. I have a general neurologist who does a great job of managing me and that’s reality that a lot of people that live with migraine are either not needing to see a headache specialist because of the severity of their disease or because of where we live [we] don’t have access to that. So that program that you just discussed is so important because you know our nurses, our primary care physicians, our pharmacists, all of the people that we’re going to engage with need to know what a migraine is, and vestibular migraine, ENTs, so that we can diagnose them earlier so people aren’t living with like all of these questions.
Dr. Nina Riggins 04:18
Yes, that’s so true, and many times during my day in the clinic when I see new patients – new to me – but who had for example, chronic migraine for years, it will almost break my heart when I hear [an] adult person saying “In my childhood I thought everyone has pain every day”. And it was amazing to me to see that Headache on the Hill this year did address pediatrics [on] kids issues with migraine, and actually one of the issues was [a] letter, proposing [a] letter to the Department of Education to support our kids when they need extra resources in school to be successful in the long run, because migraine is not just a headache, it’s a whole disorder of brain networks. And it could be cognitive, it could be symptoms like nausea or dizziness, and [if the … system] can get in involved. And we do need clarified that those kids needs to support and they will succeed. This all will help.
Joe Coe 05:33
That’s so important.
Dr. Nina Riggins 05:36
I see adults and actually always great since my fellowship at UCSF, our director, now pediatric neurologist, Dr. Gelfand, when I came to Miles for Migraine teen camp, she was so welcoming, and she said “Those kids will graduate into adult clinics”, and they will be people who I will see. And that’s how I look at that. And I actually just recently submitted my project to one of AAN’s leadership programs and fingers crossed about transition of kids to adults in headache medicine. So I know a lot of work has already been done by multiple bright minds but for us here in San Diego, I have specific ideas [on] how to streamline that.
Joe Coe 06:32
That’s amazing. And I was one of those people that thought a headache was normal that everyone had it and they weren’t bad. They weren’t like debilitating headaches most days, but I just was like “You don’t get a headache?” When you realize that, as an adult, that people live without ever having a headache, really surprised me. And I think the work that you’re doing is so important to raise the awareness on all levels. What do you think some of the big challenges are that your patients face in terms of advocacy and access?
Dr. Nina Riggins 07:06
Yeah, that brings me to our next event which I will be flying [to] at the end of this week. It happens in DC, American Academy of Neurology’s “Neurology on the Hill”, and I’m extremely honored to be Captain of our California team; we have an amazing team. And we have very important issues to help our patients. So we’re always advocating for access. So for example, in my own headache clinic, in the center, I do have wonderful devices to show neuromodulation, they’re cleared by FDA, we have five FDA cleared devices for treatment of migraine. Some of them can be applicable for people with cluster, and persons with hemicrania, it’s [an] extremely tough headache and disabling and we do have devices which I would recommend, but access could be a barrier. And so we’re always advocating together for access to our passions. And this time, during Neurology on the Hill again we’ll be talking about addressing those barriers, including things like reimbursements, including things like how do we make care available to our veterans, these neurology centers of excellence. And I really love research. So in front of my eyes, here they feel bloomed. So we went from almost very few medications to offer or tending [to] someone or discussing with someone to surgery where neuromodulation device had to be implanted with neurosurgery and then person would have [leads here] and battery there. And it was whole process, [a] few hours, of trying to [titrate to ride] stimulation in the clinic up and down of those devices. Now I’m telling my patients, “You know, we can try if you didn’t like it for any reason, or was not effective. We will go to next one. We put it in the box and sent it back.” So this is so much better.
Joe Coe 09:38
That’s amazing. And where do you think the biggest unmet need for research is?
Dr. Nina Riggins 09:42
Definitely identifying biomarkers. It would be amazing. When I see a person to say, “Oh, because you have these biomarkers, I think this medication would be the best for you.” So precision medicine, individualized plan as opposed to “Well, we have to start with this medication, we give it good trial. And then we move to the next one.” And so biomarkers research and to make it individual, make it straight out what would work for this particular person is in the future. I think different specialties do already do and progress in this direction. I see that medications for mood, our colleagues in psychiatry, they can check genetics and already predict to some extent. It’s still not perfect at all, to some extent, “Okay, this medication maybe makes more sense for this person to start with.” So that’s… I’m super excited about new treatments and identifying which treatment will work for this particular person leaving with migraine or who has a headache disorder.
Joe Coe 11:02
So our organization actually has a podcast called “Let’s Get Personal.” It’s about precision medication and medicine mostly in the autoimmune space because there’s been a lot of research and development there. So we have an audio guide, “Understanding Precision, Personalized Medicine for Rheumatoid Arthritis” and like how the present and future care of that. So I love that you’re talking about this topic for migraine because, internally, I talk to my colleagues, I’m like, “Why can’t we have this for migraine?” And I feel like we’re moving in that direction. The more that I go to medical conferences, the more I’m hearing people like yourself, say “We need to find a biomarker,” and what that means for a patient is that “We can then help you find a treatment that might work better so you don’t have to go through all of these in an ideal world step therapy edits and different fail first protocols” and hopefully insurance will get on board and not make it rough once we do find out what might work better for us. Really interesting stuff.
Dr. Nina Riggins 12:02
That’s amazing and thank you for this work you’re doing and that’s, that’s so great. I do believe that addressing things like rheumatoid arthritis and any other possible cause for inflammation or cause for secondary headache – [is] very important. So [an] example would be nowadays we have one and five people who have long-COVID. They would have headache as one of the symptoms and this headache would be so resistant and we need to learn more [about] how to treat it. And so one of the issues from Headache on the Hill, the February 14th event this year, was asking to help us to do more research for long-COVID and specifically in [the] headache medicine area.
Joe Coe 12:57
Just a clarity for our audience: you talked about the autonomic system and disorders related to migraine. Can you explain what that is and what the connection is?
Dr. Nina Riggins 13:07
So because migraine is network disorder of brain symptoms and we all know that one of the symptoms for example of cluster person even on the draw and if you just type “cluster headache picture,” it will usually show someone maybe a little bit of redness-like flash and it will show this like fire around eyes. It will show that eye may be a little bit more closed on one side; we call it Ptosis, so eyelid can little bit droop. Some people, they can have these multiple headache disorders, migraine and cluster, even hoarse voice during attacks and it’s because this autonomic neurosystem, it’s a little bit shift of water in our body and [the] vocal cords can get a little bit more full of water and some people say like “Oh now I know why I have hoarse voice during a migraine attack.” And so we use it for our treatments. So example would be … and ganglion blocks. And we have those ganglions on the both sides of basically our nose, which in the past we’d have to go with needle either from from the area of the mouth or from outside and it was pretty extensive procedure with radiology or [it] was interventional, … and now we have devices and those devices help us just make it application. It’s almost like nasal spray, but it has this excellent efficacy for some people. And I love to offer this as a result of research. A result of the calculated angle: how to get to the thin part basically in the nose for medication to diffuse without needles. So it can be very effective for some people. And I love when we can offer something without pain of needle stick but effective potentially, so we keep bringing it up for different conferences. It’s really nice thing for during some periods in women’s journey in migraine; we definitely use a lot of safer for baby medications during this period of time. And ropivacaine in nasal spray, or some nerve block with that medication can be pretty much safer as many other things which we can use during preparation to pregnancy, pregnancy, breastfeeding and so I do have special interests, and I’m thrilled when I see, during telemedicine, all these happy babies on the screen or some people come in with them. It’s like a wonderful experience. We do have PowerPoint which anyone can invite speaker from American Headache Society. It’s, it’s like inviting … or just review online. It’s women’s journey covering different treatments in different periods of time for women, [starting with girls going to old age] and how to address it.
Joe Coe 16:46
Well I learned so much in this 15-20 minutes that we spoke. Really appreciate your knowledge and also your passion. As I was listening to talk, I’m like your patients are so lucky that they have someone that cares and that is staying on top of the research and that is thinking outside the box to make us feel better. So really appreciate all that you do and your advocacy and the work that you do to advance the mission of headache specialists.
Dr. Nina Riggins 17:14
Thank you. Thank you so much.
Joe Coe 17:16
Well, thank you so much and go get them.
Joe Coe 17:20
Thank you so much for listening to this episode of Talking Head Pain, the podcast to confront head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.
Narrator 17:36
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
This week on Talking Head Pain, Joe is joined by Susan McManus, a migraine patient and advocate who was diagnosed 20 years ago. Describing herself as a “highly functioning migraineur” when her kids were still at school, Susan’s life was turned upside down after her condition became chronic.
Join Joe and Susan as they discuss how she navigated the shift to chronic migraine, her advocacy journey, her involvement with Headache on the Hill, and what she’s learned in trying to remain active while surrounding herself with a great team of doctors.
Not Thinking About Migraine 24/7: A Conversation with Susan McManus
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Susan McManus 00:06
“I think it’s really important for people to be their own advocates. And when this all first started for me, there was not a headache specialist in the Atlanta area, but I found a neurologist who I call a ‘team doctor’. She listens to me, I can bring her things and we talk it through.”
Joe Coe 00:29
Hello, and welcome to Talking Head Pain, the podcast that confronts head pain, head on. Hi, I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m here with Susan McManus, who is a migraine advocate that I connected with at Headache on the Hill. Susan has been attending the Alliance for Headache Disorders Advocacy’s Headache on the Hill since 2020, both in person and virtually. But it was a good opportunity to connect with Susan and learn why she became an advocate and the important work that she does. Hi, Susan, how are you today?
Susan McManus 01:05
Good, how are you doing?
Joe Coe 01:06
I’m doing great. I’m really looking forward to this discussion.
Susan McManus 01:09
Thank you for having me!
Joe Coe 01:13
So let’s start with talking about migraine and what your worst migraine attack is like. Can you explain it to our audience very quickly?
Susan McManus 01:22
I think what most people do not understand is that it’s not just a headache, it’s a full body experience. So there may be a migraine I have where the head pain isn’t, you know, too bad, but the fatigue is just overwhelming. And so I’m not going to get out of the chair. And I think also people don’t understand the difference between fatigue and being tired. And I tell people being tired is being tired. Having fatigue is, “I am melted into my chair. My chair has consumed me.” So that can sometimes be my worst.
Joe Coe 01:55
I’ve heard people talk about fatigue, feeling like you’re walking through jello, or that there’s a force pulling you down when you’re trying to just function. So yeah, there is a big difference between being tired and having fatigue.
Susan McManus 02:10
Yeah, that’s a good analogy as well.
Joe Coe 02:12
You have had migraine for how long Susan?
Susan McManus 02:15
I was diagnosed a little over 20 years ago. I do think that teenage Susan had it, as well as my dad, and we would just say: “We had a killer sinus headache”. And we had just recently moved to Georgia so I think that it was also our bodies adapting to the different pollens and things like that. But I don’t know for sure. I wish I could go back. I was probably having menstrual migraines. And now that I look back on it… So I officially got diagnosed a little over 20 years ago. And then I could call myself a “very highly functioning migraineur”. Because I had kids in school, I was on PTA boards, booster clubs, very involved. I substituted. You know, if I had one coming on I would take my medicine, two hours later, I’d feel fine, go about my day. And then a little over a dozen years ago, I turned chronic and that’s when life kind of halted.
Joe Coe 03:03
And did your family understand that shift from episodic to chronic?
Susan McManus 03:07
That’s interesting. So when it happened, my oldest daughter was away at college, and my youngest one was in high school. So I’m so grateful I didn’t have small children while I was dealing with the beginnings of the chronic part. So we’ll say that my daughter being away at college didn’t get it as much because she just didn’t see it. She wasn’t here. Whereas my husband and my younger daughter were still living here. But my husband, he’s the one that can really tell. Like if I go on a… like a girls trip, let’s say and I’ll send him pictures. He’ll text me. He’s like: “You have a migraine?”. “Yeah, how did you know?”. He goes: “I can tell in your eyes”. That’s a spousal thing. He has been my rock and I do have a very, very strong family support system.
Joe Coe 03:51
And then you got involved in advocacy. How did you find out about Headache on the Hill and what brought you to lending your voice in that way?
Susan McManus 04:00
So it actually goes back a little bit further. I think it was around 2016. I started volunteering with the Migraine World Summit, which led to then also volunteering with migraineagain.com. And I did that for a few years. And then it dawned on me. One thing I kept telling myself is I don’t want to think about migraine 24/7. Well, when you’re doing a volunteer job that is all about migraine, that’s all you’re doing. And I thought I had to pull myself back from that because it was just a little bit much. But that’s how I then found out about Headache on the Hill. And my first Headache on the Hill in 2020 was in person. And I got to meet a lot of the people that I worked with on the World Summit who are from all over the world, but the ones that lived in other places in the country… My roommate was from California, so we had known each other for a couple of years but had never actually met, and that was a lot of fun. We had a dinner one night… I miss those connections, although I’ve stayed in touch with a number of those people. It just was better for me to not think about it every day. So Headache on the Hill is great, in that it’s just once a year. You know, we put in, you know, our training, so the whole thing is only a couple of weeks. It’s not a huge time commitment, but it keeps my hand in the advocate pot, so to speak, and makes me feel like I’m still doing something good. I now also do Miles for Migraine, which is also a part of Headache on the Hill, they sponsor each other.
Joe Coe 05:28
That’s amazing, and small plug for Migraine World Summit. This year I’m one of the speakers!
Susan McManus 05:35
Oh, congrats. It starts next week?
Joe Coe 05:37
It does. Well, it might not be next week for the viewers or the listeners, but you can find it at ‘migraineworldsummit.com’ I believe. A really, really interesting program, and Carl and Paula are good friends and have been amazing advocates in this work. So I’m not surprised that you’ve connected with some good folks through your journeys. There was something that you spoke about, which I thought was really interesting, and we don’t hear it a lot from advocates. You talked about how you don’t want to think about migraine or your chronic disease 24/7. And I think that’s a really interesting perspective to share. Can you talk about why you don’t want to think about your disease all the time?
Susan McManus 06:22
I actually have done a few therapy sessions. And one thing the therapist had me do, because I just felt like I was having migraines, you know, day after day after day. And she said, you know: Each day just journal. Like, you don’t have to go in… I’m not a writer, like don’t go into writing all about it, but just sort of take note of: “Well, the morning was good. And I was good at lunch. But around 2pm I got hit with a migraine. So the late afternoon, early evening, they weren’t so great.” And that helped me realize that even though like we have to call that a migraine day for medical purposes, my entire day was not actually a migraine. I had some good hours. And so that kind of started the thought process of: Yeah, I don’t want to think… I don’t do the journaling anymore because it’s just… I know now, you know, I’m not in a migraine all 24 hours of the day. Sometimes I am, but sometimes I’m not. And so I don’t usually do New Year’s resolutions, but this year, I decided: I need to get out of the house more. I am a very outgoing person, I play tennis. We have a pretty big tennis league here in Atlanta that’s getting ready to start back up. So that’ll help get me out of the house. But I miss people. And so I thought, I’m going to try something this year, and I’m just going to pretend I don’t have migraine, and I’m going to try to get out of the house and do something every day.
Joe Coe 07:39
And how has that been going? Have you done anything very different that you might not have done?
Susan McManus 07:44
I got done a little shopping where I would have normally have done that online. But then yesterday, I had decided, oh, let’s do this, this and this, and I actually was supposed to go to tennis practice around 9:30 and it was a pretty day, and I was excited about that. But I woke up at about 5:30 and I was in so much pain, texted a couple of my girlfriends and said: “I don’t think I’m going to be there.” So you know, I’m trying to put a positive spin on it and do what I can. So I can’t really tell you right now. It’s still early in the process.
Joe Coe 08:16
And I think that’s important that we look to live the life that we want to live, but also know that it’s okay if we can’t, and that’s not failing, but we’re working toward engaging in the world in the manner in which we want to. So I think it’s interesting, I don’t think we talk enough about that concept in patient advocacy. And it’s hard if you are you know, chronic or if you have symptoms 24/7, or if you are like high disease burden to say I’m going to not think about it, because how can you not, but there are many of us that can not dwell on some of the negatives and what might that look like? And how might that feel? I think those are really interesting questions to ask ourselves. How does that contribute to our ability to continue to advocate so we don’t engage in or have a burnout?
Susan McManus 09:07
Yeah, I personally was having an issue with what is my purpose sort of. I was a stay at home mom, which I love that I was, like I said very involved with school and my two girls who played every sport there is, and substituting, so we were always on the go. And then when my youngest went to college, an opportunity came up to work for my brother part time but out of my home. And I really enjoyed that because I was like what am I going to do now? You know, I don’t have any more school volunteering in this. That was my job. So I worked for him part time for about four years until I just got to the point where I was working in 15 minute increments, like in my pajamas, and I was barely getting by and I just I just couldn’t do it anymore. I think I would probably qualify for disability but that’s not something I pursued but I cannot hold down a regular job, which I would like to have something to do do part time. But then tennis… like I said, tennis is coming up and then I don’t want a job interfering to get outside and play my tennis.
Joe Coe 10:07
I wouldn’t either! Let the people play tennis. So is there anything that I didn’t ask that you would want to share?
Susan McManus 10:13
I just think it’s really important for people to be their own advocates. And when this all first started for me, there was not a headache specialist in the Atlanta area, but I found a neurologist who I call a ‘team doctor’. She listens to me. I can bring her things and we talk it through. I was her first patient to try you know, all the different CGRPs that have come out over the years, the injectables, the pills, whatever. And she was so excited. Then I also have, I don’t think it’s very common… I have an ENT who also has a dental degree, and he has really helped in finding what I like to call my puzzle pieces. So along the way I got diagnosed with sleep apnea, I needed to have neck surgery like… and so we find these things that have made my life better. But him being both an ENT and having that dental knowledge I went to him because I thought I had a sinus infection, and he said, I hate to tell you this, but you’re having a cluster headache looks like… You gotta be kidding me! I’m already chronic now you’re gonna put cluster. Well ended up it was a bad tooth. I was a tooth on the bottom but the pain was up below my eye, because you never know where the nerves are going to shoot the pain. And he’s the one that found that, my ENT. So the two of them, and they know each other, and they communicate with each other, they… Like I said, I’ve created a team of doctors, and they listened to me, and will try things or say: “Yeah, we’re not doing that.” you know, if I bring them something a little bit out of the ordinary. So that’s so important because I think a lot of doctors don’t listen to the patient. And that’s exhausting being your own advocate.
Joe Coe 11:53
Well, thank you. You’ve shared some really insightful pieces of information that I know the folks that listen to this podcast and read our transcripts will find to be valuable. I appreciate your energy Susan and all that you do to make people feel better. So thank you.
Susan McManus 12:12
Thank you.
Joe Coe 12:14
Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain, head on. If you like this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe and I will see you next time.
Narrator 12:29
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
On today’s episode of Talking Head Pain, Joe is joined by chronic migraine and long COVID patient Marnie Russ, Program Administrator for the National Kitten College Program (NKCP). Through her work at the Kitten program and speaking at migraine events like Headache on the Hill, Marnie has had a positive impact on both humans and our feline friends.
Join Joe and Marnie as they discuss caring for kittens, how migraine impacts relationships, and how COVID can change one’s headache.
Advocating for Yourself and Your Feline Friends: A Conversation with Marnie Russ
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Marnie Russ 00:09
I have had chronic migraine for 25 years, I’ve had migraine for 30 years, so it has been a long road to get to where I am now.
Joe Coe 00:17
Hello and welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m here with a really special guest, Marnie Russ. She’s a chronic migraine and long COVID patient and more interestingly, the National Kitten College Program Administrator. I had the privilege of hearing Marnie speak at a Headache and Migraine Policy Forum briefing on Capitol Hill about long COVID and headache. So it’s really, really a pleasure to have you on the show today, Marnie, and I look forward to our conversation.
Marnie Russ 00:54
Thank you so much for having me. I’m looking forward to talk about myself for a little while.
Joe Coe 00:59
Let’s jump in. What is the National Kitten College Program? And what do you do there?
01:04
I work at the Animal Welfare League of Arlington in Arlington, Virginia, not far from the Pentagon. We are a high functioning animal shelter that about five years ago started a program. I work with kittens and have historically done a lot of neonatal kitten care. And I knew that our community did really well with handling the kittens in our community. But outside of our borders, kittens were being euthanized every night at 9:30. And shelters have to do that it sounds harsh, but if you get a kitten in that needs, you know, constant attention overnight, you don’t have the resources, the kindest thing to do is to euthanize them. But in my mind, the next kind of thing was to create a program where they had a safe place to go if they fell into that category. So we absolutely started off bare bones. We went from saving 92 kittens a year here in Arlington last year, I think we did over 1,550. So we definitely were addressing the need. And that program exploded so quickly. And so with such force, we decided it might be something that other shelters could try and see if it works in their facilities. A lot of people don’t know but shelters are often given funding based on their live release rates. So if your live release rate is high, you are usually prioritized to get either competitive grants or or county funding or however you get your main stream of fiscal security for the year. People also don’t know that neonatal kittens are the most euthanized animals in shelters. So if a shelter was looking to increase their live release rate, they really have to pay attention to what they do with the neonatal kittens that come in. So it just it came at a good time. People obviously don’t want to euthanize kittens. So having a program was really helpful to the community and to the trappers and to everybody who helps kittens. And it’s just, it’s spiraled. So we started there. Now we go all over the country and teach shelters you know how to save them how to triage them how to create a program on a shoestring budget.
Joe Coe 02:53
When you secure by the Pentagon, I had this vision of like Department of Defense kittens?
03:01
Well, don’t think we haven’t named them after famous Generals, or we have to come up with a lot of creative names for kittens after over 1500.
Joe Coe 03:10
That’s amazing. So it seems like advocacy has been in your heart and soul.
03:15
Yes, absolutely. Prior to this, I was a lobbyist, I started out lobbying for international aerospace at a very young age. And that was amazing because I got to go all over the world. And coming from Montana, where I’m originally from, it was a wonderful opportunity. But I really wanted to get back to Montana. So I created my own little firm, I guess in 2004. So quite a while ago, 19 years ago, where I just focused on Montana nonprofits and getting money back to nonprofits in Montana. And that was amazing. And then as the government slowly screeched to a halt and weren’t passing a lot of bills didn’t make sense for me to continue to work for people that that don’t have any return on their investment. So I switched to kittens.
Joe Coe 03:57
Then I met you through the Headache and Migraine Policy Forum talking about chronic migraine and lung COVID Headache. What brought you to speak there?
Marnie Russ 04:06
One of my very best friends is the ED of that program. And you know, she and I in our 20s lived together and she knew that I had migraine because she would see me down for you know, a day or two at a time and how sick I would get so she knew I had it. She didn’t realize that I had gotten COVID. I got it in December. So I was a I was a holdout. I honestly felt like I was invincible, but I got it in December and it changed my headaches. So we were just talking about it through our friendship and how you know how we do and she was like, “Would you be interested in doing this? We need somebody to do this and you’re a perfect fit.” And I always would support her when she was doing her Headache on the Hill and stuff. I would take folks to the Montana offices and help with that, but I never really thought about getting involved at the level that I was last week and I really got a lot out of it. You know, like I really I thank her for that. opportunity because I learned quite a bit. And I learned that in a lot of ways, I’m different from migraine sufferers. And a lot of ways I’m similar in which I didn’t realize and I’ve never been in a room where I would be talking about the changes I had to make in my life and all the nodding heads. You know, that was really a first for me, and it felt really good.
Joe Coe 05:19
Who is your friend? Let the people now.
Marnie Russ 05:21
Oh, Lindsey
Joe Coe 05:23
We Love her.
Marnie Russ 05:24
Everybody loves Lindsay, because she’s fantastic. Yes.
Joe Coe 05:28
So part of your story as I was listening and taking notes, and I shared some of those notes with you. I was really touch the your relationship changed. When you develop chronic migraine? Can you share with our audience how your romantic relationships changed when you became chronically ill?
Marnie Russ 05:46
Yeah, so actually, it you know, normally, I don’t tell people initially that I have chronic migraine, and it’s not for, you know, to feel sorry for myself, but I just don’t want to be judged as high maintenance, I don’t want people to think I can’t do things, because I’ve really developed tools to make anything almost possible. It’s just that I have to do it in maybe a different way than other people. Several years ago, I got engaged to somebody who, you know, was not familiar with it. And and, you know, I would be fine. And I would people would not know, and he was no different. I didn’t mention it. But he, you know, I had, I had two weeks of stress that really knocked me down. And he at one point just said, “I didn’t sign up for chronic migraine,” which, you know, nobody signs up for it. I didn’t sign up for it. So you know, I mean, it was a tough lesson to learn. But in the end, if there’s not compassionate at that point, there’s not going to be compassionate other points. And so it turned out to be something that helped me realize what I deserve and what I want. And, and you know, what I need because I if even if I wanted to, and I wanted to my whole life, get rid of my chronic migraine, you know, I can’t. And I can make it work. And I can go through long periods where it’s just day to day management. But emotional stress is a big trigger for me. You know, I’m 49 years old, but I have to be completely alone or with my mother, those are my two choices of care when I get to a point that I can’t autocorrect myself. And, you know, I mean, there are probably people that would love me conditionally and say, you know, this is too much, because I’m not available during that time. And if I’ve previously been available can be a tough pill to swallow.
Joe Coe 07:30
I definitely think a lot of people can relate to that. For a time in my life, I thought I might run for office. And I felt like I was so public about having chronic migraine, or even high episodic migraine that people would be like, can he do that? Is he going to be present?
Marnie Russ 07:49
Yeah, I mean, I would say, you know, now that I’m talking about it, more people know, and I’m posting on my social media just to get awareness. But even my, my closest friends know, my friends who have seen it, because I have other things like, I have a super sensitivity to motion sickness. And I don’t know if that’s tied, in my opinion, I feel like it must be because it’s been my whole life. Even when I was a baby. I’m just super sensitive to it. So I always have to drive. And you know, a lot of people like that I always drive and some people are like, “Can somebody else drive?” I feel like getting the word out there is kind of doing the opposite. Like people understand me more. Mostly, I’ve proven myself. But it’s taken me a long time to get to that point, and never would have told people especially if I’m just starting a job, maybe that is information they need to know, my work performance would never suggest that I’m not anything but fully there. So I usually tell people after I’ve had the ability to prove myself.
Joe Coe 08:43
And that ties in to a phrase that you use that I really liked and resonated with me. You talked about the concept of not having the luxury to fail. What does that mean to you as a professional as someone who is developing this career in lobbying, and now in the nonprofit sector saving kittens? What is the luxury not to fail mean?
Marnie Russ 09:02
Well, it basically means that I have to put something together that fits my lifestyle. And I have not really been employed by anybody other than myself or somebody who gives me almost complete anonymity, since I was working at Cassidy and Associates with Lindsey at our lobbying firm and that was we left there in ’02, I think so it’s been a long time. I can’t do a nine to six when I wake up, I’ll wake up probably three times a week with a migraine and most migraine sufferers know that if you wake up with a migraine, that’s usually too far gone. You know, it’s so much harder to address. So I will get in enough sleep because sleep is also a trigger. And then if I wake up or I have to, like take an hour to get it under control, so I can manage so I can drive so I can function. So that for me is I have to create these jobs that fit me and my migraine, and then I have to do them so well, that they become so important that I can’t, that they won’t go away. Because I, you know, I’m a very independent self supporting woman that I like nice things. So I want to be able to, to support myself. And so at a certain level, and I, in order to do that I have to be, you know, a necessity for the people I work with him for.
Joe Coe 10:18
Then you took all of COVID in December of last year. How did it change your health?
Marnie Russ 10:23
You know, it was really interesting, because like I said, I hadn’t had COVID. And I honestly thought that I was completely immune to it, because I’d been around so many people, and then whatever that strain was got me and I was down for two weeks. And, you know, I wasn’t totally sick, like to go to the hospital, but I was sicker than I usually am. And usually, any type of illness will give me a migraine and I didn’t get a migraine with this. I had a low grade headache in one part, the back part of my head. And, you know, I wouldn’t, it wasn’t enough, I would take a migraine pill, and that might help a little, but then I would take ibuprofen, and it would go away. And I was thinking that’s so strange, because in the past, people have said to me that if you have a migraine, you need to take your migraine pill and treat every headache as if it is a migraine because you don’t get regular headaches, your body only gets migraines. And of course, early on, I would hoard my medicine because I’d be like, I’ll just take ibuprofen, see if I can get rid of it. And then and then if I get rid of it, I save one of the pills that I would have taken. So that had been my mantra until I reached out to this one neurologist at one point that I had that said, you need to take a migraine pill immediately because you are always getting migraines. So that was great advice. But then long COVID totally changed that protocol in my life. You know, because the migraine pills weren’t really doing anything, and ibuprofen would just get rid of it. It’s hard to go around with a low grade headache all the time. Because I’m used to going around with you know, a migraine for the night, get rid of it. That for me was an interesting way to be like how many I would have to take acetaminophen three to four times a day to manage this low grade migraine. And even if I hadn’t taken it, it would have been a low grade migraine, I could have done stuff. I do lose my words a lot more and for being a public speaker. That’s not ideal. So yeah, and my number of migraines has gone down significantly, which would seem wonderful. But my migraine and I have a relationship. We’re copacetic, we know how each other works. And I don’t understand what this one means. So I’m learning as I go.
Joe Coe 12:27
Sounds that way. And we’re all learning the impact of long COVID and COVID and headache. For me, it was interesting, a lot of people that I know that got the vaccine would develop a headache, and I didn’t. And I was shocked because like you I was like I’m gonna get a headache or a migraine from this and I didn’t, which was interesting.
Marnie Russ 12:48
With the vaccines, I always got a migraine. I just Yeah, which was fine, because I would just take my pill right after I got it before the migraine came on. And after the first one. I learned that one. But yeah, that is I mean, it’s just it’s so funny that we all can have the same thing. And our triggers are so different. Our responses are so different. What works for one doesn’t work for the other. It’s more so differently in people. And that’s sort of one of the things I was taking to heart when we’re having those conversations leading up to the seminar last week. And then during the panel.
Joe Coe 13:19
During the briefing that you participated in, you talked about the difference in how your headache is now vers it was before COVID, and some of the fear that you have an uncertainty, can you explain to the audience what that fear and uncertainty is?
Marnie Russ 13:37
Yeah, the biggest thing about it is just not knowing. I did not anticipate that I would have a change in my headaches at this point in my life at 49. And I have had chronic migraine for 25 years, I’ve had migraine for 30. So it has been a long road to get to where I am now. And so I understand, like, I know that if I am super stressed at work for something that I can’t handle, I’m gonna get a migraine. I don’t understand this because it’s usually always there. And it’s changing what my migraine looks like to me. And I don’t know what it’s going to be like, you know, if, if this long COVID for me is just a temporary stretch, then when my migraine comes back, am I going to have to relearn my life, you know, it’s that much of a partner in your life. I cannot if my migraine says I can’t do something, I can’t do something. And I’ve been so lucky to have amazing people in my life. I you know, I thought about that during our conversation. And ironically, one thing that I didn’t realize until last week, was that the tendency for people who suffer from this to also have depression and anxiety and of course that makes sense. Of course it does. I’ve never thought of it. It’s not my experience, you know, maybe should have been I’ve been so fortunate. You know, my mom, if I have you know, she just knows that I’ll be like she doesn’t hear it from me like it so certain time or something she’s like, “Do you have a migraine,” you know, and, you know, I have some friends that are like that get it. And, you know, you know, if you know my future, those are the people I have to surround myself with. And it can’t be, you know, you cancel our plans. And, you know, this, you know, it’s, you know, I never want to cancel plans. I’m a super social person. And, you know, I got a lot of sympathy for the folks that struggled. Your your migraines are bad enough, but then to have anxiety and depression on top of that, it’s crippling, and I am very lucky that I haven’t had that. And I don’t know, you know, what if what if this change in headache brings across things like that, that I that I could change my life for again?
Joe Coe 15:40
Sounds like you will confront it head on like this podcast. I wanted to let the audience also know that one of your panelists, Dr. Robbins, was on a previous episode of Talking Head Pain talking about some of the research and data around headache and COVID and some of the connectedness so folks go back and look, there’s a quick interview with Dr. Robbins, it’s about 5 or 10 minutes, we were at one of the American Headache Society meetings. So I was glad that he was on the panel with you because he’s a super bright guy who shared some really, really good information. Is there anything that I didn’t ask that you would want to cover today?
Marnie Russ 16:21
One thing that I got feedback on after that panel was just how people found it interesting. And I didn’t find that I didn’t find it super interesting, because it’s been my life. But my migraine has made it so that I handle and react to things differently than most people. And it is mostly because I know what to trigger. And since emotional instability is for me a trigger for migraine, I have to look at something that other people might get upset about. And if I can’t fix it, I can’t put my thoughts and energy into it. Because it’s a risk. So we I used at the panel, I use the idea of a of an election, like often elections, don’t go your way. And people get really upset, and understandably so it can be scary, but I can’t do anything about it. And I have to move on, I have to do everything I can up to that and feel good about what I did. But when bad things happen, I think I move on faster than others. And it may come across as maybe callous or uncaring. But for me, it’s a coping mechanism. And it is something that I’ve honed to the point where I see something I have to either realize in that instant, is this something that is worth the stress or not, can I impact it? Because obviously everything is worth the stress if you’re passionate about it. But can I or can I not impact it? And that probably is credited to my job. You know, I have the neonatal kittens have a 40% mortality rate. So we lose a lot of them, but they’re better off for having us available to them. And their stories were written and we can save some we can’t save them all, but we can try. So I think because I’m able to compartmentalize these things, I’m able to have a job like I do. And that is something that I guess migraine did for me, How long did it take you to get to that point of being able to say, “This is going to make me not well, I can’t process it this way?” You know, I think it was over time. I think I probably started doing it in my 30s but my 30s or when my migraines really started to ramp up. So as they got worse and I autocorrected it was something that I did without knowing. I didn’t realize I was doing it. I would have people say like my twin brother, he was fostering a kitten, kitten passed away. I came to help him and to take care of the kitten and everything and he’s almost in tears in the bathroom. And I’m just you know, taking the kitten and you know, doing what I need to do. And he just looked at me and he goes, “You have a cold dead heart.” Which, you know, we’re twins we have the complete same upbringing. We, you would think, would handle things very similarly. But, you know, I can’t be upset when they die because or else I couldn’t do my job. And, you know, he it was something that he did that one time and will never do again probably because of what happened. But him for him. He was you know, he just didn’t understand how I wasn’t crying. I wasn’t. You know, of course I didn’t want it to happen. But that kitten was gone. There was nothing I could do. So probably in my 30s about 10 years after I started getting my migraines did I really have to realize how my reactions impacted my health.
Joe Coe 19:30
Sure there’s a whole other podcast about twins and the one with the cold heart and the one with the warm heart and what you did to him growing up to make him think you have a cold. We want the twin side.
Marnie Russ 19:45
Yes. Well you don’t trust me. He would probably be mad that I told him that he got so upset. But yeah,
Joe Coe 19:52
Well thank you so much for A, the work that you do with kittens. I am a big cat person and Jasper stayed sleeping upstairs normally comes on to say hi.
Marnie Russ 20:07
You saw Skeeter came.
Joe Coe 20:09
I did. Jasper’s chilling upstairs. I heard some noise up there. So him and his sister are probably fighting but he’s up there and that’s really important work and then your advocacy that you’re doing with migraine, headache, and COVID super important so thank you for your energy. Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe this you never miss another one. I’m Joe Coe and I will see you next time.
Narrator 20:42
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
On this week’s episode of Talking Head Pain, Joe is joined by Wayne Anderson, DO, FAHS, FAAN, a neurologist in San Francisco, CA. In addition to being a provider, Dr. Anderson is on the Board of Directors of the American Academy of Neurology and takes part in advocacy events like Neurology on the Hill, so that he can be a part of a chorus of healthcare providers trying to improve the lives of those living with neurological disorders.
Join Joe and Dr. Anderson as they discuss Neurology on the Hill, the challenges facing providers, and how providers can become advocates.
Advocating for Patients in the Exam Room and in Congress: A Conversation with Dr. Wayne Anderson
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Dr. Wayne Anderson 00:10
We might think of being in a medical clinic or a hospital, ICU, operating room. But you know what if we’re going to fight for medicine and fight for our patients that includes Congress.
Joe Coe 00:22
Hello, and welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m joined today with Dr. Wayne Anderson. He’s a neurologist with subspecialty certification in headache and pain medicine. We’re going to talk about advocacy, his life passion in neurology, and what the patient community needs to know about the good work that physicians are doing on behalf of us to increase our access to treatments and procedures that help migraine patients feel better. How are you today, Dr. Anderson?
Dr. Wayne Anderson 01:02
I’m doing fine. Thank you.
Joe Coe 01:04
So let’s just jump right in. I noticed that in your bio, and in speaking with you before the interview that you are very involved with Neurology on the Hill, and many of us in the headache community are familiar with Headache on the Hill. What is Neurology on the Hill, and how does it complement something like Headache on the Hill?
Dr. Wayne Anderson 01:22
Neurology on the Hill is very similar to Headache on the Hill, but it looks more at other neurologic topics and not just one particular disease entity. In fact, Neurology on the Hill was a model for the eventual development of Headache on the Hill. Neurology on the Hill is when a group of neurologists go to Capitol Hill and visit with our legislators and try to provide information that we think will be helpful for the field of neurology, primarily for patients.
Joe Coe 01:50
And what’s the issues that Neurology on the Hill has advocated for in the past?
Dr. Wayne Anderson 01:55
There are several issues and they tend to change each year. It depends on what is going on in the community. For example, one of the major issues recently has been step edits or prior authorization processes. And sometimes we find that there might be a treatment that we would feel is appropriate for a patient. But that treatment needs to be used only after other treatments might fail. We understand that there is a cost issue and that there are maybe older treatments and maybe less costly treatments that reasonably can be tried first, but what we would like to do is we would like to be able to maybe have fewer steps. We can try one treatment. And maybe if that treatment is not acceptable for a patient because of side effects or contraindications, we then can go to the treatment that we feel would be the most appropriate. So it is a sort of a work in progress trying to reduce our step edits and obtain the best treatments for our patients. But within the scope of what we are able to do, recognizing that it is a very complex situation.
Joe Coe 02:56
For those that aren’t familiar, we all probably have experienced what Dr. Anderson is talking about. It’s called Step Therapy and/or Fail First Hurts, where you’re forced to fail on a treatment before the one that your prescriber wants you to be on can be covered by insurance. What do you think Dr. Anderson that does the patients in terms of their treatment journey?
Dr. Wayne Anderson 03:18
So it is a problem for patients. And it does bother the neurologists who are treating these patients because it has a bit of a setup potentially for failure. If a person were to try three or four or five treatments in a row, and we had the sneaky suspicion that they weren’t going to work, we understand that there may be a treatment coming up that might be of benefit. But it is certainly disheartening to the patient, because by the time they’ve gone through one or two or more treatments that didn’t work, their expectation and hope for successful treatment is diminishing with subsequent trials. That’s one of the reasons that we really are looking towards reducing the number of steps if we can and I think that there is a strong scientific basis for this.
Joe Coe 04:04
I know as a patient who’s experienced that therapy, it can be really demoralizing, those trial periods, having to cycle through medications, that likely won’t work, but it’s part of the system and we all have to do it. Fortunately, I had an neurologists like you who was pretty savvy and helped me understand this is what’s going to happen. And here’s the process. There was another issue that you mentioned, that is another critical area of access, and that’s prior authorizations. Can you explain to our audience what a prior authorization is and how that impacts you as a physician?
Dr. Wayne Anderson 04:41
A prior authorization is perhaps somewhat of a misnomer, because it doesn’t really describe the situation adequately. If a physician wishes to prescribe a certain prescription medication or maybe obtain an MRI for example of some part of the body, we would give an authorization for that to occur by virtue of our prescription. So if you think of receiving a prescription in a doctor’s office, that prescription is the doctor’s authorization to do whatever the prescription says. So the word authorization is an unusual and perhaps unfortunate word in that. What the prior authorization is, is that in various health plans, there is a requirement to request that the health plan approve the thing that the physician had technically authorized via the prescription. So before something could be done, let’s say that MRI of some body part there would need to be somebody at the insurance company who would authorize that, in addition to the physician having authorized it on the original prescription. The word prior is kind of odd, because it just means that it needs to be done before the study would be paid for as one of the insurance benefits.
Joe Coe 05:56
Are the people in the insurance companies that are making these decisions, are they specialists who deal with the issue that the provider is prescribing the treatment or study?
Dr. Wayne Anderson 06:07
They can be, and sometimes they are not. I think that does depend on the company. And it depends on the location. In general, I do find that the people who are performing the prior authorization process on behalf of the insurance company are physicians, and in most cases, they are in an appropriate specialty to understand what I am ordering. But I do understand that that is not necessarily a uniform experience, I might actually be lucky in that situation.
Joe Coe 06:37
You’re the provider, you have the relationship with a patient, why are they getting in the exam room with you and saying that what you ordered is approved or not?
Dr. Wayne Anderson 06:47
There are a few answers to that. And of course, the one that people always want to run to is money. And and I think that that’s fair, to an extent. Not everything that we do as a physician is always necessary. And sometimes we do things that we really wouldn’t have had to do if we had maybe approached the situation differently. And the insurance companies feel that they wouldn’t necessarily wish to pay for something that they didn’t think was absolutely necessary. The problem there is that ultimately, I have to believe that when physicians are ordering something we do you think it is necessary. And I think that’s where the conflict comes in.
Joe Coe 07:29
Are you saying that there is reform to this process and things that are going to make it easier for both providers and patients to get the life saving or changing treatments that are needed?
Dr. Wayne Anderson 07:39
Certainly we are hopeful for that. I think it is a partnership, it has to look at all parties involved, all players involved, because there are frankly vested interests on all sides. And I think that it needs to be respected and understood, or we won’t be able to necessarily move forward. One of the things that we do in our advocacy work is to try to help this situation. And if we go back to the idea of step edits, for example, one of the things is let’s just say there are, I don’t know, two things you have to try before the treatment that I would prefer to be used is used. So what if the first one is contra indicated, because the person’s already allergic to that medication or some ingredients in the medication, and the second one has a side effect, it’s going to make some other medical condition worse? Well, I think that if we can explain this, then we should be able to theoretically skip right to the third step because the other two steps would be considered either unsafe, at best, or not very useful. So if we have three treatments in a row, for example, and we want to use the third treatment and the patient’s allergic to the first treatment, and the second one might have a side effect that would make some other condition that the person has worse than I think we should be able to go right to the third treatment. And one of the advocacy issues is to try to allow that to happen. We have seen a sort of recognition of general cooperation because in the headache world, for example, there are guidelines as to when we move to the newer headache medications, the CGRP medications that are relatively new. And even those guidelines do indicate that it is reasonable to try in many cases, some of the older medications that are tried and true before moving to them. So there is hopefully, this idea where we can get to the medication that is best for the patient, but sooner than before and with a better understanding and appreciation for the idea of working within the constraints of a particular system and methodology.
Joe Coe 09:45
And when you went to medical school, did you think that you are going to get so involved in policy?
Dr. Wayne Anderson 09:50
No, I think when I went to medical school, I was idealistic as I think most students in medical school are and we were going to, so to speak, make the world a better place in terms of healthcare. Well, it turns out that if that is what our idealism is, or was at the time, then advocacy for patients is a natural extension of that. We might think of being in a medical clinic or a hospital, ICU, operating room. But you know what, if we’re going to fight for medicine and fight for our patients, that includes Congress.
Joe Coe 10:27
I agree. Last question. What are you most excited about in the field of neurology?
Dr. Wayne Anderson 10:33
There are so many things to be excited about in neurology, it’s really hard to come up with one. But I think if there if there is one thing, it is the idea that we are learning more and more and more about the brain itself. We always talk about how every time we discover something new with the brain, then there’s even more we didn’t know. And I think this is really important for patients. We’re beginning to see things that are subjectively reported, that now may have objective findings behind them. It is certainly no stranger to a person, let’s just say a person with migraine headache. It’s no stranger to that person, anybody listening to this right now, that it’s been called just a headache. And migraine is a primarily genetic neurologic disorder with multiple phases, and multiple symptoms. And not every person with a disease of migraine even gets a headache. But when you take a look at the headache, and you take a look at all of the rest of it, it’s more than just a headache. And we didn’t really have any way objectively to show this. People can also have other conditions that really don’t have objective findings, look at concussion to an extent. It is primarily what people say it is because we know that the CT scan and the standard MRI are going to be normal in a concussion. So how do we know that these subjective complaints continue and become either a post concussion syndrome or a lifelong migraine disorder? Well, there is emerging imaging technology, and of one of many things to be excited about in neurology. And these very high definition MRIs with special additional sequences can show things that are associated with the after effects of a concussion, in many cases. These special MRIs, which now are commercially available in many communities, by the way, for patients, also can show changes in the brain that are associated with a lifelong migraine disorder. There can be some changes in the thickness of the cortex, there can be some changes in white matter, there don’t have to be. And some of these changes can be nonspecific, but we are beginning to see objective information for things that were primarily subjective. And perhaps that may not help us necessarily with treatment. But I do think it provides some validity to patients who have been told they only have a headache, or it’s all in your head, or you’re imagining it, because now we’re beginning to see that these things are in fact real. So I think that, to me, is one of the most important things that’s come of late.
Joe Coe 13:08
That’s really, really interesting and important, making the invisible visible, either through advocacy or through science. So it’s, it’s really nice when we get validated in this very factual matter of fact way, because as you said, Dr. Anderson, for many of us for many years, some of us who live with this disease for decades, we didn’t have those advancements. And people were pushed to the side. And you were lucky if you found the right type of doctor to treat it. So really, really, that’s super exciting to hear and appreciate that information. So if you’re a patient, you can get involved in advocacy in all different ways. GHLF has the 50 State Network of patient advocates, you can go to 50statenetwork.org. If you’re a provider, how do providers get involved with advocacy?
Dr. Wayne Anderson 13:58
In many states, and I’m in California, so it is true here, the state neurologic societies, and actually general medical societies in the state have their days at the state Congress level. And also most of the national societies. For example, for me, the American Academy of Neurology, and the American Headache Society, they have their national days in Congress, and so they can be joined and a person can become involved. Sometimes it can be done virtually if people cannot travel, and sometimes it is in person, which can be a bit more convincing and a bit more compelling, and there can be a combination thereof. For example, the recent Headache on the Hill was an in person and virtual event combined.
Joe Coe 14:51
Thank you so much, Dr. Anderson for your time, expertise, and your passion to advocate for patients and take get your colleagues energized and excited about engaging in advocacy. It’s so important.
Dr. Wayne Anderson 15:06
You’re very welcome. I’m happy to be here.
Joe Coe 15:08
Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe to so you never miss another one. I’m Joe Coe and I will see you next time.
Narrator 15:23
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
This week on Talking Head Pain, Joe is joined by Laura Laureta, a migraine patient and creator of Lit Up My Mind, a website dedicated to making resources about migraine and traumatic brain injury accessible to the community. Through this work, Laura turns the pain she’s experienced into hope for others.
Join Joe and Laura as they discuss Lit Up My Mind, being written off by doctors, and the fun of virtual game nights.
Giving Hope to Others: A Conversation with Laura Laureta (Lit Up My Mind)
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Laura Laureta 00:10
Because of my brain injury, I’ve decided to give my pain some purpose and I want to help other people that are living with brain injury and migraine disease by giving them some hope.
Joe Coe 00:23
Hello, and welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. Today, I’m joined by Laura Laureta, the creator of Lit Up My Mind, a website dedicated to sharing resources about traumatic brain injury and migraine. Hey, Laura, welcome to Talking Head Pain. Can you tell me a little bit about yourself?
Laura Laureta 00:49
Hi, my name is Laura Laureta. And I am a survivor of traumatic brain injury. I live with migraine disease. I live in Denver, Colorado, and I created Lit Up My Mind, which is something I’m very passionate about. Because of my brain injury, I’ve decided to give my pain some purpose. And I want to help other people that are living with brain injury and migraine disease by giving them some hope and resources to help themselves live more fully with what they’ve been given too, so.
Joe Coe 01:25
What was it like getting a diagnosis of traumatic brain injury and chronic migraine? Did you get them at the same time? And what was that process?
Laura Laureta 01:34
No, my process was quite a bit different than most people’s with traumatic brain injury. With my diagnosis, I was in a car accident. And initially, I was diagnosed with a concussion. And you know, I was in the hospital for a few days. And then things just kind of progressed. I was let go. And that was that. But I was in incredible pain. And, you know, I started having these horrible headaches. And a lot of the doctors just kind of thought that I was med seeking. And I just kind of got written off by the doctors. And so it was actually four years of going to doctors and kind of being written off before I was seen by somebody new, different provider who was like, “Oh, wow, something really is going on with her.” And they sent me to some different providers and I was reevaluated. And so with that, I was told that I had a brain injury. And it was like with that, with those words, it was I was validated. And some doors started opening.
Joe Coe 02:53
So many people talk about that feeling of getting written off and it taking so long to get a diagnosis or to be seen as having a real condition. How did it feel? And what was different with that provider? So how did it feel once you got that validation? And what did that provider do that was different than the other providers during the four years where you were not being taken seriously?
Laura Laureta 03:18
I think it was the first time I was seen as like an actual individual. I was being heard. And my problems were real. Instead of just feeling like I was lying on you know, for so often I was going into these appointments. And when I left, I felt like I was in the wrong and that, you know, I was a bad person, almost. This person, this doctor, when I saw him, he actually made me feel like not only did I have a purpose for being there, but like I was finally being heard and the knowledge of knowing that I was going to get some help was huge. So that was very validating.
Joe Coe 04:03
And what kept you going? Four years feeling not validated, a lot of people would just stop trying to see doctors. What kept you going and what advice would you give to someone who’s feeling dismissed by the medical system?
Laura Laureta 04:18
Well, I think part of what kept me going was in addition to the head injury that I had some other issues with my body. They finally diagnosed me with some something called Thoracic Outlet Syndrome. And they after the four years they had to do shoulder reconstruction surgery on me and you know, being in severe pain and I was unable to use my right arm, you know I I didn’t really have a choice of being able to just let that go. So that was a big part of it, I let the pain kind of drive me in pursuing that.
Joe Coe 05:05
We ask all of our guests on Talking Head Paim, Laura, to describe their worst migraine attack. What was going through your head, what did you feel? Paint the picture for the people that are listening.
Laura Laureta 05:16
My worst migraine attack actually didn’t seem like a migraine attack, it was just an ordinary day. And then all of a sudden, I was having stroke like symptoms. And I know that I was unable to move one side of my body, and I wasn’t able to talk anymore. It was just terrifying. I lived in my mom’s house at the time, and we had to call 911. And they had to initiate the stroke protocol when the ambulance came out to the house. And it was just terrifying. I was unable to move, I kind of knew what was going on. My head was absolutely killing me. You know, I just I couldn’t talk, I couldn’t move my body. When I got to the hospital, you know, they did the stroke protocol, they ruled out that it wasn’t a stroke. But they also didn’t know what was going on. And so it wasn’t until about 10 hours later, that they figured out that it was a complex migraine or hemiplegic migraine. And so I would end up having probably four or five of those big attacks. Several times, I would end up going to the hospital via ambulance. And now I just I know how to deal with those on my own. And I kind of can feel those coming on. But that was definitely the worst.
Joe Coe 06:17
Yeah. hemiplegic migraine is something a lot of people don’t understand. And it it does look very similar to stroke and a lot of people and a lot of health care providers that aren’t specialized might not recognize it. So I’m glad that you got that diagnosis. And that you know what it is. You created a website called Lit Up My Mind, can you share what Lit Up My Mind is and what inspired you to create that resource?
Laura Laureta 07:08
You know, over those four years that I was struggling, I was desperate to find anything that would help with my headaches, and I didn’t know what was going on. You know, while I had the headache, I was trying to find resources. And it was really difficult. I was Googling things and not a huge amount of stuff was coming up at the time. I mean, this was 11 years ago now. I decided, you know, I had a notebook. And I was just keeping track of all of the websites that I was finding. And I decided a few years ago that there had to be a better way to help people that were in a similar situation, either they had a brain injury, or they had migraine disease, because it is so hard to keep track of all of the information that is out there and just find it. So I decided to create this website where I put all of the best resources that I have found over the years into one convenient spot. And then people can just look in it’s kind of by categories. There’s the Brain Injury stuff, there’s migraine stuff. And then each of those is broken down into categories. And there’s a lot of really good information. And because this is such a new site, I’m still kind of learning how to build a website, actually, but more is going to be coming soon. There’s a lot more, I’m going to be adding wellness and mental health information and so much more. I’m really excited about it. But because of my own headaches, you know, things are being added slowly, so.
Joe Coe 08:52
That’s amazing. And for folks that want to check it out. It’s litupmymind.com. I was really humbled and I smiled when I saw that you had listed Talking Head Pain as one of the resources on the website. What drew you to the podcast before we connected?
Laura Laureta 09:08
I watched you interview Sean, a retired Canadian Vet from the migraine support group Chronic Migraine Awareness Inc. I went on and I watched you talk to him over zoom. And I just really enjoyed it. And so I started listening to the Talking Head Pain podcast and I decided like there’s so many ways to get our resources and there’s so many ways to connect to people. It’s so valuable to not feel alone and migraine can make you feel so isolated and alone. Because I know for myself, you know so much of my time I’m laying in the dark or in a dark room and in the quiet because of my pain. And so I think it’s important that we don’t do that so much. And if it’s something like listening to a podcast, so that we feel connected to other people who have experience with the similar issue, and we can learn from their experience, you know, hearing their stories or hearing tips and tricks that might help. I think it’s incredibly valuable. And the fact that you don’t have to read, that was huge too. You know, having a headache, but being able to just sit there and listen was was a big factor, too.
Joe Coe 10:32
So Laura, I see that you run a virtual game meet up called Brain Busters, that’s a really cool initiative. Why are events like that important? And what have you learned by doing them?
Laura Laureta 10:45
Brain Busters, that’s something I’m really excited about. You know, with COVID, there was so much sadness that came with it, obviously, but so much wonderful, positive things came with Zoom. And so I took that and ran with it. And so Brain Busters was just an idea I had after a birthday celebration with some friends when we played games for my birthday. And I thought, you know, this would be a great thing to do for brain injury people, because for myself, I’m only allowed six visits with speech therapy a year. And I saw that the games that we played, have a lot of the same skills that we could build on, and practice while we played. And then add to that the community aspect. And so many people are alone, not just because of the COVID aspect right now. But in their illness or with brain injury, it’s a very isolating thing between transportation issues, because so many people with brain injury can’t drive or being limited because of their injuries. So I thought, this would be a wonderful opportunity for people to start to meet each other and have a little bit of fun. And I really, truly believe that if you can laugh a little, it will help your pain, like just having an escape just a few few minutes a day, just having that is so important. So I decided to just try that out. And you know, it’s been a big hit. We have someone from Canada in the group, we have people from all over different states. We have the core group from Colorado, and then we have people from all over and people are really responding well to it.
Joe Coe 12:44
Amazing. We’ve dabbled in some games at GHLF, and one of our organizations called Creaky Joints. We did a bingo event, which was really fun. And actually you talked about laughing and not taking life too seriously. And having fun. Our president and co founder was the bingo caller. And he dressed up as Elvis and that was quite the exciting moment. And everyone loved it. We host something called Creaky Kitchen that people can find where it’s a person in the chronic disease community, talking about a recipe or what food has meant to them or like tradition around food and the connection to chronic disease and food and just it’s a really fun way. And both of those programs came about like similarily, because of the pandemic we wanted to make people feel not as disconnected, creaky kitchen has been going on strong. So appreciate that you do that. Sounds like an amazing group. Have you been able to with all of this advocacy with all the work that you do? Have you found the right treatments for migraine? If you have or if you haven’t, what are some of the challenges? And what does it feel like when you do find something that works?
Laura Laureta 14:01
I think right now I’m finally on a pretty good treatment regimen. I think the biggest thing that is helping me is the actual stuff that’s not given to me by doctors. Throughout the day, I have sunglasses that I wear indoors, and I use ice pack hats. I do a lot of you know I’m, I mean quiet quite a bit. I’ll use earplugs when I go out sometimes because I enjoy doing things with friends. But you know, I kind of have to have a little migraine kit with me. I have some of those ginger candies and stuff to help with the nausea that’ll come up out of the blue and that kind of stuff. So it’s those little things that actually help and I use one of the devices to help kind of take it down a little throughout the day and then And, you know, I do use several of the prescription medications daily. And then I use one of the monthly medications. So I feel like it’s taken a long time, I’ve tried so many different types of things to make different regimens. But this is finally knock on wood, something that is working for me right now.
Joe Coe 15:24
So important that you acknowledge that it’s, like multimodal and multifaceted when we’re looking at how we tackle these really hard diseases like migraine, to make sure that we’re not settling. So it’s amazing that you’ve been able to find both pharmacological and non pharmacological ways to manage and I hope your migraine bag and kit is cute, because it’s important to have fun with these things. And I was talking with another person, on Talking Head Pain, and like, I have my migraine bag, I made sure I picked one that I really like, because when I’m feeling from it, I need to get medication from it or something, I want to say, Oh, this is nice. And it’s a nice moment. I like that. For people that don’t live with migraine or chronic disease, what do you think they need to know, to make the world better for people like us?
Laura Laureta 16:26
You know, I think it’s important for people that don’t live with chronic health conditions to really listen to those that do. And to just take the time to validate the person. I think so much can happen just by simply validating, but they are going through a tough time. And that can be huge. And, and just some subtle changes. You know, sometimes when I’m out to eat with friends, I’ll ask the server if they could turn down the volume of the music in the restaurant. And if I tell them why they’re so generous, and they will do anything they can to try and lower that music. And, you know, not very many people have a problem with that. But it’s just I think people are genuinely willing to make accommodations for us, they you just need to know that you need those. So I think we need to ask for what we need and I hope that other people will just be willing to listen.
Joe Coe 17:38
I really appreciate your time and energy Laura and all that You’re doing for the community. Thank you so much for joining me today on Talking Head Pain.
Laura Laureta 17:47
Well thank you for having me. I appreciate it.
Joe Coe 17:50
Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe and I will see you next time.
Narrator 18:05
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Last week, Joe attended Headache on the Hill, an advocacy event which brings migraine patients and providers to Capital Hill to share their stories with elected officials. Joe was able to meet up with Natalie Copeland, migraine patient/advocate, and Dr. Stephanie Nahas, a neurologist/advocate, who brought their stories and expertise to the nation’s capital.
Join Joe, Natalie, and Dr. Nahas as they discuss their goals for the 2023 Headache on the Hill.
2023 Headache on the Hill: From the Perspective of an Advocate and Neurologist
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:08
Hello, and welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m here at Headache on the Hill, I am getting to connect with Natalie Copeland, who is from Vermont, and this is her first time at Headache on the Hill and engaging in advocacy. How are you doing today, Natalie?
Natalie Copeland 00:32
I’m doing great. Thanks for having me.
Joe Coe 00:33
So can you tell me a little bit why it’s important for you ,from Vermont, being the first time here to share your migraine story and engage in Headache on the Hill?
Natalie Copeland 00:43
I think there’s a lot of misconceptions about migraines. It takes a lot to try to get care for migraines. So it’s important to raise awareness and give back to a community that I’ve benefited from a lot over the years.
Joe Coe 00:54
And why is this personal for you?
Natalie Copeland 00:56
I’ve had migraines and headaches for over half my life. Starting when I was in middle school, they became chronic. So more than half of the days of the month when I was in high school. So trying to be in school, graduate college and work through all of that has been a challenge.
Joe Coe 01:10
And what do you want the lawmakers that you’re going to meet with tomorrow to know?
Natalie Copeland 01:16
It’s definitely more than a headache. It affects how I function on every single level. It affects how I am able to think, it affects cognitive functioning, being able to speak, being able to think clearly and even they can be triggered by things around you. So you know, scented products and lights and everything. It’s not just something that you experience with, with pain, that it is something that you think about constantly and trying to manage.
Joe Coe 01:42
And that’s so important. And I know that they’ll be receptive to our message and look forward to the great work that you’re going to do. Thank you. I’m here today with Dr. Nahas, who is an amazing neurologist and advocate who is no stranger to Headache on the Hill. How are you doing today?
Dr. Stephanie Nahas 01:59
I’m doing great. Thanks for having me.
Joe Coe 02:00
I’m so excited to be able to talk to you. Can you explain to me as a neurologist, why it’s important to attend events like this?
Dr. Stephanie Nahas 02:07
There are clearly a lot of reasons that advocacy is important. For this particular topic of headache, and in the field of neurology, we need to raise more awareness in this primary field that is supposed to be really studying the brain and taking care of headache disorders. Now on the flip side of it, most of this is done in primary care and not necessarily in neurology, and neurologists often forget that this is really our wheelhouse. So any way that we can raise awareness and bring credibility to the field, a field, which is, by the way, often forgotten and stigmatized professionally, not just personally and socially out out in the public. So these are just really scratching the surface of why it’s so important for us to be here.
Joe Coe 02:48
And we’re going to be speaking with some of our elected leaders and officials this week. What are some of the takeaways that you want them to hear from us?
Dr. Stephanie Nahas 02:56
First and foremost, I think they also need to be aware of just how big a problem this is. People think of headache as something trivial, that you can take something simple for and move on. But in reality, we know that for a lot of people, that is just not the case. Particularly with migraine, it affects up to a quarter of households in America. When people hear that statistic, they’re kind of floored by it, because they didn’t realize how common it is. And they also don’t realize that it’s more than just a headache. There are so many other symptoms that occur during the attacks that can cause incapacity even more than the pain does. And furthermore, it’s not just about the attacks, it’s about living with this problem, living with this disease that can strike at any time, and how costly it can be to society.
Joe Coe 03:41
I so agree and what do you want them to take away from our meetings?
Dr. Stephanie Nahas 03:46
I want them to take away that headache is serious. It needs attention, and it needs to be fixed.
Joe Coe 03:52
Great. Thank you so much for your time and all that you do for patients, I really appreciate it.
Dr. Stephanie Nahas 03:57
Sure. Thank you.
Joe Coe 04:00
Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.
Narrator 04:15
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Today on Talking Head Pain, Joe is joined by Kelsey Feng, a migraine advocate and creator of the social media page, Kelsey’s Migraine. Through their work online and advocacy efforts like Headache on the Hill, Kelsey aims to end the stigma of migraine within the LGBTQ+ and East Asian communities.
Join Joe and Kelsey as they discuss Headache on the Hill, representation on social media, and the importance of increased research efforts.
Advocating Online and on the Hill: A Conversation with Kelsey Feng
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Kelsey Feng 00:10
Disability is very much a hidden thing. It’s a taboo topic. It’s not something that we want to be seen as. Like, it seems something that seems like lesser than. That’s something that I want to change. Like it shouldn’t be like viewed as a bad thing.
Joe Coe 00:28
Hello, and welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m really excited. I’m here with Kelsey Feng, who is an amazing migraine advocate who you may know on social media as Kelsey’s Migraine. We’re gonna have a really fun discussion. How are you doing today, Kelsey?
Kelsey Feng 00:54
I’m good. Surprisingly, no attack yet. All the fingers crossed.
Joe Coe 01:00
We’re going to knock on wood, and we’re going to not have an attack today. I feel it for you. I just start out asking all of our guests, what is their worst migraine experience? Can you sum that up in like three sentences?
01:14
I struggle with this one because I feel like there’s always one that tops the other one, I think I’m gonna go with the latest one I had, it was about end of December into January about like two weeks, the status attack, I don’t typically get them too often. And I think that constant head pain just kind of made me really out of it. I didn’t realize how out of it I was until I ended up going to urgent care. And once they like gave me their mix of meds, I was able to like, clear my head, I realized just how out of it I had been for the two weeks because I was like, “Oh, this is what normal feels like,” like, I forgot what normal felt like until I was brought back to it and was just like, amazed.
Joe Coe 02:04
I know that experience when you when that veil lifts, and you feel that lightness that you’re like, “This is how you’re supposed to feel.”
02:12
Yeah, I didn’t even realize that I wasn’t in it until I like was able to get out of it. And then was like, oh, that’s what baseline is like, I just was completely in that migraine pain, like, phase that I forgot what that was. And I think that when I was brought back to like, I guess, reality. I felt so much better, but also was a little concerned about what happened in the last two weeks. Yeah, I work full time. So I was like, I don’t know how the emails have been going out. I don’t know how I’ve been responding to people the last two weeks. So hopefully it wasn’t weird. Hopefully it made sense.
Joe Coe 02:54
Don’t look back, just that happened. And we’re just gonna go forward, we’re not gonna look back at those emails. And if you didn’t hear from people by now, it’s fine. Right. So I want to switch gears a little bit. I heard you talk before and I followed you on social media. Can you talk about how you talk about pain and chronic disease in the Asian community? Has that been something that you have struggled with? And do you see any lessons that might help others that are listening?
03:24
I think so in the Asian community, or I want to say East Asian communities specifically, talk more in that space. It’s not talked about, like pain is one of those things that we, we hide, like, I don’t even express it that much. Just so I’m so used to hiding the pain. And like, you look like you’re perfectly normal, nothing’s going on with you. And that just like disability is hidden, and we’re not one of those people who express it. I want to change that. Disability is very much a hidden thing as a taboo topic. It’s not something that we want to be seen as, like, it seems something that seems like lesser than, that’s something that I want to change. Like, it shouldn’t be like, viewed as a bad thing. It’s something that just happens or like, is daily life, it should be normalized. And I think the community, the Asian communities, it’s heavily stigmatized, especially with older generations. And I can’t speak on behalf of like, if you live in those countries specifically, but at least in the US, it’s not viewed as something that’s Okay. And I think my generation, I’m kind of in between, I’m born in like 96. So I’m like, kind of millennial kind of Gen Z I’m not really sure. I fall like that with this. Trying to bring light to the two I guess how bad it is.
Joe Coe 04:49
Is that one of the reasons why you created Kelsey’s Migraine?
04:52
Yeah, so I it’s actually Kelsey’s Migraine.
Joe Coe 04:57
Kelsey’s with an S. Yeah, actually. I’ve seen you point out “S” before I’m sorry. So for those that are listening, it’s Kelsey’s Migraine.
05:07
Yeah, I, sometimes I hear and sometimes I don’t sound like oh is the S in there? So one of the reasons I guess I decided to make Kesley’s Migraine was because it was not seen in the community like I, when I went on Instagram, when I was looking for support, I only saw white faces for anything disability related. And not that that’s necessarily a bad thing, because there was a lot of great content out there. But I felt like there was nothing representing me, my community and like, how our experiences vary based on that. I think the only thing I saw was true Shruti’s content. So, Chronically Meh. I love our content, like I think it’s fantastic. But she’s also not East Asian. So it’s a little bit different. I based, like I can grab a lot of, you know, there’s generational trauma, there’s a lot of things that she’s been focusing on that differs from migraine that I relate to, but it is different. I’m speaking on because I’m lighter skinned. I obviously I cannot be white passing. But I’m lighter skinned. So there’s a privilege that comes with that as well. That’s different. And I know from her perspective, her varies from mine a little bit, just as we I mean, she’s in Canada, is that, but it varies from me too, because what her traditions are may not necessarily be the same as what the traditions that were passed on to me are.
Joe Coe 06:33
You’re going to be going to Headache On The Hill. Why is advocating for migraine so important to you?
06:42
I think it started as I wanted to help people. I think I went through, I think it took me eight years, almost a decade to get a migraine diagnosis. And a lot of that range from medical trauma, doctors not knowing what was going on. I saw a doctor like every year prior to migraine becoming chronic for me, I always check mark that like headaches spot. Like what was going on, like, you know, the intake form. And no one brought it up. No eye doctor. No, like any kind of doctor, I saw a primary care doctor said anything about it. So I just kind of thought, all these years, it was just a headache. I didn’t, I thought I had low pain tolerance. And it took for my roommate to point out that it was not in fact normal to not function with a headache, that I knew something else was going on and was like, oh, maybe it’s a migraine. Went from there. But because it took me so long, I didn’t want that to happen to anyone else. I didn’t want them to know that like, you know, family saying the same things like it’s just a headache, like you’re just being dramatic or like just take like over the counter meds, and it’ll be fine. I wanted to also do it from my like family. I have family members who also have migraine who don’t even realize that they have migraine.
Joe Coe 08:08
It’s really important to be that voice. And I’m wondering, as I’m listening to you speak, knowing that Headache On The Hill is going to have one of the most diverse classes of advocates attending this year, why is it important as a person in the BIPOC community, as a person in the LGBTQ plus community to be at these events and to advocate?
Kelsey Feng 08:33
I think it’s important. I mean, the biggest reason I see is showing that this is not like a middle aged white woman disease, despite it being advertised that way. Besides it being represented that way in the media. I wanted to show that like it affects everyone, and it affects everyone. It’s not the same symptoms in everyone. It also affects queer BIPOC communities even more so than white communities, because we have we’re multi marginalized, there are things that impact us more than what you know, just primarily whites cis straight communities I have to deal with, like we, you know, have greater rates of income inequality, so many things. And I can’t pull them off the top of my head. But you know.
Joe Coe 09:28
Yeah, it’s compounding and I it’s really important that we have these conversations and I as you were speaking, I’m thinking about the portrayal of migraine and how we have this podcast that I’m this elder, millennial gay guy that’s doing a podcast with an East Asian. I think your Gen Z actually even be millennial on the cusp. Yeah. Millennial rising. With this diverse different experience, and we’re able to have these really important discussions. And I know that if I didn’t happen upon this work by chance, I wouldn’t be as well managed, as I am today. And I hear, we see research about the impact that our attendees have on disease, we could see adverse childhood events, we could see all this stuff that that really, really determines some health outcomes that we don’t have control over living in a society that’s racist, misogynistic, sexist, all the things that we that we could put out there, homophobic, it doesn’t make us feel better. So I read the research, I’m like, Thank you for validating what many of us know, because we live it. And it’s important that we’re out there.
10:56
Yeah. And there’s even things that I hope to change, like, even within the migraine community and the research that’s being done and like, there are more statistics on black people, indigenous people, even Latinx people than there are actually Asian people. And like, I would like, you know, numerous statistics, to be raised, like, Let’s do, I don’t know how I would do it, but necessarily, but like maybe some of the patient advocacy organizations or nonprofits that help with finding, you know, headache specialists, or anyone who’d be willing to do the research and find newer statistics on it, because a lot of them are like, I want to say, like a decade or two old, like, they’re not anything recent. And I don’t know if the reasons that there are not statistics on Asian American in the studies, because it’s also heavily stigmatized, like disability is heavily stigmatized. I don’t know, if they don’t want, there’s part of it, like not wanting to admit that you have a disability, people not seeing migraine as a disability, or just, in general, like not reaching these communities, because it’s not targeted, like, you have to know which community, where they are and where they live and how to reach them. Like, maybe at least for older generations, like some of them still don’t have access to the internet or know what’s going on out there. And then meanwhile, some of them do and like, just don’t, you know, they need it in their email, sometimes they just need it, they don’t be on social media. The migraine community is within the disability community. And that is its own little hub. Like it doesn’t expand to just like the general populace as much. And the general populace isn’t necessarily accepting of disability at all, like they tend to be like, they have their parking spots or whatever. And they and like, don’t really think there’s so much more than like, a parking spot that they gave, like, two in a lot that they’re, you know, can we more than two disabled people coming to an establishment. So I think that needs to change. And I hope one day that will, I mean, maybe I can be the person that starts it, but.
Joe Coe 13:15
I think you already have. I think so I think, you know, having conversations and consistently pushing on, you know, social media and the platforms that you’ve developed are important. Admittedly, I haven’t thought much about the East Asian community when I think about marginalization in the migraine community. So it’s important to hear that and I know that there are researchers and organizations that listen to this podcast and you know, let’s let’s really hear what Kelsey is saying, I think it’s so important. I look forward to seeing you there.
13:52
Yeah, I’m excited to meet a lot of you in person as well. We all know each other online, but actually getting to meet face to face will be very cool.
Joe Coe 14:00
Amazing. Well, thank you so much for all that you do. Kelsey, and it’s Kelsey’s Migraine with an S.
Kelsey Feng 14:07
Thank you.
Joe Coe 14:10
Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.
Narrator 14:24
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this episode of Talking Head Pain, Joe is joined by Dr. Jono Taves, a physical therapist specializing in the treatment of headache and migraine at the Novera Headache Center. Through his work at the center, his TikTok videos, and podcast, Dr. Taves inspires and educates the migraine community.
Join Joe and Dr. Taves as they discuss the neck’s connection to migraine, advice for those nervous about seeing a physical therapist, and easy stretches to try at home.
Migraine, A Pain in the Neck: A Conversation with Dr. Jono Taves
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Dr. Jono Taves 00:08
A couple months ago, I had a lady that was going to fly out. And she just kept listening the podcast and she was like, “You know what, I actually implemented some things that you said, and I feel like I’m good, so I don’t need to come out.” So we’d like to get paid for what we do. But that’s great, too, that the podcast can have that much of an impact.
Joe Coe 00:23
Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. Today, I’m joined by Dr. Taves. He’s from the Novera Headaches Center. Dr. Taves and his team specializes in physical therapy for people with migraine and headache. He’s also the host of The Headache Doctor Podcast.
Dr. Jono Taves 00:47
Yeah, thanks for having me, Joe. It’s an honor to be here.
Joe Coe 00:50
I’m so excited. I came across you on Tik Tok and Instagram. And then we cross paths via email. So I’m really happy that you’re on Talking Head Pain today. So let’s kick it off. Getting into the nitty gritty about physical therapy, can you talk about the connection that you see or know between the neck and how it may affect migraine?
Dr. Jono Taves 01:12
It’s definitely a good starting point. So a little bit of my story is I obviously went through physical therapy school and at the Mayo Clinic, I started to get exposure to what’s called manual therapy. So in one of your previous podcasts you had on another physical therapist, Sam, and I loved what he had to say. So he mentioned manual therapy, and he talked a lot about the sensitivities that the musculoskeletal system has. So when I say that I’m talking about muscles, tendons, joints, the way our bodies move. So as a physical therapist, what we’re trained in is how to understand diagnose and correct movement problems. So virtually in any setting, whether it’s in the hospital, or outpatient, when you’re working with a knee replacement, we’re trying to get people moving better. So that’s essentially what physical therapists do. So when it comes to treating something like migraine, or someone that has chronic headaches, tension headaches, he had mentioned cervicogenic headache, those those types of presentations, we can find things as far as how the body moves, that are dysfunctional, they’re not moving the way they should. And so when it comes to the neck, we actually our neck is tasked with holding up and mobilizing this 10 to 12 pound head, so about the weight of a bowling ball. And there’s specific joints within the neck that especially high up in the neck, the head sitting on the first bone, the first bone sitting on the second bone that allow us to nod and rotate, they do most of that movements. And so one of the common things we find with lots of types of head and facial pain is that the upper part of the neck, these two joints can be restricted. And so going through the process of like I said, being a manual therapist meaning I using my I use my hands, we’ve found that this treatment approach can be really helpful for people that have head and facial pain. What Sam talked about were a lot of those sensitivities, the hypersensitivity that people have. And so treating this from a from a hands on manual approach has seemed to be really successful. And so I’m excited about that because I know that migraine is just such a debilitating disease, it’s a it’s an issue that so many people suffer with. So having this approach as an alternative as something that can come alongside what our healthcare system is already doing. I get really excited about it.
Joe Coe 03:18
Yeah, that’s amazing. I love that discussion with Sam about the physical therapy, it wasn’t something that I really considered as a migraine patient. And it blew my mind when he mentioned that we might be over stretching our necks. Because that’s like the first thing I do when I feel an attack. I feel really stiff. And I stretch and I’m trying to like work that out. And I’ve been really conscious of that since since that discussion. Really interesting advice.
Dr. Jono Taves 03:46
Yeah, actually, that I agree with completely, because in one of my TikToks, at least one of my most popular ones, I tell people, if you pull your head like this, and you’re sort of, you know, cranking your neck to one side, that’s a very, very commonly prescribed type of stretch. And it’s actually intuitive for people to just pull their head to the side when they feel shoulder tension or neck tension. I actually don’t agree with that especially. Well, I mean, there are situations where that might be a good stretch. For most of our patients, most people that work with us, the the nuances of what’s actually happening in their neck, make this just general stretch to the neck actually something that can increase the amount of tension and stress through the neck. And so we want to get a little bit more specific than that. But I totally agree with what Sam was saying.
Joe Coe 04:32
So for those who can’t, who are not watching the video of this, Dr. Taves is pulling his neck to one side and stretching like you would when you feel tense. Yeah, intuitive, very, very natural feeling. What would be a good way for someone to stretch, I’m a little tense right now Dr. Taves, how should I stretch?
Dr. Jono Taves 04:54
I’m going to start with sort of an overarching principle. Okay, if you’re feeling stress or tension in the moment, there are definitely things we can do. And we’ll get to that. But what I like to talk about is like the pre stress and tension, because movement is so important to our daily lives. And the more we move, so our bodies are intended to move. And like I said, these joints in our neck, they want to move, they want their full range of motion. So oftentimes, we get to the point of having the stress or tension in our neck, because we’re not giving our body the things that that it wants to do. And so finding yourself breaking up your day with regular walks, having an actual exercise routine. I know he talks about that a lot, too, that can be really valuable. And so that can prevent the body from getting into this state of just everything hurts and it’s tight. And it feels like it’s achy. Joe, you sitting there right now, one thing that I tell people to try to do as little as possible is sit so you can tell that I’m standing here. I’m a big believer in standing desks. I feel like, you know, our world is on a computer. Nowadays, it’s digital, most people are working at a computer. And so I think standing desks are a great option for people just to get their their body and their musculoskeletal system working to some extent. And so there you go, and you sit up a little bit straighter, right. And so good posture is a wonderful thing, everyone should consider their posture when they are sitting. Because they know oftentimes, it’s unavoidable. Like, we have to sit right. But what I say is the neck’s posture is the best posture. And so if you’re sitting and you’re slouch, that’s Okay for a period of time, but then I want you to sit up and I want you to bring your shoulders back. The other thing I want you to do is bring your head back. So oftentimes, we see a lot of tension and pain that can be generated from these little tiny muscles in the back of the head called the suboccipital. Suboccipital, meaning they’re just below the occiput, which is the backside of the head. Joe, are you familiar? Like if you push there, is that sensitive on you? That feels alright?
Joe Coe 06:57
Yeah.
Dr. Jono Taves 06:57
Okay, good. How about right there, kind of to the side. For the listeners, if you take your finger, you run it up the side of your neck, just before you hit the base of your skull, there might be a little fleshy part that’s a little sensitive. Oftentimes, people that have had in facial pain, that have migraine will have sensitivity there. And intuitively, they might think that, you know, someone should massage it, they’ll have a spouse, significant other, start to, you know, massage that or put pressure on it. And that’s that suboccipital area. So one thing you can do in sitting or standing or just throughout your day, is just take your head and sort of glide it straight back like it’s your chin is sitting on a shelf, glide it straight back. And in addition to that, maybe even tuck your chin a little bit. So for those of you watching, it looks a little bit like this, it’s kind of awkward, you make a double chin, and then you just talk a little bit. The goal is to feel a bit of a stretch in the back of the neck. And I when I put this on my social media channels, I have people all the time, say like, oh, yeah, that feels like a good stretch. And so that’s just a little tip. As you’re sitting there, Joe, trying to make you more comfortable during our interview. You can try that out.
Joe Coe 08:06
What was interesting was that I definitely felt in the back of my neck. I also felt it in my chest. A little bit like it was opening my chest.
Dr. Jono Taves 08:13
Yeah, yeah, the chest is another area that we want to hit on as far as improving posture, and a lot of people have stress tension through their chest. So any sort of pec stretch throughout the day is also a good thing.
Joe Coe 08:24
So what’s your thoughts on strength training? I know that there’s not a lot of research on strength training, and migraine. I know there’s a lot of research on cardiovascular training and migraine and how it’s beneficial. What do you see in terms of strengthening muscles around different areas? And is there research that you think is going to happen in that field?
Dr. Jono Taves 08:44
There’s a few thoughts I have there. If we’re actually treating a patient and trying to get them back to an exercise program, specifically strength training, there are some foundational things that we want to work on first. And like I said, the, the mobility in the upper part of the neck is one of those things we want to at least evaluate, screen for, and then start treating. We want to bring down the level of tension because if you go into a workout and your body is already in this state of increased stress, depending on the type of exercise or lift that you’re doing, it could be a trigger. And so a lot of people that strength train that have migraine, find strength training, actually as a trigger, and so that can be kind of deflating, because going to the gym is obviously a healthy thing. That’s something we want to do. So on the other end of it, we coach people in how to how to actually lift to some extent but what lifts to watch out for so general principles are the shoulders tend to carry a lot of stress and tension. Now that’s intuitive for for people, I’m sure listening, the the way the shoulders function is in a resting position. You’ve got a few different muscle groups, like this levator scapula, which runs from the top part of your scapula up into the upper part of your neck and the upper trap, which makes up, the upper part of the trapezius runs from the shoulder blade up into the neck as well. And so if you’re carrying shoulder tension, that that tension is anchoring on your neck, and so there’s a level of stress that’s coming from the shoulders, and sort of adding stress to the neck. Now, if you go into the gym, and you do things like shrugs, shrugs might actually be aggravating for someone that has migraine, or has tension through their neck or has tension to their shoulders. And so what we want to do is actually restore proper function resting position of the shoulder so that when you do those exercises, you’re actually getting the benefit of strengthening the muscle without adding tension. And so exercising in a dysfunctional way. When I say that, we’re Joe, do you understand what I mean by that? Definitely. Okay. So exercising in a dysfunctional way can actually be aggravating, exercise is good. And strength training is good, we just need to sort of get the foundational pieces, right. And then the other element is building up a tolerance, so that the body gets used to the type of lifting that you’re doing.
Joe Coe 11:03
That’s so interesting. And I lived through that I was getting triggered whenever I was doing back and trap exercises. And I connected it to migraine, because I’m getting migraine attacks after doing that. And I really worked on functional movements with a trainer and yeah, building up shoulder stability and strength. And that was super helpful. Because it’s good. They tell you like I really like working out but I don’t like getting migraine attacks. So had to realize what worked and what didn’t work. And the trap was definitely an area that aggravated me for a while it doesn’t anymore to your point, once you build up that tolerance.
Dr. Jono Taves 11:42
Yeah, and actually this is, this is kind of a subcategory of this conversation. But I just did a podcast on exercise induced headaches, or exertion headaches. And in that category, a lot of people will have exercise will be a trigger, especially weight training. And part of that is this sort of valsalva maneuver, the pressure that’s increased through their system, Sam talked about this a little bit too, but the sensitivities that people with migraine go through will lead to sort of a hypersensitivity, or the brain perceiving hypersensitivity of like blood vessels within the brain itself. And so that increased pressure that can happen during a lift. So if you find yourself, you know, in the benchpress, and the weights down, and you hold your breath, and you’re pushing up, all of that stress and tension can be triggering for the neck. And for those sensitivities that are already there.
Joe Coe 12:30
Breathing is so important. Yeah, you gotta breathe, I have to remember to breathe and be fluid with the breath while you’re doing the movement. And that’s part of the fun is that mind body connection, and takes me away from all of the crazy stuff that’s happening in the world. What advice would you give to someone who’s nervous about seeing a physical therapist? Because some of us might not really even know what that is.
Dr. Jono Taves 12:56
It’s a really good question. So there’s, there’s an assumption in the question, the assumption is that the physical therapist on your street will know exactly what to do with you. And unfortunately, that’s just, that’s not true. And so physical therapy does not look the same across you know, anyone that has the DPT or the PT behind their name. That’s the unfortunate thing that I am trying to change. And so if someone is pursuing physical therapy, so with what we do, we do this manual therapy, hands on approach with most of our patients, obviously, there’s a lot of other stuff like talking about general exercise, and the importance of movement, in lifestyle, and then specific exercises that can help reduce this amount of tension. But when it comes to manual therapy, or hands on to address some of these issues within the neck, finding a good manual therapist, I mean, a Google search calling the office say hey, does this person treat the neck? You know, that would be a question to ask. And then when you go in to see a physical therapist, it can be a little bit stressful, like it’s natural for that to be there. If you’re going to see a provider and you’re and you and they’re working on your neck, because the neck is sort of this area that oftentimes people think I don’t want them to screw it up, right, a couple things there. The neck is really resilient, the body is very resilient, but your body will also tell you if it’s helpful or hurtful. And so if you leave and you just like men, now I feel awful. That rarely happens in our clinic, and that would be something to listen to. Okay, so that’s a way to evaluate your session. The other thing that that can be kind of supplemental, if you can’t find a good physical therapist is actually finding a massage therapist that can focus on muscle tension through your shoulders, potentially they can do some work on your jaw because we see a lot of jaw issues with patients as well. But I would say a physical therapist that says that they’re competent in treating headaches is going to likely have the ability to help in some extent. When it comes to neck tension, shoulder tension, things like that. And then if you’re just going to a general physical therapist that and you walk in and you say hey, I want you to help with my migraine. And then if you make pass that in, they’re like, Okay, I feel like we can help you because they may not even have competence there, what they might do is provide a just a framework for you to get back into exercise, and more specific stretches for like posture, how to stabilize your neck, things like that. And those can be really helpful. So I don’t want to say like just going to a general physical therapist isn’t warranted because it could be. But as Sam said, as well, in our profession, it’s hard to find physical therapists that are really confident in this area.
Joe Coe 15:27
And I think that was my big hesitation, as a patient in even considering physical therapy as an option, because I didn’t view the ones that I’ve seen as being really competent. And talking to someone like Sam and yourself, I’m like, wow, there’s all this information that’s out there that we can use that can help us just feel better, be more active if we want to be. I think a lot of us do and are sidelined by migraine. Yeah. So it’s really important to know, and I appreciate that you’re taking that on in your industry. Because if it could help people, we should try it.
Dr. Jono Taves 16:07
Yeah, absolutely. I mean, whatever. Whatever it takes to just give people a better quality of life. Yeah, and medication definitely has its role. We like to complement medication come alongside people that obviously it’s like, if medication works great. If something else works great. I mean, people just go through the process of trying to find an answer. And so we probably fall a little bit more into the alternative approach. And I would say that’s just because it’s lesser known, not because we’re doing any quackery, but as as we try to grow and develop and educate physical therapists, I hope that there’s this very prominent presence of physical therapists within the headache, and migraine space, because of all that tension, and the sensitivities that happen in the neck and the shoulders. It’s a natural area for us to be in because of these movement problems we see.
Joe Coe 16:59
Well, you’re definitely all welcome, the competent ones, on Talking Head Pain, there’s a space for you here. Wanted to switch gears a little bit and talk about your social media and your podcasts. So you are super active on Tik Tok, which is like a really interesting space for medical information. There’s a lot of misinformation. There’s a lot of maligning of TikTok, some government agencies ban people from being able to access it. What have you learned by being on Tik Tok? And what are some of the the most popular pieces of content that you produce?
Dr. Jono Taves 17:35
Yeah, TikTok is, I would say, it’s, it’s been a challenge, because it’s gotta be really short. And it’s got to be, at least in my world, kind of high intensity, I have to sort of say, Hey, do you have this problem, and here’s something you can try. And so it’s funny, because people will watch a minute video, and then they want me to, you know, fix all their problems. And well, you know, it’s like, oh, I had 30 seconds, you know, so, but the ones that did really well, and that do really well, are when I am able to sort of communicate in a way where people know that I’m speaking to them, and they think, Oh, this is me. And then what I’ll provide them is with some little solution, or tip or trick, and the reason that the videos do well is because oftentimes, people will try it and be like, Oh, my gosh, I feel that. One of my more popular videos was actually going back to this neck stretch, where you just pull your head to the side, I talked about doing a nerve glide instead. And Joe, if you can, if maybe I can angle the camera here, but you take the palm of your hand, and you put it down and back kind of away from you if your Iron Man and you’re gonna blast off, right. And then what I want you to do is tip your head the opposite direction, and then just depress your shoulder, do you feel any sort of like burning nerves, stretch sensation on your arm, maybe it’s in your elbow, your hand should be open, your fingers should be extended. And then I want you to kind of depress your shoulder until you feel it and then just relax your shoulder and repeat that 10 times or so. What that’s actually doing is stretching a nerve that’s obviously running from your spinal cord all the way down to the tips of your fingers. Now that nerves should glide and move from our shoulder all the way down to our fingertips. And that tension that we’ve been talking about that builds up can easily impact the mobility in that nerve. Whether it’s a pec stretch for posture, this is one of the other beneficial things you can do to take stress off the neck into the shoulder because that nerve tension can build up over time. And so that can be really therapeutic thing to do. And that’s that’s getting that same type of stretch without cranking on your neck and potentially aggravating things that are there.
Joe Coe 19:44
I like that and I did go on your TikTok and try that after we spoke the first time and what’s so interesting is is that the side of my neck that’s tighter I definitely feel it more intense. Yeah. So it is doing something my my right side.
Dr. Jono Taves 20:00
Keep it up, Joe,
Joe Coe 20:01
But you can’t fix me in a minute. Why not? That’s That’s messed up, I need TikTok to solve my problems.
Dr. Jono Taves 20:07
I know that’s, that’s the expectation, but I’m happy to help people. And it is a great platform. I mean, yeah, as far as like, the instability of the platform itself, I get a lot of benefit off of it. So I don’t know what the risk reward is there. Maybe I’m ignorant of the risks on it. But it’s been a great platform for us to get the word out and try to help people. And yeah, if I, if I can help someone in 60 seconds, great, you know, I can go home happy that day.
Joe Coe 20:32
And you’re also the host of The Headache Doctor Podcast, what has been the most interesting episode that you produced?
Dr. Jono Taves 20:40
Yeah, the most interesting episode, we’ve repeated it a few times. And essentially, it’s me talking about the connection between the neck and head and facial pain. So when people come into our practice, we screen and assess for the same things, kind of regardless of the diagnosis that they come in with. Obviously, we take it into consideration what they’ve received going through our healthcare system and a bunch of other information. But one of the things that we commonly see that I believe is overlooked in our health care process is movement of the neck. So if you think of the neck as being a problem, let’s say you have headaches, you have migraine, and you intuitively think my neck seems to be playing a role in this. Well, if you go to your primary care doctor, your neurologist, the imaging that people are getting is is an x ray, it’s a CT scan, it’s an MRI. Now, those are still images. Now, if you think of outside of the MD world, who would you go to for your neck, it’s probably going to be a chiropractor. And a chiropractor is also going to take an x ray well, so there’s different types of chiropractors. So I don’t want to paint with a broad brush. But for the most part, they’re going to look at alignment, which is still looking at a still image. And it’s not necessarily so what’s missing is this understanding of movement and how the neck should move, and especially the nuances in the upper part of the neck. So essentially, what I’m doing in the most listened to podcasts is I’m, I’m connecting this neck problem to head and facial pain. And a lot of people that have that intuition of my neck feels like it needs to be worked on. They like that they love it. It’s like this is something that I have not heard before. And it’s that novelty and the fact that you know, it has been overlooked that people, they love it, they reach out and they say, you know, either how do I find this in an area near me, which is always a hard question to answer, just like we said earlier, because it’s not so prevalent. But to that, you know, we help them just once they understand how their neck can be connected, how to manage that, in some sense. So we can work with people virtually, but we love to work with people in person. But the podcast itself, we actually a couple of months ago, I had a lady that was going to fly out. And she just kept listening the podcast and she was like, You know what, I actually implemented some things that you said, and I feel like I’m good. So I don’t need to come out. So sometimes, it’s, you know, we’d like to get paid for what we do. But that’s great, too, that the podcast can have that much of an impact.
Joe Coe 23:00
You’re gonna put yourself out of business.
Dr. Jono Taves 23:01
I think so. Yeah, I’m sharing too much.
Joe Coe 23:04
I think you should rename that stretch to the Iron Man stretch. Oh, yeah, that cue really helped because now I feel like Iron Man blasting off. I like that.
Dr. Jono Taves 23:14
Yeah, that’s a good idea. Joe.
Joe Coe 23:16
Trademark it on Marvel might have a problem or Disney don’t listen Marvel Disney, I don’t want to get sued Was there anything that I didn’t cover that you wanted our audience to know or hear?
Dr. Jono Taves 23:31
I just actually recorded a podcast on it today. But there’s a lot that can be done as far as self management. And I just don’t, I don’t know if people with migraine and then other you know, any type of head or facial pain, I don’t know if the permission is given or the the knowledge is there to really know what to do. And so that would be my message of I try to empower people when it comes to self care, obviously in person care is great. And we can we can help solve those problems there. But as far as like, feeling hopeless, and like there’s nothing left to do and, and kind of feeling victim to migraine. I would like to sort of add a layer of self management when it comes to the physical aspect and managing tension that I think can really be beneficial.
Joe Coe 24:21
I love that, it’s so important as migraine patients that live with this disease for a long time. I had it for over 20 years, that we provide ourselves every opportunity to feel better. Yeah, that we afford ourselves the ability to seek out different types of treatments and I know many of us have to exhaustion but it’s it’s important to stay open and to realize that the toolkit to use a cliche is vast and that there are so many different ways that we can work towards our health and wellness and it’s great that we have doctors like you, Dr. Taves, that are pushing the boundaries, holding your colleagues accountable and keeping them honest about migraine treatment, which is really important and that you’re sharing this with our audience and also through the work that you do professionally and on social media and in your podcasts. So we appreciate it.
Dr. Jono Taves 25:20
Yeah. And I appreciate you Joe for giving me the opportunity because I’m passionate about what I do and I hope your listeners find it helpful.
Joe Coe 25:26
Thank you. Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.
Narrator 25:43
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Today on Talking Head Pain, Joe is joined by Alan Kaplan, Founder of NDPHaware. Alan lives with New Daily Persistent Headache (NDPH) and started the organization to build community and advance research.
Join Joe and Alan as they discuss NDHP, online support groups, and the emergence of psychedelics.
Learning More About New Daily Persistent Headache: A Conversation with Alan Kaplan from NDPHaware
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Alan Kaplan 00:08
I failed over probably up to about 60 medications and devices so far, and I started looking around for alternatives. And I started reading about psychedelics and the possibility you know, them being helpful in treating pain.
Joe Coe 00:22
Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m here today with Alan Kaplan. He’s the founder of a new organization and website called NDPHaware, that stands for New Daily Persistent Headache. It’s a project that started under clusterbusters.org, which is a nonprofit organization that we’ve worked with and been friends with for a very long time. So I’m delighted to connect with Alan to talk about this new initiative and nonprofit organization that is developed. Hi, Alan, how are you today?
Alan Kaplan 01:02
I’m good, Joe, thanks for having me. Appreciate it.
Joe Coe 01:05
My pleasure. So can you tell our audience, they might be familiar with what new daily persistent headache is? Can you explain when you first started to get headache and how that feels? And if that was your worst attack?
Alan Kaplan 01:20
New daily persistent headache, for definition purposes, the way I look at it new, and the way the International Classification looks at it, it’s basically a headache that kind of comes out of nowhere, something you’ve not really had previously, that’s not from a different headache condition. So kind of comes out of nowhere, at least for me, it came out of nowhere. And most people remember the onset or near abouts the onset. For me, it’s around the first or second week of December of 2017. I could celebrate or some other people say crack-aversary of your of your headache. Daily meaning it’s every day, it’s 365. Persistent meeting it’s 24/7 and headache is just one part of the description as far as the symptomology and how it presents. As far headache pain, you get a lot of similar symptoms that people would have a headache diseases like migraine with photophobia, sound problems, so barometric pressure changes, nausea, what else I get? Neck, shoulder pain, brain fog, word finding things like that. As far as what was the worst headache or its experience with this, it’s kind of hard to say cuz I look at it as I’ve had one headache for the past 1,820 some odd days since this thing started. And the only difference really is how the pain levels just kind of bounce around. I could be a 2, 4, 6, 10. And back down the scale all on the same day, as far as pain levels go.
Joe Coe 02:57
How is living with this for the past five years impacted your day to day life?
Alan Kaplan 03:03
Oh, I say somewhat dramatically, affected my work. I was working at the time when I developed us. And I kind of lasted about two years of having it where I finally realized I just can’t function at this level. The level I want to function I with my job and I was getting close to retirement ages anyway. So figured, probably a good time to bow out. It affects your family, how you deal with your family. Affects your friends, the activities you do, you know, I cancel a lot of things. I’m at the point right now, after five years where I don’t make a lot of plans. I have plans in my head, but I don’t necessarily voice them until I know I’m ready to do something. I might plan a trip or might plan to go to a concert and things like that. But, you know, any given moment, I get hit with a spike. And that’s the end of the plan. So it’s it’s, it’s difficult.
Joe Coe 03:54
And is there any understanding for you or others, what happens that one day you don’t have a headache and then the next day you have a headache that lasts for five plus years?
Alan Kaplan 04:06
They don’t know exactly what causes NDPH to have their headache diseases. Mine like I say it came out of nowhere. There a lot of people in the community where it could have been a result of a viral infection, concussive event, stressful event in their life. COVID is coming up lately over the past almost three years since COVID started and that seems to be a potential cause. I know you had Dr. Robbins on and he spoke to that recently. And something we do hear about.
Joe Coe 04:38
The prevalence. You’re a man with this disease. A lot of the people I talk to in the migraine community are woman or woman identified. Is it an equal prevalence in men and women? Does it skew like cluster, more men?
Alan Kaplan 04:54
Well, if you go by looking at the support groups and Facebook groups, it’s like 80% women versus 20% men that are engaged on the support groups. But I think it’s probably closer to 60-40, 50-50. I don’t think anybody is immune from it. We are in the process, one of our goals with NDPH aware as an organization, is research, education, advocacy. And what we have coming up is a formal patient of based survey that’s going to be coming out in the spring that will give us more data, something that’s pretty well lacking with NDPH. As far as I know, there has not been a patient survey out there ever. There was a doctor in Houston, Dr. Evans, did a study a few years ago, which was a more of a chart study, over a 10 year period from his patients, but nothing where the patients themselves are getting the chance to be heard. So when that’s done, we’ll have a lot more information.
Joe Coe 05:58
How did you find the support groups? And did you feel that the social media around it resonated with your experience?
Alan Kaplan 06:06
Yeah, well, you know, Facebook, of course, as a million million groups, and you know, just as search on that, and there was a couple of NDPH support groups, the big, there’s two big ones on Facebook right now that are basically as the go to, for people with NDPH. There’s some overlapping into the chronic migraine groups as well. You know Google, of course, you know, you can find anything you want on Google. And so, but the Facebook, things used to be the most responsive, and it was a good place to start, just understand what was I going through, why do I have this, you know, I didn’t ask for this, you know, it’s not something I would have, you know, put on my wish list for anybody. And, you know, but the support groups, if you get the right people, you can get a better understanding of what the disease is all about, like people asking about medications and things like that happen. You get deeper into, you know, like you said, How’s it affecting your life, you know, was, you know, how do you cope with that, you know, what kind of different strategies are available to help, you know, get some kind of relief.
Joe Coe 07:11
And why did you start a website and organization, NDPHaware.org?
Alan Kaplan 07:17
It’s my third year, I was kind of running out of medications. I’ve gone through pretty much everything that they throw at people with migraine, and other headache diseases. There’s no approved medication for NDPH that the doctor can prescribe. So if you have NDPH take this, that’s not the case. So we’re basically borrowing medications or anybody else, CGRP medications that are new out there these days, and much injectable or IV, or whatever it might be plus all these old standards back from years ago, with the triptans and things like that. I failed over probably up to about 60 medications and devices so far, and I started looking around for alternatives. And I started reading about psychedelics and the possibility of them being helpful with treating pain, chronic pain. And I started going that route. And in February of 21, I had a psychedelic experience, which the next day, my pain levels were dropped by 50%. And I was like, “Oh, this is insane, it’s great. What do I do? How do I do with this information? Who do I talk to?” And I started to Google found other doctors that talked about headache doctors, that talked about psychedelics and pain. And then I started saw the information about Cluster Buster. And I reached out to Bob Wald, and Eileen Brewer, and they were looking for other people with other diseases that may have had positive psychedelic experiences to help treat their pain. And some of the patients from Cluster Busters use psychedelics to help manage their cluster headache, as well. They’ve actually have a pretty robust community around that. Because of that, we got connected and then we just kind of started my advocacy. That was a year ago, June of 21, when I first met up with Bob and Eileen. And then, you know, I went to a conference where they took me to a CHAMP conference that year, and then the August we kicked off NDPHaware. So it’s kind of born out of my experience and gave me a vehicle to launch a way to find research, find scientific data that can help us deal with this disease.
Joe Coe 09:34
Eileen and Bob are great. I consider them friends. And one of the one of the first people I interviewed was from Cluster Busters, Joe McKay, and he talked a bit about his experience with psychedelics and how that has helped. And there seems to be, it’s a really burgeoning area of exploration in many different ways. So it’s really cool that you’re putting your stake in the ground to help move the needle for headache patients.
Alan Kaplan 10:05
I believe. Yeah, I believe it’s, there’s, there’s something there, you know, for pain. There’s a lot of what everybody’s saying is more towards the mental health side of using psychedelics, and there’s some talk. And there’s been more over the past few months about how it relates to chronic pain. And I want to treat it basically, at this point, I’m trying medications here and there. But basically, I don’t have anything in my toolbox that’s prescribed medication that I can use. And, you know, this is kind of what you’re left with, when you’re dealing with a 24/7 pain condition, and you need relief. And if you can find it, like anything else, you go where you find it. And if it helps you use it, regardless of whatever the consequences might be.
Joe Coe 10:50
Just a reminder for our audience to discuss all the medications that you’re taking either prescribed or not prescribed with your healthcare team, so they know what’s going on.
Alan Kaplan 11:02
Which is, which is what I’ve done, this stuff needs to be treated with respect.
Joe Coe 11:05
Definitely. So what has this work taught you?
Alan Kaplan 11:09
Patience, I guess is probably the first thing when this was first getting started. And I first met Bob and Eileen, and it was like, it just seemed like the, you know, the wheels just kind of grinding rather slowly, the gears are grinding very slowly moving forward. And then all of a sudden, once things are in place, things starts ramping up. So by the time I met them until the website got was released in August, this past August, it just seemed like it was taking forever to get things done. But then everybody says this is just a very slow, nonprofit, it’s a very slow process, in general. And so you get patience, you learn that, and can start building up your team and and sort of figure out what to do and how to do it. And very interesting, it’s been an interesting ride so far. And since I’ve kicked off the website, and the organization has been a lot of positive feedback from the community and, and from doctors that I talked to, when I was at the Cluster Busters conference and had a few doctors there and to try to get some help, really, and support. And it’s very rewarding. So you know, the patience is key, and learning how to deal with yourself, you know, and understanding how to manage the new lifestyle that actually we’re going to call it a lifestyle. And no particular one I mean, I would guess would be the more be more apropos for that. But I’m excited. I never did anything with nonprofit, except write some checks for donations here and there. But I think we got we have something going forward here that hopefully, it’s going to pay dividends for the community. And hopefully, can find some relief as we get some solid research into it.
Joe Coe 13:01
Well, I really appreciate that you joined me today and that you gave me your first interview. Oh, thank you. Yes, it’s gonna go down in history of NDPHaware.
Alan Kaplan 13:14
I hope so.
Joe Coe 13:15
You heard on Talking Head Pain first.
Alan Kaplan 13:18
Well, thank you, Joe. I appreciate it.
Joe Coe 13:21
Well, yeah, I really appreciate your work. And it’s important. And, again, what I think is, the big takeaway from the discussion is is that even with diseases where we don’t feel like there’s a lot of innovation or that there’s a lot of options, there are people like Alan who are pushing the boundaries, who are seeking out these physicians to help inform research and education around misunderstood diseases. So we really appreciate that work and look forward to watching me grow.
Alan Kaplan 13:54
Thank you. We’ll have to do a part two.
Joe Coe 13:59
Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.
Narrator 14:14
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
On today’s episode of Talking Head Pain, Joe is joined by Alicia Wolf, creator of the Instagram account, “The Dizzy Cook” and author of “The Mediterranean Migraine Diet: A Science-Based Roadmap to Control Symptoms and Transform Brain Health.”
Join Joe and Alicia in part two of their interview where they discuss the recipe for happiness, international cuisine, and meals with special meaning.
Finding Joy While Dizzy: A Conversation with Alicia Wolf (Part 2)
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Alicia Wolf 00:09
It does take a mind shift perspective to go from why me into what can I do to make myself happy.
Joe Coe 00:20
Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. Today, I’m joined with Alicia Wolf, who is known on Instagram and in the migraine world as the Dizzy Cook. She is the author of two books, “Dizzy Cook: Managing Migraine with More Than 90 Comforting Recipes and Lifestyle Tips,” and “The Mediterranean Migraine Diet: A Science Based Roadmap To Control Symptoms and Transform Brain Health.” Please know that food and diet can be sensitive topics and could be triggering for some. We approach this conversation with care and empathy, but wanted to alert our listeners in case this is an issue for you. The conversation that I had with Alicia was so rich that we broke it up into two parts. Elease enjoy part two of our conversation. What is the recipe for life and happiness as the Dizzy Cook?
Alicia Wolf 01:18
I would say just like not giving up. I mean, there were so many times that I just told my husband, I was like, “I don’t think I can get through this.” I mean, I know that they say God never gives you more than you can handle. But this feels like way more than I can handle. And I’ve said that so many times in my life, like I remember getting through chronic vestibular migraine. And then once I got through that I had infertility and how to go through IVF and all of that. So I’ve just felt so many times in my life, like why me? Why why is this happening to me? And I think that it does take a mind shift perspective to go from why me into, “Okay, what can I do to make myself happy despite living with this, what brings me joy?” And when I first got sick, my therapist had me write down all of the things that I found a lot of joy in and to go through that list and to see if there were any opportunities for me to find joy in those. And so one of the things was cooking, I liked working with animals. So I kind of looked into volunteering for different animal shelters or even just like making phone calls. That’s kind of how I got involved with vestibular.org. I, you know, wanted to help other patients. So I was making phone calls for them for a little while, which kept me off screens, which was kind of nice. But the cooking part of it, I always came back to because it was the one thing I could control in my life. And so I knew if I put these things together, and maybe not. Not everyone feels that way, including you now. But I felt like if I put these ingredients together, I could somewhat figure out how things were going to turn out for me at the end of the night versus like you wake up with migraine, you don’t know what kind of day it’s going to be. So at least like cooking brought me some stability in my life. And it was something I really enjoyed. Because at the end of a really hard day of fighting with insurance, like I could sit and just chat with my husband, and over like a really comforting meal or chat with my family. And it was just something that really brought us back together and made me feel like a somewhat normal person. And I think there’s a lot of healing that can be found through food and through even mindfulness that can be found through cooking or baking for some people. And so that’s what I really loved about the whole experience and what I tried to convey with my recipes and everything online.
Joe Coe 04:14
Maybe that’s my struggle with cooking, mindfulness component, because I struggle with that. I don’t like to be mindful.
Alicia Wolf 04:22
You know, what really helps is good music. So I always start with like really good music that I love. And then I always make myself like whatever you can tolerate and no people will tolerate different things, but I always like to start with a good drink. So whether that’s a mocktail, even just kind of putting those ingredients together and making it in a fun glass like it sets the tone to not feel like what you’re cooking is going to be just for eating or consuming. It makes it more of an event or an experience, I guess. So if you can find ways to make it fun, then I think it it becomes more enjoyable.
Joe Coe 05:04
So interesting because I’m the total opposite. When I was in Italy, I was like, I love that you could just go up to a bar, get an espresso, drink it in 30 seconds, and leave. As opposed to like sitting in a cafe shop, relaxing, appreciating the moment. And so I might do that. That’s a good, around the holidays, that seems like something I could try on and see. I’m open to new experiences.
Alicia Wolf 05:29
You’ll have to update me.
Joe Coe 05:33
So I want to just dig a little deeper about your cooking, do you have a favorite recipe or one that means something very special to you?
Alicia Wolf 05:42
Yeah. So actually, a lot of the recipes in my first book, and then some online, I have one online called Lazy Lasagna. There’s one in my first cookbook, that is these chewy ginger cookies, and a celery seed dressing, and these are all recipes from my grandma, Mary, who is 100 years old now. And they were not migraine friendly, because that’s not how she cooks. She’s a lot of like, the store bought ingredients and everything like that. So we had to tweak them a little bit to make them a little more migraine friendly. But they’re some of my favorite recipes, because they remind me of her. And she had six kids and was not a fussy cook. So that’s what I love about those is it just, it just makes me think of family and kind of brings back those memories of like going to her house and eating. And so like things like the celery seed dressing, she used to put like a cup of light sugar in. And instead I’ve replaced that with much less sugar as well as like replace it with honey. And it’s so it has a lot of the same flavors, but not quite as not quite as sugar heavy. So just things like that, that we kind of work together on and I don’t know those just bring me a lot of joy. And again, I think that’s part of the joys of cooking is it can it can bring up those memories inside of you those really good moments. And so like when you’re having a really bad day, it kind of transports you back. It’s like that scene in Ratatouille. I love that movie Ratatouille. I don’t know if you’ve ever seen it. Have you seen it with the that this rat who like loves to cook. And the whole premise behind is that like anyone can cook. And so there’s this scene at the end where the the rat is trying to cook a spectacular meal for this famous food critic. And he ends up serving him ratatouille. And everyone’s like, “Oh, it’s like a peasant meal.” But the food critic, he takes one bite of it. And it like transports him back to when he was he’s like skinned his knee or something like that with his mother. And she made him your hearty bowl of ratatouille. And he like drops his fork because it brings back those memories for him. And I just like such a moment that I love. Because you can tell like, sometimes when people eat those certain foods, like I’m sure if you have one of the pasta dishes you had in Italy, it just brings back those memories for you of like a really fun evening, you know.
Joe Coe 08:34
Cooking and eating. I love eating, the cooking part. But I appreciate the eating and the people that do it. And around the holidays, we talk a lot about how food brings us together and we’re talking with my colleagues about like what traditions we do and you talking about your grandmother made me think of my great grandmother who would make these this dessert on Christmas Eve called struffoli, which is these round honey balls that are kind of fried it’s an a, an Italian southern Italian thing. And my cousin makes them now. I obviously didn’t get passed the recipe because my family. Although, they have given me Thanksgiving as the holiday to do which is like a cooking heavy holiday but I gotta catered. Yeah, I can’t I can’t do that. I just remember once getting a turkey and I was like I’m going to do this and I looked at the turkey and I was like I don’t know what to do here. This is aggressive. I can’t do this.
Alicia Wolf 09:38
To be fair, turkey’s are very hard for a lot of people. That’s why I recommend roast chicken.
Joe Coe 09:44
I would you know what and I like chicken better so maybe something here but it’s so um I so it’s a unifying thing. It’s a comfort thing and you know thinking about traditions and you know you talked about in different ways about Joy and about having power and, and I think of cooking is chemistry and science with passion, which is important. So it’s that control, you have X ingredients, and you are going to make something. And I just haven’t found the right music yet, but we’re gonna we’re gonna try it out. I love music I dance in my kitchen all the time. Not while cookingm but we will shift.
Alicia Wolf 10:29
Yeah, so like, what’s your favorite song like maybe start with that.
Joe Coe 10:33
Depends on the day and I have some really bad music taste that we won’t subject the audience to. Last question and other like deep hitting one. You’ve said you traveled a lot, and you’ve taken cooking classes throughout the world is there an area that you find most attracted to when it comes to cooking and cuisine?
Alicia Wolf 10:55
Oh, gosh, you know, they’re all so different. So where I’ve taken classes, I’ve taken classes in Italy, I’ve taken some classes in Thailand and in Japan, as well, which I mean, their level of cooking is crazy. I’ve taken classes in Dallas. And then both the probably the last ones I did, I think this was actually after I got sick too. We went to bone actually in Burgundy, France and did a little intensive course there. And that was truly amazing because we went from shopping in the market and even like sourcing, just sourcing local ingredients to how to put together these really amazing meals. But they’re all made from very simple ingredients. And that’s what I really loved about a lot of these courses is it’s amazing the flavors that can come from just a few really good quality ingredients. So whether that’s picking up fresh herbs or you know, really taking time to talk with your butcher about what kind of chicken you’re getting, how it was processed, you know, I’m a big fan of using air chilled chicken even more than organic just because of the way it’s processed. And it goes through chambers of air rather than being dunked in water. So it doesn’t absorb that solution, which makes it cook, and, and brown even more beautifully than your normal traditional chicken. So just things like that, that you kind of learn about, you know, even just starting with a really good quality ingredients can make a huge difference in how your meal is going to turn out. So it doesn’t have to be something super complicated with all of these spices, and all of this time and effort, you know, do you start with a good piece of meat or vegetables and just grill them and serve them with you know, lots of fresh herbs and stuff like that they can, they can turn into a really wonderful thing. So I would say that last class was, was probably one of my favorites, I mean that they have some of the best food in the world around Burgundy. And it was not like in other parts of France where it can be super pretentious, but just really really good hearty food. So that’s I’d love to go back there and take you know a longer class there as well.
Joe Coe 13:34
It’s amazing and you are making me again think of Italy, I had was a simple tomato mozzarella salad with basil and olive oil. And it was I’ve had it a million times in my life. And it was just like the mozzarella that they used, the oil, the tomato everything just was like a little bit better. And even the salt, like it was just I said I was having all these pasta dishes and all these different meat and fish and I was in Sicily and in all these different very different types of meals. And that was one of my favorites. Just a basic, very simple tomato mozzarella salad. And you’re right.
Alicia Wolf 14:17
I mean that’s what I always bring back home from my trips are actually salt and vinegar if they have like a certain type of vinegar that I really liked but olive oil too if it’s it’s a place like that like around Italy where you can get really good quality olive oil, you know. That can make such a difference even in your salads. All you need is a drizzle of olive oil and it’s delicious.
Joe Coe 14:40
So I have salt from Sicily, and I just got salt from one of the salt mines in Vienna. So um yeah, so I have Yeah, my Yeah, exactly. And my brother’s like why do you keep buying salt? I’m like I happen to be in places that they produce salt and I’m like, why not? International array of salts. I say it’s because I’m a salty person I need more salt. Well this this was so nice. I’m so glad we got to connect and talk about salt and dancing in the kitchen and vestibular migraine and all the things. I really appreciate all the work and passion that you bring to our community and that you help people find purpose through a creative endeavor such as cooking that sustains and nurtures us.
Alicia Wolf 15:32
Thank you, I appreciate that. That’s a really kind compliment.
Joe Coe 15:35
Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.
Narrator 15:50
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
On today’s episode of Talking Head Pain, Joe is joined by Alicia Wolf, creator of the Instagram account, “The Dizzy Cook” and author of “The Mediterranean Migraine Diet: A Science-Based Roadmap to Control Symptoms and Transform Brain Health.”
In part 1 of their interview, Joe and Alicia discuss getting diagnosed, the impact vestibular migraine has on relationships, and Alicia’s journey to becoming The Dizzy Cook.
Becoming The Dizzy Cook: A Conversation with Alicia Wolf (Part 1)
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Alicia Wolf 00:09
I realized throughout the course of cooking on the side and grocery shopping like how exhausting it is to have to change your diet when you feel so sick. And I was like I want to go be making what I was making before to be migraine friendly.
Joe Coe 00:25
Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. Today I’m joined with Alicia Wolf, who is known on Instagram and in the migraine world as the Dizzy Cook. She is the author of two books, the “Dizzy Cook: Managing Migraine with Over 90 Comforting Recipes and Lifestyle Tips,” and a newly released cookbook, “The Migraine Mediterranean Diet: A Science Based Roadmap To Control Symptoms and Transform Brain Health.” Please know that food and diet can be sensitive topics and could be triggering for some. We approach this conversation with care and empathy but wanted to alert our listeners in case this is an issue for you. The conversation that I had with Alicia was so rich that we broke it up into two parts. Please take a listen to part one. How you feeling today, Alicia?
Alicia Wolf 01:19
Actually, I’m feeling really good. Surprisingly, for everything that’s been going on lately, so my, my head has been great lately. Yeah, thank you for asking.
Joe Coe 01:29
We like the days that we feel good and it’s important to embrace them and feel like it’s okay to feel good too. Sometimes you feel like we might get jinxed for feeling so good.
Alicia Wolf 01:39
I try to enjoy those days and take full advantage of them.
Joe Coe 01:45
Something I like to ask all of my guests, can you explain your worst migraine attack to us?
Alicia Wolf 01:52
I’ve had a few I can’t decide which is worse. Probably the last really intense one was when I was in labor. But before that, they would always come with dizziness. So I’d get extreme dizziness where I felt like I couldn’t concentrate or see even see properly, my head just felt really floaty, or like it was sometimes would feel like it would pop up and float away. Or like I was about to even pass out which is kind of scary, but never actually did. I would feel like I was walking on a moving ground like walking on marshmallows or, like sometimes I would feel like a little bit of rocking or movement that wasn’t there. Probably the scariest symptom is always vertigo. So that’s just like movement that happens, sometimes it’s spinning. Sometimes they feel like I’m moving forward really, really fast, like in a car, and I’m actually standing perfectly still. So that to me is probably one of the most frightening and that always comes with a lot of nausea and vomiting. And once that vertigo attack starts, like it’s just the worst symptom I feel like of all the migraine symptoms I have, but I actually rarely get had pain. So those are those are kind of the more intense ones for me. And they come with like light sensitivity and sound sensitivity as well.
Joe Coe 03:27
Yeah, vertigo is intense. I remember the first time I had it, I was at a red light. And there was something in my car. And I thought my brakes weren’t working, and I was going backward. And I’m screaming, “My car, my car!” And my friend is like, “What do you mean your car?” I’m like, “I’m gonna hit the car behind me.” We’re not moving. And I was like, “Oh,” and then I spoke to my doctor and they’re like, “You have vertigo, and it happens.” Fortunately, that doesn’t happen to me often. But now I know what it is. So I don’t start screaming my car my car. Yeah. It’s definitely is a really strange experience. Particularly it’s hard to understand if you’ve never had it before. So I can relate on a small level, too what you-
Alicia Wolf 04:16
Actually like that whole situation. It’s so funny you said that. That was like my first indication that that was before I was diagnosed. But I had the same situation where I was in park with my coworkers. And I slammed on the brakes because I was like, “Oh my god, we’re moving forward.” And they were like, “What is wrong with you? Like we’ve been in park,” and I just thought my car was still moving forward. And that was the first indication I’m like, okay, these doctors need to stop telling me this is just anxiety because this is like way deep in my brain. This has to this can’t be just anxiety or, or I’m stressed out. This has to be something else.
Joe Coe 04:57
Yeah, really the more that I do this work Learn about migraine related conditions. Our brain is so powerful and complicated and can give us these experiences that feel so real to us, but obviously aren’t happening. But it feels like your car is moving. I wonder how many people have experienced that same scary moment in a car? If it’s two of us, there’s probably more.
Alicia Wolf 05:22
Yeah, probably a lot more. And then Alice in Wonderland syndrome, I don’t know if you’ve ever experienced that too. But I hear that from a lot of like the vestibular migraine patients as well. And that one is trippy too, where you see things and they sometimes you feel very small or very large in comparison. Everything’s distorted around you. And it’s sometimes so hard to wrap your brain around the fact that this can all stem from a migraine attack.
Joe Coe 05:53
So I fortunately have not experienced that knock on wood. Let’s not have that be 2023’s new experience. I’m going to pass. But you mentioned, Alicia, that your migraine and your disease was pushed off as anxiety. How long did it take you to get a diagnosis? And what was that process like being told that it was maybe all in your head?
Alicia Wolf 06:20
It was really difficult because it must have taken me about seven or eight months to actually be diagnosed with vestibular migraine. And in that time, it started off with my primary care physician and she was just kind of like, “Oh, I bet you had a cold, it’s fine. Here’s some steroids you’ll feel better.” I just kept being fed more steroid courses until she decided you know, maybe it’s time to go see an EMT. So then went to go see an ENT and they ran a bunch of tests, but nothing was really coming back that was obvious. And so they sent me over to a vestibular therapist. The vestibular therapist also ran a bunch of tests and never once in this whole process did anyone ever mention vestibular migraine to me. I got told Vestibular Neuritis. I got told I had a potential perilymph fistula, I got told that it could be another vestibular disorder that we would just need a ton of vestibular therapy for so it was kind of vestibular therapy like five times a week, which was not good. And I started going to, after I got a severe vertigo attack one night, I went to the ER. They diagnosed me with vertigo and sent me home with meclizine. And they said to follow up with a neurologist. So of course, I always did my research trying to find doctors. So I was going to like some of the top ENT’s in Dallas, I was going to some of the top neurologists in Dallas. And no one was mentioning migraine. The neurologists were evaluating me for potential MS. And at the end of it, they would just be like, “You know what, I think you’re just stressed out, you’re, you’re anxious.” We were buying a house at the time and I was trying to get a promotion. But these are things that anyone has to deal with in life. You know, I feel like they kind of put you down if you’re a woman, and you’re trying to convey these symptoms. They just kind of are easy to it’s easy for them to say, “h, it’s all in your head,” which I mean it is but it’s it’s not just made up in your head. These are things that are happening. And sadly, I think I started episodic but trying to find a physician and get the right diagnosis and then compounding now with going to vestibular therapy way too often, doing the wrong exercises forced me into a chronic stage where this was constant. I could no longer drive, I could no longer work. I was losing my job and I couldn’t go to HR and give them my diagnosis because no one had a diagnosis for me except for that I was stressed. And no HR is gonna let you have short term disability for stress. So I was fighting with all these different people and I had heard about this Dizzy Doctor, they called him the Dizzy Doctor and he diagnosed unexplained dizziness at UT Southwestern, but he had this like seven or eight month waitlist at the time. And so I was on it, but we decided to actually drive to the Mayo, Arizona and because of that potential perilymph fistula diagnosis, and I went to go see an ENT who is an expert in perilymph fistula and after about two days of testing, I remember he walked into the room and he was like, “Oh, you have migraine.” And I was like, “No, I I don’t get headaches,” and I always thought I was one of those people who always thought migraine equals bad headache until I started learning more about this illness and how crazy it can get. And so I was a lot in denial about my own diagnosis and he explained to me you know, migraine can come in all different shapes and sizes. And with vestibular migraine, you know, you don’t always have to have head pain. It’s just one of the diagnostic criteria, but with my light sensitivity and sound sensitivity, that’s how I kind of met that criteria. And he’s like, “I don’t treat this because it’s not in my wheelhouse. But, you know, you need to find a good neurologist.” And thankfully, the Dizzy Doctor had a cancellation that next week, he got me in. And that’s my current neurologist, Dr. Shin Beh, and he seems like one of the few that really specializes in vestibular migraine and he confirmed the diagnosis. And after having those two doctors that I felt like really listened to me, I trusted the diagnosis and I was like, “Okay, maybe maybe this was it.” And we went on a treatment plan and the rest is history. So yeah, it was a journey. Really important that people hear that it was a journey, the end that you got there. I want to talk about today. Were you born the Dizzy Cook? Or did you become the Dizzy Cook? I became the Dizzy Cook. Actually, in the past, and my neurologist says this can be common with vestibular migraine is if you have like car sickness and motion sickness a lot. So there were times in my childhood that I remember getting really motion sick, but nothing that I remember having these attacks. I mean, it really came on when I hit 30 and was newly married. And I do think I was going through a lot of changes in my life then and especially I had a not very supportive work environment too, which I’m sure contributed. But I try not to blame myself for you know, triggering this. I think it’s easy to blame yourself for causing migraine attacks. And that’s not the case. Like it’s a neurological disease. And sometimes, it’s just an unfortunate circumstance. And so yeah, I always loved to cook though. So maybe it was in it was deep buried in me somewhere. And it just kind of came to light with this whole situation and having to basically uproot my life because of migraine,
Joe Coe 12:23
And you started to develop your symptoms, you said after you got married, how did that affect your relationship?
Alicia Wolf 12:30
It was really difficult because it’s such an odd illness. And when my husband started going to these appointments with me, and no one can really explain what’s going on with you. But I’m here telling him something different. Like, it’s, I think it’s hard for your partner to grasp the exhaustion that comes from being dizzy 24/7. Like, what is dizzy? You know, what is that word? Dizzy, it can mean so many different things. And so I think it’s hard for them to grasp, feeling this way, all the time. And how exhausting that is to deal with symptoms all the time, like unrelenting symptoms. And so for a while there, we just really weren’t communicating very well. And he didn’t quite understand because he always seen me as this like fun person who loved to travel. And now I couldn’t even drive. And so he was driving me to all these doctor’s appointments and vestibular therapy. And I think it was exhausting for him too, to not have answers as well. So once we got to doctors that really understood and he was coming in those appointments with me, he really started to see like, “Oh, I understand what’s going on. I understand this is how we have to treat it. And I have to play a part in this healing too, like I can help, you know, in my own way as well.” That was what was kind of interesting about us trying to navigate that whole situation there too. And now we’re in a great place but.
Joe Coe 14:09
Amazingm and does he have a favorite recipe of yours?
Alicia Wolf 14:12
He likes them all. I would say he, oh, he’s like He has some that he really I just did a one that was these chicken artichoke puff pastries for the holidays and he’s a big fan of those. So I’d say that’s his current favorite, but I think he’s just happy I’m cooking.
Joe Coe 14:35
So when did you develop this social media presence and this idea of the Dizzy Cook?
Alicia Wolf 14:41
I was diagnosed and I got on my treatment plan. It was not an overnight fix, unfortunately, and because I was trying to get promoted at my old job, I could feel myself falling behind and like giving them more reasons to not promote me and unfortunately, I went back too soon to my office job and what I realized now and what they shouldn’t have done, but they changed a lot of my workplace while I was on FMLA. So that’s illegal for anyone listening and should definitely consult with a lawyer before you even leave for FMLA and short term disability, to see what your rights are, because I had no idea. But through all of this, I was just not receiving the accommodations I needed to heal and I had a heart to heart with my neurologist. And he was just like, “Look, I’ll support you on whatever you want to do. But you make bigger strides when you’re not there under all this stress and everything like that.” So I ended up leaving, and I realized not everyone has that luxury to quit their jobs and just be for a while. But it allowed me to really focus on my treatment plan. But as someone who is very career driven, it was terrifying for me, because I didn’t know who would hire me next. Especially trying to navigate this illness, or if I’d ever be able to work on the computer all day again. And so I really have a background in cooking. I’ve taken culinary classes all over the world, but I’ve never really applied it. It was always something I just did for me and my family, I never really applied it to or thought it could be a career. And part of my treatment plan with my doctor was to try a migraine diet. So we tried the migraine elimination diet from Johns Hopkins, sometimes it’s known as Heal Your Headache, and it has you eliminate things for a certain time period and kind of bring them back into see if you have any food triggers. And it’s a difficult diet to do for a lot of people just because it’s not your standard, like whole 30 or gluten free, dairy free, which I had tried and I had actually gotten worse on. Do I thought, “Oh, you know, maybe maybe this will work? And if not, it’s just one more thing like, what, what can it hurt.” And I remember about two months, and I thought it was kind of silly. And I tried yogurt that night, because I had eliminated it in that period. And I used to eat yogurt every single day. But I was also Dizzy every day, so could never really tell the difference. And I got a vertigo attack that night. And it made me realize, “Oh, I haven’t had a vertigo attack in probably, you know, three months since I had started this.” So I stuck with the diet. And that’s what really was that final piece for me to get me to like those Dizzy free days, which was amazing. And so I realized throughout the course of cooking on this diet and grocery shopping like how exhausting it is to have to change your diet when you feel so sick. And I thought, “Hey, I’ll just like there’s no resources out there, really.” And the recipes that were out there, like I had tried and they weren’t good. And I was like I want to go be making what I was making before from my favorite food blogs and cookbook authors and everything like that, but to be migraine friendly. And so I just kind of put the recipes I was developing online and figured oh, maybe you know a few people will really like them. And it just started to catch on and create a nice little community of people who were kind of searching for the same thing. And one of the people who was reading who, besides my mom, at the time when I first started this about five, six years ago, I think it was almost six years ago. She was my she’s my current editor of my cookbooks. And so she has vestibular migraine, and she was looking for just resources on it as well. And she used to do cookbooks like for William Sonoma. And so she was like, “I would love to do a cookbook with you.” And so that’s kind of how the cookbook came along very early at the start of the Dizzy Cook, and the rest is history.
Joe Coe 19:21
Yeah. Amazing. That’s a great origin story. I think it’s amazing what you’ve done considering you know, the pain that you’ve lived through and the meaning in the sense of feeling unwell because I know you talked about not having head pain, but that whole trauma is really important that you took that and you made a really positive community and you found a large group of people that really find what you’re cooking to be what they need. Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain, head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.
Narrator 23:25
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
On this episode of Talking Head Pain, Joe is joined by Erica Carrasco, the founder of Achy Smile. Erica is a small business owner who creates migraine awareness apparel and merchandise, a great tool to advocate for chronic illness.
Join Joe and Erica as they discuss creating Achy Smile, Erica’s experience with physical therapy, and the pressures of trying to stick to a strict diet.
Life with an Achy Smile: A Conversation with Erica Carrasco
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Erica Carrasco 00:06
I can’t always be perfect. And that’s okay. Like I don’t allow myself to guilt myself anymore. I used to, but I don’t anymore. I mean, as long as food is nourishing me, I’m okay.
Joe Coe 00:20
Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. And I’m here with Erica Carrasco, who is the woman behind Achy Smile. It’s an amazing website, we can get some of the best promotional material and migraine affirming products online, really love it. So she’s a small business owner and a person who lives with migraine and has a really unique and interesting journey and story to share. In today’s episode with Erica, we will be discussing diet and exercise and how it relates to us individually. We know that this can be a challenge for some and can be triggering. We approach this conversation with care and empathy. Erica, so glad that you’re here today.
Erica Carrasco 01:11
Thank you, I’m really glad too. I always listen to your podcast. So it’s exciting to be here on the other side.
Joe Coe 01:16
It is. So I like to ask everyone to begin with explaining the worst migraine attack that they’ve experienced.
Erica Carrasco 01:24
Oh man, my worst migraine attack would probably an intractable attack that I’ve had, I mean, I have several intractable migraine attacks. But for mine, they mimic stroke, I have hemiplegic migraine, and it affects the left side of my body. But not only do I have the muscle weakness on the left side, which includes my arm and my leg, it will also include my face, so my face will droop. I’ll get blurry vision, double vision, I’ll see spots, I also have aphasia. So the aphasia is kind of on a spectrum, it’ll be anywhere from missing a few words to not being able to speak at all. I’ll sound like a toddler sometimes. And in my mind, I know what I’m trying to say. But it doesn’t come out. It’s not, the other person has no clue what I’m trying to communicate to them. I also have difficulty with moving my left side because of the weakness. I’ve had two episodes where I’ve been paralyzed. But just on the left side of my body, but most of the time it’s actually weakness. And then in addition to that, though, that’s not necessarily common with hemiplegic migraine, but it can happen is something called migrainous propalgia. And it’s severe pain up and down the whole left side of my body because that’s the same side as my head pain. So I have the pain from my head to my toes, and it is beyond excruciating. So those kinds of migraine attacks are the ones that get me and sometimes when my pain gets to a certain level, it does trigger non epileptic seizures. So then I’m dealing with that on top of it. So it’s rough.
Joe Coe 02:56
I talk about you as a small business owner. So you developed Achy Smile. What is that and why did you do it?
Erica Carrasco 03:02
So back in 2018, I was seeing a psychologist, right. And she had asked me to make a journal of you know, living with migraine, and how come it was so hard for me and things like that, just to get things out of my mind because I’m, I’m an over thinker. So she felt the journaling would be the most helpful for me. Because I had lost my career. My career was in cybersecurity and worked with Department of Defense as a contractor. And I’ve done that for several years. And I loved it. It was what I felt like I was called to do. So when I lost all of that due to chronic migraine and severe attacks. I decided to blog because my background is in tech. And I also have carpal tunnel. So writing was harder for me than typing. Oddly, typing is just easier for me. So I decided to start a blog. And so I started the blog, and I was trying to think of a name. And I was like, “Okay, what do I name this?” I was like, well, everybody tells me I’m smiling all the time. But I’m always in pain. So I’m always achy. And they people tell me they’re like, “You can’t ever tell if you’re mad, upset, sad, because you’re just always smiling.” So I was like, what Achy Smile would be perfect, because that’s just who I am. Right? Like, I felt like that’s who I was. So I named it Achy Smile. And later that year after I had started blogging, I got a call from an awareness campaign. And so I joined the campaign and I got a little popularity from that. And from there, I just took off. I didn’t start making awareness clothing and accessories, I want to say, till maybe a year later, after that, after I started my Facebook page and started getting a little bit more of a following. And then I thought, “Okay, how am I going to make money,” because I was the breadwinner of the family and my husband had to go find a career. He was a stay at home dad and we had to switch places and mentally that was devastating for me. So I was like, “Okay, how am I going to help pay the bills?” And you know, thankfully, my husband joined the military and then got out, went back to school and so it was just it’s In a process to get where we are today, but you know, I’m in no by no means lavishly rich or anything, doing migraine awareness apparel and stuff. But I’ve been able to pay like a car payment here and there pay the electric bill. And to me that is it just that helps like my heart, my soul.
Joe Coe 05:17
I love that star. And I didn’t know that. And it was, it sounds like it was a really rough time, and you took something really negative and challenging and made a positive. And it’s really, I think, important for people with chronic disease to get paid for their work. So you’re doing something providing a service, people would look to get these materials and these items from other for profit websites and entities. So why not support someone who’s living with the same or similar disease as us. I think it’s a great thing, that you’ve been able to get a little bit from that because you give so much. You should you should get more than a car payment here or there. I want to switch gears a little bit and talk about your journey to health, wellness, mental health, physical health. I saw on Instagram that you are in a new movement routine. And how has that been? How is that process of getting in touch with your body and mind while living with achy smiles?
Erica Carrasco 06:17
Over the years, doctors have always told me, “You need to workout you need to work out,” and I tried to tell them like I have exercise intolerance, it’s really hard for me like every time I exercise, I have attacks. And of course I have more than migraine. So my other conditions are also triggered by them. So when I started seeing my new headache specialist, he was like, “Okay, I’m gonna prescribe PT for you.” I was like, Oh, here we go again. And I told him, I was like, “Well, I have exercise intolerance.” He’s like, “Well, we need to strengthen your left side. Because that is where you feel the most symptoms,” you know, the weakness, the muscle pain, all of the above. So he was like, “Let’s strengthen your left side and see how that helps.” And I was like, okay, so they sent a referral for PT. That PT company calls me and says, okay, what do you what is it? You know, like, basically what’s wrong with you? So I explained to them, they’re like, Okay, so you know, of course, I’m just, I’m just like this special case in their eyes. And so they find me a PT that has experience with neurological patients. And actually, his specialty is more with stroke patients. But because it’s so similar, as far as symptoms goes, it wasn’t very hard for him to kind of change gears. And actually, it caused him to do a lot of research about hemiplegic migraine. He’d come back every appointment and be like, “This is what I learned. This is the article I read.” So I was really excited because he was so excited. And I realized that the most difficult part of working out for me was just trusting my body, and trusting that my body could do the things that I didn’t think it could do. So he helps me trust my leg, trust my arm, and was able to get me to see where, okay, at this point, that’s when I start getting fatigued. So maybe work out to this point, and stop there. And then let’s see how much further you can go every time you work out. Let’s try to push that a little longer and a little longer. And so that’s what’s been happening. What was really hard that first day is not hard anymore. And so it’s a slow process, though, because I had to cancel on him so many times, because I’ve held attacks. And he did not want to work me out when I was in the middle of an attack or having really bad symptoms. So even with all of those cancellations, he was still able to progress with me. Or I was able to progress with him to get to a point where I could actually work out my heart rate go up, and I wasn’t being triggered as bad. I would still get triggered. But because I trusted my body, I was actually starting to trust that okay, I can work out I’m probably going to have an attack. But that’s okay. And now that’s sort of where I’m at now. It’s like, okay, I know, I’m probably going to have an attack after I workout. So I’m going to prepare for that. And then I’m going to rest and not give myself so much guilt for doing nothing for the rest of the day. And so it’s like a mental game. It’s a physical game, that you just have to play it because if you don’t, then you’re just laying in bed all day, making no progress. Right. So that’s what’s been so exciting. It’s just been a complete change from 2021 to 2022. As far as like my whole journey of migraine, I feel like I’ve learned so much in the last year or so. And part of that is working out.
Joe Coe 09:30
Looking to pull up the Instagram post that you put up. “Things 2022 taught me: one step at a time. It hurts but I’ll be okay. I am worthy. My pain matters. I’m not alone.” And this is a video of you working with the physical therapist. I see a kettlebell, I see some resistance bands and I just love and that really resonated with me. I think that it’s important to take it one step at a time to understand that we’re gonna hurt sometimes. And it really helped me reflect on my 2022 as well. So I really appreciated that post.
Erica Carrasco 10:07
Thank you. It was actually I mean, I kind of teared up making it. You know, it was, it’s hard to be raw sometimes, you know, it’s hard to talk about the depression and talk about what happens. There’s so many things, migraine in itself is hard. And then when things happen outside of your life, that have to do with migraine, that triggers a migraine, then it’s just an ending circle of disability. So I have to figure out how to throw in some happiness in there, right, so that I’m not stuck in this depressive state 24/7. Because then it becomes scary. And I’m trying to get away from that scary feeling again. And so like I’m working out, I’ve started a new diet, the Mediterranean diet, and I’m trying to follow. I’m not perfect, but I’m, you know, I’m doing pretty good. I’ve lost weight. Like I said, I have other health issues. And so I need to lose weight for those health issues. But yeah, I’m working on it. So I mean, I’m sure pretty sure people are obnoxious, or think I’m obnoxious, because I keep posting my salad plates, on Instagram stories. But it’s just because like, I’m finding these new recipes that I’m really excited about, because I love to cook. You know, I follow Alicia, the Dizzy Cook and constantly like making her stuff. And so it’s just fun, you know, interacting with all these different migraine people. And we’re all just trying to do the same thing, just trying to cope with what our personal creativity and knowledge and who we are and bring that into the migraine space to help other people. I feel like that’s what each advocate tries to do know, they work to their strengths, right?
Joe Coe 11:42
I really find powerful about your story, there’s many things, but one thing that I want to highlight, you thought that you couldn’t exercise. And you had a physician who said, “Let’s try it.” And you could have said, “No, I’ve had bad experiences, I can’t do that.” And you would have stayed where you were. And I think that that fear and risk and trust is something that we all have to build to. So you finally found a provider, you found a physical therapist, you found people that are supporting you in different ways to this other part of this journey itself. And that power that you feel when you get some control, I think is really important. And I think that we can’t control a lot. And I know, Erica, like when I started working out, I was passing out, I was on medication that lowered my heart rate and I was getting dizzy and I had to stop and I couldn’t do this. And then I got into a really good swing. And then I got COVID. And then I got I got into another really good swing. And then I had appendicitis attack and had to get my appendix removed and couldn’t work out for a month. Then I got COVID again, and got into a good swing. And then I had a minor foot injury and couldn’t. So I think it’s it’s all about figuring out what we can do. And there are times that we can’t, but there are times that we can and talking about your diet not being perfect. There’s no such thing as a perfect diet. And it’s about being consistent. Make sure you feel good, right. And your diet consists of what you do for 75% of the time, not 100% of the time. I thought oh my god, I eat so healthy years ago. And I was like yeah, cause I’m thinking about the one day a week that I eat healthy. And the six days that I’m not I don’t think about those. And I was like, but I eat so healthy. And I would tell doctors, I’m like I eat the Mediterranean diet. And I was like, yeah, I eat the Mediterranean diet on Tuesdays. Yeah, exactly right. I eat the Taco Bell diet because it was easy and convenient every other day.
Erica Carrasco 13:54
Yeah, I probably have Mediterranean like like five days out of the week and then Chick fil A salad to the other two.
Joe Coe 14:01
And that is perfect. And if you were you know, we all have to find what works for us. And you know, and if it doesn’t work, then move on. We all just want to feel better. So if it can give us the opportunity to feel better try it. There’s some studies and I don’t have them off the top of my head that say your medication works better. If you’re eating healthier and exercising. I want my medication to work the best that it can and give it every opportunity to but it’s hard when you’re in pain, right? It is hard, you’re mentally not feeling well when you’re physically not feeling well to get that push to do it.
Erica Carrasco 14:36
Yeah, so like I have a referral to go get tested for POTS. Because I have a lot of the symptoms of POTS and every POTS person I know is always asked me, “Do you have POTS?” Like I don’t know. So that when you throw that into with migraine, migraine is one of the symptoms of POTS, so when you throw that into the mix too, sometimes I can’t get up at all out of bed because just standing up is really disabling. So I’m fine lying down, but I’m not fine standing up. So a lot of times, I’ll be able to get maybe 5-10 minutes out of standing up. So I just like throw something in the microwave and go right back to my bed and eat it in bed. And, and so like, I can’t always be perfect. And that’s okay. Like I don’t allow myself to guilt myself anymore. I used to, but I don’t anymore. I mean, as long as food is nourishing me, I’m okay.
Joe Coe 15:25
And there’s no such thing as good or bad food. I’ve been working with a health coach, his name is Dion, he’s with this company called My Apex Coach. And he really drills that in. And that has been really helpful for me during my journey on wellness and health. People get so hung up with these like extremes, and exactly like eat the bread, if that’s what you need to eat, like, it’s okay. I’m not a fan, this is me, Joe, speaking of these fad diets of like, do this do that, you know, it’s about balance. And that same working out, it’s about balance. It’s about finding what works for us in our current state of being.
Erica Carrasco 16:07
And that’s what I’m trying to change my my brain with, like, let’s say I run out of my bread, right? Like, I love Dave’s Killer Bread. So I just like the way it tastes and all the grains and stuff, but it’s healthy, right? Like it’s the healthy word or whatever. And then I’ll go and get like my son’s white bread. Be like, okay, I’ll just be like, I love the way white bread tastes, right. But I also want to get more of the nutritional value. So I’ll eat my bread. But sometimes I’m not going to kick myself in the butt if I have a piece of white bread, because it’s gonna keep me alive, you know.
Joe Coe 16:40
There is nothing wrong with a piece of white bread.
Erica Carrasco 16:42
Yeah, but I know that that piece of white bread is going to probably skyrocket my sugars and dealing with pre diabetes, well, then I know that the white bread is just not the best choice for me at this time. And so that’s how I’m trying to reframe the way I think about food is okay, I know my body, I know what I’m dealing with. I know my health issues like my blood pressure and my sugar levels. And I know some of my, I don’t really have too many food triggers for migraine, thankfully. But I know those two like sugars, actually one of my migraine triggers. So I have to be careful with how high my sugar gets and how fast it gets there. So yeah, like, that’s how I’m trying to think of food now like, okay, is it going to trigger me one? And two, if I eat this will it affect any other part of my health in this moment right now? And so that’s kind of how I have to do food just because of my own personal health conditions. But I’m not going to stop myself from like, going to the yogurt place and having a little yogurt with my son. You know what I mean? Like, I’m gonna have the yogurt.
Joe Coe 17:43
I’m a firm believer in dessert every day for me. And I’ve lost a lot of weight, and I’ve kept it off and I have dessert every day. Yeah, it there is no, that’s why there’s no such thing as a bad, bad food. What I have found that has helped me and I this is such a personal and can be a very triggering topic for people talking about food and diets. But what I have found that helps me I try to look at, how does food make me feel? Yeah. So while I’m eating it, after I’m eating it, and then a couple hours later, I kind of judge what I eat based on that. And there are times that that instant gratification is really good. And that’s, you know, the foods that tend to be highly refined and processed. And you know, the quick and easy things. But I often don’t feel that great after. But I know the days that I’m eating like the Mediterranean-sh, Whole Foods type things, I tend to just feel better. And you find and you find that that reinforces the feeling. So you balance the instant and then the long term and it’s it’s a challenge. But you know with the holidays, you know, eat the desserts that are special to you. Don’t not do that if you can, as long as it’s not going to give you an attack or if you have other issues. But yeah, food is an interesting thing.
Erica Carrasco 19:08
You know, people get so passionate about it, like I’m in this one migraine diet Facebook group for Mediterranean and people are nasty in there. And I almost left the group, but they have really great recipes. So I stayed in I’m like, I’m just not gonna listen.
Joe Coe 19:21
How are they nasty?
Erica Carrasco 19:22
They get upset if you’re not strict like they are. And so they’re like, “Oh, you can’t eat that.” And then they’ll go off. And it’s like, look, people are coming here because they want support. And they’re learning. I was like this is not a group for pros. This is a group for beginners, but they kind of go off on you. I posted a picture in there of my breakfast and I had a can of Zeiva, I love Zevia. They were like, “Oh, Zevia is not Mediterranean. You can’t,” and I was like okay, well next time I won’t post a picture with my Zevia. And I put that in my comment that sounds like okay, look.
Joe Coe 19:55
It’s unfortunate because that deters people from trying things because it’s not realistic to be 100%, one way or the other.
Erica Carrasco 20:04
Most people can’t be super strict, they either live in a really rural location where they don’t have access to some of these foods. Some people are like myself, who can’t get out of bed for two or three days at a time and can’t make food for themselves or their home alone. And so they’re going to eat what’s there because they’re hungry, you know, and it’s unhealthy to not eat when you have migraine, right, migraine brain needs structure and reliability. And so we have to eat and sleep and do all of these things to the best of our ability in order to keep our attacks down. So we have to be able to give ourselves what we need in a specific set of timeframes. Because like, if I don’t eat, I feel like passing out. And so I have to eat, I don’t care what it is in that moment, you know, and usually, it’s something sweet, because that’s what helps, I’m pretty sure it’s a blood sugar thing.
Joe Coe 20:53
So you found that there has been a correlation between your physical pain and your mental health? What are you doing about that?
Erica Carrasco 21:01
So late last year, actually, no, we’re in 2023 now, aren’t we? So in 2021, I lost my grandmother, and my cousin within four months of each other. My grandmother had dementia. And she passed away, she had a, you know, a good life. And she was older lady. But it was, she was like my mother, she helped raise me. So it was the one of the hardest days of my entire life. And four months later, I lost my cousin who was very much like a brother to me. And so those two deaths so close together, threw me into the deepest depression I’ve ever gone through in my life. And I was scared. I almost admitted myself three times into a facility because I was worried about self harming. But I didn’t. I did wind up talking to my husband cause I pretty much kept all of those feelings to myself. But I cried and cried and cried in my room. Because you know, when you have migraine, it’s not unusual to be in your room for all day long, right, in the dark. In those cases, it wasn’t actually migraine. I was in there for it was depression, but nobody knew. They just assumed I had migraine. And I didn’t change anyone’s assumptions. So the more scarier my thought processes were, I knew it was time to tell my husband what I was going through. And so he was shocked. But not surprised, necessarily, because of how I took, you know, the time with my family. And I was like, okay, we didn’t have health insurance, because he wasn’t working full time. And he was a student. And I didn’t have access to any medication or doctors. And so I was doing all of this by myself. And it was really, really hard. So I was like, “Okay, I need to give myself a project.” So I’m trying to think what can I do? I’m reading blogs, psychology blogs, trying to help myself understand what’s happening in my mind. Because the thoughts that I was having, it’s just not like me. And I was getting scared. And I was like, what is happening to me, right? So I’m trying to understand from a psychology standpoint, what’s going on and I was like, okay, the last time I was in similar place, not as strong, but a similar place, the doctor asked me to journal right? I was like, okay, let me design something, because that’s going to keep my mind occupied. I’m an overthinker. So I need something to do. And I started developing my own journal to kind of help me, like, catalog my thoughts for the day. But I needed that to be the same every day. So I created a planner, where, since I wasn’t on medication, I was like, “Okay, I also need to start tracking my symptoms, because I don’t have meds, I don’t have a doctor.” I’m like, what am I going to do? So I created a daily check in, and a symptom planning journal where it correlates together, it’s all on the same day. And it’s the exact same questions every single day. So at the end of the month, you can see visually how your emotions and your thoughts might affect your symptoms physically, because it took me a long time to believe that stress was one of my triggers, and financial stress more significantly. So with this journal, I was able to pull myself out of the deepest depression I have ever been in. And shortly after that, I was able to get a health insurance because my husband got a full time job. He finished school and got a full time job. And I saw a psychiatrist right away. And I showed her what I was doing. And she was really impressed. And she was like, “This is really good. Like you basically pulled yourself out of depression.” She’s like, “How are you doing now?” And I said, well, initially I thought I might have been bipolar. And she told me that grief symptoms and bipolar symptoms and someone with chronic illness are very similar. And I didn’t know that. So she said that is basically, I wasn’t bipolar, but that’s basically what was happening. And she said you’ll see over the next few months as you’re healing that those symptoms that you were having of depression are going to start to fade. And she was right, they did. And I just kept journaling and using my journal, I mean, it’s only a three month tracker. So it’s a physical symptoms, and mental health tracker. And so it’s for the physical side, and the mental health side. And to kind of put it together so that you can share this with your physician and with your therapist, or whoever it is you see for your mental health, so that they can also see that, you know, you see the patterns visually, because in the planner, I color coded it. So I use different color pins for different levels of severity of my symptoms. And so with that, once you put it all and you see the whole three months, it’s like, oh, well, on this timeframe, this is how I was feeling. But it was also doing this, this and this, oh, well, maybe taking a shower is a trigger for me, because every time I’ve shower, I’ve had an attack, right. So I know other migraine trackers exists. But I haven’t seen one that puts the two together, the mental health and the physical symptoms. And so that’s why I did that one, because that’s actually what I use personally. And so I was like, well, maybe this can help somebody else. So hopefully, that’s what happens. But it’s not out yet. I’m finalizing everything. You have taken so many different challenges and have made positives out of them and really appreciate your energy and the work that you do. Your openness for our community and your willingness to share. So thank you so much for joining me today. Yeah, I’m just excited to be here with a great conversation. It was fun.
Joe Coe 26:33
Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.
Narrator 26:48
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
This week on Talking Head Pain, Joe is joined by Kathy O’Shea, author of “So Much More Than a Headache: Understanding Migraine Through Literature.” In her book, Kathy delves into the pieces of literature that capture what it’s like to live with migraine.
Join Joe and Kathy as they discuss migraine in unexpected pieces, migraine as a literary tool, and the works that represent migraine poorly.
Migraine in Literature: A Conversation with Kathy O’Shea
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Kathy O’Shea 00:06
A lot of other authors and writers must be migraine sufferers. And so I’ve just in my own wanting to dig in deeper myself for my own benefit, I started just researching and I got more and more passionate about it.
Joe Coe 00:24
Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m here with Kathy O’Shea. She is a professor and also the author of “So Much More Than A Headache: Understanding Migraine Through Literature.” Hi, Kathy, how are you doing today?
Kathy O’Shea 00:46
I’m doing well. Thank you. It’s a pleasure to be with you. I look forward to talking with you. Thank you so much.
Joe Coe 00:51
Thank you so much for joining me. And I like to ask all of our guests, you live with migraine, can you explain what your worst migraine attack was like?
Kathy O’Shea 00:59
That’s actually tough, because I’ve lived with them for 45 years now. I’d say that the toughest for me is when they’re intractable, when I can’t get out, I can’t break a cycle. Might peak and have you know, a 10, you know, a 10 and be in bed for a period of time and, you know, for a few days or something. But then rather than having it entirely lift from me, which is always what we hope for instead, it just reduces in the cycle. And it kind of carries me in a what I call a functional stage for a lengthy period of time. And I feel like at that point, everything I throw at it is nothing’s working. And I get pretty helpless at that point. So how to describe a particular one. I mean, I can remember my first one, you know, I was only 14 and happened to me when I was at a rec center camping up in the 1000 Islands. And my brother and I were over there watching, of all things. Charlie Chaplin film. Maybe that did it? I’m not sure but but it just came out of absolutely nowhere, no trigger signs, no warnings back then nothing. And I did feel like I was going to die. Back then nobody knew much about migraine. And so there wasn’t much treatment for it. And certainly nothing designed for it. So that was probably the scariest time in a way. Although we went through a long period of my growing up teenage years during that time when we were desperately seeking help. And there wasn’t any or very little to speak of.
Joe Coe 02:27
So before we jump into your book, you’ve lived with migraine for many decades. Have you seen a shift in treatment understanding? And how does that feel as a patient?
Kathy O’Shea 02:38
As a patient? It’s wonderful. I remember about probably three to four years before my headaches specialist retired in 2016, he said to me, “Kathy, this is,” you know, I was just so just shaken about the fact that he was going to retire. And we don’t have many headache specialists up here in Rochester right now in New York. And I was so shaken by that, that he kept trying to reassure me, “Great things are coming in the next three to five years, great, great things are coming.” And it’s true. I mean, I think the the variety of treatments that we have available now, and the the different number of CGRPs available to try. And you know, it is a case of something doesn’t work, there’s something else to try now. And that certainly wasn’t always the case. And wasn’t until you know, quite recently, as you well know. And I also use, you know, additional kind of medical devices you know, such as neuromodulation device. And that has proven to be quite helpful to me over the last you know, maybe 10 years or so.
Joe Coe 03:44
You were motivated, Kathy, to research and write a book called “So Much More Than A Headache: Understanding Migraine Through Literature.” What prompted you to embark on this endeavor?
Kathy O’Shea 03:56
It actually came on a very selfish reason initially. I was in one of the most intractable periods, my headache specialist had just retired. And I was in some level some part of the cycle for over three months and just felt quite helpless as to where to turn. And I finally said to myself, why don’t you practice what you preach in the classroom and that is turn to that which you always turn to in times of crisis or grief or sorrow or pain. And, you know, go back and read that essay that you first read, which was Joan Didion’s “In Bed” that I read as a graduate assistant and I was thrown to a composition classroom and told to teach freshman comp and handed the book I’d be using it in the very first essay in it was Joan Didion’s “In Bed,” I’d never read it before and I ended up sobbing when I finished it. And it became part of the framework for my entire book. But I did, I went back and read that in my office that day and then I thought, “You know, a lot of other authors and writers must be migraine sufferers, or they’ve created characters and personas that, that, that have migraine.” And so I’ve just had my own, wanting to dig in deeper myself for my own benefit, I started, you know, just researching, and I got more and more passionate about it. And then finally, you know, I remember talking to my husband one day at lunch and saying, “You know, there’s something here,” I mean, we’ve got, there’s just because I believe so strongly in the power of literature and the arts, to give us with the experience that other things can’t, that I thought others can benefit from this. And if I organize it in a way that’s going to be meaningful for those different audiences, I’d like to touch that’s amazing. And during this process, what was the most surprising or shocking revelation or piece of literature that you found that referenced migraine? Actually a play. It was a play about Nietzsche, and explores a lot of you know, his migraine symptoms, and him being diagnosed with migraine. And so I was quite surprised to find a play. But I think what surprised me was the vastness of the breadth of, of literature that really is out there. And of course, mine is not inclusive. I mean, I’ve since found other pieces, and I’ve thought, “Oh, I wish I’d known of that, then, you know, when I was still working on it.” But I mean, I have pieces going back from the 15th century, and all the way up, you know, to very contemporary pieces by very, you know, great contemporary authors. So, you know, in a lot from the 19th century, of course, where hysteria was the kind of diagnosis and for women with migraine, and what I did come to realize is that that’s the stigma right there, you know, the woman’s disease, and the fact that I think the large misunderstanding of migraine stemmed a lot from that period.
Joe Coe 06:59
That’s really interesting. Not surprising that a philosopher grappled with migraine. So have you found that a certain type of author or genre has lend itself more to exploring migraine?
Kathy O’Shea 07:14
You know, obviously, poetry and fiction. I would say, there were four or five novels that I’ve excerpted that I was really surprised I didn’t know existed with their main characters, you know, suffering from chronic migraine. And so that surprised me that there were that many novels themselves. And I, I heartily recommend the full novels, you know, not just the excerpts that I had, you know, was forced to include or only include But then a lot of, you know, short stories, too, and a lot of essays. There was a wonderful, you may be aware of this, but I hadn’t been but a wonderful series in the New York Times on migraine for a period of time, and a number of wonderful essayists had contributed to that. And I have a couple of those in the book as well.
Joe Coe 08:03
And have you found migraine being used as a literary device or as a way to explore things that might not actually be about migraine?
Kathy O’Shea 08:13
In poetry for sure, that’s an excellent observation. But definitely in poetry, it’s often a metaphor for many other things. And and also the way that, you know, it’s largely described through metaphor, right. I mean, that’s one of the things that I speak to in the the whole idea of there’s a big controversy about whether or not language really can describe illness. And Virginia Woolf had a wonderful quote about that, and the inability how so little had been written about the the pain of headache and the pain of illness, when so many people obviously suffer from it. But also there’s a wonderful work by and the name of the of the actual nonfiction book won’t come to me now. But her name is Elaine Scarry. And she wrote a wonderful piece about where she does not believe that language does lend itself to try to describe migraine. I tend to debate that a little bit in my preface, because I feel like it sure as heck comes closer than anything else. And that’s what I have found so beautiful about it, I mean, that they’re human, not everybody is going to connect with every piece in this book, but they’re going to find they’re going to find their pieces. And that’s the main goal. You know, just find the pieces that really strike a chord with you and where you can say, “That makes me feel less alone. That makes me feel like somebody gets it.”
Joe Coe 09:36
So Kathy, doing this work, have you come across really bad examples of how migraine was portrayed in literature? And how do we as a community combat that?
Kathy O’Shea 09:47
I think what I’ve seen, I have seen migraine portrayed in, say, romance novels before. And, you know, I think that we combat that in the same way that you mentioned we combat all of the misunderstandings and the invisible nature of the disease and the stigmatized part of the disease. And that is to find different ways of educating. And I think by grappling with pieces that try to just say what a migraine is, they they tend to, you know, they overdramatize they over sentimentalize, if you will. And it’s you find it kind of dripping with sentimentality and stead of having a genuine quality to it. One of the novels I excerpt is sort of satirizing that vein, and it’s called Migraine Mafia. It’s an it’s hilarious novel, I mean, there’s a lot of truth in it. And it’s very serious on the one hand, but there’s some hilarious scenes about the way that people will often stigmatize it and misrepresent it. So you know, there’s this one character, her sister in law of the person who’s suffering just says that she, you know, she gets migraines, really, because her she goes to bed with her hair wet. And that, you know, I mean, so I mean, and she firmly believes that and she said that she met a neurologist once, and therefore, she felt like she knew and understood migraine, you know. So I think it’s a case of where we have to combat it with the, quote unquote, real stuff. You know, we have to combat with, you know, finding real literature that really finds what I think strong literature does, but also what migraine does, and that is migraines, a lot about ambiguity. And great literature is about ambiguity. It’s not about black and white. And it’s not never a clear picture and never get from point A to point B. And that’s what great literature is like, too. And so it deals with the gray areas of of the experience, I would say, if that answers your question.
Joe Coe 11:59
It totally does. So interesting. And I’m smiling. People can’t see me smile, but you hear it in the voice because hearing the character talk about wet hair and migraine reminded me some of something my great grandmother told me when she was alive, who I loved dearly. She told me that I was losing my hair in my early 20s because I think too much and I should just relax and not think so much and I wouldn’t lose my hair. I was like, no, no, I don’t think it works that way. But it might be bad advice. Sure, sure. Definitely. So Kathy, that leads to my last question, how has this book helped you? And how do you want it to help others?
Kathy O’Shea 12:40
I so wanted to help others. I mean, I guess it’s helped me because I developed such a passion for working on it when back when I was in, and I needed a passion at that point. You know, I had been teaching at the community college where I teach for, I think, 32 years, but at that point, and I needed a spark, I needed something new and something I could really dive into. And I would find myself going to Barnes and Noble after work every day just to dig into it and lose myself in it. So there was that, that’s what it gave the project itself gave me. Then once it was published, what it’s given me as a whole wonderful opportunity to talk with so many other people that are in my situation, or similar situations or who you know, either know someone or have, you know, experienced them themselves. But what I want it to do is this is the real truth of it, is when you create a book like this, and it’s by an academic publisher, you’re not in it to make any money, I mean, because there’s just no way you’re going to. But what I do want desperately is to get it into the hands of those who can most benefit from it. And to find those pieces that whether it’s a migraine sufferer or a loved one that wants to learn more about it, or medical professionals who have have already spoken to and reviewed the book saying that they wish they’d had it and had the empathy that it creates back when they were practicing, you know, in neurology and how to specialty areas.
Joe Coe 14:16
Well, what I appreciate and I’m thankful for, Kathy, is that we need to combat stigma and misinformation in all different ways. So through medical education, through literature reviews through actual literature reviews, like you did, looking at migraine through literature, and not just research literature, reviews, through music that we listen to, the TV shows that we watch all the culture that we consume. So this is definitely part of that movement to better understand a misunderstood disease, and you’re contributing to that and we appreciate that effort. So thank you so much.
Kathy O’Shea 14:52
I really appreciate that. Thank you.
Joe Coe 14:54
Kathy, how can people find your book?
Kathy O’Shea 14:56
The Kent State University Press is probably where you’re gonna get the most stable price on it and is the original price. Amazon has been fluctuating nonstop. Sometimes you can get it for, you know, less than the regular price. But sometimes recently it’s shot up to like $55. So I’m having people trying to get people to kind of, you know how you can look inside the book so you can kind of get a feel for it there. In the very near future, we’ll be able to buy it right directly from my website because I’m redesigning my website at the moment. But also it’s available like you know, believe it or not Walmart, you know, Barnes and Noble. I mean, you know, any, and I always encourage independent bookstores, of course.
Joe Coe 15:37
Thank you so much.
Kathy O’Shea 15:38
Thank you. Real pleasure.
Joe Coe 15:42
Thank you so much for listening to this episode of Talking Head Pain, the podcast to confront head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.
Narrator 15:56
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
In the second part of our look back at 2022, we hear previous guests talk about topics such as mental health, social media, and being a guest on Jeopardy while having vestibular migraine.
Talking Head Pain 2022 Highlights (Part 2)
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:10
Hello, and welcome to part two of our 2022 recap for Talking Head Pain. Let’s start by listening to Dr. Rosendale talk about the Pride Study’s Research that explores trauma and migraine in the LGBTQ+ patient community.
Dr. Nicole Rosendale 00:24
Well, I think there’s a couple of aspects of this research that really highlighted and kind of emphasized things that we may have peripherally known, but now we kind of know it with with more insecurity or or more, we know it a little bit more definitively, if you will. One of the things is that social stressors and experiences of discrimination as folks navigate their life affect migraine severity, and disability and frequency. And so that is something that has been looked at in other communities, particularly predominantly cisgender women. There’s been some studies looking at how childhood experiences of trauma affect migraine later in life. But that hasn’t really been looked at within LGBTQ individuals. And so this was a step towards understanding that connection a little bit more clearly. The other piece of this that I think is really important is that an aspect of this study that we looked at was really access to care and kind of what kind of care folks with migraine were receiving. And one thing that arose out of that was there are certain barriers that people access. And there are, you know, not everyone who had migraine headache who was interested in seeing a neurologist for their headache had access to that, right. And when we looked at specifically what medications people were using for migraine, there were some interesting trends that we saw. And a lot of people using kind of over the counter medications or using more of the natural remedies like riboflavin and magnesium rather than using more pharmaceutical treatments. And so I think that that’s just a piece for folks who are experiencing migraine to really understand, whether you’re LGBTQ or not, is really how to advocate for yourself and how to advocate and ensure that you’re getting access to specialist care if that’s what you would like and if that’s what you need. And also that within that there are opportunities for access to newer medications or potentially more efficacious medications to help reduce the impact that migraine has on day to day life because migraine is quite disabling. And it can be a big component of how people live and change how people function.
Joe Coe 02:40
Living migraine can affect your mental health. Let’s take a look back at the conversation I had with Shruti. She opens up about her mental health and her migraine journey.
Shruti Suresh 02:49
I don’t think I’m still ready to go back to work, which is terrible. I really worked hard to learn. I worked hard to do what I do. And right now I feel like I suck at pretty much everything.
Joe Coe 03:03
I would disagree because you just flip that script, you’re telling your story to help people, as opposed to telling other people’s stories to help people, which is a really powerful thing to do. And not everyone can or is willing to do that. So I would give yourself more credit.
Shruti Suresh 03:22
Thank you. There’s one part of the brain which says this, but the migraine side of it says no, you know what, just stop doing whatever you’re doing, and I am still not okay, because it’s social anxiety. A lot of things that I haven’t been able to explain to anybody, just a whole lot of mental health combined, you feel tired all the time. How do you justify that? How do you explain that to someone? I look okay, I look fine, I don’t look sick. I don’t know what sick is supposed to look like. But I feel sick pretty much all the time. That is really hard to explain. For me, when I make a commitment to work, I want to fulfill it 200%. And if I’m not able to do 100%, I quit that day, the day I realized that I can’t. So I’m that kind of a person. Even with academics, I was pretty much like that. It was difficult for me. And it still is difficult for me. Because I know now that any moment, today, I won’t be able to give my 100%. I cannot make commitments. And so I don’t want to commit
Joe Coe 04:20
Has that crept into other parts of your life?
Shruti Suresh 04:23
Every part of my life, especially motherhood. I didn’t really think about migraine when I decided to have a child, which a lot of people do. I don’t know why I didn’t think about it, maybe because I was in India. And that time, I was told that whatever I was feeling was normal. But after I had her, I’ve had that fear, you know, maybe I can’t commit to this. Maybe I’m not going to be a good mom. I’m probably not going to be a good wife. I can’t tell you how many times these thoughts just plagued me middle of the night, I’m just sitting up thinking, “What will happen if I run away today? Because I don’t think I’m making my husband happy. My parents are not happy. So my child’s probably gonna grow up and hate me because I’m going to be in bed most of the time. Or I’m irritated and annoyed.” Because mood disorder comes along with it. I get annoyed when there’s a lot of noise, when people are moving around a lot, when people are eating. These are things people don’t understand. Because they think again, “Oh, you’re just being irritated and you’re just being too picky. You’re just exaggerating again.”
Joe Coe 05:22
Physical therapy is one of the many different tools that one can add to their toolkit. Hear from Sam as he shares PT tips for migraine patients.
Samuel Kelokates 05:30
I think for people with migraines, and it’s a little bit different when you get into tension headache and cervicogenic headache. For migraines, I think a lot of people over stretch their necks. I don’t actually think stretching is necessary for a lot of people that have that neck pain or shoulder pain and they feel that migraine coming on. And they spend a lot of time trying to stretch that neck pain away. But what they’re probably actually doing is actually irritating the tissue there and sensitizing the area even more. And then they’re making it easier to trigger that migraine from a musculoskeletal trigger. What I really find is more effective is low intensity cervical strengthening exercises, enough to not stimulate, you know, intense muscle contraction that might make the migraine or headache worse. But would end up making the muscles stronger and feeling more stable with the neck.
Joe Coe 06:19
Let’s listen to Nicky who told me about the experience of being contestant on Jeopardy while having vestibular migraine.
Nicky Smith 06:25
Yeah, it was definitely intense. Imagine, you know, the brightest light you can imagine right over your head right in front of you, you know, moving lights, moving cameras, all that. Pretty sure I blacked out through a good chunk of it. I don’t remember a lot of it. So it’s funny watching yourself later on TV and being like, “Oh, at least I got that answer right.” Things like that. The interesting part is I had so many people, even in the migraine community, you know, that work with migraine organizations being like, “You look so normal up there, you look like there was nothing going on.” And in my head, you know, obviously rooms spinning just, sharp like razor pick in the head and throughout the spine, you know, super dizzy, super nauseous, super fatigued, but you can just look completely normal. And so I think just people to see that, that someone can you know, you’re on live TV look like everything’s under control, but in your brain is chaos. So that was interesting. But just you know, the best part about it was being able to talk about the condition, having so many people reach out and talk about how isolating it is, how they’ve never heard dizziness, or, you know, vertigo or even like, yeah. How often you even hear the word migraine on TV or in movies? I think other than Lucille Ball and Arrested Development, the word Vertigo is, other than that Hitchcock movie, which isn’t really even about it. So just to be able to talk about a condition that’s so prevalent, that affects so many in such a horrible way, and that’s not mentioned at all was great just to have so many folks be able to connect. And you know, we’re able to, I’m planning to start a support group in the Bay Area from this, I’ve been able to just get, share and connect with so many folks with resources from this. So that was the best part about it. But Jeopardy, you know, it was a whirlwind. I can, you know, get them more into that. But it was definitely a blur, to say the least.
Joe Coe 08:04
The wellness journey can be a stressful and challenging path for many of us that live with migraine. Let’s take a listen to Dr. Buse as she gives us an insight into that journey. Why do you think Dr. Abuse it’s important to view wellness and health as a dynamic journey and not a linear one?
Dr. Dawn Buse 08:19
Wow, Joe, that is a great insight. And I’m so glad you’re sharing this because if you didn’t share this, a listener might go through the same experience and think, “Oh, I’ve totally failed,” or “This is terrible. I shouldn’t even continue this I shouldn’t even started this.” So sharing this experience is really important. Your experience is more common than than just going smoothly in fact, so we can start because many of our listeners may have migraine or other chronic pain conditions or may love somebody with migraine or chronic pain conditions. As you said the nervous system of someone with migraine just loves consistency, everything being the same. So even if it’s not the healthiest of patterns, it’s going to want to stay with that pattern. It’s the pattern it’s used to and any change in any direction seem to be something that can increase migraine activity. So interestingly, when it comes to stress, not only anrise in stress for a prolonged period of time, but a drop in stress may trigger increased activity, less caffeine, more caffeine, less sleep, more sleep, all of these changes, even though we can say, “Okay, well, less stress and less caffeine and more sleep, those are good, those are good, we want to do those things.” Well, the nervous system at first may revolt a little bit and say this is a change. And you may see a little bit more migraine activity. But I and Joe, when it kind of encouraged you to push through that phase and know that in fact, these kind of half a dozen healthy habits that matter really do make a difference in migraine management, they affect the hypothalamus, which is part of the place where migraine attacks get started and get regulated, these do matter. But you’re gonna get a little bit of that hump. And it may feel like two steps forward and one step back, or just maybe like steps back. It sounds like for you, it just was like, “Oh, this is just worse.” So please have faith that scientifically, we know this is the right direction, and kind of move past that. And really the trick in kind of healthy habits, they’re they’re a long game. This is a marathon, this is a lifetime change. So just because we slip up one day or one week, in fact, I feel like we deserve a break one day of the week or one week or the month. You know, for example, say we’re trying to eat healthy and we end up being you know, one cookie out of the box. Well, we just want to say okay, we ate a cookie. And back on track. Nothing is wrong with eating one cookie. But we don’t want to say I’ve totally messed up here, I’m just getting the whole box and add another box and, and type of ice cream because it doesn’t matter. We just want to kind of recognize when those step back happen and just stay on track. And that’s the definition of resilience. Resilience isn’t smooth sailing. Resilience is when you get knocked down, you get back up, and you just have to get up more times than you get knocked down. And people with migraine are good at this. They get knocked down all the time. They had these relentless waves of migraine attacks that never stopped coming migraine unfortunately, is not a curable condition, but it’s much more of a manageable condition than it ever was before. We know more we have better treatments, pharmacologic and non medication treatments, we can manage it better than ever before. But people with migraine are pretty used to this like the challenges keep coming. The waves keep coming. And that’s where I like the the quote by Jon Kabat-Zinn who says you know, “We can’t stop the waves from coming but we can learn how to surf.” So a lot of life with migraine or other chronic illnesses is learning what what how do we make our surfboard, what kind of keeps us going, what is our purpose, our meaning our happiness, our joy, our healthy habits that keep us going. And those are what we need to identify.
Joe Coe 11:53
Social media has played a key role in helping people with migraine find community. CarmenRose told me about why she thought it was important to start posting about her injection days on social media.
CarmenRose Fiallo 12:02
Yeah, so my goal with social media was always to bring visibility to invisible disabilities. I felt like there was so much I was going through that people didn’t know. And it was amazing to connect with other chronic migraine folks online and they got it but I still felt like my family, my friends, anybody who just hasn’t experienced it in their personal life or is not with somebody. You know, even if it’s your mother or if you don’t live with that person beyond that you really don’t get it and so I just I really wanted even just within my own circle at first for some people to understand what I’m going through. I talk about being in pain a lot. I don’t think people realize I have to do these injections once a month, I have to go through all this. You know what I had to fail certain medications to get there, like that whole process that we don’t even talk about. And so it started with wanting to bring that visibility and it turned into something that I didn’t even realize because so many people have messaged me saying you know, “This is so amazing to see you do this. It makes me feel less alone,” and I didn’t like, the beginning of my migraine journey was really lonely because I didn’t feel like I saw people that looked like me going through this. Even just people my age. I thought a migraine is something like middle aged people get. I definitely didn’t think of it as anything somebody in their 20s could be experiencing. I just didn’t see it. I definitely had never seen anyone do an injection when my neurologist was talking about it. I immediately went home and like, did YouTube videos like, what does that look like? Because I’m very visual. And I’m also very anxious. So I like to know a lot before I go into it. Like, if I can literally be from beginning to end, see what I’m going to do, then I’m going to feel so much better before I do it. So I also was like, I’ve never seen anyone do an injection, I can’t be the only one that’s curious about what it looks like, like, what if somebody is on a medication and their next step is the injection and they’re like, what does that look like? Like, I wanted to see what that looks like. So I wanted to show other people. And I didn’t think it would be as powerful was but people have, you know, felt really valued and seen. And I feel really silly whenever I posted because my pain fate like I don’t edit it. It’s just the raw video of like me doing it and my pain, especially with my most recent injections, because I’m on a new one. It’s they’re more painful. And my pain face was like so silly. I almost didn’t post it. And people were like, “No, that’s exactly what I look like at home too, though. Like, that’s real. That’s what it is.” And I’ve seen a lot of other people, you know, sort of edit out their face or do other stuff. And I’m like, no, this is what it is, this is how real it is. I want people to see what I have to go through to not even be cured, right? Like it’s not even like these injections, then fix everything. This is what I have to go through to just help my baseline. And tips? Well, I think like scientifically, they say, you know, leave your injection out, you know, for it to warm up to room temperature. So I hope everyone’s doing that. That’s apparently supposed to help. I think my favorite advice, though, that I got on one of my posts was this woman told me that she shuts all the blinds, shuts all the doors and just screams. She was like, “I just do the injection and I just scream. I shut all the doors, all the lights, just like block out all the noise. And I just like do it and I scream.” I was like that’s not a bad idea injection day or not. Like I’m going to take take you up on that. Like whether it’s an injection or not.
Joe Coe 14:49
Thank you for listening to Talking Head Pain in 2022. We’ve learned a lot and grown together this year. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe and I will see you next time.
Narrator 15:03
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network
On this very special episode of Talking Head Pain, Joe walks us through a few of the standout moments from the past year of incredible conversations with health care providers, migraine patients, and chronic illness advocates. With more than 50 episodes released in 2022, this was a memorable year to be a part of the Talking Head Pain community. Thank you for being a member of this fantastic network!
Talking Head Pain 2022 Highlights (Part 1)
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:10
Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. In 2022, we released over 50 episodes covering topics that range from medical racism, COVID, martial arts, going vegan, disability, motherhood, being a man with migraine, career pressures, mental health, and understanding treatment options. We spoke with neurologists and health care providers from around the world and produced episodes at both the American Headache Society in Scottsdale, Arizona, and at the European Headache Congress in Vienna, Austria. And most importantly, we connected with diverse and powerful voices in the migraine community. Thank you for being part of this community. Thank you for listening and for sharing the podcast. Here are some highlights from this past year. Unfortunately, we couldn’t highlight all 50 plus episodes, so please make sure to check out talkingheadpain.org or visit Apple or Spotify to catch up. To start us off, let’s listen to this clip from the American Headache Society Symposium in Scottsdale, Arizona, where I’m joined by Dr. Matthew Robbins.
Dr. Matthew Robbins 01:22
Well, I think there’s a lot of relationships between the two that we’re still learning a lot about. So I think you can kind of divide it up into a few categories. One is getting headache as a COVID symptom. And that seems fairly common. Often, a headache can really outlast the viral presence itself. And we know a lot about that in the headache specialist world because of this condition that’s been identified for now many decades called new daily persistent headache, which was first identified as a headache syndrome that continued ever since it started and often is associated with a viral infection, including things like Epstein Barr Virus and other viral illnesses and headaches specialists are very comfortable seeing patients with that, although treatments haven’t been so greatly developed for such a condition. Although we’re getting there in that department. But headache is a fairly common symptom of COVID. Sometimes it’s the most prominent symptom of COVID. And often people who already have migraine, migraine is triggered during a COVID infection. And even in some people, those who have migraine that’s episodic, a viral infection in sort of a sizable minority of people can kind of transform migraine into chronic migraine, which is something that we absolutely need to prevent. So I think it’s very important to identify and follow up people who get COVID and experience headache, or have migraine that might be frequent already very closely to be on top of this. The next thing to think about is headache as a symptom of long COVID. You know, what we found out is that it’s not the most common symptom of long COVID, it’s probably somewhere along the sixth or seventh most common symptom, even neurologic symptom with long COVID. So one of the reasons for that is that headache is just so common overall. And because, you know, in any given way you slice the population, you know, 12% of people have migraine in any given year, that’s a lot of people. So sometimes, because it’s so common in the first place, it’s hard to show that signal in long COVID. But it does happen, you know, why it happens? You know, we don’t know. And it could be that COVID itself leads to some auto immune activation with inflammation or release of these molecules called cytokines that could be in the nervous system and lead to pain. And the same thing could happen in joints and in other parts of the body. So why could it not happen and lead to headache. It could be that it induces some auto immune response that might be more vulnerable in certain genetic situations. So one thing that I’ve seen is that people who don’t really have a history of migraine, but then they develop COVID, they develop headaches that are frequent thereafter that resemble migraine, you often find that they had a migraine family history. That’s what I’ve seen in my practice, often. Not always, but often. And then there are other mechanisms that could be at play. And then the other thing that often comes up that we are asked all the time by patients and others is that what about headache and vaccinations for COVID, especially now that we have a relatively newer bivalent booster and how safe is it for our patients? And what are the chances of getting headache? You know, headache is a fairly common symptom after vaccination, but it is probably hundreds of times more common with COVID itself. So the relative protection of vaccination for headache is very strong. And one could even argue that this new daily persistent headache syndrome for which we don’t have a known treatment for well, maybe we could prevent it in some people if they get COVID vaccinated in a way. So it’s almost like a form of preventing what we know to be a very difficult to treat headache condition in this new daily persistent headache.
Joe Coe 04:46
What is holding space and why is that important for people with chronic disease? Let’s listen to Namira explain.
Namira Islam Anani 04:52
Yeah, it’s think about this a lot. Because I get where I was at back then. I also recognize the ability to even get into law school, to be able to do the work that I did during law school, to come out of it, to become a licensed attorney, and then do the work that I’ve done around, you know, nonprofit founding an organization doing anti-racism education, I know it needed a certain level of hustle and also just acclimating, right, or adjusting or navigating some of these spaces where I didn’t have as much agency to change some of the norms. And so that’s something that I think about a lot now where it’s like that almost a hazing process, right, when you get into certain spaces, where they’re like, “Oh, you need to put in the time, or you need to put in the effort, you need to go through this really difficult thing, or to make it to a place where there’s more flexibility or ability to adjust.” I think what I would tell myself especially is that it wasn’t that something was wrong with me, when these spaces were not designed to accommodate. Something is really wrong with the way society is structured when accessibility and inclusion and really making sure that people have what they need is seen as a burden or seen as inconvenient. That’s not something that, I had definitely internalized that when I was when I was younger, that it was just me, and something was wrong with me. And so I think there’s that self compassion, that grace that, you know, I really hope people who are coming up through these really rigid spaces that they are give themselves. And especially that piece around needing to do certain things in order to survive in a space, just having compassion for yourself based on that. Because there are things that we would want to do differently. But we don’t always have the power to change. I’d also really advocate for taking the time, taking the time to really focus on yourself to think about just because if people are pressuring you to do things a certain way, do you have to do it that way? Are there ways to also advocate within? Like a setting like law school setting for accommodations, to even ask for those things, I don’t think I felt that I had the agency to ask for these things. So I would have told myself like if the issue is with society and the structures, we’re living in, like ask, advocate for yourself, make sure that you are getting the benefits of the work that people before you put in to make sure these spaces were more accessible.
Joe Coe 07:18
Living with chronic disease, it can be a battle to find hope, and realize that things will get better. Hear from Carl as he talks about how he bottles up hopium and why he coined that term.
Carl Cincinnato 07:30
Yeah, I mean, it’s funny. When I was in chronic pain, and was experiencing high levels of anxiety. And because I had a chronic health issue that was out of control, I was depressed. I think that’s a really healthy and normal reaction to a bad situation. And like most people under torture, it’s usually only a matter of time before you crack. And I’ve likened migraine to getting hit with a baseball bat in a pitch black room where your attacker has night vision goggles, can see exactly where you are, and can whack you at regular intervals. And you just never know when it’s coming. First time you get hit, you fall to the ground, you crawl back up, you sort of put on a brave face. The second time you get hit, you might feel a little bit dizzy, you may vomit from the pain, but you get hit time and time again over weeks and months and years. And you just end up in a corner rocking back and forth, you are a mess. And I think that that’s normal. And when I spoke to Professor Dawn Buse, who’s a specialist psychologist that focuses on migraine, she told me that one of the most liberating things that I’d ever heard, and she said, “That that’s normal. Carl. Like, you’re going through a really difficult time with chronic pain, you’re allowed to feel that. You shouldn’t be ashamed of feeling that.” That was a really important message for me to hear at that time. And that’s why I’m sort of sharing it now. Because I think that it’s normal to feel depressed when you have pretty awful situation. And you shouldn’t let that feeling make you feel worse, to come back and answer your question about hope-ium. Hope-ium is really important. It was something that I sort of held on to and I think it’s really dangerous if you lose hope. And I would always try to maintain that the glass is half full. I can’t say honestly that I always felt that way during the most difficult times. But that’s where having people around you. And having a support network. And being able to reach out when you really need it is so important.
Joe Coe 09:26
Now let’s turn to Cannon, who explained the impact that migraine can have on a skyrocketing career.
Cannon Tekstar Hodge 09:32
I think I was 32 when I was diagnosed with chronic migraine. And my career was skyrocketing. I had started social media for a luxury store in the city called Bergdorf Goodman. And I had done that for five years. And then I had accepted a job as the head of social for a startup. And that’s when my migraine disease had kind of chronified and morphed and to vestibular migraine and the bottom just fell out. It was the most humbling time of my life. And usually when, you know, I hear people now say that they’re humbled when they get an award or when they’re honored, I’m like, “You have no idea what it’s like to truly be humbled.” Because when you lose the ability to walk, and you have to have a physical therapist teach you how to walk down the hall again, after you had the most fun life in the world. That’s humbling. I also have gastroparesis. And the things they make gastropresis and GI patients go through is truly humbling. And then also the whole process of going from having this big career and being in the process and going to parties all the time and having people contact me all the time and invite me to stuff, then just the silence of not really hearing from people. And so many of my friends and acquaintances no longer communicating with me because I wasn’t trendy. That was humbling. Also, when I was able to get a job again, my salary was so much less. I think I took it was like a $40,000 pay cut the next job that I had, just so I could start working again. That was incredibly humbling. And going from overseeing teams and having teams of people reporting in to me and then being kind of back at the bottom of the totem pole. That was incredibly humbling. It took me seven years to get my career back to where it was before migraine and the job that I started in August. I’m back to overseeing teams and doing all of that. I worked at an agency before that as well. So I guess it took me about six and a half, seven years to get back to this place. And to be making as much or more than what I was making when I was 32.
Joe Coe 11:59
In this clip, Dr. Alan Rapoport tells us about medication overuse headache, what it is and how it can impact the patient.
Dr. Alan Rapoport 12:06
Great question, hard to answer in less than the two hours that we have. But I will take a stab at it. First and foremost, we have to make the diagnosis. Whether we liked the term MOH, medication overuse headache, or we like the old term, rebound headache, or there’s a better term out there that we haven’t quite settled on yet. Whatever it is, we know what it is. We can see it, we can smell it. And we need to diagnose it. And that takes education. Because believe it or not, there are a lot of doctors and nurses that don’t know what that is. They’ve never heard the term. They don’t understand it, let alone know how to treat it. So we have to make the diagnosis better. And you talking about it a lot, writing about it a lot, me writing about it a lot, talking about that. We’re just about to submit a paper on medication overuse headache to a prominent journal and talk about how to diagnose it and some ways to treat it. And more research, clinical research has to be done because we believe that the newer drugs that work on CGRP, and blocking it in some way, are so powerful, that it really helps to treat medication overuse headache, but it hasn’t been proven yet. We see signs of that in the trials that were done just to get them approved for treating migraine. And we see that patients had come into these trials with medication overuse headache, when their migraine is successfully treated, the medication overuse headache tends to go away. But it wasn’t a trial for treatment of medication overuse headache. So it’s not good enough yet. So we need more trials, we need to convince the companies that have these very good drugs that they need to study it. And then we really need to educate the doctors about how to treat it. So it’s simple. Everyone needs to make the diagnosis, doctor and patient. And both of them need to work together to use the right drugs or the right techniques. It’s not just drugs, to get the patient better. And I will say this, for all those years that I’ve been practicing as a headache specialist, I struggled tremendously because I didn’t have the right preventive drugs. I had some preventive drugs, but they didn’t always work in medication overuse headache. So my job was to convince the patient to use fewer Acute Care Medicine pills in the month and take these preventives, some of which had side effects. Very, very, very hard to do. Now, I have a reasonable chance of saying to a patient, “I’m going to give you this pill once a day or once every other day, I’m going to give you this shot once a month, or once every three months. And you will probably have fewer headaches, and then you should use fewer of these acute care medicine.” It’s like a whole new world for me. What I used to struggle with has gotten easier for me and better for my patients. Now not everybody knows what I do about it. So that’s the problem. We need to educate the doctors and the patients.
Joe Coe 15:55
And in this clip, let’s hear from Jaime Sanders about the impact of being a woman of color with migraine has had on her and her community
Jaime Sanders 16:02
Positively, I think what it has done for me, and I think for a lot of the community that doesn’t feel like they’re represented, say, in like support groups or advocacy groups is, it validates their experience and their journey. It was important for me specifically as a woman of color to highlight what it’s like for me, for my family, what legacies I come from, and what I’ve had to learn growing up, and how that impacts the way I interact with the healthcare system. It’s very different for marginalized groups. And that just was not being talked about. And I felt like I needed to make sure I uplifted those voices, because if I’m going to be in this space, and advocate, I have to make sure I’m true and honest about those experiences that just are not discussed. I also wanted to make sure that I use this opportunity to talk about communities that were just completely ignored. It was my responsibility to do that. And especially since growing up, I received my health care at a federally qualified health center. And I saw low income marginalized communities get great care. And that specific center made sure that everyone that worked there, from housekeeping up to the board, represented the community that they were working in. It was extremely diverse. And I was able to see physicians and dentists and nurses of all races. And that really informed the way I saw healthcare growing up from the age of 5 to 18. That’s a very impressionable part of your life. And I knew what those communities needed out of those centers and what they got from them, and how important it was to have that level of care. And I saw that was lacking in the migraine and headache community. And I wanted to make sure that these groups I was affiliated with or working with knew that it’s more than just those that you seem to target, which are those with commercial health insurance and have access to transportation and healthy grocery stores and are able to manage triggers because they have access to healthy foods. There is such a larger community out there that is so neglected, we have to make sure that we’re reaching them as well. So being able to bring that to the table has been extremely positive for me. But on the flip side, it has been extremely burdensome and exhausting, because I tend to be the only chocolate chip in the cookie a lot of the times and not having other BIPOC in the room that can speak to what I’m speaking to and support that and have the safety of that understanding is frustrating.
Joe Coe 19:02
Thank you for listening to part one of our 2022 Talking Head Pain recap. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.
Narrator 19:16
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
On this episode of Talking Head Pain, Joe is joined by Emily Klein, Professor of Education at Montclair State University, a migraine patient, and activist. Emily has lived with migraine for many years, and her patient journey echoes the experiences of many. From parenting with migraine to worrying about job performance, her story is one of perseverance and strength.
Join Joe and Emily as they discuss being an educator with migraine during the pandemic, parenting with migraine, and the importance of having the right health care team in your corner.
From Shrinking World to Expanding Opportunities: A Conversation with Migraine Activist Emily Klein
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Emily Klein 00:09
Four years ago, this new line of treatments came out that were monthly injections and my neurologist worked with me to get me on those as soon as they came out. She worked with my insurance company, she did a great job. And that was when my life started to change.
Joe Coe 00:24
Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m here with a dear friend, Emily Klein. She’s a Professor of Education at Montclair State. She’s an activist, a mother, and an all around great member of our local community. And I’m so delighted that she has joined me today on Talking Head Pain. So Hi, Emily, how are you doing today?
Emily Klein 00:56
Thanks, Joe. I’m doing great. How are you?
Joe Coe 00:59
I can’t complain. I like to hop in and ask people a similar question. Can you describe what your worst migraine attack was like? What went through your head? And what did it make you feel?
Emily Klein 01:10
My worst migraine attack happened after I’d started moving from sort of monthly migraines, to intractable migraines. And this one lasted about three months, and I went on repeated rounds of steroids. I remember what went through my head was utter panic, that this was the state of my life that I was going to be living with forever, that I would not be able to keep my job. And I would not be able to raise my child. I have a real memory of sitting in the shower, like trying to take a shower, sitting in the bottom of the shower, and throwing up and really thinking, “I don’t know how I’m gonna get to the next moment.”
Joe Coe 01:57
Oh, wow. You brought up a lot that I think our listeners can really relate to; the life impact, career, being a mom. What did migraine take from you before you got it under control?
Emily Klein 02:10
Migraine took away from me, for years really, any beliefs that I could take a risk professionally, that I had to be very, very careful about doing only the bare minimum that I could do in my job. That was really profound. I mean, I was very lucky that I had tenure when this really started to get bad. And so I had some job security. But, you know, I was a pretty ambitious person in a lot of ways. And for a bunch of years, I really was afraid to do anything creative, risk taking, become more activist in my work. Because of the implications, I just didn’t know, if I was going to be able to get up and function. I would say it took away a lot of my confidence as a parent too. I was really, really scared that I wasn’t going to be able to parent my child and that my child would be really harmed by growing up with a mother who couldn’t function. And so there were literally days where I would be like throwing up and trying desperately to get it together to like go to pick up and not say that I was an incredible pain.
Joe Coe 03:17
Where did you find support? And how did you get through those moments?
Emily Klein 03:20
I will say there were a couple of things. One I have, I had a friend from high school who had been going through something very similar. So I found some other people, I didn’t know that an intractable migraine existed. So I found some other people who had gone through this. That was really helpful for me. Social media was really helpful for me in that, like I could hear from large numbers of people all around the world who were going through something that was really similar. And I had a neurologist, after a couple of failed attempts at finding neurologists who worked well with me, I found my current neurologist, who is amazing. And her attitude of we will just keep trying was really, really helpful and really important to me, because I was in a state of despair. I was like this is, I mean, we’ve tried everything. There’s nothing left. So that feeling of having someone who said like, “We’re going to figure this out at some point,” was really, really important to me.
Joe Coe 04:16
How are you doing today after being with that neurologist?
Emily Klein 04:20
I say it’s almost got to be about 10 years now since that first intractable migraine. I am doing really well. I would say that I am very functional. That doesn’t mean I don’t have headaches or migraines, they are part of my life. But my neurologist and I have moved to once every six months, which was a big step from every, you know, literally at some point it was like every month, you know, and then every two months, three months, we’d moved to every six months check ins. They tend to be very quick. I haven’t had to adjust to medication in a long time. I just finished writing my third book. I took on a new position at work. I just got a new grant, so I’ve been able to add back all of these things professionally that were really important to me. I have a great relationship with my 14 year old, who does sometimes make fun of me for often saying that I’m tired, but I think sees me as a pretty functional, healthy person, I exercise every day, I’ve run races, I’m in physically good, good shape, and I see friends. So all of the things that I really thought my life were over for me, are very much a part of my life now.
Joe Coe 05:24
I think it’s so important for people to hear, Emily, because I think a lot of us and I’ve talked about this a little bit in the past that we settle when we have a chronic disease. And we don’t realize, we don’t even realize that we’re settling until we get the push from that neurologist, in your case, or the friend or social media. And we could often do a lot better than what we’re doing if we get the right provider and the right treatments.
Emily Klein 05:50
Yes. And, you know, it’s I say that I felt like it’s important. And I actually wrote about this a little bit that my life was shrinking, like it was shrinking and shrinking and shrinking, my life kept getting smaller and smaller. Because I was so afraid of pain. I mean, pain is, you know, I don’t know how to explain what pain does to you psychologically, emotionally, physically, on every level. And it’s almost impossible to explain, like, you just want to not be in pain, right? So you’re not existing in a state of wanting something to happen for you. You’re really existing in the state of like, I want this bad thing not to happen, you know. So I feel now that my life is expanding again. And that’s been incredibly powerful. And I was really, really hopeless for a while.
Joe Coe 06:36
How long did it take to get to a place where you feel like your life is expanding? How many treatments did you have to try? What went through your head, your neurologist’s head? How did you tackle this problem?
Emily Klein 06:49
I had been on a cusp, I think of really new treatments that didn’t exist 10 years ago when I started so I literally have gone through the non medication treatments, right. Everything from chiropractor and reflexology to acupuncture, yoga, every kind of massage, cranial sacral, Reiki, I did the whole thing. I did every elimination diet, and I did them for long periods of time. I’ve been paleo, I’ve been gluten free, I’ve been, you know, every single one that you know, night shades, the whole nine yards. Some crazy ones in there as well. Intermittent fasting, I tried everything that I could think of related to that. Supplements, things like that; magnesium, CQ10, first line treatments that they will give you for rescue medications, you know, some that are sort of injections or pills, pills it turned out I couldn’t take because I would get nauseous so they then we tried the injections. And then the nausea and vomiting was so bad that I would often end up in the emergency room. Not so much from the pain, which was horrible. But you know, I could sort of live in a cave in my head. But the the the nausea and vomiting would get so bad that I would become severely dehydrated. And so sometimes after about 24 hours, I would go into the emergency room and I had all sorts of severe daily anti inflammatories that we tried and and all the stuff that we had in our packet, right for trying with migraines, I had tried a bunch of those. And I had one neurologist who was like, “I just want you to come off everything completely.” And I was like, “Okay, but I have to be able to like, what’s gonna happen when I’m in the hospital,” right? That was really terrifying for me. So I went to my neurologist, and she was like, “Okay, we’re not going to do that. Because you have to have something to keep you managing through an acute and chronic thing.” And that was when we were trying now then steroids rounds and rounds after steroids. And at one point, we thought, okay, we’re gonna have to put me in the hospital for 72 hours for an IV steroid course. And my internist was like, “I really don’t want you to do that. I’m very nervous for you physically and emotionally what what that would look like.” And at that point, that one broke, but it was then about another four years of on and off trying every single thing; daily medications that made me lose language, which is very hard when you’re a professor. And I, you know, I was good at like making jokes. You know, I go in, and I’d be like, “What’s that thing? You call it with the kids in the classroom, teaching!” You know, and so I was really trying to figure out like, how to use humor to get around the fact that I had lost all this language. And then about four years ago, this new line of treatments came out that were monthly injections, and my neurologist worked with me to get me on those as soon as they came out. She worked with my insurance company, she did a great job. And that was when my life started to change.
Joe Coe 09:27
Amazing. And it’s something that I just, it’s hopeful because there are a lot of people who haven’t gotten to that point yet where they’re even some people don’t know that these newer medications exist.
Emily Klein 09:37
And I remember my neurologist reminding me that that a migraine is a neurological event. Because you forget that and so it affects all these different centers of your body in ways that are really profound and it does feel like a mini stroke in some ways, and in some cases, and the world is really trippy. I mean it’s just bizarre when you’re in it and you know some of us get migraines with about the pain which I’ve had, often I’ll get the secondary symptoms before the pain comes. And then I’m like rushing to get to a cold room and be with myself and ice. But yeah, I mean I will say I had cobbled together and I have cobbled together many, many different strategies. I have daily medications, I exercise every day, I’m very careful about caffeine and water, and hydration, and certain supplements. All of that stuff is really, really good. And I don’t want to underestimate it. But there are these new medications that are coming out all the time. And one of the first things I always say to people is you have to be in with a really good neurologist who is paying attention to this stuff, and try new on the newest, latest things, because really, the research in this area has expanded tremendously in the last couple of years. And it makes such a difference for someone to say, “There’s something else in my pocket. If this doesn’t work, I’ve got something else in my pocket.” And I think too often people get the message that there’s nothing left for them to try. So important. And it’s something I relate to. We have a lot of life to live. And we you know, don’t want our worlds to shrink, as you said, Emily. It’s important to figure out how we take care of ourselves. And, you know, you mentioned all the different ways from finding the right physician, to looking at the right types of self care that work for you from a mind body and physical perspective. So I think that’s really important for us to hear. I appreciate that. I want to talk a little bit more about being a mom and living with migraine. How did you discuss migraine with your child? Yeah, it’s a tough one. You know, I grew up with a mom who was sick, like really severely ill. And so I was always very afraid that my kid would think of me as a sick person. And that that would become the sort of primary identity. That really scared me, right. So in some ways, I think there were years where I overcorrected, where I just did not tell them anything. And I really kept it such a secret, and was able to sort of pretend otherwise, between I had a babysitter who had helped me. There were days where I would get Sam on the bus, go to the hospital, spend the day in the emergency room with IVs, and then pick them up from school. And I was really terrified of that. So now over the last couple of years, I’ve started to talk more openly with Sam about having migraines, because I don’t think it’s the thing to be ashamed of. And I want them to have an understanding of how invisible illnesses and disabilities may be around them all the time, and that people need extra support and care around that, right. And so now we do talk about that. And I try to balance the times where I may need extra help with the look at how resilient and tough your mom is, with the our bodies don’t always do what we want them to do. And we are more than our body. We’re more than our illness, we’re more than our disability. But all of those are also really important to our identities as well. So, you know, I try to talk about all of that. And it’s complicated, right? And especially in adolescence, it’s almost impossible to imagine that your body doesn’t work really well all the time. On the other hand, teens understand a lot body’s doing things that they don’t want them to do.
Joe Coe 13:29
That is true. Huge thing with migraine, and the pandemic and the stress of shifting targets when it comes to how educators are educating how did that impact your disease? And did provide more opportunities or less for you to talk about it with students? Did you see more people talk about disability and chronic disease like migraine?
Emily Klein 13:55
Yeah, it’s been a hard journey for me. So I’ll tell you the good and the bad. In the bad level, one of the first years where this got bad, I think it was that first year, I mentioned to a class that I had a doctoral level class that I was struggling with migraines and I had stated there were days and I’d come in and I’d say I’m doing my best today, but I’m struggling with migraines. And I remember I got one student review, anonymous review, that said, “It was pretty disappointing to get a professor who was never at her best. It would have been really interesting had she not had all of these A B and C issues,” and it really hurt me and it scared me, right? Because it’s always your biggest fear that people will see you as inadequate if you’re admitting to or coming to terms with that. But that was 10 years ago, and I’m you know, listen, I’m 50 years old. I have a lot of expertise and wisdom now and I feel pretty confident in who I am and the work that I do and how good it is. So that helps me a lot. And I have also thought over time that we do a disservice to our students if we don’t talk about and become transparent about human moments. That doesn’t mean that we’re not working I’m very hard and trying to bring our best and whatever. But I do think that’s important. And during the pandemic, we were all struggling. So to make transparent, “Listen, I’m showing up here at my best. But there are all these ways in which I’m struggling.” And I came off one of my last daily medications during the pandemic, when I had the time really in those first couple of months to see what happened if I wasn’t taking a quarter of this dose or something. I wasn’t saying that to my students, but I was certainly talking about how my body was feeling. We did a lot of check ins around stuff like that. And then part of the problem with Zoom and people with migraines is that Zoom made migraines really bad. So my headaches and my I have a herniated disc in my neck that got very bad during during that period, and I had a lot of daily headaches, which were were really tough. And so we did talk about that. We talked about eye breaks, things that we could do for our eyes. A couple of times, I always talk about my migraines now that I suffer from chronic migraine, and that there may be some days if we’re on Zoom, there may be some days where that’s a struggle. And I had a couple of students, I had a couple of students who would say, “I’m getting a migraine, I’m going to turn off my camera and lie down, but I’m still here.” I know I would always say, “Listen, you know, you actually get to get off Zoom. If you’re having a migraine, you don’t have to stay in class if you’re in the middle of a migraine.” And that’s, you know, I feel pretty comfortable doing just that. And I just want to listen and I understand that as well. Because when I’m in the middle of a pain attack, I love to listen to audio books or anything that can both help my part of my brain manage my body a little bit. So, you know, I had that happen with students and I certainly understand it. So I think we went through all kinds of stuff. But a lot of it was just figuring out how to pay attention to our bodies in new ways and adjust to the incredible stress that we were all under, which affects our bodies in many different ways. Even though stress is not, I want to emphasize like, it is not that you have migraines because you are stressed out. That used to drive me crazy. I mean, I am stressed out but it has nothing to do with why I have migraines. Stress can contribute or make worse the migraine but I have plenty of days where I’m on vacation and feeling great. And I’m still getting migraine.
Joe Coe 17:04
There’s a, I don’t know who said this, but a really smart person was talking about causes and triggers when it comes to migraine and stress is a trigger and you think about it as a glass of water and the triggers, you’re just adding a drop, adding a drop, and then it overflows and that’s the migraine attack. And for some of us we start with half a glass every day, some of us a quarter or glass, some of us you’re in chronic or intractable migraine, you’re already at the brim so anything can put you over and continue that pain and agony.
Emily Klein 17:32
Absolutely. I remember this is when I left one of my last neurologists, I was in this intractable migraine, I went to this doctor and he said, “You have to give up caffeine.” And I drank, you know, two solid cups of caffeine a day. And I was already in an intractable migraine. And I was like, and he was like you have to stop cold turkey. And I literally thought I was going to die. I mean, it was so awful. It was really like maybe this isn’t exactly how we do it when we’re in the middle of the most acute thing that you can be in, you know. So yeah, I really relate to that what you just said.
Joe Coe 17:50
I start doctor’s appointments with new ones, like listen, I’ll do a lot. But don’t tell me I can have coffee. And like that’s the non negotiable in my life. Like I’ll adjust a lot but I need the coffee. Life is not worth it if I can’t have it. I mean, I say that now who knows, but.
Emily Klein 18:25
No, I mean, and I think that, you know, there are people who are trying to live this perfect life and it becomes so internalized, you know, and I tend to think of that as a very western thing that we internalize it, it’s all about the individual. If you only did all the things that you were supposed to do, you wouldn’t have disease or illness, it wouldn’t exist. And so we tend to blame the individual instead of their- first of all, it’s very complex. And we have to live a life, right? And it has to have some joy too. And whatever your joy looks like. And my daily cup of coffee is part of my joy when I like get out my Wordle, I put on NPR and I start to listen, you know, that’s part of my joy. So, you know, you do have to balance people’s real lives and real selves against this. And we also can’t blame everything on individual choice.
Joe Coe 19:15
Managing triggers can be a difficult or impossible task for a lot of us. I asked Dr. McAlister to explain how he talks to patients about managing their triggers.
Peter McAllister, M.D. 19:26
Well, it’s interesting in that many of the things that we thought were triggers all these years turned out not to be triggered so much but just associations. For example, eating some chocolate was much maligned in the migraine community. “Oh, you can’t have chocolate it’ll trigger your migraine.” Turns out that’s by and large, not true. Many women have menstrual migraine. We know that. Many women crave chocolate as a hormonal change around their period. And then if you have chocolate around your period when you’re going to get your migraine anyway, you incorrectly start blaming chocolate and some fascinating work done up at Harvard University suggested that many of the old things that we thought were triggers are not so much. There used to be, when I first started, whole diets of things to avoid, if you had migraines. We’d hand out a list and it would have nuts and it would have red wine vinegar, and chocolate and 30 other things. And that kind of took away the fun of eating in my opinion. It turns out that some people can have a food or other trigger, but it’s a what we call N of one experiment, meaning it varies from patient to patient. If you happen to know that every time the barometric pressure comes in, you get a headache, that’s probably a trigger for you. If you know that onions consistently give you a headache, that’s probably a trigger for you. But it doesn’t mean you have to avoid lots of things, because at one point, we thought they might have been triggers.
Joe Coe 20:52
What would you tell someone who’s listening who is in that despair moment that doesn’t see the light that isn’t on the right treatment?
Emily Klein 21:00
Yeah, yeah, it’s really hard. Because when you’re there is always a time when it’s hardest to reach out for more, right, it’s hardest to do to make any change. I really, really think you have to have a doctor that you trust. I just, I really do. And so you need to interview doctors, and you know, bring a friend with you when you interview your doctors as well. If you’re feeling like you just can’t do it. There were times when I would say to my friends, like, “Make sure that I schedule three doctor’s appointments this week, I just need someone to make me do it.” Somehow the scheduling and getting there, you know, I can cancel like one of three things that I schedule in general. And so getting someone to help you get in and get the care you need, with someone that you trust, with someone who is convinced that they can help you, too. If someone tells you that they cannot help you, they’re out of options for you, then that’s on them. But it’s just not the case. And to be really easy on yourself when you’re in the acute and trying to fix period, right? Part of the problem is with any medication, you have to try things for a couple of months. And so it’s very tempting to say after like two weeks or a week, this isn’t working. I know it’s not working. And even with my monthly injectable now, the first couple months, I felt like it was getting better. And then I went to my neurologist and like, “I think I’m seeing a change, but I’m not sure and it’s still not enough,” and she doubled my dose. And since then it’s been golden. I really went from daily migraines down to you know, maybe once a month, right? So that’s a life changing thing. And so you know, to keep giving feedback, and be honest, I think a lot of us try to please our doctors and tell them what we think they want to hear. And it’s okay to push back a little bit and say like, it’s a little better, but it’s not enough better. This is not enough better, and keep playing and be patient and I would sometimes put it in my calendar like okay, I started this on this, I am not going to make a decision about how it works for two months. Whatever the doctor tells me is like, we really won’t know for two months, and then I’m going to put it out of my head. So I’m not going to, after three days, go into a pit of despair because it’s not on my calendar. I’m not supposed to feel despair for two months. I’m just going to suspend disbelief until I get to that point.
Joe Coe 23:13
As Emily points out, it’s important to give medications time to work. Dr. McAlister shares advice on navigating this wait and see period.
Peter McAllister, M.D. 23:21
When I’m starting a patient on a new treatment, particularly a preventive treatment, it really depends on the type of treatment and we can divide the world in terms of new and old treatment. New means post 2018 with the first of the monoclonal CGRP first shots, and now the CGRP pills, those new drugs work pretty darn fast. Some people they work as soon as a day or two after you start them, many in a week, most in a month. But even those I’ll give a couple of months just to be sure because there’s always a bell shaped curve of life and some people are going to be a little slow. Contrast that with the old migraine meds topiramate, amitriptyline, the beta blockers, they took every bit of six weeks or more to even start working and we’d have to give those at least three, four, five even six months before we were starting. With Botox injections, we didn’t see the big change in until after two cycles, right so that was 24 weeks in. I still use the old meds. I still use plenty of Botox but one of the many nice things about these post 2018 meds is they’re fast so you can kind of know within weeks or a month or so in most of your patients whether you’re getting somewhere and that’s really nice.
Joe Coe 24:37
I love that technique. I haven’t thought about that. It makes a lot of sense. Not that organized. So I appreciate people that are that organized that are going to put it in their calendar me like I am not going to say this sucks. Until I gave it enough time to decide if it sucks or not. I love that. Was there anything that I didn’t ask you, Emily, that you would want me to ask?
Emily Klein 24:59
I would say the last thing is it’s really tricky with friends. And I think that everyone’s had a headache. And I get a lot of, “I don’t know how you do it.” And that does sometimes make me feel better. Because sometimes I’m like, “Yeah, I am amazing. I am, I am working very hard.” On the other hand, people do not want to hear about your pain every single day, right? And so being judicious around that so that you get enough support without feeling isolated, but not also then driving everyone around you crazy is a really tough line. And it’s hard to fix. It really is because when you’re in pain, you don’t want to talk about anything, but how much pain you’re in. So I’ve really struggled with that. I don’t have answers. I’m sure you have other guests who can come in and answer that a lot. But it is something that I think all of us who struggle with migraine disease really pay attention to.
Joe Coe 25:45
Well, Emily, thank you so much for joining me on Talking Head Pain. I love talking to you. And I like talking about this stuff with you even more. It was a really really interesting discussion. And I think folks will get a lot out of it.
Emily Klein 26:00
I really appreciate it. Thank you so much for having me on today.
Joe Coe 26:04
Pleasure. Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time. This season of Talking Head Pain was made possible with support from Amgen, a sponsor of the Global Healthy Living Foundation.
Narrator 26:29
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
On this episode of Talking Head Pain, Joe is on location at the European Headache Congress in Vienna, Austria talking with Dr. Messoud Ashina, Professor of Neurology at the University of Copenhagen, Denmark, and the Director of the Human Migraine Research Unit at the Danish Headache Center and Department of Neurology, Rigshospitalet Glostrup.
Join Joe and Dr. Ashina as they discuss the interictal burden of migraine and the need for continued research that gives patients hope.
Understanding Migraine Burden and Looking Ahead: A Conversation with Messoud Ashina, MD, PhD, DMSc
Narrator 00:00
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Joe Coe 00:09
Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m live at the European Headache Congress with the preeminent neurologist and researcher, Dr. Ashina. How are you doing today, Dr. Ashina?
Dr. Messoud Ashina 00:30
Thanks, Joseph. I’m doing fine.
Joe Coe 00:32
So nice to have you. Can you tell our audience a little bit about you and what you do?
Dr. Messoud Ashina 00:37
I am Professor of Neurology at the Danish Headache Center, University of Copenhagen. I’ve been practicing neurology for many years, and started headache research back in 1995.
Joe Coe 00:48
And you’re here today as a researcher, as a professor, as a neurologist, what should our audience who are mostly patients, know about the research and information that’s being shared at this Congress?
Dr. Messoud Ashina 01:01
First of all, I would like to say that we are living now in a very exciting time for physicians and also most importantly, for our patients. Because our treatment opportunities are growing. We have much more to offer our patients compared to what we could do, let’s say 10 years ago, and this is great, really great. It’s quite rewarding to have patients coming back to your office happy with the treatment, which is efficacious, safe and well tolerated. It’s very, very important. Regarding the Congress, I can say two things that I found very interesting during discussion with my colleagues during the sessions. One is about interictal burden of migraine because what we usually think about migraine is attack related. During the migraine attacks, people with migraine, they suffer. They have a very bad headaches, or other associated symptoms that we know such as hypersensitivity for light, for sound, nausea, sometimes vomiting, but we don’t talk about interictal burden. And I discovered some new things also, that some of the these aspects of interictal burden should be addressed also when we talk our patients and also when we want to evaluate the treatment efficacy. I can give you one example. Some patients are waiting in anxiety to develop migraine attacks, and their symptoms expecting that attacks will strike on Saturdays, weekends, or could be activity related. So this situation related phobia, or you can also call it Cephalalgiaphobia. It’s very, very important, we should talk about that, we should address and find some solutions. And of course, the preventive treatment when it’s efficacious, can reduce this burden. This one point.
Joe Coe 02:53
So interesting, because as a migraine patient myself, I noticed when I started to travel more after COVID and restrictions were lifted, I was getting a lot of attacks. So I spoke to my neurologist, and I was like, “I don’t want to give off traveling.” That’s something that brings me so much joy. And he was able to switch my medications. And I’m here today in different time zones, not having those migraine attacks. So that’s a really important point for patients.
Dr. Messoud Ashina 03:18
Isn’t it great. I mean, yeah, it’s amazing, you know, because now you can get a treatment, which is designed to target the migraine mechanism. And it is safe and well tolerated. Some of the this new treatments can be also been taken during the certain situations, not necessarily every day. So this expanded armamentarium of all these medications and options, it’s something really important. I’m happy that I’m witnessing this process now. I mean, I’m living in this time, which is a really exciting time.
Joe Coe 03:50
I’m sorry, I got excited, you had a second point,
Dr. Messoud Ashina 03:53
But another important point, which brings me to the second point, but are we happy with the situation 100% right now? I would say no, because we still have some patients not really responding for these new treatments, or they have a partial response, or sometimes they have inadequate response. Right? And for these patients, we need to provide something new. Right now we can say, well, this is the last option. We don’t have any option, but this is not a good answer. We need to work more to do more research. And that’s why I’m very excited also, to hear about new things happening in our field in science. Science, headache science is extremely important. This is what brings knowledge, brings new treatments for our patients. That’s why I hear some interesting new targets. We are now the different stages. Some of them are on the preclinical stage when we try to address that certain molecules in context of migraine pathophysiology, mechanisms underlying migraine, and some of them in fact are now we’re testing them right now. So we are waiting for new data next year to see what the new knowledge, new science bring us, especially for our patients. So I’d like everybody to know that next year, it’s very, very important here because we’re going to have International Headache Congress in South Korea in September. And so we expect new data about new targets during this Congress. So I invite all my colleagues to come and visit, participate in this Congress, and all patients and people interested in migraine, to follow your podcast, Joseph, and to see what’s going on next year in September.
Joe Coe 05:38
Thank you so much for your time and for providing that glimmer of hope for those of us that aren’t responding to treatments, that’s so important for people to hear. Really appreciate your time and energy and all the work that you do.
Dr. Messoud Ashina 05:49
Thank you.
Joe Coe 05:50
Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.
Narrator 06:05
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
On this episode of Talking Head Pain, Joe is on location at the European Headache Congress in Vienna, Austria talking with Dr. Brad Torphy, Managing Director of the Chicago Headache Center and Research Institute.
Join Joe and Dr. Torphy as they discuss global access challenges and the need for more research on combination therapy.
Medication Access in Europe and America: A Conversation with Dr. Brad Torphy
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:09
Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m here at the European Headache Congress with Dr. Brad Torphy, a doctor who practices in the great state of Illinois,
Dr. Brad Torphy 00:30
So great to be here with you. Thanks for having me.
Joe Coe 00:32
So can you tell the audience a little bit about yourself?
Dr. Brad Torphy 00:35
Yes, as Joe said, I’m Brad Torpy. I’m the Managing Director of the Chicago Headache Center and Research Institute in Chicago, we have two offices, one in downtown Chicago, and one in suburban Naperville, Illinois. We see headache patients in our clinic. And we also participate and design a number of clinical trials for the treatment of migraine and headache.
Joe Coe 00:56
And you’re here in Vienna, what do you think patients should know about the research and information that’s being presented?
01:04
Well, Joe, one of the reasons I love coming to the meetings in Europe, certainly it’s great to hear some different perspectives. But one of the things that I, and I often do bring this back to my patients in Chicago, after attending a meeting in London a couple of months ago, I came back with the same bit of information. You know, a lot of times, we know that there are struggles with insurance companies, for example, to get some of the monoclonal antibodies approved or the gepants, these newer medications for the prevention and treatment of migraine. But what strikes me is that, actually compared to what patients in Europe have to endure, our patients actually have, arguably better access. For example, with Botox, in a lot of the countries, and the same is true for the monoclonal antibodies. In a lot of the European countries it’s actually required or recommended after anywhere from six months to a year to 18 months of being on a treatment, it’s actually recommended that the medication be withdrawn, to make sure that the patient still needs to have that have that treatment to lessen the frequency and severity of migraine episodes. And when I share that with my patients at home, they’re oftentimes struck because they say, “Well, you know, that’s, that’s very challenging. I don’t want to have to re-experience all those migraine episodes,” when in fact, in a lot of the countries in Europe, that’s actually required.
Joe Coe 02:24
That sounds like a cruel form of punishment.
02:27
Well, I think it certainly goes back to economic interests, and certainly cost cutting measures that are employed. But I think it’s just interesting to compare the two.
Joe Coe 02:38
So there’s a lot of research that’s being presented here today. Has anything struck you?
02:43
Well, I think one of the one of the areas that really struck me and is quite close to home for us in the Chicago Headache Center, is that there continues to be a call for more data and in fact, any data with combination treatment with Botox and monoclonal antibodies. A lot of our patients at home are able to have Botox with a monoclonal antibody, but a lot of the insurance companies don’t allow that to be covered. So in the headache world, there actually is not data that that shows that combination treatment and we’re very excited because we have a an investigator initiated study that’s going to start enrolling very soon at the Chicago Headache Center, where we will be taking patients who are on Botox, and we’ll be adding a monoclonal antibody. So we’re very excited to be able to hopefully offer some data in the next year that’s, that’s being called for with our colleagues.
Joe Coe 03:37
Yeah, it’s really important to have all different forms of treatment combinations and options available. So again, thank you for your time. It’s been a pleasure speaking with you.
Dr. Brad Torphy 03:46
Thanks, Joe.
Joe Coe 03:49
Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe and I will see you next time.
Narrator 04:04
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
On this episode of Talking Head Pain, Joe is on location at the European Headache Congress in Vienna, Austria talking with Dr. Dimos Mitsikostas, Professor of Neurology at the National & Kapodistrian University of Athens.
Join Joe and Dr. Mitsikostas as they discuss his research on the nocebo effect.
Discussing the Nocebo Effect with Dimos D. Mitsikostas MD, PHD, FEAN
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:09
Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m here at the exhibit hall of the European Headache Congress with Dr. Mitsikostas. He is a leader in the field of neurology, and he’s going to share with you a little bit about himself and what he’s hearing at the conference. How’re you doing today?
00:36
Fine, thank you so much for asking me to share with you what I’m doing back in Greece and what I’m doing here in Vienna. Starting from the first one, I’m Professor of Neurology in the Athens National and Kapodistrian University, heading the Headache Clinic at the University. I’m also chairing the Hellenic Headache Society. And currently I am Co-Chair the Headache Panel in the European Academy of Neurology. My prespective regarding headache is that migraine and tension time headache and cluster headache are social health problems that are underestimated and underappreciated. My job is focusing in, in migraine pathogenesis in clinical trials for migraine in nocebo and placebo phenomena, both in clinical science and in clinical practice. And that exactly was my topic in my lecture yesterday, in the European Federation Headache Congress in Vienna. The topic was the nocebo and placebo phenomena in clinical trials and in vaccine trials for COVID 19. That was a very interesting topic, at least for me, because several adverse events reported by participants in clinical trials for vaccination against COVID-19 experience adverse events that were related more likely to nocebo phenomena, instead of the mechanism of action of those vaccines. The same applies to all headache treatments, many patients experience adverse events that are mimicking the drug related adverse events, but are driven by the negative expectation that the offered treatment most likely will harm instead of help.
Joe Coe 02:59
That’s really interesting research. So essentially, what you’re saying is that patients should approach treatment with a positive outlook?
03:05
Yeah, absolutely. I mean, you know, that happened to all of us, some of us, we have that positive expectation that most likely the treatment will, will help in a significant proportion of patients that also participate in clinical trials have you know, hesitations about the the outcome, the real outcome of the offered treatment. And that happens every day into the clinical practice. In particular, when we are informing patients about the safety profile of a medication or if a treatment in general or often intervention, or the variant, simultaneously, we trigger nocebo like effects into the patient. So that’s why we have to be very careful in the way we are informing the patient about the safety of the offered treatment first. And second, building developing tailored strategies to limit the nocebo effect that is a physical phenomenon. It’s a cognitive behavior. We have to face it, and to limit it.
Joe Coe 04:18
Thank you so much for all the amazing work that you do for patients around the world. I appreciate they were able to catch up today.
04:23
Thank you so much. Thank you so much for for asking and for sharing the information related to my research and my clinical work. Thank you, again.
Joe Coe 04:35
Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe and I will see you next time.
Narrator 04:50
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
On this episode of Talking Head Pain, Joe is joined by Elena Ruiz de la Torre, Executive Director for the European Migraine and Headache Alliance (EMHA). Listen as Elena tells Joe about her career in migraine advocacy, what the EMHA does, and how she is working with European advocates to reduce migraine stigma.
Reducing Stigma in Europe: A Conversation with Elena Ruiz de la Torre
Narrator 00:00
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Joe Coe 00:09
Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m here at the European Headache Congress, and I’m delighted to sit down with the executive director of the European Migraine and Headache Alliance. Her name is Elena Ruiz de la Torre, and she is here to talk to us about what she does with her organization and what she’s learning at this conference. How are you doing today, Elena?
Elena Ruiz de la Torre 00:41
Very well, thank you very much. Thank you very much for inviting me today.
Joe Coe 00:45
Oh, it’s my pleasure. So can you tell our audience at Talking Head Pain a little bit more about you and your organization?
Elena Ruiz de la Torre 00:51
Well, yes, of course, I’m working in the field of advocacy for the last 18 years. We founded the Spanish Patient Association in 2004, and the European Migraine and Headache Alliance in 2005. Since then, I’ve been connected to Europe and to this advocacy work. Our main goal, I would say that it is change the future, to live a better future to the next generation. And we do our best, we’ll do everything we can. We organize all kinds of activities and projects to change the future. How can we change the future? Well, we are trying to organize projects that deal at policymakers level at the European Parliament. We go at least once or twice a year there. And we inform them about migraine, what migraine is. We need to change their minds, we need to convince them how difficult and how tricky this disease is. And we need to convince them that they have to approve the new treatments, for instance, because there is no access for finally, in the last 20 years, we have a new a CGRP therapy specialized for migraine. And now there is no access, which we are working a lot. And we have had, for instance, this year one project on access to care, we got many responses from all the patients and we finalized a knowing or we ended it knowing that in Europe, you need an average of eight years, five years to get a good diagnosis and three years to get a new a good treatment. Who would stay eight years waiting in a waiting room waiting for a good treatment? How many days are in eight years of one patient full of pain with this explosive brain? Is it fair? Why don’t we have this treatment? Why don’t we have it easily? Why do we have such a big stigma that they don’t consider that they have to put some budget on this new treatment? We developed this project on access to care in Europe, we got some results. And we went to the European Parliament to present them. We wrote a statement in white paper. And then we have been in several countries in Europe, presenting it at national level. We were in Italy in January. And I’m delighted to say that if we presented it on a lounge there on a Thursday on Monday we were called from the Congress of the deputy asking us to organize a scientific committee to talk about migraine. And only a month ago they approved migraine as a social disease. So we are doing-
Joe Coe 03:35
I followed that work in Italy, it’s amazing what your organization has accomplished and that campaign of eight years thinking about all those moments that are lost in eight years and the pain and suffering and the quality of life that we’re not looking at so that campaign which I’m also familiar with from the waiting room perspective is a really powerful image and really appreciate that work. So you’re here in Vienna, and presenting and here as an advocate, what should patients, people living with migraine who aren’t here, understand what’s happening? What are some of the the interesting pieces of information that you’re learning and or are going to share?
Elena Ruiz de la Torre 04:14
This question is very important because we all deal with the fact that, people with migraine, we all think that we are alone in the world. Because we live it alone at home, hidden in a room. But there’s a lot of people working for us and researching about our disease. There’s a lot of people, a lot of scientists that are progressing on their research and all the knowledge and so on. So this conference here in Vienna is the conference that puts together all the science, all the neurologist, all the specialists in migraine, there’s nearly 2000 people talking about migraine treatments, the diagnosis, new how our brain works and so on so on. I always talk in with patient language with a patient language, I am patient and I am here representing the patient. So my role here is exactly that, to tell them all that the patients are here, and they for whatever they do, they need to count with the advice and the information of the patients. But in the scientific program, and this is the first time that it happens in the way in the last years, we have been invited to participate to the scientific program, and we have created an agenda around stigma. And when to open, we have work already on migraine at work, women and migraine, women at work, access to care. We have done several years, in several years about projects. But next year, we want to focus it on stigma, because what I see is that science has moved forward very well. We have advanced in science, in research. We have these new treatments, so on, but the social perception of migraine is the same one from 20 years ago, and also on policymakers, they still listen to us, like if we were those weak people suffering, just a headache a little bit stronger. And this is not. So I want to open a roundtable discussion here and Friday, with all those neurologists, and I will make some proposals there about the language. I think we need to make some changes. If we have been in the last 20 years, saying exactly the same things, or we change something or nothing will change in the future. So we, I’m going to propose to change some things when they speak about migraine, to let the society in general understand it a little bit better.
Joe Coe 06:53
That’s amazing. And I really appreciate, we appreciate your work and look forward to that talk. It’s important for patients to know that there are all these health care providers, like you said, here at this meeting from around Europe and the world coming together to help us feel better. And that’s ultimately what they’re doing. And I always when I come to these conferences feel really happy. Like there are people that want us to feel better. So if you’re feeling without hope, have hope.
Elena Ruiz de la Torre 07:22
That’s that’s exactly the point. You are not alone. There is people that you don’t see but they there’s quite a lot of people looking after us trying that we get better in the future.
Joe Coe 07:33
Thank you so much for joining us. It was an absolute delight.
Elena Ruiz de la Torre 07:36
Oh, thanks to you. Thanks to you for giving me this opportunity.
Joe Coe 07:40
Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.
Narrator 07:55
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
On this episode of Talking Head Pain, Joe is delayed at the airport. As he waits for his flight, Joe decided to connect with the community and share some tips for traveling with migraine.
Traveling with Migraine: Tips from Talking Head Pain Host Joe Coe
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:09
Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I am sitting here in an airport and thinking about how changing time zones can be hard even for those without migraine. I’m heading to the European Headache Congress and unfortunately was delayed and that caused me to miss a connecting flight. So I’ve have a bit of time sitting here in the airport to reflect on the ways that I manage migraine while traveling. So the first, which I found super helpful, is to talk to your neurologist or healthcare provider. I’ve been traveling more lately and noticed an increase in my attacks. By speaking with them, we were able to change up some of the medications that I was on to help me better manage myself while traveling. This open communication is so important because I shared with my provider that being able to go on these trips meant a lot to me, and that that is a piece of my quality of life that I don’t want to give up while living on migraine. So we were able to come up with a plan. The second is migraine brains like stability. So as difficult as it is, try to maintain a level of sleep. If you consume caffeine, the same amount of caffeine. Maintain your water intake. And while like many I sometimes like an alcoholic beverage, I try not to drink while flying or traveling because why dehydrate yourself. The next tip is get a good eye mask. Sleeping on the plane can be really difficult. And eye masks that blocks out light, earplugs, all those things can really help. And while you’re on the plane, make sure that you pack your rescue medications and everything that you might need on your carry on. Do not check your medications because you don’t know you may need them on the plane. The next tip that I have found to be really helpful is maintaining your nutrition. Sitting around looking at the food options here at the airport, and when it comes to nutrition, there’s not a lot, but you can find nutrient dense foods that can also help you stay hydrated. So look for things like fruit, yogurt, other things that are really helpful to maintain just a general sense of well being. And then last but not least, is embracing the process. Travel is exciting and also stressful. Think about the final destination. Think about why you’re embarking on this journey. The more that we destress, the better it is for our health. And we all know that stress and migraine don’t go well together. While things like my delay will happen, it’s important to realize that that’s part of life and go with the flow. Till next time. Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.
Narrator 03:05
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
This week on Talking Head Pain, Joe is joined by CarmenRose Fiallo, a migraine patient and advocate who documents her migraine journey on social media, showcasing the realities of living with a chronic disease.
Join Joe and CarmenRose as they discuss traumatic brain injuries, tips for injection days, and when to break up with your health care team
Taking the Shot: A Conversation with CarmenRose Fiallo
Narrator 00:00
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CarmenRose Fiallo 00:08
I remember them telling me like, “Yeah, you do this at home every month,” and I thought that was really scary. Like I was like, I have no medical background. I, you know, I wasn’t even good at math and science growing up and you think that I can inject myself at home.
Joe Coe 00:19
Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m here today with an amazing and interesting advocate, CarmenRose. Carmen is going to talk to us about social media, about her history, and about how she’s helped people deal with this chronic disease. Hi, CarmenRose, how are you?
CarmenRose Fiallo 00:47
Good. How are you?
Joe Coe 00:48
I am great. It’s been an interesting morning. But, you know, keeps the life going, those interesting mornings.
CarmenRose Fiallo 00:57
Absolutely. I’m really excited to be here.
Joe Coe 00:59
I like to start all of our episodes asking for folks to walk us through their worst migraine attack. What did you feel, what went through your head? Paint the picture for us.
CarmenRose Fiallo 01:10
Yeah, it actually happened recently. And it’s funny, I’ve been wanting, and when I say funny I don’t actually mean funny. I’ve been wanting to document a migraine attack for the longest time on social media. It kept being in my mind, like one of these days, I gotta show people what it’s like, because it’s all invisible. And the only time it gets a little visible is like just my partner sees it. So I kept telling myself like, one of these days, I forgot to do it. And then I woke up one day, I had come back from traveling. And most mornings, I start with a migraine and I wake up with a little bit of head pain. And then as I wake up, have some water, have some coffee, it will go away. So a typical migraine day. And I was like, I’m just gonna document it today. Today, it’s going to be the day. I had no idea the nail in the coffin was it was gonna be my worst one. But I, you know, took over the over the counter had pain medicine. I took abortive medicine and it didn’t work. I did peppermint oil, I was trying everything in my toolkit, in my little tool belt that I say. I couldn’t eat, you know, so I couldn’t take certain medicine, it was getting really hard. And I realized that was the worst I had was, it got to the point where I couldn’t stop moving like I was in so much pain that I physically couldn’t stop moving. And I started to like, I would sort of like tap myself or like, hit myself a little bit because it would distract me from my head pain. And I would like kind of rock back and forth. And I started like getting really vocal, and I was like, starting to scream and cry in the room because I just like I couldn’t just sit there like usually I just, you know, sit there, lie in pain and just try to make it go away. I literally couldn’t stop moving. I like got up but I went to get in the bath hoping that would help. Nothing helped. And I remember vividly feeling that was the only time I’ve ever felt like, it got so bad that I feel like my sense of reality was skewed a little bit. Like my migraine attacks come from like right behind my left eye, like they’re always behind my left eye. And that one really, really felt like it was behind my eye. And I remember getting so bad that I was like, “If I just could like get an ice cream scooper and scoop my eye out, then I think the pain would go away.” Like that’s how bad it got. And it felt in my head. Like, I just scoop out like my eyes and I’m good, the pains gone. Like I was in this this. This really really heightened. Just I didn’t feel like myself and I was in even when I was in the bath I couldn’t stop moving. I couldn’t stop shaking and I was crying. The only thing that helped was going to bed. It was one of those days where it’s like, you know, you hope it goes away overnight. And that was the worst one I had. And it got to the point my partner was like, you know, “Do you want to go to the hospital? Do you want to go to the ER?” I’ve never gone to the ER for a migraine attack. But I know there’s not a standard procedure at US hospitals for a migraine attack. And the sad thing is, I just was like, “You know what, I’m just worried that they’re not really gonna be able to help me I’m gonna get stuck with a really expensive bill. Like I feel like if we just stay home and I sleep it out like that’s gonna be fine.” I had a lot of people telling me I should have gone to the ER but I just was too worried that it was going to be too expensive for you know, not worth it. So luckily it went away overnight but nothing worked, literally nothing worked that day. It was just excruciating. And the first time I’ve ever felt like my reality was a little bit different because I was just so heavily in that pain.
Joe Coe 04:07
And how long were you dealing with migraine prior to this attack?
CarmenRose Fiallo 04:11
So this attack was just like a month ago and I was officially diagnosed in June of last year, so June 2021. But I’ve been experienced them since the summer of 2018. So this was probably like, really two years into experiencing migraines. They just gotten worse but that was the pinnacle the worst one for sure.
Joe Coe 04:33
How has chronic migraine changed your life?
CarmenRose Fiallo 04:38
Every aspect of my life. I’m at the point where like the main thing I can do is manage my triggers which has just totally changed my life and my lifestyle because I get let down migraines all the time. And let down migraine for anyone who doesn’t know is like when you go from high level of you know, stress to low level so it’s enough for me like if my partner and I go to the mall, and then we come home and I sit on the couch like that’s enough difference for my body I’ll get a migraine. So I have to manage every aspect of my life. I always say my joke is I’m like, I wish I could be like a normal 25 year old and like sleep in or stay up late or you know, be dehydrated, miss a meal every once in a while. But if I do any of those things, I’ll get a migraine like, I have to be so regulated. I have to eat all my meals. I have to drink over 64 ounces of water. I have to get all my sleep. I can’t oversleep I can’t do this. I can’t, it’s just so regulated. I’m like, what would it be like one day just to wake up and not take care of myself and then not be in pain, right? Because if I do that now I’ll be in pain. I’m life, other people do that. And they’re just dehydrated. They’re not in excruciating pain, like, what’s that like?
Joe Coe 05:41
I think about that, too. CarmenRose. And the amount of water, particularly when I travel, it’s like, you have to make sure that you’re drinking enough water, but then you have to make sure you have an aisle seat. Because if you’re drinking all that water, you’re gonna have to go the bathroom
CarmenRose Fiallo 05:56
Yea, where’s my bathroom. Yeah.
Joe Coe 05:58
So it’s a, it’s a wild world living with migraine. And you didn’t always live with migraine. I read that you were in a car accident that led to a traumatic brain injury. You have had some history with a second concussion after that. So how is that process from having traumatic brain injury, and then being diagnosed with migraine?
CarmenRose Fiallo 06:21
Yeah, so I got in, like I said, the summer 2018, I got in a really bad car accident. And I had the worst concussion of my life. And then it was the summer luckily, and I was working. So I just took work off, stayed in my bed in a dark room. And then once I finally started feeling better, I got a second concussion about two months later, and so they just compounded on each other. And I ended up having to take the fall term that was my senior year of college, I ended up having to take the fall term off and do an extra term. Cause I just wasn’t ready to come back. But it’s, it’s so the first one was what made it a traumatic brain injury. But with the second one compounding, I got concussion symptoms. And I didn’t know what post concussion syndrome was. Post concussion syndrome is just one of the symptoms don’t go away. But there’s no really timeframe for that. So I would see doctors afterwards. And they would say, “Yep, just give it some time. It’ll go away eventually, you know, my memories are gone. Give it some time, they’ll come back.” I’m really sensitive to light, “Give it some time, it’ll go away.” Six months later, I’m still asking these questions. It’s not going away. And this was really the first time I felt like I dealt with medical gaslighting because I had a team. And this was a team that I had not worked with before. I was in my college town. I had been in a car accident. This wasn’t like my normal team that I felt comfortable with and trusted. It was just who I got set up with after the accident. But they just kept telling me that my symptoms would go away and that it would get better. And that’s the hard part with this invisible stuff is it was hard for me to really explain what I was going through and the severity of it because none of the stuff was visual. You can’t see my nausea. You can’t see my dizziness. You don’t see the headache. You don’t see any of that stuff. And so it was a lot of like my own research. And so for most people, migraine is genetic. That’s the majority of migraine. I think the majority of it is genetic. I don’t have any family history. So my migraine comes from a traumatic brain injury. And so it’s just a little bit different than other people’s experience. And when I originally went to a neurologist, I said yeah, I’m getting a couple of headaches a month and I think I get a migraine or two a month. I just got a migraine was when it was really bad. I didn’t really know what a migraine was. I left that office and she told me you have chronic migraine because I was getting 15 migraine. Yeah, I had no idea that the headaches that I was describing were migraine attacks. And so I had it’s just interesting because a lot of chronic migraine symptoms and a lot of post concussion symptoms are the same or similar and they just compound on each other. Like my sensitivity to light and all my senses is really, really intense because of the post concussion syndrome. And when I have a migraine attack, it’s just even worse. So it’s been really, really difficult because it’s been a lot of advocating for myself and having, it took what really took it took me that medical gaslighting and then I took a couple of months to do research and find a woman of color neurologist, I wanted to find a neurologist that had similar identities as me and that was like the most affirming thing ever. I was in her office in and out in 15 minutes, she ordered a CT and EEGn put me on medication and was like, “Yeah, is there anything else you need?” And I was like, “No, that’s all I’ve ever wanted for the past three years. And you did that in 15 minutes.” So that was the life changing part for me was getting a good neurologist. But it took a really long time. I was probably experiencing headaches for two to three years before I got that official diagnosis.
Joe Coe 09:30
Isn’t it amazing when the system works.
CarmenRose Fiallo 09:33
I mean, I was like, stunned.
Joe Coe 09:39
The cause of CarmenRose’s migraine is more common than one thinks. I asked Dr. McAllister about the connection between traumatic brain injury and migraine.
Peter McAllister, M.D. 09:48
The most common traumatic brain injury has a little m before the TBI and we call that mild traumatic brain injury, that you know as a concussion. The number one symptom of concussion and indeed all traumatic brain injuries is headache. And then if you look at the science, the most common presentation of a concussive headache or a TBI related headache is a migraine. It’s a moderately severe, throbbing, often one sided with light and sound sensitivity and nausea. So having a concussion or other TBI can cause migraine. And it’s interesting to note that if you have to say identical aged people, and you bang their heads very hard, one of them might have a sore head for a day or two, and the other then has migraine after migraine. And what we’re finding now is that latter person was likely wired for the genetics of migraine. So often, even if they’ve never had a migraine before I say to them with their post traumatic post concussive headaches, “Anyone in your family have migraine,” and they say, “Oh, yes, my mother, my aunt, my brother all have migraines. I just never had it.” And we think here, the brain injury, the TBI, is just the match that lit the fire that was already in their genetics in the first place. But thing number two is that if you already have migraines, and then have the bad luck of having a concussion or a TBI, it tends to worsen the headache condition and the term chronification means to go from a small number of monthly migraines to a much higher number. And if you look at the risk factors, what are the risk factors for chronification of migraine? One of the big ones is having had a concussion or other TBI. So it goes both ways.
Joe Coe 11:33
So are migraines that are caused by TBI treated the same as migraines that are caused by genetic or environmental factors?
Peter McAllister, M.D. 11:42
Yes, we treat post traumatic post concussive migraines about the same way. It’s interesting, Joe, how many drugs are FDA approved for the treatment of post traumatic headache and the answer is zero. So what we do is we look at the way it presents. So after your concussion or TBI, if you have a throbbing, nauseous, light sensitive headache, we call that a posttraumatic migraine and we treat it like a migraine. If conversely, the second most common presentation is a dull mild to moderate band around the head. We call it a post traumatic tension type headache. So we really go for the symptoms, what we call the phenotype. How does it express? When it expresses like a migraine, we treat it like a migraine.
Joe Coe 12:27
It’s amazing. And I’m so happy that that neurologist shared about the headache days. And that’s something that we talk about a lot on Talking Head Pain, that we think about migraine as the days that we are incapacitated and can’t get out of bed. And those are obviously migraine attacks and migraine days. But we often, I know I didn’t for many years, the headache that I had almost every day, that was just a baseline headache. I thought that was normal. And it’s not normal, folks. So talk to your doctors, and if your doctors are doing what CarmenRose’s previous team did, find other doctors, because it’s really important to give yourself every opportunity to feel better. I want to switch gears a little bit CarmenRose, and talk about social media. I follow your journey on social media. I am really impressed with how you share your injection for your prevention treatment on social media. As someone who is needlephobic, I am, that has been something during my migraine journey that I’ve had to struggle and grapple with. And I went into an appointment when I knew I was going to get an injection. And I said to myself, “Okay, Joe, this is what your body needs. It’s going to help you.” Just trying to get out of my own head. So I think it’s really helpful that you share your injections on social media and walk people through that. Can you talk about your tips for injection day and why you started doing that?
CarmenRose Fiallo 13:59
Yeah, so my goal with social media was always to bring visibility to invisible disabilities. I felt like there was so much I was going through that people didn’t know. And it was amazing to connect with other chronic migraine folks online and they got it but I still felt like my family, my friends, anybody who just hasn’t experienced it in their personal life or is not with somebody. You know, even if it’s your mother or if you don’t live with that person beyond that you really don’t get it and so I just I really wanted even just within my own circle at first for some people to understand what I’m going through. I talk about being in pain a lot. I don’t think people realize I have to do these injections once a month, I have to go through all this. You know what I had to fail certain medications to get there, like that whole process that we don’t even talk about. And so it started with wanting to bring that visibility and it turned into something that I didn’t even realize because so many people have messaged me saying you know, “This is so amazing to see you do this. It makes me feel less alone,” and I didn’t like, the beginning of my migraine journey was really lonely because I didn’t feel like I saw people that looked like me going through this. Even just people my age. I thought a migraine is something like middle aged people get. I definitely didn’t think of it as anything somebody in their 20s could be experiencing. I just didn’t see it. I definitely had never seen anyone do an injection when my neurologist was talking about it. I immediately went home and like, did YouTube videos like, what does that look like? Because I’m very visual. And I’m also very anxious. So I like to know a lot before I go into it. Like, if I can literally be from beginning to end, see what I’m going to do, then I’m going to feel so much better before I do it. So I also was like, I’ve never seen anyone do an injection, I can’t be the only one that’s curious about what it looks like, like, what if somebody is on a medication and their next step is the injection and they’re like, what does that look like? Like, I wanted to see what that looks like. So I wanted to show other people. And I didn’t think it would be as powerful was but people have, you know, felt really valued and seen. And I feel really silly whenever I posted because my pain fate like I don’t edit it. It’s just the raw video of like me doing it and my pain, especially with my most recent injections, because I’m on a new one. It’s they’re more painful. And my pain face was like so silly. I almost didn’t post it. And people were like, “No, that’s exactly what I look like at home too, though. Like, that’s real. That’s what it is.” And I’ve seen a lot of other people, you know, sort of edit out their face or do other stuff. And I’m like, no, this is what it is, this is how real it is. I want people to see what I have to go through to not even be cured, right? Like it’s not even like these injections, then fix everything. This is what I have to go through to just help my baseline. And tips? Well, I think like scientifically, they say, you know, leave your injection out, you know, for it to warm up to room temperature. So I hope everyone’s doing that. That’s apparently supposed to help. I think my favorite advice, though, that I got on one of my posts was this woman told me that she shuts all the blinds, shuts all the doors and just screams. She was like, “I just do the injection and I just scream. I shut all the doors, all the lights, just like block out all the noise. And I just like do it and I scream.” I was like that’s not a bad idea injection day or not. Like I’m going to take take you up on that. Like whether it’s an injection or not.
Joe Coe 16:48
I might do that after this recording.
CarmenRose Fiallo 16:50
Right, like next time I have a migraine attack, I might just do that. I don’t know why I haven’t thought about it.
Joe Coe 16:55
What I’m hearing you say and reflecting on my experiences is that we need to use what we know helps us. So you found that you didn’t have resources, you didn’t see good resources around injections, you’re like, “I’m gonna take control of that and I’m going to show people so people like me that want to see it can find me on Instagram, and see the injection.” And I think that’s really important that you use that fear and anxiety that you experienced to create some change and help people in our community. So I thank you for that. I think that’s that’s amazing work. And I would want someone to come in like surprise me with the injection like you got it.
CarmenRose Fiallo 17:35
Yeah, see, at the end of the day, I just feel like when I’m at the point where I’m getting migraine attacks every day, and people always like, you know, how do you do it? And I’m like, if 10 seconds of pain, if it’s if you tell me that there’s even a possibility of relief. I’ll do it. Like 10 seconds of pain once a month, but you could find relief, you know, do it once a month. I’m like, yeah, I’ll do it. I’ll try it. It’s worth it.
Joe Coe 17:56
Some people don’t find it painful, which blows my mind too. So it’s like we don’t know, like you don’t know. You could be one of those people that it’s like nothing. And for a lot of folks I hear that is nothing. For some I hear that it’s momentarily but, you know, I think all of us have had a lot of exposure to getting vaccinated, COVID pandemic, we might not have really done that if we’re younger since we were in college. So I think that showed us that like this temporary injection is not that bad.
CarmenRose Fiallo 18:26
And I remember thinking when I first got it, I remember them telling me like, “Yeah, you do this at home every month.” And I thought that was really scary. Like I was like, I have no medical background. I you know, I wasn’t even good at math and science growing up and you think that I can inject myself at home? And I think that was what motivated me too, because I was like that feels really scary. But once she explained it to me, and I did it the first time I was like, okay, it’s a little intimidating the first time but it’s not scary in the way I pictured it when she first said was like you’re going to inject yourself at home. So I think too, I just wanted to show people it doesn’t have to be as scary as you think it is like, look, I’m a regular person doing it, right? I’m not like Khloe Kardashian on the ads. Like, I’m a regular person, real person that does it at home, and I just feel like I hadn’t seen that. And there were so many people that commented on it. And were like, “Yeah, you know, I do mine too,” and give me tips and just just knowing you’re not alone. You know, even the folks that were like, “I can’t give you any tips, it sucks and it’s gonna hurt but I’m there with you.” I’m like, cool. I you know, that’s okay. As long as I know I’m not in it alone. That is the biggest thing, especially with invisible disabilities. It’s like finding other people that get it without you having to explain it, like truly get it, that has been like the silver lining through it all. People are super, super helpful within the community. I feel like I’ve gotten the best advice from folks in the community just especially with like, chronic migraine specifically, because I feel like there’s we’re still like people don’t realize we’re still really early into research on chronic migraine in the brain. And there’s so much we don’t know. Talking to other people in the community that were like, “These are the steps I had to take,” was really helpful. And unfortunately I think the best advice which is like I feel sad that you have to give this advice, but it’s just the reality of our healthcare system is like, the more you learn insurance, and the way your insurance works, the better because there are certain things. And again, it shouldn’t be this way where we have to worry about coverage and price over our pain. But that’s the way our healthcare system is built. So you can either like be mad, and you know, really resentful, or you can just accept that that’s where it is. And as an individual, I can’t change that tomorrow. So I’m going to use the system to the best of my ability. And it really is like finding really good practitioners and people because I didn’t realize that like my neurologist’s nurse, she was in contact with my insurance to work on pricing. I didn’t know that they could even do that in house. I didn’t know that because nobody ever told me that. And like the stuff about like step therapy, like I had to fail two types of medications before my insurance would approve me for a more expensive one. And I just happened to have one doctor say, “Just so you know, you can count Tylenol, and Advil as one of those failed medications.” And so that got me quicker to the next step. Because those first ones that they want you to fail. You know, they didn’t work for me at all. But they wanted to get you through the cheap ones before the expensive ones.
Joe Coe 21:04
I went to refill my acute medication. And it was denied. And I said, “Oh, this will be fun.” And it was a prior authorization issue. And just like you’re sharing Carmen, my neurologist’s office, they have an office manager that handles all of that. And I messaged my neurologist, he got the office manager involved. And I felt so bad that they had to take so much time to deal with this, as opposed to actually treating me or other patients. And it’s the way that the system works. So they have delayed, I went to refill it over the weekend. Fortunately, I have enough of the leftover from previous refills. And I’m not like in agony. But I know people that use all of their medication. And when they get denied, even if it’s a week delay, that’s really detrimental. It’s unfortunate that that week saves this insurance company a ton of money. Because if you compound that week, by hundreds and thousands of people, they’re saving a ton of money by, you know, increasing my pain. And it’s just it’s it’s an unfair system. It’s not it’s not made to serve us. So you’re right, we we can be angry and upset about it. Or we can figure out how to navigate.
CarmenRose Fiallo 22:24
And by the way, the anger is like so valid and oh, you know, and so yeah, it’s so valid, like everyone has every reason to be angry at our healthcare system. And I was so angry in the beginning, but you just and so if you’re still not angry spot like it’s okay, I’m not telling you to get out of it. It’s just you eventually come to a point where it’s like, “I can either use this to my benefit or not.” I had a similar situation where I went three weeks without migraine medication, because my insurance was just taking their time approving it. And I kept calling my neurologist and their people kept calling it back and it took the insurance three weeks, they had approved it, it just took three weeks for them to communicate that to the pharmacy and for it to go through and for it to be picked up. And my most recent medication, I was you know, I got a new prescription. And I was really excited. And I was like I already knew I was like, “Oh, this is probably gonna take weeks to be approved and filled.” Somehow the nurse contacted my insurance, got it approved in 24 hours. And it went to my pharmacy on like a Tuesday. So I got, it was sent to the pharmacy, my pharmacy never filled it. For two weeks, I kept calling, they never filled it. So I had I called, I thought there was a mistake. I called my neurologist and said, “Hey, can you send in the prescription again?” Again, like you said, I feel bad that I’m messaging her, you know, “Hey, can you send it in again, not your fault. You did it right the first time.” Still, it didn’t and then eventually got to a point where I was going out of town to visit my in laws. So then I had to contact my neurologist again and say, “Hey, can you send it to a different pharmacy, I’m now in a different state. I filled here before I know they’re reliable. Can you again send it,” and then when I got to that state, and I filled it, they filled it incorrectly. They filled me for only one dose when my first month was supposed to be two doses. And I went back and said, “Hey, you’re supposed to give me two.” And they were like, “Oh, well, I don’t know if we can get it to you for free now.” You know what I was like, Whoa, you messed it up. And so I do all of this advocacy just to get my medication three weeks late.
Joe Coe 24:11
You were talking about how you were with a healthcare team that wasn’t really helping you? Do you have any advice for folks that might feel trapped? And that they can’t leave their current healthcare team?
CarmenRose Fiallo 24:23
Yeah, absolutely. You can. First of all, you can definitely leave your team, break up with your team, if you have to, I’m taking the time to find the best advice I give is find people with your identity. So whatever your identities are, so like for me, finding a queer doctor or finding a woman doctor or finding a woman of color, or all of those things, but any any sort of those things are things that will affirm you and things that you know, this person has been through similar things as me and they’ve experienced similar things and they get it. Having somebody that has similar identities as you has been life changing for me, and I think too, what I realized in this journey, I used to think like, “Oh, how can I be a good patient? How can I make my doctor happy?” And now I realized, like, as I’m getting new practitioners, it’s an interview with you as much as it is with me. So what can you do for me? You know, how do you help your patients with insurance coverage? What do you do if a patient doesn’t like their treatment plan, blah, blah, blah, you’re asking these questions. So I used to just think, “Oh, I’m going to find somebody, they take my insurance, I’m going to call it a day”. But I want to learn more about you and your values and how you approach the work. And I think the more I realized that I’m getting something out of it as much as they are, and I need to come these appointments prepared and ready. That’s been the most helpful thing for me is finding somebody that affirms me, because then they will the like my neurologist, I, it took me a couple months to find her, but she would give me free samples, whenever my insurance ran out of stuff, her nurse would do, you know, work overtime for me. And so when you find the right people, it’s absolutely worth it. And I went through multiple years of being with a team that didn’t work for me. And I thought that there was nothing different. And I think also too, when you’re disabled, it feels really hard, like, “Oh, I’m in so much pain, I don’t have the energy to call and do that.” But just take it day by day, you know, spend one day researching, then the next day, I’m just going to make the call. And then the next day, I’m just going to do the follow up paperwork. It’s worth it in the end, if you put a little bit of work, like ahead of time, the results you’re gonna get with the right team. I didn’t even realize how great doctors could be until I had a good doctor. And she was like, “So is there anything else that you need? Are there any questions that were left unanswered?” And I was like shocked when she asked me that at the end. But that should be standard. So finding people that really affirm you and your identities has been the best thing for me for finding a good team, medical team because that’s that’s life changing for your process, who your team is.
Joe Coe 26:43
So my last question thinking about those three weeks of not having medication and or a month or prior to getting on the prevention injection that you’re on, how has that changed your life finding these newer treatments that are working better for you?
CarmenRose Fiallo 26:59
Yeah, it’s been life changing. I feel like my partner has even told me that she feels like an older version of me came back because we interestingly enough started dating before I was officially diagnosed, she has seen the pre chronic migraine and now the beginning of it. And same with my family. And so it really has changed my life so much to get these and it’s even just like the hope of like okay, even if it doesn’t work 100%, if it works a little bit, it gives me the hope of like it can work in the future. And I think the best thing for migraine treatments honestly has been finding alternative solutions to like, I’ve tried a ton of Western medicine and a ton of it has been helpful. But I’m also more recently leaning into like, how can I help my body retrain itself, especially since my chronic migraine comes from an accident, right, not genetics. So you know, I was in an accident that tightens stuff up and made stuff sore. And so where do we need to realign stuff and I’ve seen an acupuncturist before, but again, because of insurance, it’s inaccessible and affordable. I can only go like five times for the year, which wasn’t super helpful.
Joe Coe 28:02
Yeah, thank you so much again for the great discussion.
CarmenRose Fiallo 28:07
Yeah, absolutely. Thank you for the opportunity.
Joe Coe 28:10
Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time. This season of Talking Head Pain was made possible with support from Amgen, a sponsor of the Global Healthy Living Foundation.
Narrator 28:31
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this episode of Talking Head Pain, Joe is joined by migraine advocate Candace Camper. Candace is the creator of an Instagram account that documents her migraine journey, as well as the ways in which her service dog, Clea, helps her manage migraine and seizures.
Listen as Joe and Candace discuss step therapy, getting prescribed injections, and how Clea plays a role in her health.
Accepting a Helping Paw: A Conversation with Candace Camper
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Candace Camper 00:08
I almost wish I can just video call my insurance company during my most severe attacks and say, “Do you want to prescribe the medication now? I think now would be a great time.”
Joe Coe 00:16
Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. Today I’m joined by Candace Camper, a wonderful advocate who teaches people about the beauties of having a service dog to help navigate life with migraine. Her service dog, Clea, helps her with tasks to support her during migraine attacks such as deep pressure therapy and grabbing water and medications for her. I’m delighted to have you on the show, Candace. Can you tell me a little bit about your migraine journey?
Candace Camper 00:51
So my name is Candace. I’ve had headaches since before I can even remember, but I will definitely say by age 12, that’s when I started telling my parents like, “Hey, my head’s hurting. My head’s always hurting,” and my dad could relate. He will say, “Oh, okay, yeah, just lay down.” But then, but these headaches, what I thought were headaches, were getting worse, more powerful, making me feel dizzy, you know, I couldn’t stand up straight. The light was hurting my eyes, just so much more severely than these headaches that I had always known. I kind of thought I was the odd one out in my family. Everybody had headaches and I had these headaches, that made me throw up. And so I never actually have been to a headache specialist. I will say I’ve only been to neurologists over the years. Besides you know, in recent weeks, I signed up with a headache specialist, but I’ve tried different medications for them to kind of treat them and initially before I started doing preventative injections, I couldn’t find really any relief. My attacks were still severe you know, they were still severe. Now I will say, you know, some days I would have you know a headache that wasn’t as severe and everyday was kind of different. No day was really the same but my attacks, as intense as they got, they were always the same vomiting, light sensitivity, and things like that. When I initially got a service dog I did not have migraine in mind at all. It was all about okay, how can this dog help me with seizures, how can this dog help me with this and that. And then after she graduated and came home on me, I realized a lot of the tasks she were doing could help me during migraine as well. I’m like, “Okay, I can’t bear right now like or the light is killing me. Can you please do this? Can you do this? You do that?” I’m like, Wow. This is actually working.
Joe Coe 02:18
That’s amazing. There’s a couple of things, Candice that you said, super interesting. One, many of us don’t see headache specialists. I haven’t seen a headache specialist. And I do this work. I have a podcast about talking head pain. And I haven’t seen a headache specialist. There’s so few in this country that many of us are going to be treated by neurologists and primary care physicians. Super interesting your connection to epilepsy and migraine, and your experience being treated for both diseases by the same type of doctor. But my experience has been that some neurologists specialize in epilepsy, some in headache and migraine. My brother developed epilepsy a couple years ago, later in life, and we’ve had these parallel experiences with neurologists. We see very different ones. So that must be interesting managing both conditions. Do you see one neurologist for both?
Candace Camper 03:14
Yeah, at one point I did go to an actual epilepsy specialist, but when I moved to Indiana, there was like, “Here’s a neurologist that within this many miles,” you know, that’s able to treat, you know, multiple conditions. And even now, I have a epileptologist. And working with a neurologist and stuff as well. But for a long time, my neurologist was treating both.
Joe Coe 03:31
Something I like to ask all of our guests, on Talking Head Pain, and you may have shared some of this, what is your worst migraine attack like? Can you walk us through what it felt like? What went through your head?
Candace Camper 03:42
So I will say my worst migraine attack among many, this I always said is my worst because I was in the hospital already. I was already impatient, which you would think probably is the best place to have migraine attack. But it was not at all. One because they stripped my medicine away from me to begin with. So the medicine that I was used to that worked for me, I didn’t have accessible to me. And because I was there for another reason, when I’m complaining, “Oh, I have a migraine,” and if I’m talking to somebody who’s not who does not have that experience or is not able to understand exactly what that looks like for me and they prescribe an over the counter treatment. So I remember sitting here already under stress and the reason I’m already in the hospital, and I’m starting to get head pain, I can feel like, oh, this is not going to be good. I’m getting nauseous and I explained to the nurse, “Okay, I have a migraine, like this is not, this is getting worse. This is not, I can feel it going up here if that makes sense.” And so typically with my migraines, my pain is always on the left side, on the left side of my head, and so I remember explaining to them like you know, I’m getting a migraine and she said, “Okay, I’m gonna call the doctor, let him know.” She came back she said here I have some medicine for your migraine and it was an over the counter medication. And I’m like, Oh no, this isn’t gonna help. Similar to my experience with insurance companies, it’s almost like they wanted me to try a few medicines here and there before they would actually give something that helped. But one of the reasons why that was my worst migraine is because it felt like I was suffering very intensely for a very long time, if that makes sense. And I wasn’t able to treat it how I would you know, originally what the ice pack or the counter medication, that wasn’t the most helpful for the gravity of pain I was experiencing. And then when I began to vomit, and vomitting uncontrollably, obviously, they probably suffering with their own. So like, “Are you feeling sick? Maybe you have the flu, maybe you have other conditions that that weren’t related to migraine,” and I’m explaining to them, “No, this is migraine, I know, it looks a little different. But this is still my head. This is because of the pain that I’m experiencing.”
Joe Coe 05:37
Yeah, it’s unfortunate that you know, what you’re talking about, Candace, is called step therapy. And it’s a process that insurers get in the way of our prescribers saying, you have to try and fail something first, before you can get the prescribed treatment. I deal with it all the time. I just last week had to spend a week re-documenting the medications that I was on with my insurance company, who already had documentation of the medications that I was on, I was like, “You have this information. Why are you making my neurologist do this again?” And I mean, I know the answer. They’re making my neurologists do this again, because it saves them money by denying the medication that helps us live better lives. So it’s really frustrating. I’m sorry that you experienced that. How are you feeling now? Like, are you in a good treatment routine? You have your service dog? Can you talk a little bit about where you are today?
Candace Camper 06:31
Yeah. So as far as today, I still want to say I’m not exactly where I want to be especially going through transitioning, and I have new insurance now. So I’m going through that same process now where I’m explaining, “I’ve taken this medicine, I’ve taken that medicine, you know, this is why I deserve this medicine that I need now.” And so. But I will say in comparison to where I’ve been in the past, having my service dog, having new treatments available to me that I’m very hopeful about I will say I am better, and I still have a little while to go.
Joe Coe 06:58
And when they told you, when your neurologist prescribed you an injection, were you hesitant to take it? And if you were, how did you get over that?
Candace Camper 07:00
When my neurologist first prescribed an injection at the time, I said, “Whatever it is, give it to me. I willing to try it.” And that was years ago and I tried multiple injections, multiple different kinds. So the reason why I was most hesitant, if anything, was because I would be injecting myself. But besides that I was more than willing to try anything that could help me.
Joe Coe 07:25
Since you’ve been on the prevention medication that you’ve been administering yourself. have you felt like it’s impacted you in a good way?
Candace Camper 07:32
Yes, it has, it has. The medicine that I have been taking has been really helpful. I have had a brief pause and the medication as I mentioned previously, only because of insurance. So I should be able to be right back on track soon here, but compared to the other medicines that I was taking, and compared to just taking pills, this actual preventable injectable medicine I like more than the other. So I think it is really helpful.
Joe Coe 07:52
So that pause, I think it’s important to talk about because I didn’t realize your insurance was pausing a treatment that you were like, for lack of a better word, stable on and doing well. How has that been emotionally and physically? Are you getting more migraine attacks? Are you feeling pressure or anxiety? What does that like to have that pause when you had something that works and now you have to fight with insurance? What does that feel like?
Candace Camper 08:16
It’s very stressful, and I was already anxious about it. Because I knew I knew this time would come. And I thought I was preparing for it, I thought would be ready. And now the time is here. And and throughout the suffering it is really, it’s frustrating. It causes anxiety, and it’s stressful, especially when you’re working with a new provider and new insurance. You know, you’re getting stabilized with this new provider. And then you have to explain all your past to this new insurance and it almost feels like you have to explain yourself to get the stuff that will help. And so I almost wish I can just video call my insurance company during my most severe attacks and say, “Do you want to prescribe the medication now? I think noe would be a great time.” And so it is frustrating.
Joe Coe 08:52
Yeah, that’s a really interesting idea. Like let’s send video messages to our insurance companies when we’re in pain. Patients being delayed their treatment is unfortunately a shared experience for many. I asked Dr. McAllister about the consequences of insurance companies delaying someone’s treatment.
Peter McAllister, M.D. 09:12
The optimal use of my time with a patient is that I try to really listen loudly and customize a care plan for him or her. And we decide together on the right medicines and when they’re working it’s fantastic. Many of them feel they have their life back to some extent and they’re functional and they’re working. So you know it’s a shock sometimes when an insurance changes or they lose insurance or they change jobs. And you have the patient is told you can no longer get that amazing medicine. They have choices. One is to try to go to the one recommended by the insurer because we have a somewhat broken healthcare system that is usually an older, inexpensive drug because they’re trying to save money. Sometimes patients have to go through that and fail that to demonstrate the need for the drug that was taken away from them. The bottom line is these non medical switches are just not right. They’re not good for patient care. It’s driven by the insurers. And it’s a problem. In my center, I often write letters to insurers, I tried to yell loudly at them and advocate for my patient. Sometimes telling the story that the patient missed, you know, seven workdays in a month until the medicine we decided to put them on, and then they missed no work per month. I mean, sometimes these things do resonate. But often they don’t. So we try to find something then on the formulary that’s as close to what they were on, and, and give that a go.
Joe Coe 10:53
I’ve had similar conversations with them. And it’s sad, because of the people that are denying us, they also get denied. And they’re not the ones that are making money off of the denials. But you know, the shareholders are, and it’s a system that isn’t made to make us feel good in the quickest way. And it’s really sad. I want to switch gears a little bit and talk about your service dog and your Instagram account. Can you talk about this relationship that you have with Clea?
Candace Camper 11:24
Yes, so Clea’s a golden retriever. She’s cream color. A lot of people say is that a lab? Or they say, “I’ve never seen it go to that color.” I’m like, yeah, she’s a golden retriever. And I got her from a company in Indiana, I was initially matched with a different thought that was career changed, and ended up being a therapy dog. And so they told me, like, the original dog we have placed you with, or we planned on placing you with is not gonna work out. But don’t worry, we have another dog. A golden retriever we think you’ll love her.” And I’m like, “Oh, okay. I hope so.” And so, I’ve had her for a few years now. And she has a she’s trained to do a lot of different tests that help me and even one task that after I got her, I didn’t realize how much it was that would help. And when I went back and said, “Can you help me train this task? Because I think this will really help with migraine.” And they said, “Okay, yeah, we’ll help you train it.” And that was for moments on pulling. So some of the tasks that she’s trained to do is forms of pulling, item retrieval, she can get a tray from the refrigerator, she can get bring medicine, she can help with balance assistance. I have a vagus nerve stimulator. And so how she helps with that is she will snuggle against my chest with my magnet for my stimulator on her collar. And so I initially started documenting those things only because people had told me “Oh, that’s so interesting. I never knew a service doctor would do these things, or I never knew you can get a service dog for these different conditions.” And I was just interested, just show, just showing people you know how she can help and that if you need to help, service dogs can be trained to help you.
Joe Coe 12:45
Amazing. I encourage everyone to go to CandaceAndClea on Instagram to see this beautiful relationship and important work that Clea is doing. I mean, really is. You said, you talked about the dog having a career change. This is a legitimate function that these animals provide for folks. And it’s so important and special. Why did you feel it was important to share on that Instagram page, your chronic disease journey, being a BIPOC person, having a service dog? What has been some of the things that you’ve experienced by being so open about this part of you?
Candace Camper 13:23
Yes. So before I got a service dog, I ran into a lot of misinformation about them. So before I had the right information, I had all the wrong information. And I didn’t know who to go to besides Google. And a lot of times when you Google things, there are ads that pop up that you shouldn’t really clicked on, because they don’t have the correct information. And so on everything I had never seen outside of maybe a movie or two was a black person with a service dog. And a lot of people in my family and my friends group, when I told them, I’m getting a service dog, they’re like, Really, like, you can do that?” Or really like, they were just really surprised. Because in the black community, I haven’t really seen many of, or my friends, have not really seen many black people with service dogs. It was different, you know, it was different. And when people ask me, “Are you sure you want to do this?” I’m like, “I need to do this, like I need to do this.” And so one reason why I wanted to document it is because I felt representation is important. Like maybe I can be the person with the right information with this color skin that can tell the next person who needs a service dog who’s thinking about it, like it’s okay to do it, like if it’s gonna help you, it’s gonna change your life, go ahead for it. And so I felt that representation was very important. And it’s helped me because even in public, I’ve had people come to me and say, “Hey, I have a family member who needs a service dog.” Or, “I have family”, but even with guide dogs, people say, “Oh, I have somebody who needs a guide dog, you know, how, what do I do?” Or how do I you know, asking me questions and things like that. And so I’ve always felt like, “Oh, I’m glad that I can be the one to give you this information because I will steer you the right way.” And so that has made me very proud. And like I said, Clea has changed my life in more ways than I could even imagined because originally I hadn’t even I didn’t even know that she would be able to help me with migraine because I was suffering so often. I couldn’t even imagine what I would do without her. And so especially as I mentioned before with floor moments and pulling, that’s something that I had learned about kind of through the service dog community, I didn’t really, really know much about that or what it was or how it could help. But that is one of the tasks I use most often.
Joe Coe 15:09
Amazing. And do you find that there are other people that have service dogs that have migraine that are using them in a similar way?
Candace Camper 15:17
I have I’ve met people online through Instagram and TikTok, who have mentioned, “Oh, yes, you know, I have a service dog that assists me with migraine,” or even if it’s not, maybe they have another condition as well, but they also have migraine, and they’re like, “Oh, maybe my dog can do this task as well, to help me with migraine.” I think it’s really opened people’s eyes like, okay, you know, because obviously, there’s still a big stigma around migraine, and the perception, even the perception I grew up with is still out there where people just perceive migraine to be, oh, just a simple headache. And so with the true understanding of what migraine is, what it means for me, and what it can mean for other people and what a service dog can mean, as far as helping those people, I think it kind of opens people’s eyes like, “Oh, wow, a dog can actually do this, for me, like migrate is a disabling disease. And this service dog could be tasked trained to help me with this disease.” And so I think it’s really eye opening.
Joe Coe 16:05
My last question, we talked a lot about how you have found the right treatments for you. What would you say to folks that haven’t found the right treatment or are experiencing some of the access issues that you’re navigating right now? What did it mean to you to find the right treatment and what do you tell people that haven’t, and/or are struggling to access it?
Candace Camper 16:28
Yeah, so barriers to treatment are always very difficult, I think I have to agree, it is a very hard thing to experience. But one thing I will recommend is, don’t lose hope. Don’t stop fighting for yourself, you’re gonna have to fight for yourself. And that’s okay. And everything that I will mention is, as far as somebody who’s you know, found treatment that works for me over a long time of experimenting, I’m very happy. I’m very grateful. And I don’t say that lightly. But if you haven’t found the right treatment, yet, be vocal with your doctor, have a relationship, communicate, because they need that documentation of how it was working for you. And if you aren’t explaining to them or talking to them, if it’s working, or if it’s not working. And if you’re not open and honest, you won’t be able to get to that next step that insurance has taken us through. So I recommend being very open and honest about how it’s making you feel. Maybe keep a journal. You know, they have tracking apps and things like that. So I recommend tracking it, and really having a good understanding of what you’re going through to the point where you’re able to explain it to somebody else.
Joe Coe 17:19
Yeah. 100% Yeah, this was a really wonderful discussion. So glad that you join. I learned a lot about service dogs. I didn’t realize how they could be utilized by people with migraine. It never occurred to me until following your amazing work. And I know that with a chronic disease or diseases, it’s energy to do these types of interviews. So I appreciate that you are able to expend some of that with me. So thank you.
Candace Camper 17:49
Oh, of course, I appreciate the opportunity. I’m always willing to kind of share what I’ve been going through, about Clea, because like I say a lot of people don’t know and I just think using my platform, using my voice to just at least tell people you know what I can. I appreciate the opportunity.
Joe Coe 18:05
Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe and I will see you next time. This season of Talking Head Pain was made possible with support from Amgen, a sponsor of the Global Healthy Living Foundation.
Narrator 18:29
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
On this episode of Talking Head Pain, Joe is on location at the American Headache Society’s Scottsdale Headache Symposium talking to Annika Ehrlich, a nurse practitioner at the University of California, San Francisco Headache Center. Join Joe and Annika as they discuss her history in migraine care and the exciting topics they’re hearing about at the symposium.
Inpatient Care, Precision Medicine, and Migraine: A Conversation with Annika Ehrlich, MS, FNP-C
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:09
Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m here at the American Headache Society with Annika Ehrlich, who is a nurse practitioner and is going to share some really interesting information about what she is finding to be most impactful for patients. How are you doing today, Annika?
Annika Ehrlich 00:33
I’m really good. How are you?
Joe Coe 00:35
I’m feeling good. I’m really glad that we’re able to talk. I follow you online. I’m glad that we’re meeting in person. Yeah. So can you tell our audience a little bit about yourself?
Annika Ehrlich 00:43
Sure. I’m a family nurse practitioner by training. And I started out my career as a nurse and I worked in the hospital at the University of California, San Francisco. And at that time, Peter Goadsby was the director of the Headache Center at UCSF. And UCSF has a long history of caring for patients with headache disorders and headache specialists within their neurology department. Neil Raskin was at UCSF for many years and just retired in 2019. He’s very well known in the neurology world for something called the DHE Protocol, or dihydroergotamine Protocol, where he would admit patients to the hospital. So typically migraine patients who really just were not responding to a lot of other treatments anymore, and needed something to break the cycle or get them to a better place. So Dr. Goadsby was admitting patients to my unit. And we were doing these similar to what Dr. Raskin had been doing. So a modified or you know, extended Raskin protocol or DHE protocol. And so and other treatments inpatient for headache. He taught the nurses all about chronic migraine, medication overuse, cluster headache, because we would fit patients with cluster headache disorders. And so I got to learn about this whole world that really I didn’t know much about before that. I have migraine and I had been on preventive therapies for migraine and you know, taken triptans and everything, but this sort of level of treatment that some people need that was like not on my radar at all. And so I got to know these patients really well, they stay with us. And we still do inpatient management at UCSF, they stay with us for four to five days, sometimes longer depending on the protocols. And so you really get to hear about patient experience. Miles for Migraine started in the Bay Area, San Francisco. So it was started by a wonderful patient advocate in the Bay Area. So that was our first Miles for Migraine event there. And I got to participate in that early in my career. And then I went back to school for my nurse practitioner degree, about six years into my nursing career. I worked in primary care for a year. And then the position opened up at the Headache Center. Dr. Levin, Mo Levin was the director at that time, and we really hit it off. And so I came on, and I did a lot of inpatient work with with our patients there, and that’s in the hospital. And then I’ve also learned outpatient management or clinic management of headache patients, and I do procedures, follow up visits, those kinds of things. I’ve gotten really passionate about headache management, and also advocacy and taking care of patients and making sure that patients have access to care, because that’s a huge barrier for patient care in the US and all over the world.
Joe Coe 03:31
Oh, without a doubt, and nurse practitioners are a critical part of that equation. So I’m really glad that we’re connecting. What do you feel like is the biggest takeaway from this conference that patients should know about from your perspective?
Annika Ehrlich 03:43
What I want patients to understand about a conference like and the American Headache Society, is that there are so many incredibly brilliant people working on all different facets of any sort of issue you can imagine in headache, and that is just getting bigger and better as time goes on. The Society has been around for a long time. And it keeps growing. They have you know, record breaking attendance numbers every year in the past few years. And I think there’s so much more interest, excitement and new things going on. So you know, anything from there was a really wonderful, this was a trainee who got an award she was presenting, you know, one of her papers, thinking about targeted therapies for migraine. So can we figure out which treatment is going to work for which patient and having a lot of time and effort and studies that are going on. So even just like a little tiny, 10 minute presentation about that, to me is really, really exciting. And then also just figuring out what’s the best way and what’s the most evidence based way that we can care for our patients and get them the best care early on. So I think that’s also really exciting.
Joe Coe 05:00
It’s amazing. It’s good to hear that precision medicine is starting to be talked about for migraine patients.
Annika Ehrlich 05:06
Yes, it is really exciting and something that all of us really are jumping up and down for because, you know, it’s so much trial and error. Can we move away from that and get to specific targeted therapies. I don’t want to have a patient on a treatment that if it you know, if I knew that that treatment was not going to be the right treatment for that patient. Unfortunately, we are not there yet. But hopefully all of this you know, research and work that people are doing will get us there sooner.
Joe Coe 05:35
Well this is amazing. Thank you so much for your time and the work that you do throughout the year to help people like me and people that are listening feel better and live healthier, happier lives.
Annika Ehrlich 05:46
Thank you so much, Joe, it’s great to talk to you.
Joe Coe 05:49
Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.
Narrator 06:04
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
On this episode of Talking Head Pain, Joe is on location at the American Headache Society’s Scottsdale Headache Symposium talking to Dr. Liza Smirnoff, a headache specialist at the University of Miami. Join Joe and Dr. Smirnoff as they discuss the importance of care of migraine in pregnant women and those going through gender affirming care, as well as the work she and her peers are doing in reducing the amount of monthly migraine days in adults.
Pregnancy, Gender Affirming Care, and Migraine: A Conversation with Liza Smirnoff, MD
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:09
Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m here at the American Headache Society with Dr. Smirnoff. Dr. Smirnoff is going to share what she is hearing about at this conference that most impacts patients or what we should be excited about. How are you doing today, Dr. Smirnoff?
Dr. Liza Smirnoff 00:34
Great. Thank you for having me.
Joe Coe 00:35
My pleasure. Can you let our audience know a little bit about you?
Dr. Liza Smirnoff 00:38
So I am a headache specialist at University of Miami, and a lot of my research focus is really around women’s health and treatment of migraines and pregnancy or in other states where treatment may be difficult as well as post traumatic headache.
Joe Coe 00:55
That’s really interesting. So are you hearing a lot about that here at this conference?
00:59
I am. I was actually very excited. At our women’s health meeting, there was a lot of discussion about how to better create guidelines to treat both women who are going through pregnancy as well as persons who may be getting gender affirming therapies, and how both of those things may impact migraine.
Joe Coe 01:18
And what can you share about those topics?
Dr. Liza Smirnoff 01:21
There isn’t much data at this point. But I think the great part is that it’s getting really highlighted as an important topic of discussion, because we are seeing that those patients may be impacted by migraine differently, and also may require special considerations in their care.
Joe Coe 01:37
That’s so important. Gender affirming care saves lives. We know that. So it’s really great that that’s happening here, the American Headache Society. Are there any other areas that you think our audience should know about that have jumped out at you as you’ve been attending lectures and meeting your colleagues?
01:53
Yeah, I mean, I think one of the talks this morning that focused on goals that we set for migraine in our research studies really jumped out at me and it was that a lot of our adult studies focus on reducing monthly migraine days by half. Meanwhile, the children’s studies often focus on this benchmark of four or less migraine days per month. And as a migraineur myself, I know that sometimes half of your migraine days per month is really not adequate treatment. So this is something that one of my colleagues and I have really stressed to both trainees and also discuss with patients and I hope becomes more of a benchmark for adult patients also to really make sure that we’re decreasing headache days down to a point where it’s not so impactful in their lives.
Joe Coe 02:44
That is really important and a really good reframing and refocusing because one migraine attack or headache days too much for many of us. So it’s good that we’re aiming for that and thinking about how we can better those outcomes for patients. Really appreciate your time and all that you’re doing to advance care and help people like me and yourself as a patient feel better. It’s really important.
Dr. Liza Smirnoff 03:09
Well, thank you so much for having me. It’s great to be able to connect with patient advocates, and I think it’s really important to really bring a lot more awareness to the field in order to kind of serve our migraine community better.
Joe Coe 03:24
Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.
Narrator 03:39
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
On this episode of Talking Head Pain, Joe is on location at the American Headache Society’s Scottsdale Headache Symposium talking to Dr. Sarah Bobker, a headache medicine specialist who works at the University of California, San Francisco and is the Associate Editor for the American Headache Society’s journal, Headache. Join Joe and Dr. Bobker as they discuss the growth of headache medicine fellowships and why this matters for patients.
The Growth in Headache Fellowships: A Conversation with Sarah Bobker, MD
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:09
Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m here at the American Headache Society with Dr. Bobker. Dr. Bobker is going to share some really interesting information about the conference and what patients should know from her perspective. Hi, how are you doing today?
Dr. Sarah Bobker 00:32
I’m doing great, Joe, how are you?
Joe Coe 00:33
I’m good. Can you share with our audience who you are?
Dr. Sarah Bobker 00:36
My name is Sarah Bobker, and I am a headache medicine specialist. And I currently work at the University of California in San Francisco. I also am an Associate Editor at the American Headache Society’s journal, Headache, where I get to help review research that comes in on headache medicine topics and publish really awesome work that helps to make change for our community of headache patients.
Joe Coe 01:04
That’s so important, the research that informs that change. Can you share with our audience what you’re hearing? What’s energizing you from this conference?
Dr. Sarah Bobker 01:12
Yeah, that’s a great question. So much that’s good is happening here. And when you get us all together, it’s it’s really just all exciting again, reinvigorating for our own passions for the field. New ideas are sparking all the time. But I think what I’m most excited about is how many people are here this year. And just hearing objectively, from the leaders of this of this conference, the growth in terms of actual numbers of attendees, of memberships for the American Headache Society, our fellowship programs are also expanding. We now have 50 training programs in headache medicine around the country, in every region of the country. So I guess it’s just wonderful to hear about the interest in headache medicine, and that people are coming to our field. And I know that’s just going to be fantastic for our patients and what we take care of in headache.
Joe Coe 02:07
Definitely, and what is the expanding of fellowship programs mean for patients?
Dr. Sarah Bobker 02:12
Yeah, so more trainees going into headache medicine means more headache specialists out in the world. And you know, there’s a real gap, I’m sure many experience between people living with headache disorders. And then providers that are trained to specifically manage headache disorders and potentially complex headache disorders, overlapping headache disorders. And so there’s a greater need than there is a supply and it looks like that gap might be closing and is closing.
Joe Coe 02:42
That’s amazing. And I’ve had the opportunity to talk to some of the fellows and their energy and compassion that they bring to the work is so important. And it really does move the needle forward for people that are in pain that are seeing folks.
Dr. Sarah Bobker 02:55
Absolutely.
Joe Coe 02:55
So thank you so much for your time and your work and your energy and the work that you do with research and the work that you do helping guide fellows. It’s so important and we appreciate it.
Dr. Sarah Bobker 03:06
Absolutely. Thanks for having me.
Joe Coe 03:08
Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe to so you never miss another one. I’m Joe Coe and I will see you next time.
Narrator 03:23
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
On this episode of Talking Head Pain, Joe is on location at the American Headache Society’s Scottsdale Headache Symposium with Dr. Adelene Jann, a headache specialist and licensed acupuncturist. They discuss how acupuncture can be used for migraine patients.
Acupuncture and Migraine: A Conversation with Adelene Jann, MD
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:09
Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m here at the American Headache Society with Dr. Jann who is going to share some of her insights from the conference and what patients should know. Hi, Dr. Jann, how are you today?
Dr. Adelene Jann 00:31
I’m doing well. Thank you so much for having me.
Joe Coe 00:34
Can you start by letting our audience know a little bit about you?
Dr. Adelene Jann 00:36
Sure. My name is Dr. Adelene Jann, I am a headache specialist at NYU Langone Health. I am also the Fellowship Program Director at our institution. And I have a special interest in Complementary and Integrative Medicine and actually have a medical license to do medical acupuncture in my practice.
Joe Coe 00:55
That’s so interesting. So are you hearing about acupuncture and other complementary procedures here at this conference?
01:01
Yeah, you know, one of my most favorite things about coming to these conferences is actually meeting up with other members who are part of our complimentary integrative medicine section group. So yesterday, we had a great meeting, going over many different things about integrative medicine, but also incorporating acupuncture into the medical practice. There’s some evidence that is out there. But we’re always looking to promote it into our practice, because it’s a nice alternative treatment for patients who prefer to have, you know, non medication options when the y’re dealing with their migraines or headache disorders.
Joe Coe 01:33
What is some of the evidence that is out there for complementary treatments?
01:37
Well, specifically for acupuncture, there actually is a really great literature review that was done in 2016, looking at acupuncture for tension type headache, as well as migraine disorders. And the data for that, you know, they reviewed 1000s of articles. The data shows that acupuncture treatments for both tension and migraine headaches are actually not inferior to medical treatments, meaning that they perform the same in decreasing the frequency and the severity of headaches over time, and also reduces you know, the amount of acute treatment medications that patients need when they get their headaches.
Joe Coe 02:13
Outside of acupuncture, are there other things that should be on our radar as patients?
02:18
Yeah, I mean, anything involving lifestyle, right, we always promote a healthy lifestyle, whether that’s with diet, trying to eat clean, healthy things, as opposed to processed foods. There’s debate whether or not hydration is is a big factor for prevention of headaches or migraines. But hydration overall is really great for general health, we always stress exercise to get the cardiovascular system in check, and that studies have shown also have reduced migraine frequency and headache frequency overall, which is great.
Joe Coe 02:47
A personal interest for me has been a strength training and migraine. Is there any research on strength training? I know a lot of the exercise research is based on cardio.
02:55
To my knowledge is mostly it’s cardio. But I think strength training overall is great for for general health. And I think when the body is healthy, the brain can also be healthy as well.
Joe Coe 03:09
And are there any other interesting areas of research that you’re hearing your colleagues talk about that are emerging?
03:15
I think you’re probably going to hear somebody talk about the apps that are available for tracking headache disorders, but you know, other also other triggers that may be related to headaches overall. So that’s, that’s one of the things we’re working on in the section group. And also considering you know, different approaches that are available for specific headache disorders like migraine, vestibular migraine, there may be something about that coming out in the future, which is just exciting.
Joe Coe 03:40
That’s so awesome. I really appreciate that there are doctors that are looking at us as whole people and that you’re pushing that work here at the American Headache Society. It’s really important.
Dr. Adelene Jann 03:52
Definitely.
Joe Coe 03:53
Thank you so much for joining me today.
Dr. Adelene Jann 03:54
Great. Thank you so much.
Joe Coe 03:55
Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.
Narrator 04:12
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
On this episode of Talking Head Pain, Joe is on location at the American Headache Society’s Scottsdale Headache Symposium talking to Dr. Lauren Natbony, a headache specialist who tells Joe about the connection between autonomic disorders, like postural orthostatic tachycardia syndrome (POTS), and Ehlers-Danlos syndrome, and migraine.
Autonomic Disorders and Migraine: A Conversation with Lauren Natbony, MD, FAHS
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:09
Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m here at the American Headache Society with Dr. Natbony, going to learn from her what she’s finding to be most exciting and interesting for our migraine community. Hi, Dr. Natbony. How are you today?
Dr. Lauren Natbony 00:33
Hi, I’m doing well. So beautiful here in Arizona.
Joe Coe 00:36
It really is. Can you tell us a little about yourself?
Dr. Lauren Natbony 00:38
Absolutely. So I am a headache specialist. I run my own practice called Integrative Headache Medicine of New York, which is in Midtown Manhattan, which really integrates all aspects of headache care under one roof. So it’s a bit of a unique practice and kind of my baby, it’s, it’s what I believe that all care should be. I am also an assistant clinical professor of neurology at the Mount Sinai School of Medicine.
Joe Coe 01:00
That’s amazing. And it’s really important to connect those dots for folks. Can you share with us a little bit about what you’re finding exciting for the patients that you see and the patient community as a whole?
Dr. Lauren Natbony 01:11
Absolutely. So the whole conference has been really awesome, but something that I’m super excited about is the topic of dysautonomia, specifically POTS, which is Postural Orthostatic Tachycardia Syndrome. And there’s now a lecture on it. And I don’t remember, I’m looking thinking back about other meetings that I’ve been to just bringing to the forefront pots and its relationship to headache disorders, specifically migraine really hasn’t been talked about much. In my practice, there’s a huge overlap, I would say about 50%, almost about what I see has a diagnosis of POTS or I diagnosed with POTS or somehow relate it.
Joe Coe 01:46
And how do you find that understanding the connection helps patients?
Dr. Lauren Natbony 01:50
Everyone wants to know the root cause, right? When we say the root cause of migraine is genetic, we can say yes, yes, it is. But everyone’s still searching for that missing piece. And it’s my belief that yes, it is genetic. But there is a missing piece in the autonomic nervous system. The autonomic nervous system is what balances the background. It’s what balances our fight and flight and then are, you ate a big turkey dinner, your rest and digest. And it is that imbalance that triggers signals, which can be pain signals inappropriately, which is what can happen in migraine. I think this is what we haven’t really been talking about. And something that you can then explain to patients and empower them and make them feel like if they do have an underlying autonomic dysfunction. It’s something we can talk about and treat.
Joe Coe 02:32
And what are some integrative approaches that you use with patients when you start to unravel or get to the root cause of migraine?
Dr. Lauren Natbony 02:41
I look at everything. So the first thing I look at is obviously a conventional medical assessment, seeing is there any underlying medical conditions going on? That’s where POTS might fall under that umbrella. And I’ll do a 10 minute lay sit stand test to evaluate for it. I then evaluate the connective tissue. So I look for underlying connective tissue diseases like Ehlers-Danlos Syndrome, hypermobility spectrum disorders, and I see are there any components of skin laxity. Is there any neck or back pain that might be contributing? Basically looking at can I find some other functional component that might be a contributor, again, not the cause, per se, but a contributor. I then assess sleep. So insomnia, the overlap between insomnia and migraine is huge. And we know if you don’t treat the insomnia, migraine does not get better. So I screen everyone for insomnia, for sleep disorder breathing, like obstructive sleep apnea, which is also commonly linked. I look at physical fitness. I look at nutrition but in a different way than looking at triggers. I’m more look at are you taking in what’s nourishing to the body and what is giving it energy in order to be able to function. And then we there’s multiple other steps that I go through, but it’s really taking every aspect of life and putting them together to make this complete picture.
Joe Coe 03:51
I love that that’s so important. And it’s great that this conference is pulling together those parts. And I know that you’re a part of one of those special interest groups here, around integrative medicine or wellness. Forgive me for miscommunicating the group, but really important because our community wants to know what are some complementary ways that we can manage our disease. So it’s it’s great that we’re talking about these different aspects of migraine, as well as other forms of modalities that we can use to feel better.
Dr. Lauren Natbony 04:27
Absolutely. I feel like it’s the Complementary and Integrative Medicine section. And we really strive to bring to the forefront all of the evidence based. Again, evidence based, I think, is key here because they’re all backed by research and studies. But what you can do in order to treat yourself that is non pharmaceutical, so vitamins, supplements, and the new one at this meeting was apps, so different mindfulness, biofeedback apps that you can use on your smartphone, that can help and can actually be just like, as valuable as a prescription medication. So we were talking about writing prescriptions for apps, and how you find the right apps and how you test them and how you talk about them with patients. Because I think just telling a patient go use an app. Like, I don’t know what that means.
Joe Coe 05:10
Really important that we’re not, there’s a lot of snake oil salesmen out there trying to get us to do things that aren’t validated. For full transparency here today. I’m using a medical device that I’ve haven’t used before, and have a migraine. And it’s something that if I wasn’t at this conference, I wouldn’t think to try. And it’s helping me in a way and it’s important that we give ourselves opportunities, both pharmacological and non pharmacological, to try to feel the best that we can feel. So it’s really exciting. I really appreciate the work that you’re doing. Thank you for joining us on Talking Head Pain.
Dr. Lauren Natbony 05:46
Thank you so much for having me.
Joe Coe 05:48
Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe and I will see you next time.
Narrator 06:03
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
On this episode of Talking Head Pain, Joe is on location at the American Headache Society’s Scottsdale Headache Symposium talking to Dr. Matthew Robbins, a neurologist and headache specialist. He is presenting on the relationship between migraine and COVID.
Migraine and COVID: A Conversation with Matthew Robbins, MD
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:09
Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m here at the American Headache Society catching up with Dr. Matt Robbins. Dr. Robbins is presenting a talk about COVID and migraine and we’re going to learn from him about that and what else we should know. How are you, Dr. Robbins?
Dr. Matthew Robbins 00:34
I’m doing great, Joe. Thanks for having me.
Joe Coe 00:36
Can you tell us a little bit about yourself?
Dr. Matthew Robbins 00:38
Sure. Well, I’m a neurologist and headache specialist. I work at Weill Cornell Medical College in New York Presbyterian Hospital in New York City. I’m also the current treasurer on the board of directors at the American Headache Society, where we are for the meeting now and a fellow headache advocate with you at Headache on the Hill where we met for the first time.
Joe Coe 00:56
Yeah, that was amazing. So powerful to have patients and providers together talking about the issues that impact us both.
Dr. Matthew Robbins 01:03
Well, I think we can only be stronger by joining forces.
Joe Coe 01:06
Correct. So you’re doing a really interesting talk about COVID and migraine here at this conference. What should our community know about that?
01:14
Well, I think there’s a lot of relationships between the two that we’re still learning a lot about. So I think you can kind of divide it up into a few categories. One is getting headache as a COVID symptom. And that seems fairly common. Often, a headache can really outlast the viral presence itself. And we know a lot about that in the headache specialist world because of this condition that’s been identified for now many decades called new daily persistent headache, which was first identified as a headache syndrome that continued ever since it started and often is associated with a viral infection, including things like Epstein Barr Virus and other viral illnesses and headaches specialists are very comfortable seeing patients with that, although treatments haven’t been so greatly developed for such a condition. Although we’re getting there in that department. But headache is a fairly common symptom of COVID. Sometimes it’s the most prominent symptom of COVID. And often people who already have migraine, migraine is triggered during a COVID infection. And even in some people, those who have migraine that’s episodic, a viral infection in sort of a sizable minority of people can kind of transform migraine into chronic migraine, which is something that we absolutely need to prevent. So I think it’s very important to identify and follow up people who get COVID and experience headache, or have migraine that might be frequent already very closely to be on top of this. The next thing to think about is headache as a symptom of long COVID. You know, what we found out is that it’s not the most common symptom of long COVID, it’s probably somewhere along the sixth or seventh most common symptom, even neurologic symptom with long COVID. So one of the reasons for that is that headache is just so common overall. And because, you know, in any given way you slice the population, you know, 12% of people have migraine in any given year, that’s a lot of people. So sometimes, because it’s so common in the first place, it’s hard to show that signal in long COVID. But it does happen, you know, why it happens? You know, we don’t know. And it could be that COVID itself leads to some auto immune activation with inflammation or release of these molecules called cytokines that could be in the nervous system and lead to pain. And the same thing could happen in joints and in other parts of the body. So why could it not happen and lead to headache. It could be that it induces some auto immune response that might be more vulnerable in certain genetic situations. So one thing that I’ve seen is that people who don’t really have a history of migraine, but then they develop COVID, they develop headaches that are frequent thereafter that resemble migraine, you often find that they had a migraine family history. That’s what I’ve seen in my practice, often. Not always, but often. And then there are other mechanisms that could be at play. And then the other thing that often comes up that we are asked all the time by patients and others is that what about headache and vaccinations for COVID, especially now that we have a relatively newer bivalent booster and how safe is it for our patients? And what are the chances of getting headache? You know, headache is a fairly common symptom after vaccination, but it is probably hundreds of times more common with COVID itself. So the relative protection of vaccination for headache is very strong. And one could even argue that this new daily persistent headache syndrome for which we don’t have a known treatment for well, maybe we could prevent it in some people if they get COVID vaccinated in a way. So it’s almost like a form of preventing what we know to be a very difficult to treat headache condition in this new daily persistent headache.
Dr. Matthew Robbins 01:54
So interesting, all of this. As a provider, are you hearing from other providers that you’re seeing a lot more patients that present with migraine because of COVID?
04:46
Yes. And you know, that’s a great question, Joe. I think yes, I think it’s hard to separate out the demand because we have so many newer, great treatments for migraine that people are just coming to seek care in general and that’s kind of coincided with the COVID era, so it’s hard to separate that out. But I think in general, I would say yes. Often people come and say, “Well, you know, I had migraine once in a while, and then I developed and I got COVID. And even though the COVID illness itself wasn’t very severe, migraine then became very much more frequent. And that’s why I’m here to see you.” So I think that is certainly the case. The other thing is that big seismic events in society are known to lead to migraine becoming more frequent. And we’ve seen that in a number of different situations. And you and I are New Yorkers, we saw that after 9/11, and in the World Trade Center study done, headache was so much more common in those who are in the area of Ground Zero in the many years that followed thereafter. We’ve seen that in Japan with earthquakes, where migraine prescription medicine rates increased drastically in the year that followed after an earthquake there. We’ve seen it with after a terrorist attack. So for example, there was a terrible terrorist attack in Scandinavia amongst a bunch of teenagers who in a camp recreational camp and the rate of headache after this just exposure was so high so I think often the experience of getting COVID is just so disruptive. Even if you’re not very ill, your life is just totally on hold and how do I deal with childcare and work and getting food and taking care of others? And what if you’re a caregiver to someone who’s ill and you get COVID? All these things are really tough so sometimes it’s the the impact on life that could be the driver for headache and migraine to manifest rather than the illness itself. It’s hard to separate that out.
Joe Coe 06:25
Well, thank you this was so interesting and I learned a lot and I’m sure our audience did as well. I really appreciate your time and energy and all the work that you do to make sure that patients like me and our listeners are well taken care of.
Dr. Matthew Robbins 06:37
Thanks, Joe and for everything that you do as well.
Joe Coe 06:40
Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on if you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.
Narrator 06:56
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Today on Talking Head Pain, Joe is on location at the American Headache Society’s Scottsdale Headache Symposium talking to Dr. Jennifer Robblee, a neurologist focusing on migraine and headache disorders. Dr. Robblee, a member of the Refractory, Inpatient, and Emergency Care (RIEC) specialty interest group, is researching effective ways to treat status migrainosus (or a headache that doesn’t respond to treatment or lasts longer than 72 hours).
Learning About Status Migrainosus: A Conversation with Jennifer Robblee, MD
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:09
Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m here with Dr. Robblee at the American Headache Society. And we’re going to learn from her what she’s hearing about some of the most exciting and important research that’s developing here at the American Headache Society. So welcome, Dr. Robblee.
Dr. Jennifer Robblee 00:35
Thank you so much for having me. I’m excited to be here.
Joe Coe 00:37
So can you tell us a little bit about who you are and your background?
Dr. Jennifer Robblee 00:39
Sure. So I’m a headache neurologist. I work actually here in Phoenix. So Scottsdale is kind of home for me. And I work at the Barrow Neurological Institute in the Louis Headache Center. So I am mostly clinical, but I also do some research. And for interest sake, part of what I can talk about is my role as the chair for a special interest group that the AHS has which is called Refractory, Inpatient, and Emergency Care.
Joe Coe 01:05
And for folks that hear the word special interest group here at the American Headache Society, it’s around special topics that need some more exposure and exploration. So can you explain what special interest group you work with closely and what research is emerging from that?
Dr. Jennifer Robblee 01:21
Sure. So it’s, it’s my favorite part of this meeting, because it’s kind of like my baby to go and chat. And we always have lots of really interesting discussions, because it’s an area where really, we’re talking about the most refractory patients, or the patients who are coming in with these really sudden, severe headaches that land them in the emergency room or for admission. And we don’t have good enough research there, which means we don’t completely understand what is happening in the brain. And as a result, we don’t have good enough treatments, because often the treatments are more focused on the typical presentations of migraine. And so we’re trying to kind of figure out what’s going on with these these harder cases where we’re struggling with what to do. So often, we have a good discussion of kind of the philosophical ideas of where we think the research needs to go. But then we actually do a lot of hard discussion on some of the studies we’re doing. So I can give you some examples of those if you’d like.
Joe Coe 02:13
Yeah, that would be great.
Dr. Jennifer Robblee 02:14
So for instance, there’s one that we’re currently working on a paper for where we did a survey of basically all of the different people who are part of the American Headache Society. So for instance, physicians, nurse practitioners, physician assistants, and actually a lot of others to get a sense of, first off, when do they treat a patient as if they have status migrainosus. So status migrainosus is a severe migraine attack. And according to our criteria, it should go on for more than 72 hours. But the reality is, and I’m sure as a patient if you’ve ever experienced a bad migraine attack, if you’ve used your typical rescue treatment, and it hasn’t worked, you’re probably not waiting 72 hours to seek an alternative treatment because you’re really struggling. And so, so far, and this is unpublished data yet. It looks like yeah, physicians are often treating patients more when their treatments aren’t working, as opposed to waiting for this sort of cutoff of 72 hours. And it was really interesting to see from the survey a lot of the things that people are using, because we don’t have good evidence of what to use. So it’s sort of starting to put together where we should focus the attention on what treatments we actually can use when people are in these severe attacks that aren’t responding.
Joe Coe 03:24
So what do you think patients should know? Where do you think the findings might take us as a patient community?
Dr. Jennifer Robblee 03:29
Well, part of what we want to understand is really, what is status migrainosus? It’s actually pretty common. We have only a couple epidemiologic studies, but we think it’s gone up to about 20% of people who have migraine. And this is like the most severe form of an attack. It’s the ones that often does land people in the emergency room. And we have no studies on what it actually is. Is it the same as a migraine attack? Is it different? What’s happening in the brain? Are we diagnosing it correctly? So some of what we’re doing is trying to do literature based review. So something called a scoping review to understand, are we diagnosing our patients correctly? Because that’s the first step before we can do treatment trials. Before we can do other further studies, we need to know that we have the correct group of people. And then we’re also trying to understand what evidence is there so far, for treatments that we can use? So at least we’re using the best evidence for these patients and trying to standardize but also then shows us where the gaps are. So what don’t we know? What do we need to study? And I think there’s a lot there. So are there neuro imaging findings that will help give us a biomarker? Are there certain blood tests that help give us a biomarker. And a biomarker is basically when is this something different? So it’s basically the sort of indicator of yes, we have the correct diagnosis because right now we rely on, “I’ve checked the box that yes, you meet all these criteria. So you have migraine,” and you turn around say, “Yeah, but what’s the proof?” You’re like, “Well, I just said, you meet these written down criteria.” And right now that’s good enough, but it’s, it’s not and it’s not comfortable for patients to just say, “Just trust me.”
Joe Coe 05:01
That’s so important and I really appreciate you leading this effort and pushing it. It’s so important that we understand our diseases and find the best treatments for what’s happening to us in that moment. So thank you so much for your time and your work and energy.
Dr. Jennifer Robblee 05:15
Absolutely. It’s my absolute pleasure. I hope next time we chat I can tell you that we’ve got some hard evidence so when we know what we’re treating and two, maybe have some you know, ways that we can identify things better and properly treat it so we get you guys feel better faster.
Joe Coe 05:40
Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.
Narrator 05:55
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Today on Talking Head Pain, Joe is on location at the American Headache Society’s Scottsdale Headache Symposium. He is talking to Dr. Vincent Martin, who is presenting on Ehlers-Danlos syndrome and its effect on people living with migraine.
Ehlers-Danlos Syndrome and Migraine: A Conversation with Vincent Martin, MD, AQH
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:09
Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m here with Dr. Vince Martin at the American Headache Society. He’s going to share some really interesting information about comorbidities in migraine. Can you explain who you are and what you do?
Dr. Vince Martin 00:33
I’m a professor of internal medicine at the University of Cincinnati College of Medicine. I’m also Director of the Facial Pain Center at the University of Cincinnati.
Joe Coe 00:42
Great and can you talk to us about what your talk is and why it’s important to patients?
00:47
My talk is on patients that have Ehlers-Danlos Syndrome or Joint Hypermobility Syndrome, which is a syndrome where people have very hyper distensible joints, but it involves a lot more than that. So besides the joints you can have almost every organ system involved. It has neurologic involvement, can involve the you know the lungs, can involve the gastrointestinal tract. So it’s it’s a disorder that involves many different organ systems.
Joe Coe 01:12
And what’s the connection between that and migraine?
01:15
Well, we did research on this and published this probably about seven years ago or so, where we looked at patients with joint hypermobility and those that had joint hypermobility were more likely to have migraine. And when they did have migraine, they had more severe and disabling headaches. So it’s something that’s seen often in headache clinics. So a lot of patients have a variety of different pain disorders. Like they can have fibromyalgia, they can have neck pain, low back pain, and besides that they can have migraine headaches or what we call chronic migraine, which is when people have more than 15 days per month with headaches of which eight or more meet migraine criteria.
Joe Coe 01:52
And how is this research and discussion helping advance care for these patients?
01:56
Well, I think that the care needs to be different. So you have to realize all the different disorders that are associated with Ehlers-Danlos Syndrome, things like POTS syndrome, which is where when you stand up real quick, your pulse tends to race. And people can get dizzy when that happens and have fatigue type symptoms. And in some patients, they have a pulse rate running about 100 to 120 all the time. It’s like they’re running a race even when they’re sitting or even when they’re sleeping. So you can imagine how tiring that could be. And then there’s another disorder called mast cell disorder, which is basically where there’s a cell, an immune cell in the body called the mast cell, which releases all these different chemicals that is part of the allergic response. But these people have this activated over and over and over again, much more than just the average person would have with just some routine allergies. And they can develop things like chronic diarrhea, they can develop asthma, they can do all up anaphylactic reactions where they get swelling of their mouth and throat in a variety of different circumstances. And mast cell is managed in a certain way. And then you also have to manage all the chronic pain disorders they have. So there’s there’s one called cranial cervical instability, which is where the vertebrae of the cervical spine kind of kind of slip on one another, and in some cases can either compress the spine or they could cause the spine to bend in a certain way that causes neurologic symptoms like neck pain and dizziness and difficulty swallowing, and weakness in your arms and legs and also some pins and needles in your arms and legs. So there’s a variety of different things that you need to manage to adequately take care of this patient population.
Joe Coe 03:29
Well thank you so much for your work and insight. This is really important to understand these comorbidities and make sure that patients are getting the proper treatment. I really appreciate it. My pleasure. Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe and I will see you next time.
Narrator 03:55
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
This week on Talking Head Pain, Joe is joined by Winnielyn Bautista, a physical therapist assistant, a migraine patient, and creator of the “Healing_W_ChronicMigraine,” an Instagram account dedicated to sharing Winnielyn’s migraine journey through engaging and empowering content.
Join Joe and Winnielyn as they discuss migraine hangovers, being a young person with a chronic disease, and having migraine attacks in the workplace. We also hear from Dr. Peter McAllister as he shares his advice on migraine hangovers and navigating migraine in the workplace.
Healing with Chronic Migraine: A Conversation with Winnielyn Bautista
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Winnielyn Bautista 00:09
My vision started slowly going from a gray foggy, and oh my goodness, I was so afraid and even talking about it with you, Joe, it makes me really scared.
Joe Coe 00:21
Hello, and welcome to Talking Head Pain. I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation. And I’ve lived with migraine for over 20 years. I’m here today with Winnielyn. She’s a physical therapist assistant and an amazing migraine Instagram content creator. I have been following her Instagram “Healing with Chronic Migraine” now for a little bit. And it’s a really inspiring platform. So I’m so happy that you’re here today with us, Winnielyn. How are you feeling?
Winnielyn Bautista 00:51
I’m hanging in there. How are you doing?
Joe Coe 00:53
You know, it’s it’s one of those days where you have that like low nagging, like threatening of a migraine, but it’s not quite there. But it’s just enough to remind you that you have this. So mostly good, really happy that we’re talking and I think that I’ll feel better after this discussion than I did before it. So with that said, can you walk us through your worst migraine attack? What did it feel like? What went through your head?
Winnielyn Bautista 01:20
So my worst migraine attack actually was the reason why I decided to seek medical attention. I was actually meeting up with a friend that day. And probably that previous week, or couple days before that I wasn’t taking good care of myself, I wasn’t getting enough sleep. My anxiety and stress levels were pretty high. Yhat day or that morning, I didn’t eat and the weather was constantly changing that day. And I was like, “You know what, I’m still gonna go to this meet up with a friend this morning. Just grab some coffee and see how it goes.” And this was in May 2020. So you know, everything was closed. And the global pandemic was extremely, you know, just changing everybody’s lives. And we were just trying to go with the flow with everything changing, right. So I met with a friend, I finally went home, because we were not allowed to use the restroom, everything’s closed. And then I just remember my ear clogging. And then slowly, I was in the kitchen standing doing whatever I was doing and my vision slowly, you know, my vision started slowly going from a gray foggy from my visual field, my visual field basically started to fill in with the image of cloudiness, and oh my goodness, I was so afraid and even talking about it with you, Joe, it makes me really, you know, scared and like reminiscing that time because I thought, “Am I going to lose consciousness? What’s going on?” This is my vision, you know? So immediately I was like, “Okay, I need to somehow get from the kitchen to my bedroom.” And luckily I was using you know, compensatory strategies. I was using my hands and trying to walk along the walls to kind of feel because my vision was slowly going away with this image of gray, cloudy. Somehow was able to get from the kitchen to the bedroom, and I asked my mom, “Can I get the blood pressure cuff,” and everything was normal. And then I remember regaining my visual field back and I just felt like I had the worst hangover ever. I felt so drained. So fatigue, and my pain level, if I could remember, it was probably at the high eight out of ten. So I was definitely in the red zone. I was completely wiped out for the rest of the day. I couldn’t do anything at all.
Joe Coe 03:37
To better understand what’s happening to us during a migraine hangover, I turned to Dr. Peter McAllister.
Peter McAllister, M.D. 03:44
We used to think and many people still think of migraine as the pain, but really the pain is just the middle of it. In fact, as your audience probably knows, some people have migraine without ever having the pain of migraine. So migraine is a disorder that begins in the central nervous system. It then turns on pain nerves around the head, and then it goes back into the central nervous system. It starts with the prodrome, in which you feel a bit off, you’re kind of tired, you’re not as sharp, then the pain comes the nausea, etc. But a big phase of it that can last 12 hours to 3 days is this postdrome, this hangover, this washed out feeling crummy sensation. That’s still the migraine, it’s still going on. You’re having cognitive issues, it’s just that it’s back in the central nervous system. It’s outside the brain because the brain doesn’t feel a thing, the brain is insensate. So all of the pain that we feel in migraine comes from pain nerves, around the scalp and in the meninges and the eyes and the nose, etc. When it goes back into the brain, that’s when you have the hangover. Many of my patients say, “The pain is pretty bad but it’s this washed out tired cognitively slow feeling that’s the biggest thing that disables me from being able to work.” We think that jumping on one of the good acute medications early in the cycle of that migraine can not only take away the light and sound sensitivity, the nausea and the pain, that’s what they’re approved to do, but they probably shorten that hangover. So you should work with your doctor to find the right acute migraine med. Not just because you want your pain gone, but hopefully you want to shorten that really crummy postdrome, or hangover, afterward.
Joe Coe 05:26
The hangover feeling is something that I can totally relate to. And I sometimes have explained it to friends and others as like the hangover without the fun the night before. I remember losing my words once and I was trying to order coffee. And I just told them I was hungover because I felt like that was more socially acceptable than trying to explain migraine attack, but totally relate to that. And that’s so scary, the vision implication and you’re fortunate that you have some training that you were able to know to use your hands to feel the wall and that you checked your blood pressure and, and all those things. I want to pivot to how you took this negative and made it a positive. You created an Instagram account “Healing_W_chronicmigraine” to explore your journey with migraine. What made you do that and what have been some of the most valuable lessons you’ve learned while you’ve been producing this content?
Winnielyn Bautista 06:26
I think my main reasons, or my top two reasons because there’s so many reasons I can list but number one was to have somebody that understands me that gets it because explaining migraine and my migraine journey, it just, it takes a while. You need, I don’t know how many days but, it’s beautiful to be part of the community that just understand too even though our journeys are so different, they just they just get it and I think that’s amazing. So number one is to connect and have support. And number two is really raise awareness because I feel like there’s such a big stigma with migraine and chronic migraine is because we don’t talk about it a lot. Like people are just thinking like, “Oh disease, she has a disease,” they want to stare away there. It’s not you know, quote unquote attractive, but I feel like if we want really want to break the stigma, I want to talk about it.
Joe Coe 07:15
I love the way you talk about it. I’m sure putting yourself out there you’ve gotten some really absurd recommendations or comments. What are some of the most absurd quote unquote treatments or cures that people have slid into your DM with?
Winnielyn Bautista 07:29
Um, you know, surprisingly not that many. If I could remember, probably trying some essential oils.
Joe Coe 07:38
I just posted a picture of an attack and like I got six different comments around like different- I’m like I do this for a living like I have a podcast called Talking Head Pain, I talk to really smart people about it. But essential oils was one of them. And another one was, “I don’t know if you’ve tried this, but some baking soda and lemon.” This is what this friend sent to me. And I was like, “I’m so glad that worked for your friend.” And that’s how I respond to people. I’m glad that worked for you. Or I’m glad that you know you sell essential oils and this is your side hustle. I’m not partaking. But so I’m surprised that you didn’t get more of that. Maybe people just want me to try all though weird things.
Winnielyn Bautista 08:24
And now I do remember one because yeah, it’s it’s not very common. At least people on Instagram maybe in like in, you know real life, people will say something random and I just can’t remember at this time, but yoga for sure. On Instagram, people have mentioned like, “Oh, try yoga. It helps with everything.”
Joe Coe 08:42
So when you were first diagnosed, how did you function at work?
Winnielyn Bautista 08:46
When I was diagnosed in 2020 with chronic migraine, I honestly didn’t know much about chronic migraine and how debilitating it truly is for each individual like uniquely, right. So I was naively still working full time as a PTA and as PTA, we are always on our feet working with patients with so many high complexity to low complexity, you know, diagnosis. So that required a lot of energy and non stop working. So it wasn’t really a friendly migraine environment. So I really surprised myself like thinking back at the time how I was able to work a little bit longer after I was diagnosed but it did slowly start to creep on me and I needed time off. So I have to communicate with my boss at the time that I need time off for doctor’s appointments to figure out what’s going on with me, is this the chronic migraine or different other diagnosis that I need to figure out what’s going on with my body because it wasn’t just chronic migraine I was dealing with. I was dealing with more health issues at the time at 2020. And luckily with my job, I’m really grateful that it’s somewhat flexible because when I do need to have a weekday to take off for doctor’s appointments if necessary, I was able to work the weekends to make up for it. Was it inconvenient? Did I feel guilty? Yes, it was really hard. Because you know, when you’re young and you’re used to being in control of your body, it just takes yourself into emotional toll, like, “What’s going on? Like, can I not perform? Am I less of a person now that I have some sort of disability?” It was a lot going on in your 2020.
Joe Coe 10:28
How have you come to embrace the reality of being a young person with a chronic disease and/or redefine control?
Winnielyn Bautista 10:37
I think, for me, I just had to accept it. I just had this perception of, “Oh, I’m a young person, I’m so used to being control.” I’ve been pretty, quote unquote, healthy for quite a while. So I had to really think about just accepting my reality now.
Joe Coe 10:55
And how about in 2022, at your current job? How has navigating migraine been as a physical therapist assistant now?
Winnielyn Bautista 11:05
I’m lucky that all the bosses that I work under currently, now, they themselves have had chronic migraine or migraine symptoms themselves, or they know somebody, a friend or a family that has dealt with it. So they are really aware of how debilitating it can be. So that was a great step to communicating with them, since they are aware of that. And right now, I’m still working on the best treatment plan to manage my chronic migraine. And I’m only working on the weekends right now.
Joe Coe 11:37
Really interesting. I’ve been bumping into a lot of physical therapists or physical therapy, and it’s a fascinating field. Has there been anything that you’ve learned in that field that the migraine community should know?
Winnielyn Bautista 11:51
I feel like what the migraine community should know about physical therapy is we are really there to improve your quality of life, and really try to figure out what’s meaningful for you, and try to focus on that. And use that as part of a way to hear the treatments. Like it doesn’t have to be always exercise, it could be functional mobility, in order for you to you know, stand longer at the sink, stand longer doing whatever you love to do gardening, if there’s any activities that you love to do, tell your physical therapist, tell your occupational therapist and they can just really focus on that activity. Because that’s the reason why I love this field is because we’re really looking at quality of life and try to figure out ways for you to live each day fully and not let your you know, disabilities, try to not let that control your life. Try to coexist with your disabilities.
Joe Coe 12:51
That’s a really good point coexisting with your disability. Have you ever gotten a migraine attack while being at work?
Winnielyn Bautista 12:58
Oh, yes. So actually, in year 2021, I was still figuring things out, I realized that I would get visual auras once a month at least. And I was not a spoony yet. I was still able to, you know, complete my caseload, do all my documentation. And then suddenly, when I’m over exerting myself and when I’m overwhelmed, and I’m just like, because where I work is a long term facility. That’s my main setting, which is the inpatient setting the geriatric population, and it’s overly like, there’s sensory overload everywhere. So I didn’t know that. I didn’t know that my brain is hypersensitive, that’s what a chronic migraine is, is having a hypersensitive brain. So I honestly would be the, the co worker that needed to lay down on the rehab that at least once a month in kind of closer to, you know, going into 2020. So luckily, I still had the energy to work and complete my job, but it was really the visual aura that really was debilitating and I had to stop whatever I was doing and lay down
Joe Coe 14:10
As Winnielyn talks about, there are certain ways we can handle getting a migraine while at work. I asked Dr. McAllister to share some tips on what we should do if we get a migraine attack while working.
Peter McAllister, M.D. 14:22
Well, you know, it depends on their job. Clearly, if they’re operating heavy machinery, they should likely refrain. If you have an office based job, I think that you should find the drug that is the most helpful for knocking out the pain and other symptoms with the least amount of side effects because really, you want to be able to return to functionality. And whether that’s, I have a patient who walks to the men’s room and does a sumatriptan shot in the thigh and 20 minutes can return to work. I have some who can take one of the new CGRP drugs, the pills, and rest for 20-30 minutes and return to work. If you can control your symptoms, you should continue on with your day. Because you know, one of the biggest problems with migraine, a disorder that’s not deadly, is that it’s so disabling. And if you lose enough days from work, it’s not going to look favorably upon you at review time. So I had a patient who would take a nasal spray that worked great on the migraine, but they had to sleep three hours. That would be a bad idea in the office that goes back to, Joe, why do we have a migraine toolkit because there might be a medicine you take in the evening when you’re home that knocks out your headache and helps you sleep. But during the day, you want the one with the least amount of side effects that returns you to functionality as soon as possible.
Joe Coe 15:39
How is finding the right migraine treatments changed and or improved your life?
Winnielyn Bautista 15:45
I would say that finding the right migraine treatment helped me significantly because it allows me to be more independent. And I think you know, when you’re in your 30s you’re expected to take care of your loved ones. You know, society’s expectations of you are high at that time. It allows me to, at least, kind of focus on the things that make me happy. I think I realized, you know, kind of the reason why I called it healing underscore, W, with chronic migraine is that it’s not only a migraine account, it’s so much more than that, to me, at least. Chronic migraine gave birth to so many things that I was doing wrong with my health, may it be physically neglecting myself or mentally, emotionally, not listening to my body when I need to listen to my body. So it’s been it’s more of like a holistic approach for me. I feel like my journey is still beginning.
Joe Coe 16:39
Fascinating the idea of migraine giving birth to this wellness journey. And that’s a gift that this horrible chronic disease gave you. And a gift that you’re sharing with so many people, which is amazing. Want to circle back and talk a little bit more about the Instagram account, what are some of your favorite pieces of content that you develop? Can you describe them to us?
Winnielyn Bautista 17:04
I really like creating content that obviously are relatable. But at the same time, I just remember, you know, when I was working full time, and after work, I’m completely exhausted. If I’m going to go on Instagram, I want something entertaining. And that’s just my opinion, I didn’t really gravitate when I would look on my app to the information that were like long written posts, like because I’m my brain is exhausted after work. So if I want to, you know, target the general population and increase awareness of how debilitating chronic migraine is, I really want to use my account to capture and captivate the attention first. And then also use the knowledge that I have and educate them. So I’m basically here to entertain and also educate the general population along with you know, connecting with the community.
Joe Coe 17:57
I love that. That’s what social media should be used for. What would you tell people that are listening today to do to advocate with their health care providers?
Winnielyn Bautista 18:07
What I personally do is I always try to come prepared. It’s better to be overly prepared, versus, you know, not preparing anything at all. I personally just write everything, all the points I want to talk about, and even know, provide a list and I know how it feels, how it feels for you know, for a health care provider to come in and go out like, “Wait, I still have more to say.” So I think what I’ve been hearing too is it’s it helps when you have somebody else with you, so you guys can both advocate. But I personally try to show them that I’m coming from a place that is calm, and I’m trying to be as professional as possible. So I’m trying to like create that vibe that I’m not gonna be like, “This is my problem,” because I think people shut down when they hear so much information at a time. So I try to create that environment, a friendly environment and be like, “Okay, so these are my symptoms, what are your thoughts?” I never try to sound too demanding, but I kind of like say, “This is what I’m dealing with, what are your thoughts?” So I make sure I have a list. And then I also try to ask them what their thoughts are from what I brought to them at the office.
Joe Coe 19:22
That’s a really great approach that a lot of us can learn from with healthcare providers to view it as a team and to go in and think of it as almost a meeting like you’re preparing for a meeting and you’re bringing the materials that you need for that meeting and that discussion. And you’re talking almost like colleagues, which I think is really important. There’s a concept called shared decision making. So it’s that you and you know this being in the healthcare field, where the health care provider and the patient come up to the decision together and by you asking, “What do you think about this,” that creates that shift in paradigm that makes it easier for the healthcare provider who should be doing this anyway, but provides more opportunity to do it. And I think that that’s, we need every advantage we can get when we’re dealing with a chronic disease. So I like those tips. I appreciate your time today. It was amazing. And the energy that you give to our community is beautiful. And thank you for spending this time with me on Talking Head Pain.
Winnielyn Bautista 20:34
And thank you so much for letting me have a voice and asking you to be a guest speaker here.
Joe Coe 20:40
Thank you so much for listening to this episode of Talking Head Pain, the podcast to confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time. This season of Talking Head Pain was made possible with support from Amgen, a sponsor of the Global Healthy Living Foundation.
Narrator 21:03
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
This week on Talking Head Pain, Joe is joined by Danielle Ali, cohost of the Wellness Evolution Podcast and Senior Systems Analyst at GHLF.
In this episode, join Joe and Danielle as they talk about needle phobia and the anticipation of getting a shot. As a bonus, Danielle walks us through a breathing exercise we can use when we need an injection.
Breathing Through Needle Phobia: A Conversation with Danielle Ali
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Danielle Ali 00:10
On the journey of bettering our health and working towards a pain free life, we sometimes have to face some uncomfortable treatment options that flare up our anxieties and fears.
Joe Coe 00:21
Hello and welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. Really excited today for this crossover episode of Talking Head Pain. I’m joined by my colleague and co-host of Wellness Evolution, Danielle. Danielle and I are going to talk about needlephobia, something that many of us experience and unfortunately, living with a chronic disease, we’re getting poked and prodded often. So if you’ve ever been nervous about your migraine treatment, or even getting routine bloodwork, this is something that could help you. So Danielle, welcome to Talking Head Pain. I’m so glad that you can join us today.
Danielle Ali 01:07
Hi, Joe, I’m so glad that you invited me to join you. Needlephobia is something that I’ve faced and I’m glad to bring light to it. This is exciting.
Joe Coe 01:16
People don’t know I am horrified of needles. I have passed out from them from routine blood work, from getting migraine treatments. And it’s something that I’ve had to really think about how I can move past some of that fear to enable myself to get these treatments and to take control of my health. So I’m really excited that we’re going to talk about that fear. And also you’re going to provide some really good tactics through a breathing activity and exercise that can help people. I inadvertently did some of these things without formalizing it. And I think it’ll be good to formalize that.
Danielle Ali 01:56
I think we all do in formalized ways to handle our anxieties and our fears. And I think that sometimes just having someone formalize it and say, “Hey, this is a moment for you to focus on this and you’re validated in it,” is so powerful, but with your fear of needles, what was the biggest obstacle that you faced, especially in your migraine treatment?
Joe Coe 02:17
I would definitely say the anticipation of it. And the thinking about it before it was happening. Even with getting the vaccine for COVID, I was super nervous. I scheduled it and I kind of wish I didn’t have to schedule it so out in advance, because if I just go spur of the moment, I have less time to worry. But before I got that, and before I get migraine treatments that have to do with injections, I tell myself, “Joe, this is good for you. This vaccine is good for you. This migraine treatment is good for you, Joe, this is what your body needs. Your body needs this, this is good for your body.” And I try to just get in the mind frame that while it is scary, it’s something that I need and is good for me. So my body embrace it, don’t resist that. And I think that that has helped me going with the flow and not trying to resist. I’ve tensed up to the point when blood wouldn’t come out when I was getting blood work because they’re like, You’re too tense. Your blood isn’t coming out, you have to relax.” So relaxing, breathing, displacing my mind a little bit so I distract myself. I tell the person that is doing it. Or if I’m doing it to myself, you have to distract yourself with music or by talking to me so I learned all about phlebotomist life. I’m like, let me interview you. “Where do you live? What do you like to do for fun?” Things that are not related to the blood work helped me get past that.
Danielle Ali 03:43
I definitely feel you on so many of those points. I think anxiety is the hardest thing to overcome. Because it’s generally just this anticipation. You know, once you face the thing, you just do it in fear, and then it’s over. But the anticipation of it delays it so much. My fear of needles goes way, way back. I remember taking bloodwork and having people having to hold me down because I would just like go into complete fight mode, I would kick and scream. And you know, one thing that wasn’t great was hearing, “Oh, come on, just get it done. Or stop being such a baby. Or look, they have to do this needle on you.” Those things were never helping the anxiety. So I love that you realize that you know what, I need to tell myself why I’m doing this. I need to be my cheerleader. I need to say this is the betterment of you, I gotta be my own support for this. And that I think is so important that people kind of look to other people so much for support. And sometimes people don’t know how to support you unless you know how to support yourself. So the fact that you’re able to, you know, identify that and be like, “Okay, what am I going to tell myself, you know, if no one else is going to tell me what I need to hear, I gotta tell it to myself,” and that’s just absolutely brilliant. And I think that that’s also something I remember you telling me that. And I was like, wow, I should really start doing that. Because I would just close my eyes and breathe through it and cry. They’d be like, “Do not move, do not move.” But yeah, I definitely feel that.
Joe Coe 05:16
We got to hype ourselves up, like, let’s go, let’s do it. Also some other practical tips that have been validated by doctors, which is really nice when you hear from like a cardiologist like, oh, that makes sense; staying adequately hydrated. And we hear that a lot. But it’s like, that helps. It helps with your vein, it also helps your overall being so like, make sure you have enough water before you do anything that’s stressful like that. To be honest, like you said, and understand that anxiety is real, and you might not just get over it, it’s a process and to talk to your healthcare provider about that anxiety. I hear that sometimes people if they say, get prescribed an injection, I’ve heard anecdotally that when it’s done in the doctor’s office, they have good results, and then somehow the results trail off. And it’s because some patients don’t feel like they want to be honest that they’re not giving themselves the injection at home because they feel shame or they’re embarrassed, or they don’t want the doctor to think that they’re not doing what they’re told. So be honest, if you’re having problems with your treatment, talk to your doctor, because there are ways that we can work through it, like you and I are talking about today that health care providers can help. So I’m really glad we’re having this discussion. It’s so important.
Danielle Ali 06:29
I definitely agree. I think, you know, it’s not a one size fits all. And I think people tend to go into doctors’ offices, and they can be like, “Okay, just try this,” and then and then feel shame when it doesn’t work. It’s like, “It didn’t work for me, what’s wrong with me?” It’s like, “Okay, let’s let’s talk about that. Why didn’t it work? Let’s try to find something more catered to you.” And that can be really hard too, when you’re fighting with anxiety. Sometimes you just gotta acknowledge what you’re dealing with and give that thing, the anxiety monster as I like to call it, room and space and be like you’re here.
Joe Coe 07:04
Danielle, can you walk us through a breathing activity that you think the migraine community and people that might be getting injections for their migraine could find helpful?
Danielle Ali 07:15
Sure, I put together something super simple. Just to get into the mindset of giving that anxiety space. On the journey of bettering our health and working towards a pain free life, we sometimes have to face some uncomfortable treatment options that flare up our anxieties and fears that cause real barriers to treatment. We’ve all heard the term mind over matter, which has felt very dismissive and doesn’t help in overcoming the real fears and anxieties that some treatment plans bring to surface. We hope that this brief breathing practice can be a tool in helping you on your unique journey. If this breathing technique doesn’t fit your current needs. explore other breathing techniques by searching the Wellness Evolution podcast. Let’s begin. Find yourself in a physically comfortable position and say out loud to yourself, “The treatment I’m about to receive is for the betterment of my health. The physical discomfort of this treatment is brief compared to the benefits that will come when this works. I have faced much scarier monsters and I will face the ones today and overcome.” Now let’s take a moment to let our breath support us. Inhale. Inhale Again, inhale. One more time, inhale. Exhale it all out. How’re you feeling? What does your body need right now? You are the expert of yourself and you know what you need to overcome and continue on your treatment journey. We hope this small moment provide some support and remind you that you are not alone.
Joe Coe 09:56
Danielle, thank you so much for your insight and energy today and for leading us through a very impactful breathing exercise that I know will help a lot of folks.
Danielle Ali 10:09
It was great to be here.
Joe Coe 10:11
Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe and I will see you next time. This season of Talking Head Pain was made possible with support from Amgen, a sponsor of the Global Healthy Living Foundation.
Narrator 10:34
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
This week on Talking Head Pain, Joe is joined by Michelle Tracy, an advocate, writer, and migraine patient. On social media, Michelle is very open about her journey with migraine and mental health. She is known for encouraging others to signal their need for support by posting the “Bat Signal,” a visible representation of needing help.
Join Joe and Michelle as they discuss the journey of finding a therapist, signaling for help, and the impact that new treatments have had on Michelle’s wellness.
Sending the Bat Signal: A Conversation with Michelle Tracy
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Michelle Tracy 00:10
I got so close to losing hope right before I found something that was helpful for me. And I think about what would have happened if I hadn’t continued pursuing things.
Joe Coe 00:23
Hello, and welcome to Talking Head Pain, the podcast that confronts head pain, head on. I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m here today with a dear friend, Michelle Tracy, who is an advocate, a writer and an all over amazing person that inspires me and so many in our community. Michelle, I’m so happy that you’re here today. How are you feeling?
Michelle Tracy 00:51
I’m actually feeling great today. I am so excited to be here, I have wanted to be on this podcast. I’m an avid listener. So I’m just really excited to have the opportunity.
Joe Coe 01:01
I’m so glad that we are able to have this discussion and to keep it real with the audience since you can’t see me, I’m currently without my lights on. I have a heating pad over my shoulders and neck. Had a mild injury to my neck that’s been causing pain and headache and migraine like symptoms. So the reality is sometimes we are not feeling well. And I try to be honest when I’m not. Snd really feel good, though about having this discussion with you. I think that that will make me feel better by the end of it. Let’s hop right in. And I asked most of the guests that I have on the show what their worst migraine attack was like. What was yours? Like? How did you feel, what went through your head?
Michelle Tracy 01:43
So my worst migraine attack, I would say was probably my first one. Especially because I just didn’t know what was happening. My family didn’t know what was happening. I was 19 years old. It was the summer before my sophomore year in college. And I had really severe head pain on the left side of my forehead back down into the base of my skull. I was really nauseated, vomiting a ton, very sensitive to light and sound and smell. Very sort of dizzy vertigo type feelings. And I was absolutely terrified. And so you know, my mom rushed me to the emergency room, my dad stayed home with my younger brother. And I happen to have a really incredible doctor at the ER who knew migraine, his wife had migraine, his daughter had migraine. He explained to me what was happening and that he thought it was migraine and referred me to a neurologist. And I thought, “This is just sort of like a freak accident. Like I don’t I don’t need to go to a neurologist.” But I did need to go to a neurologist. And so I’m very grateful that he caught it and explained to us what was happening, did the tests to rule out any sort of things that we were fearing and treated my symptoms in the ER and then sent me on my way.
Joe Coe 03:10
Both a horrifying but also powerfully positive experience that you were able to get to the right doctor at the right time and get diagnosed relatively quickly. How did you turn this experience now that you have been diagnosed with migraine, you develop chronic migraine. How did you take that experience and all the negative from that and turn it to a positive by becoming an advocate?
Michelle Tracy 03:34
At my worst I was having attacks pretty much every day, symptoms pretty much 24/7. And I got really frustrated because I had been really active as a preschool teacher and in different theater and singing productions around my town. And all of a sudden, I found myself just laying in the dark, a lot of the time. Felt really lonely, it felt really isolating. And one thing that I’ve always loved to do is write and so I thought, “I’m going to write about this. And I’m just going to put it out there and see what happens.” And so I did that. I went back and I laid down and got up like eight hours later. And there were a bunch of comments and messages from people saying, “This really helped me identify with this,” or having additional questions about what I wrote. And I thought, wow, even while I’m asleep in bed and like very sick, I can be helping other people at the same time with my writing. And that gave me renewed purpose for what I was going to do because I wanted to turn the suffering into something and we do have to accept that a certain amount of suffering comes with living our lives, but I really wanted to take it and do something with it and I felt like writing and speaking were things that I could bring to the table. And so that’s where I started.
Joe Coe 05:05
So powerful. And that’s how I first met you, at a writing and blogging summit with advocates probably six or seven years ago. And we’ve stayed in touch since. So that brought us together. Something that inspires me that you do on social media is when things are rough for you, you put out the bat signal for support or encouragement or just, you know, pictures of animals, whatever works to make you and others feel supported. Why did you start doing that? And how has it been talking about mental health and needing community and support for you, during this migraine process?
Michelle Tracy 05:42
I love this question, I have a very dear friend named May and she was a teacher at the same time I was and she knew me slightly before my diagnosis of migraine, and then she’s known me since then. And she’s actually the one who brought up the idea one day of the bat signal, saying, you know, “We don’t talk enough sometimes about when things are difficult in our lives, or when we need help. So we’ll just put out this picture of the bat signal. And all of the superheroes in our life can swoop in and help us and then we’ll do the same when we see their bat signal.” And I found that to be just such a pure and kind and authentic, so very May, concept, I loved it. And when I saw it, I was having a hard time. So I figured, you know, I’ll throw it up there and see what happens. And the response to it was incredible. People loved it. There were so many comments, not only supporting me, but saying, “Thank you for giving me permission to do this, permission to ask for help or support, permission to share just as much as I want to of what’s going on without having to tell everyone and still be able to ask for help.” There have been people since then, who have shared the bat signal on their own. And I always try to find it when they do but social media, you know, there are evils of social media, of course. And then there are these truly wonderful things where you can connect with people all over the world in different ways and on different things. And that just sort of showed me the best of social media. You know, I think that mental health is really inseparable in some ways from migraine, and especially chronic migraine. Because for me, it was nearly impossible not to have some anxiety or some depression or different things about what was happening. And I know there’s a lot of debate about, you know, which came first, is it migraine or depression or anxiety. And for me, it was pretty clear cut. I already had Generalized Anxiety Disorder, obsessive compulsive disorder and panic disorder well prior to my life with migraine, and then depression came in the year that followed my diagnosis and sort of the explosion of chronic migraine into my life. You know, I see a therapist weekly, I participate in something called dialectical behavior therapy, or DBT, which is a skills based program. So when you’re in DBT, you go through a skills group, and it’s a group of about 10 to 12 people. And you’re taught these different skills like mindfulness, distress tolerance, emotion regulation, interpersonal effectiveness, things like that. And then you have individual sessions with your therapist. And I have found that particular modality of treatment, DBT, to be particularly helpful for me with migraine. And I think that’s part of why I talk about it so much because it didn’t get rid of migraine, but it certainly was able to help me deal with what was going on.
Joe Coe 09:15
All of this is so important. And thank you for being so open. And that’s why I love the bat signal. I haven’t had the courage to use it, but I’ve definitely participated in yours. I want to know, as a follow up, how long did it take you to find a therapist or modality that worked for you?
Michelle Tracy 09:33
So this is a great question. I started seeing a child psychiatrist actually when I was 13 years old, and I sort of went to a bunch of different therapists for a while trying to find one that I really connected with. Because I think it’s it’s really important to feel like you can trust and open up to whomever you’re going to be sharing your life with in a therapeutic setting. And so it wasn’t really until about, I’m gonna say seven years ago, maybe a little bit longer than that, that I found DBT. And I found my previous therapist who’s moved on to do other things, and my current therapist. So it took me a really long time and a lot of effort going from person to person and giving them a chance. I didn’t just go for one visit, and then decide that they weren’t it. I really tried to build a relationship. And when I found DBT, and I found these two therapists, it was instantaneous, the connection. My first session with Tom, who was my first DBT therapist, I went in, I knew sort of the routine where you go in and you sort of give them a synopsis of what’s going on in your life. I was incredibly sick, I was in so much pain, physically and emotionally. And at the end of the story about migraine and everything that was going on, he just looked at me and went, “Wow, that sucks.” And I just crumbled, because he wasn’t trying to fix me, he wasn’t trying to tell me to buck up or look on the bright side, or here’s what we can do about it. He was just like, “This is this is lousy,” and I needed that piece of validation more than I realized. And it really opens a whole new world of mental health for me and therapy for me. After hearing that it was just like a weight was lifted off my shoulders.
Joe Coe 11:47
For many with migraine, they may be hesitant about speaking to a therapist. I asked Dr. McAlister about how different modalities of psychotherapy could be beneficial for migraine patients.
Peter McAllister, M.D. 11:58
We can start by saying that migraine is a genetically inherited medical condition as quote real as any other medical condition. But having said that, like a number of other medical conditions, it can be worse by stressors, internal and external. So I find psychotherapy invaluable for people who have a trigger or triggers that respond to psychotherapy. So if someone has anxiety, depression, and migraine, post traumatic stress disorder, and migraine, any number of those, we have our psychotherapist work with them on mindfulness and meditation, and other modalities, and it has often a profound effect as good or better than most of the medications we use.
Joe Coe 12:45
Yeah, it’s powerful when someone outside of our world can see and acknowledge that, you know, it’s not fair. And it’s messed up. And we don’t hear that a lot. So I could definitely see how that could be a transformative moment. I want to dig a little deeper, which I say a lot on the show, about the process to find a therapist. And I think that that’s something that a lot of us don’t really take into consideration. And we’re told go to therapy, you’ll feel better, when in fact, we’re not told you have to really find the right one, and they have to be good for you. So it’s less of a question more of an observation, that I’m glad that you did that work and that you’re sharing that here, because a therapist that works for me isn’t necessarily going to work for you, or a modality that works for me isn’t going to work for you and vice versa. And I think we can’t approach our wellness, and our chronic disease with a cookie cutter one size approach. I know from knowing you that at one point in your life, you weren’t well managed with migraine, and now you are. How has newer medications really impacted your life and what is that done for you?
Michelle Tracy 14:07
I have been living with migraines since August of 2004. So quite quite a while. I think actually I was I had some childhood versions of it, but we didn’t recognize it at the time. But I was really unmanaged almost completely until 2018. So like 14 years of just trying to cobble together whatever we could to keep me out of the ER because I vomit so much with my attacks that at a certain point you have to go and get something to stop the vomiting. And so I had tried so many things and was honestly losing a little bit of hope. But my headache specialist and my primary care physician who are incredible. They’re the leaders of what I call my Dream Team, they encouraged me to try one of the new injectable medications. And I was told, you know, “This is preventative medication, it’s not necessarily going to break the cycle that you’re in, you know, be cautiously optimistic about it.” And so I started using the monthly injectable. And I went from, you know, attacks every day to about seven days a month. And then like two to four days a month, which was something I had never allowed myself to dream of. I used to say to myself, “If I can get it to the point where I only have to go to the emergency room, once a week, I will be so grateful,” like I prayed for that. And so having two to four attacks per month, it’s wonderful. And it’s also really bizarre. And when it first happened, I didn’t really know what to do with myself. And I had a lot of I refer to it, I may not be using the correct term. But sort of survivor’s guilt, I felt like I didn’t deserve to be the one who had the medication work for them. I had, you know, great friends who have chronic migraine who have jobs or who have kids, or who have partners, or, you know, all different kinds of things. And I just didn’t feel like I deserved it. And I also wanted to be very careful about not shoving it in other people’s faces, because I know that when I was at my sickest, and there were other people who would be like, “This works. And this works.” Of course, there was a part of me that was like, I’m so glad that works. And then there was another part of me that’s like, why not me? Like, why can’t I have this, and then there was a third piece to it, which is that my form of OCD makes me a little bit superstitious. And that coupled with anxiety made me not want to say anything out loud, about what was happening, because I didn’t want to jinx it, so to speak. And so it took me a while to really talk about it. I got very actually depressed right after it started working because of all of those things together. Especially because everyone around me was like, “You’re fixed now. So what are you going to do, like, you’re going to go back to school, you’re going to do this, you go when you’re gonna get married?” And it was just like, I don’t know, when the other shoe is gonna drop. I don’t want to disappoint all these people. I’m also not fixed because I wasn’t broken. But also like the treatment isn’t a cure for me, I do still get attacks each month. And so it was very overwhelming and scary. But I’m also really grateful for the things that it has allowed me to do that I thought I would never do again, like sing and perform with a choir or get a poem published in a book or different things like that. So it’s been a wild roller coaster.
Joe Coe 18:18
So appreciate you sharing all of this. Particularly something that resonated with me listening to your story is, I also have responded really well to new treatments. And I wasn’t very well managed, at least now I know in retrospect, that I wasn’t well managed on other treatments, because it’s not normal to have a headache every day. I say that to everyone. I’m like if you’re having a headache every day, there’s something wrong. It’s not normal. I thought it was normal that people just had a headache every day. So when I started to have things that responded really well, I too, and I think it’s because we’re both very caring people, I didn’t want to hurt anyone by sharing that it helped me, because I know that there are so many people struggling and I heard you say a very similar thing to that. And I think as advocates, that’s a line that we have to balance, like sharing our personal experience also knowing that it’s our personal experience and others might not have it. Others might have zero headaches from treatments too, so it can go in the other direction. But it’s definitely something I’ve grappled with in sharing my story, my wellness journey, you know, trying different things, both pharmacological and non pharmacological, to manage, you know, this disease. So really important and impactful that you shared that. I want to know how it felt to be able to sing again, in your choir.
Michelle Tracy 19:43
It was a really emotional, really incredible experience for me. My dad’s a singer and a musician. My mom’s always singing, my brothers playing guitar. I come from a very musical family and so I I’ve been singing since I could talk, essentially. And, you know, in high school and early college, I was involved in musical theater and choir and different things where I was singing every day. And then all of a sudden, there was this decade and a half, where if I was able to sing, it was sort of like very rarely and like sometimes in my room, kind of thing. It wasn’t the performing, I feel most at home on stage, which I know is not the case for a lot of people. But it was early August of 2019, when I got to sing, and it was a Motown inspired program with our local rock chorus, Rock Voices. I had a solo in the song You Can’t Hurry Love, which is an amazing song that I love. For our concerts, we’re supposed to wear all black, but we can have a splash of color. And my splash of color was, I both deeply regret and deeply do not regret my choice of these entirely too high spiky purple stiletto heels, which looked incredible, felt horrendous. I will never wear them again. But that was my homage sort of to migraine and our community and saying, “I’ve been through this, and I’m here now.” And I really wanted to, like I said, give a nod with the purple color to the migraine community because they were all so supportive, and so kind when seeing the pictures and the videos, and it was just really special.
Joe Coe 21:47
I love that. And for those that don’t know, purple is the color that the migraine community uses to raise awareness about the disease. I feel like I would be missing an opportunity and really be upset if I didn’t ask how Benson is doing.
Michelle Tracy 22:02
He is fantastic. He is at doggy daycare right now. Which is why you don’t hear him in the background. Because like his mama, he is very vocal at all times. But he is an English bulldog. And he’s a little bit over 18 months. And I had never had a dog before. When I was younger, my parents didn’t, you know, weren’t really interested in having one at that time. And then I was so sick, that I couldn’t really care for one. And so having Benson come into my life, and I’m not saying of course that people with migraine can’t have pets. I don’t mean that at all. I just know that for me raising a puppy took a lot and continues to take a lot of time and effort and being alert and aware and so Benson’s a dream come true for me really. It’s something that I’ve always wanted. He’s perfect. And I get him involved in the advocacy things. You’ll see him with Miles for Migraine tee shirts on or you know shades for Shades for Migraine, different things. He loves people and he loves getting involved. So I’m hoping that he’ll get to be at something in person someday, because people are big fans of Benson.
Joe Coe 23:25
I am definitely in that camp. And I love hearing how really pushing and not settling brought you to a place where you’re singing now and finding joy. And you have Benson, who I read a review he gave of Talking Head Pain, it was very nice. So thank you. And it’s just amazing. And the work that you’ve done your advocacy, how you continue while you’re well, or doing better, to do this work. A lot of people will be like, “Alright, I’m gonna go about my life and saying and do all the things that bring me joy,” and forget about the folks that are still struggling. And I really admire and respect that you are sticking with it and continuing to educate, putting out the bat signal, supporting others and being a voice for people that that need it. So I want to end this with any advice you would give to fellow people living with migraine.
Michelle Tracy 24:25
I want to tell you, if I can speak directly to you, the you that is listening to this and Joe to of course, that you’re not a burden. You’re not alone. Your pain is real and it is valid. And it’s so important to be kind with yourself on the days that are the most difficult. And if you can remain cautiously optimistic, even if it’s just the tiniest part of you. I got so close to losing hope right before I found something that was helpful for me. And I think about what would have happened if I hadn’t continued pursuing things. And so I just hope that as so many new things come down the pike, and as we learn so many new things about what migraine is, and how it shows up, that you can keep hope alive and know that you are loved and you are needed in this world. And it wouldn’t be the same without you. You have specific gifts to bring to the world. And I am really grateful to be part of a community of so many incredible people who are fighting back against this disease. And I know it’s really difficult and I see you and I hear you and I love you.
Joe Coe 25:57
Thank you for that from both me and our community. My suspicion is right, I do feel a little bit better after this conversation than before. So I thank you for your energy and time and all that you do. Thank you for being on Talking Head Pain today.
Michelle Tracy 26:16
Thanks so much for having me.
Joe Coe 26:20
Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe and I will see you next time. This season of Talking Head Pain was made possible with support from Amgen, a sponsor of the Global Healthy Living Foundation.
Narrator 26:43
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
This week on Talking Head Pain, Joe is joined by licensed psychologist Dawn Buse, PhD. She’s the Clinical Professor of Neurology at Albert Einstein College of Medicine in New York City, an Assistant Professor in Clinical Health Psychology, the doctoral program at Ferkauf Graduate School of Psychology, and a current fellow of the American Headache Society. Dr. Buse specializes in helping people along the emotional side of their migraine journey, providing a support system to those who need it.
Join Joe and Dr. Buse as they discuss tips to help integrate healthy habits into daily life, and the concept that wellness is not linear.
Living Better with Migraine: A Conversation with Dr. Dawn Buse
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Dr. Dawn Buse 00:10
It’s pretty important that the provider say, “I’m still here with you. I’m not going anywhere.” If someone gets a message that, “Hey, I’m just sending you to a shrink. And you’re out of here because I don’t want to deal with your pain or your migraine.” And that’s a really dismissive stigmatizing thing to say.
Joe Coe 00:28
Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m here today with a really amazing person, Dr. Dawn Buse. She’s the Clinical Professor of Neurology at Albert Einstein College of Medicine in New York City, an Assistant Professor in Clinical Health Psychology, the doctoral program at Ferkauf Graduate School of Psychology, and was the Director of Behavioral Medicine at Montefiore Headache Center. She’s a licensed psychologist, former board member of the American Headache Society, and a current fellow of the American Headache Society. I’m really excited to jump into this conversation with Dr. Buse. So let’s start Dr. Buse. Tell me about what drew you to becoming a clinician and researcher in the field of migraine pain and stress.
Dr. Dawn Buse 01:20
Well, hi, Joe, thank you so much for having me on. I am a fan of your work and a fan of your podcast. So I feel like I’m talking with an amazing person today. So the feelings are mutual. Now, this is a really fun question. Thanks for asking me this. So back when I was a graduate student and an intern Jon Kabat-Zinn had published some work on mindfulness based stress reduction for people with back pain. And I was really excited about that. And as I started to look into mindfulness for pain, I also found Herbert Benson’s work looking at mindfulness and relaxation therapies. And he had actually done some Transcendental Meditation, since the 1970s, for people with cardiac conditions that I started to get really excited about the idea of mind body medicine. So when I was looking for my internships, and my fellowships, focused on pain programs, I got, you know, really fortunate to have training in the Boston area at some amazing hospitals. And I was at Spaulding Rehabilitation Hospital and had two amazing mentors, Elizabeth Loader and Dr. Loader is a former American Headache Society President and Dr. David Biondi. And they just kind of opened up this whole world to me. And then once I got my first job, it was with Dr. Richard Lipton, and that was about 17 years ago now. And I still feel like I’m learning every day. So I’ve been really blessed with amazing mentors, great opportunities, and I just love working with people with migraine and chronic pain. I’ve learned so much from people living with these diseases, and I continue to learn from them every day. It’s an exciting field. And a lot of great things have been going on in the past couple decades. So it’s a great field to be in.
Joe Coe 03:02
I totally agree. And that segues nicely into the topic that I wanted to dive deep into with you today. We know that therapies like Cognitive Behavioral Therapy, or CBT, biofeedback, and relaxation therapies are listed in the American Headache Society’s consensus statement of data supported therapies for migraine prevention. Yet I know and you know, Dr. Buse, that many patients might feel dismissed when offered these modalities that we know could be beneficial. How do practitioners and researchers talk about CBT and similar interventions in a way that affirms and uplifts people that live with chronic disease like migraine?
Dr. Dawn Buse 03:43
Oh, that’s such an important question. I think the way that it’s introduced to someone living with migraine or chronic pain is really important. First, the way you said it was perfect. You said these are therapies with data. And they’re listed in the American Headache Society consensus statement. They’re endorsed by the American Academy of Neurology. They’re endorsed by the American Pain Society. And so I think if if healthcare professionals presented these as data driven therapies, these are therapies that are guideline approved that have evidence for prevention, that might be helpful. Also, if they talked a little bit more about the evidence. So when you go back to the traditional oral preventives for migraine, those would be like the topiramate, the amitriptyline. The rates of the efficacy of those types of therapies are quite similar to the rates of the efficacy of biofeedback or relaxation therapy for prevention and also both about 50%. And also when you combine them, you get this even better outcome. When you combine a medication preventive and behavioral preventive you get even better results, more like a 75% result and it lasts longer. It lasts beyond the time that the medication stops. So I think if they said things like these can be combined, there’s a lot of ways to get to these therapies today. Be it in person, in a group, via an app online, telehealth and that we have evidence that they’re helpful. I think all those things would help. I think also, these are not as easy as taking a medication may be in that they require a lot of time. They require oftentimes, you know, about three months, if you went once a week to about 12 sessions, have maybe 45 minutes to an hour session. Plus they require time in between of practicing, be it practicing CBT exercises, practicing mindfulness, whatever the relaxation practice, whatever practice is given as homework, so they’re a bit labor intensive. And I think that it’d be helpful for healthcare professionals to say, “This is this is not easy, it’s going to take some time, but you’ve got to work it into your schedule, you’ve got to have some discipline,” just like any of the other lifestyle factors that we know play a role in migraine management, like regular exercise and healthy diet and maintaining a healthy weight. These sounds so easy to say, they are very inexpensive. There’s not side effects. And yet, these are some of the hardest things for any human being to do. You’re human, I’m human, our listeners are human, the doctors are human, believe me, they don’t have an easy time either with sticking to an exercise routine, or practicing mindfulness every other day for three months. These are not easy asks, so they are kind of a big challenge. But the benefits may make them worth it.
Joe Coe 06:20
And what about the emotional aspect that patients might have? I know if I’m in a lot of pain as a migraine patient, and my doctor said, maybe you need to talk to someone, I might get offended, I might think that they’re trying to not give me medication that I might need. How do you balance the emotional impact for those that might not be driven by the data and the evidence that we all know is there?
Dr. Dawn Buse 06:45
Absolutely. So hopefully, knowing that these are in the wheelhouse of the kind of data proven therapies might help someone if they do hear their provider say, “I want you to try biofeedback,” for example. But also, it’s pretty important that the provider say, “I’m adding this into your treatment regimen. I’m still here with you, I’m not going anywhere, we’re going to figure out a treatment plan that incorporates multiple modalities, we’re going to do it together, I’m here for you.” Certainly, Joe, if someone gets the message that, “Hey, I’m just sending you to a shrink. And you’re out of here, because I don’t want to deal with your pain or your migraine.” It implies this, it’s all in your head. And that’s a really dismissive stigmatizing thing to say. And honestly, we know that people with migraine and chronic pain, all sorts of chronic pain conditions, fibromyalgia, and Crohn’s have been stigmatized and dismissed by their health care professionals for the past many centuries. And that may happen today. So people feeling stigmatized and dismissed has a real basis to go on. These have been diseases that have been treated that way. And in some cases, I think, possibly when a healthcare professional didn’t feel like they knew what to do, they didn’t feel like they had treatments to offer, they may be dismissive. So a lot of listeners may have had that happen one or many times already in their treatment journey, and they know exactly what you’re talking about. So a health care professional can kind of bring in different people onto the team, they could stay as the quarterback, but they bring in some new people, you probably know the different players better than I do. But you bring in some new people to your team. And you’re really adding on as opposed to this idea that I’m firing you, I’m letting you go, I’m passing you off to a shrink because I don’t believe you. That’s a very different message. You know, Joe, and if someone feels disrespected or not listened to or stigmatized for their health care professional, I would say move on and find a different health care professional. Ultimately, that’s a relationship. You are both the customer as well as someone in that relationship and you deserve to be respected and listened to.
Joe Coe 07:19
It’s really important. I’m glad that you highlighted that. It’s super impactful for patients to hear clinicians and providers and professionals talk in that way because sometimes we don’t have the luxury of meeting folks like you that get it. And in terms of football, I know what a quarterback is and a kicker because we have a former kicker from college football at GHLF. So I know about kicking and quarterbacking so we probably have the same football knowledge. I want to switch gears a little bit and talk about wellness and migraine. Dr. Buse, when we talked before the recording, we spoke a little bit about my wellness journey as a migraine patient, how it’s impacted my migraine disease for the better. I currently exercise daily either through walking, sometimes a little jogging if I’m feeling a little adventurous or strength training. I got into a healthy range of weight for myself, and I eat a much more balanced and nutrient dense diet. It can seem really overwhelming to make these changes at first and it was for me and I didn’t do them all at the same time. What are some tips that you can provide to people to make these big life shifts easier?
Dr. Dawn Buse 10:00
Well, Joe, congratulations. And that’s not easy. So really well done. That’s wonderful. And you actually already included several different tips in what you just said, you didn’t do it all at the same time. So choose one, maybe maybe two, but choose one kind of life modification to start with, start where you are, it’s really easy to compare ourselves to people who are already running a marathon, and they’re on our Facebook friend list, and we see what they’re doing. And we might feel judgmental, that what we’re doing is not enough. Any place you start is valuable, and is enough. So be gentle with yourself, start where you are, make a small goal. And I like to set goals once a week, and just keep building on him. If you make that goal set a small doable goal, we actually talked about smart goals. So they’re specific, they are measurable, they are acceptable, they’re realistic, and they’re time limited. So let’s talk about exercise. So let’s say someone doesn’t move a lot yet, and has a lot of pain with movement, and maybe is carrying more weight than they want to. And maybe they have joint pain and a whole bunch of reasons that they have kind of stopped moving. And that lessening of movement or exercise in their life didn’t happen overnight. That probably took years. And the moving that around turning that around, it’s also not gonna happen overnight, that’s gonna take some time. So for the first week, it might be something, which may sound simple to some people of walking down to their end of the driveway and picking up their mail and walking back to their house. And some people may say, “Oh, that’s not even worth a goal.” It is, that may be your first goal, whatever it is, and then you’d reassess the end of the week. And either you’d kind of stay with that. If that was too hard, maybe it bring it down a little bit. If you accomplish that, we’re going to bring it up a little bit. So you’re going to adjust it every week. But I don’t want you to judge yourself. Any step you’re making towards a healthier you is absolutely valuable. And I don’t want other people to judge you either. We want to surround ourselves with people who uplift us and support us be they virtual, be they in a podcast, be they in a support group, be they IRL in real life friends and family. We can’t always choose who we’re related to. But we can choose who we kind of share things with and who we spend time with. So you need a group of cheerleaders around you who are gonna say, you know, “Go and you’ve got this,” and maybe even someone to do it with. So having a buddy in these life changes can be really valuable. Someone you trust, it may be a friend, it may be a family worker may be a co worker, or it may be your dog, your dog may be your walking buddy, your dog may be your personal trainer. So maybe your first step towards movement is that every night after dinner, you tell your your partner, your spouse that he or she’s going to do the dishes, because you know Dr. Dawn and Dr. Joe said, “You’ve got to walk with your dog around the block”. And that’s your next step. So in addition to that, you got to make it work in your schedule, it sounds so simple. But if we don’t make time for it, the day flies by every day, and we wonder where did the day go and we don’t have enough hours. So it really needs to be into the schedule. And that’s why I said you know, every night after dinner, or maybe you’re a morning person, so maybe you carve out a little bit of time. And to do that maybe you have to rearrange your family responsibilities, or your childcare or your spouse or your job and say out loud to people, “I am starting to walk. And so I need help with you getting the kids ready to school in the morning, because I’m going to take a walk around the block.” So you started to get more of your family, your co workers, your team on board, make them part of this journey. Give them a high five when you reach your goal, because they helped by taking off your plate whenever you needed. You get a high five, and I just want you to be gentle for yourself. So start where you are. Start low and go slow, build up, surround yourself with supportive people, bring someone in as your partner, and then kind of just keep reassessing as you go. But whatever you do, it’s a value. So just be proud of yourself for everything that you do to move towards that journey. And you should be so proud, Joe. Wow, you accomplished quite a few hard, hard things. Weight loss and exercise are some of the hardest things that humans ever have to do.
Joe Coe 14:16
Yeah, it’s really it’s been a wild trip and two things Dr. Buse that you brought up that I think is so important. Early on, I was working with a friend who was starting a health coaching practice. And the first couple of weeks, she had me just focus on water. And I thought it was kind of silly, I’m like I drink enough water or why do we have to just focus on what I want to do the quote unquote, real work. And we focused on water and one thing that she told me to do, which I thought was so silly in the moment, and now I tell people this all the time was when I drink water to cheers myself, to say cheers you’re doing something good for you by just drinking that water. And I drink a lot more water now and we moved on to different things once we tackled water. And it was a very slow and steady process, like you said, and I increased it as we’ve gone on.
Dr. Dawn Buse 15:07
I love that. So you took that moment to stop, acknowledge and celebrate, I made a good change. Whether you’re high fiving, yourself, or your dog, or your your personal trainer, that you took a moment to say, “Wow, we did this, this is good. On to the next step.” I love that. I think it’s so easy for us to just kind of write off and brush off everything we’re doing that’s going well and everything we accomplished that was hard and focus on the things that aren’t going so well. So yes, focus on what you did what you accomplished and celebrated a little bit.
Joe Coe 15:38
And then the blocking of time to make ourselves a priority. I you know, and I have to acknowledge that I’m very privileged in the sense that I have a workplace that is super accommodating. And I can block out segments of my calendar and say this is what I’m working out. And I treat it like I would a doctor’s appointment. It’s blocked out, I don’t take phone calls, I don’t multitask. I was doing a lot of that at first when I was going on walks. And I was taking conference calls. And someone said you might want to be more in the moment when you’re doing this. And I said that makes sense. So I made it like you said Dr. Buse, a team effort. People on my team, people at GHLF know that when that is blocked out private, that could be a doctor’s appointment, that could be Joe going to the gym, that could be a walk, that could be all of these things. And it makes me such a happier and more productive person to have that flexibility and ability to do that for me.
Dr. Dawn Buse 16:36
I love that you said two more important things in there. You talked about the importance of time management. But you also started with a caveat, you said, “I am privileged that,” and I’m going to say I am privileged that even though I have two young children, they’re in school, and I have childcare help. And I have my parents, their grandparents who live nearby, and I have a supportive partner and duh, duh duh, my list goes on of privilege. All of those things can make these actions easier. And there’s gonna be people listening who don’t have any support, who don’t have be it childcare or eldercare or senior care, who don’t have the privilege right now financially, who may be struggling financially, whose health isn’t at a place where it’s easy to start any of these, who don’t have the social support all those things. So while these things sounds so simple to say, “Yeah, start exercising drink a lot of water,” there are challenges that everyone faces, and we’re not in the same boat. We’re in different boats, some people are in yachts, and some people are in a rowboat with two oars, and some people are in a rowboat with one ore and some people are in a row boat with no oars, we’re in very different places. So we always need to recognize that some of us are privileged to have a bit more support and opportunities that other people may not have. Nonetheless, you and I are still going to try to encourage everyone to figure out ways to make it work in their life the way their life is.
Joe Coe 18:01
And that’s really key. I want to also let the audience know that as I started to get healthy, as society would define health, I was having more attacks. I was getting off of one treatment that was lowering my heart rate a lot, which was making exercise interesting and difficult. I was passing out a lot. And that was also increasing my attacks. I also suspect, and there might be some science behind this, that the even positive things like exercising and doing things that your body isn’t used to when you have a hyper excitable brain and migraine might have been a little funky for me. So I started to get angry and frustrated that like I’m doing all the right things. It’s been for months. Why am I still having all these attacks? Why am I not loving working out? I hear everyone’s like, “Oh, my God, you work out. You feel so good.” I didn’t for a very long time, I do now and I understand that. But it took me a long time to get there. And I really needed to trust my neurologist, my cardiologist, and the fitness coach that I was working with to guide me in that process. Why do you think Dr. Buse, it’s important to view wellness and health as a dynamic journey and not a linear one?
Dr. Dawn Buse 19:15
Wow, Joe, that is a great insight. And I’m so glad you’re sharing this because if you didn’t share this, a listener might go through the same experience and think, “Oh, I’ve totally failed,” or “This is terrible. I shouldn’t even continue this I shouldn’t even started this.” So sharing this experience is really important. Your experience is more common than than just going smoothly in fact, so we can start because many of our listeners may have migraine or other chronic pain conditions or may love somebody with migraine or chronic pain conditions. As you said the nervous system of someone with migraine just loves consistency, everything being the same. So even if it’s not the healthiest of patterns, it’s going to want to stay with that pattern. It’s the pattern it’s used to and any change in any direction seem to be something that can increase migraine activity. So interestingly, when it comes to stress, not only anrise in stress for a prolonged period of time, but a drop in stress may trigger increased activity, less caffeine, more caffeine, less sleep, more sleep, all of these changes, even though we can say, “Okay, well, less stress and less caffeine and more sleep, those are good, those are good, we want to do those things.” Well, the nervous system at first may revolt a little bit and say this is a change. And you may see a little bit more migraine activity. But I and Joe, when it kind of encouraged you to push through that phase and know that in fact, these kind of half a dozen healthy habits that matter really do make a difference in migraine management, they affect the hypothalamus, which is part of the place where migraine attacks get started and get regulated, these do matter. But you’re gonna get a little bit of that hump. And it may feel like two steps forward and one step back, or just maybe like steps back. It sounds like for you, it just was like, “Oh, this is just worse.” So please have faith that scientifically, we know this is the right direction, and kind of move past that. And really the trick in kind of healthy habits, they’re they’re a long game. This is a marathon, this is a lifetime change. So just because we slip up one day or one week, in fact, I feel like we deserve a break one day of the week or one week or the month. You know, for example, say we’re trying to eat healthy and we end up being you know, one cookie out of the box. Well, we just want to say okay, we ate a cookie. And back on track. Nothing is wrong with eating one cookie. But we don’t want to say I’ve totally messed up here, I’m just getting the whole box and add another box and, and type of ice cream because it doesn’t matter. We just want to kind of recognize when those step back happen and just stay on track. And that’s the definition of resilience. Resilience isn’t smooth sailing. Resilience is when you get knocked down, you get back up, and you just have to get up more times than you get knocked down. And people with migraine are good at this. They get knocked down all the time. They had these relentless waves of migraine attacks that never stopped coming migraine unfortunately, is not a curable condition, but it’s much more of a manageable condition than it ever was before. We know more we have better treatments, pharmacologic and non medication treatments, we can manage it better than ever before. But people with migraine are pretty used to this like the challenges keep coming. The waves keep coming. And that’s where I like the the quote by Jon Kabat-Zinn who says you know, “We can’t stop the waves from coming but we can learn how to surf.” So a lot of life with migraine or other chronic illnesses is learning what what how do we make our surfboard, what kind of keeps us going, what is our purpose, our meaning our happiness, our joy, our healthy habits that keep us going. And those are what we need to identify.
Joe Coe 22:47
I love that on so many levels. I had four cookies today, and I feel great about it. Because it’s about like what you make more choices than not. So today, I chose to have four cookies. Most days, I’m not having four cookies. And I had some setbacks recently that really made me think about these breaks. I had COVID in June, so I couldn’t exercise for a little bit. Then I had an appendicitis attack and had surgery and really couldn’t exercise for a bit. And I was like, so nervous that this was going to throw me back to where I was two plus years ago. And the same could be true if we start having really bad migraine attacks, again, that we think that that moment that we have to stop is going to change all of the positive change that we’ve had. And I learned that it’s really a shift and like you said, a marathon and I had to slow down. And it was a really good opportunity for me to explore what it meant to slow down, what it meant to think about this as a long, long game as opposed to, “Okay, well, this is a month,” but you’re right, I didn’t become inactive in one month. I became inactive in 10 years. And I didn’t become active in one month I became active in two plus years. So one month is a big chunk of time, but it’s also not a big chunk of time. So we can we can sit with that and provide space for those feelings. And I think that’s so important to be gentle as you said Dr. Buse, with ourselves. So thank you. Are there any other evidence based wellness practices that you think our audience should know about?
Dr. Dawn Buse 24:22
Yes, so fortunately, they only fall into about half a dozen categories. It’s not a laundry list. We’ve talked quite a bit about Exercise and Movement. Wherever that is, wherever you start just that it’s regular. About every other day, maybe more days than not it is is important to have some movement if you can do everyday some movement that’s great. When it comes to diet and nutrition, you talked about drinking water. That was actually a good place to start. Staying hydrated with healthy hydration is important. We need more hydration than we realize. And for some people dehydration can be a trigger for migraine activity. It might increase more attacks, or it might increase kind of the severity of the attack. So staying hydrated is pretty important as well as a healthy balanced diet. And we’ve heard so much information conflicting about what people with migraine should eat, should avoid. Well, scientifically, it’s looking like it kind of comes down to a low inflammation diet, which means a balance of healthy fats, just lots of natural fruits, veggies unprocessed food. So thinking about a diet that’s a little bit more back to nature and balanced. And it does not have to be difficult or specific, we just kind of stay in the healthier zone, you know, in the grocery store, stay in that outside area where the fruits and vegetables and the unprocessed proteins are and get more of those, then we get to the treats. I mean, I had my pumpkin spice latte this morning. So I’m with you on a little bit of treat makes you happy. That’s okay. But just the balance, you talked about the balance, Joe, and it all comes down to balance and portions. Social support is really important to getting through with any chronic disease or any challenge in life. And as I said, we can’t always pick who we’re related to. But we can pick kind of who we share with who we spend more time with. And we can create family support and friends support out of our communities. And you’ve created an amazing migraine community and other really supportive migraine committees exist around the world, across the country, there’s a lot of places to reach out and find people who are like minded and supportive, or it may not be in a migraine group, it may be another group of people who want to start moving and exercising or other kinds of stress management approaches, or kind of connect to your passion. What is your passion that has nothing to do with any of this? What brings you joy? What do you care about? Do you have a hobby? Do you have a devotional activity you care about? Do you have a volunteer activity you care about? Getting outside of ourselves and focusing on others, even when we’re having a rough go of it actually can be really therapeutic. So that support and kind of focus on what brings you joy, and then stress management. And that can come in so many shapes and forms. And unfortunately, we can’t control what happens to us a lot of the times we can only control how we react to it. But it’s that how we react to it that’s what gets our physiology going. It’s what it means to us it gets our fight or flight response. And how quickly do we counteract that be it breathing, be it refocusing, be it exercise, be it biofeedback, meditation and taking a walk with our dog, cooking in the kitchen spending time with friends, looking at the ocean, whatever it is for you, that kind of calms your nervous system brings it back down. That’s important. So these are the areas to think about that the nervous system really does well with; consistency and those basic healthy habits, which it sounds so easy, they’re not so easy. And you’ve shared some really good strategies, Joe, for kind of navigating that path. But those things do matter. And even if you are taking medication, a daily medication or an as needed medication or using neurostimulation, these will actually get a better result from all of those when we’ve got these things lined up.
Joe Coe 28:15
I think it’s so important for people, people to hear that. I don’t think people hear that enough that your medication might or probably will work better if you’re doing these other things. That is, it makes sense. But we don’t hear it a lot. I take a medication when I have an attack prescription and I’m on a prevention medication. I’m still on those while I’m like super healthy, because I need them. Like you said, it’s not you’re not cured from migraine, because you’re doing all these things. Some people might be, not cured but in remission, for lack of a better word. Something that we both talked about in different ways that I want to highlight as a concept was habit bundling. So you talked about how you would recommend or give a tip to someone to go for a walk after dinner, something that you’re already doing and bundling like one of these positive activities is a way that I have found to be really helpful. It’s one of the ways that I increased water initially. I would wake up and I would drink I would keep water right by my bed. And I would wake up and I would have 30 ounces of water and then I would go brush my teeth. So brushing my teeth was the habit that you had, and drinking the water was wasn’t the habit but I connected the two and now it’s like before I go to bed if I’m like I need my bottle of water next to my bed. It’s like I can’t I don’t feel settled if I don’t have my bottle of water next to my bed. And now I wake up and I have 30 Something ounces of water a day, which is like a great way to kickstart start it so I think that those things I tell people like figure out what works for you. What works within your life. We all are doing things on a repetitive motion. We’re all eating dinner at some point we’re all brushing our teeth are all going to work if we’re able to work if we’re, you know, not on disability or retired. There are things that we can do that connect to other things that make these lifestyle shifts a little bit easier.
Dr. Dawn Buse 30:13
I love that those are really good suggestions. Those are really, really good ideas. And thank you again for highlighting the fact that these healthy habits are not only going to help you kind of generally feel better help your body function better is you may get better results from any treatment when you’ve got these underway, and I actually didn’t mention sleep, and sleep. Getting regular restorative sleep is really really important to all functioning. Again, this may not be easy for so many reasons you may wake with pain, you may have small children at home, you may work a different shift, you may live in an area with noise and light outside. There’s so many reasons this is not easy. But think about where you are, think about what you can do, any tweaks you can do to prioritize getting restorative sleep and trying to stay on a schedule as much as you can. Given all the aspects of your life is also valuable.
Joe Coe 31:11
There’s so much we could talk about. But this is our last question thinking about future research, what are you most excited about?
Dr. Dawn Buse 31:19
This has been an amazing decade in our understanding and treatment of migraine. So if we go back to the Egyptian hieroglyphs which have migraine in them and aura and the idea of treating people with an electric eel to the head, which has really come full circle with neurostimulation, we have come so far in what we know in just the past 10 years. This is a really, really good time to feel optimistic for people living with migraine, or people who care about people living with migraine, you may have children with migraine, you may have a partner with migraine, you may just worry for the good of humanity with 1 billion people with migraine around the world. So we’re learning a lot about kind of the scientific aspect, like what neurotransmitters are involved in genes. And we’re learning a lot about the social aspect. We have recently done some really big studies of stigma. In fact, in our overcome study, we surveyed 60,000 people with migraine and 100,000 people without migraine, to find out how they felt about people with migraine. And we have some amazing new stigma data that we should talk about sometime soon. So we’re coming at it from every angle. And for people who have not gotten benefit from the newest treatments, because there are people who have tried everything new and still didn’t work for them, and my heart aches for them, no one has given up on you. So scientifically, we’re still working on new targets for treatments. So going beyond CGRP to the next neurotransmitter the next molecule. We are still working on treatment matching, like looking at genetics, looking at comorbidities, looking at all sorts of factors of the individual to create this what we call a phenotype, meaning we put together a bunch of these variables and we say okay, this person may benefit from this. So no one has given up. Everyone working in migraine is really excited from the doctors to the scientist to the patient advocates. And we’re going to see more and more understandings, treatments and better outcomes coming down the pike. So it’s just a good time for people with migraine. And there are so many reasons to be optimistic and hopeful and excited about the future right now.
Joe Coe 33:29
I so agree. And I’m definitely hopeful. And this conversation also provides a lot of hope. And I really appreciate your caring, compassionate approach to talking about research, which can feel very cold and not connected to people. Often as a patient research can seem scary. So you really demystified a lot of that, and it was a really robust discussion. Thank you so much for joining me today.
Dr. Dawn Buse 33:58
Thank you, Joe. And I think what you do sharing your experience with listeners is really, really important because a big part of stigma is feeling alone or that you’re the only one or that you’re a loser. “Why don’t I ever, why does it never work for me?” And by saying, “Oh, this is what happened to me when I started my wellness journey,” or, “this is what I experienced.” People realize they’re not alone and there’s great comfort in that. It gives you a roadmap and a path to feel confident that you’re kind of on the right path. So thank you for all the important work that you do.
Joe Coe 34:32
Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe and I will see you next time.
Narrator 34:48
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
This week on Talking Head Pain, Joe is joined by Beth Morton, a migraine patient, activist, and advocate who now runs #MigraineChat, a social media platform that creates a space for migraine patients to connect with others who live with migraine.
Listen along as Joe and Beth discuss self-advocacy and creating empowering spaces online. Beth also shares the most powerful and troublesome messages she has received since starting to run #MigraineChat.
From Self Advocate to Online Leader: A Conversation with Beth Morton (#MigraineChat)
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Beth Morton 00:09
Friends and family, co-workers can have the best intentions and think they get it but it’s very different talking to someone else who has migraine and getting that sense of support and understanding.
Joe Coe 00:20
Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m here today with Beth Morton. She’s a researcher, an activist, a migraine advocate, and the person who started Migraine Chat. I’m really excited to talk to Beth to learn about her journey and why she got involved in all these fun things. Hey, Beth, how are you doing today?
Beth Morton 00:52
Hey Joe, thank you for having me on. I’m doing all right. How are you?
Joe Coe 00:55
I’m great. So let’s just jump in. There’s something that I like to ask all of our guests. Can you describe for the audience what your worst migraine attack was like? What went through your head? What did you feel and think?
01:07
Probably my worst attack happened about two to three summers ago. I live with symptoms every day, they tend to become sort of what I would call full blown migraine attacks about two to three times a week. And then occasionally, I just get these ones that sideline me. And this one I very much remember because, you know, they tell you if you’re having the worst head pain of your life that’s a sign to go to the ER, and I was like this close. But I remember it sort of hit at night. And I don’t recall at this point, if it was because of you know, sort of triggers stacking up or if it was just one of those ones where there’s just no good explanation, and they just come out of nowhere and you’ve done what you can and still get hit hard. The reason I remember it is because when I when I know it’s going to be a bad migraine attack when I start to get allodynia, that’s not a common symptom for me, it is for others. But for me, if I start to get allodynia on my scalp, or if I get this, if the head pain moves to the back of my head, and it feels like every time I moved my head, there’s this intense throbbing or laying down on a pillow is excruciating. that’s those are my warning signs. And this one, this one ticked all those boxes, and I just remember I spent most of the night sitting on my couch kind of just rocking back and forth in tears or near tears. And I’m lucky that my doctor has prescribed me some of the same treatments that you would get if you would go to the ER and I can can use at home to keep me from going to the ER so you know I took this was one where it took a couple of rounds before it finally kicked in died down. I could sleep, I could lay on the pillow. I could sleep that sort of sleep is an escape for me. I can I usually can sleep even with with pain and it finally broke. But yeah, it is memorable. For that reason I remember just you know, the the question of you know, is this something different? This is really bad, what should I do, but you’re also in that really panicky state of, of high pain. And I remember, or at least I was I remember sitting and just rocking and just trying to distract myself in any way I could giveen almost everything hurt or to do anything hurt.
Joe Coe 03:22
That panic feeling is something that I think a lot of us have faced, hearing your story made me remember a strange attack that I had while I was on a walk. And I got super disoriented, and confused. And that wasn’t a normal symptom for me. I ended up taking a Lyft to an emergency room because I was nervous and obviously couldn’t drive. It ended up being nothing, which was great. But you know, it’s disturbing when you have this new symptom. Can you explain what allodynia is for folks that might not know that?
03:57
Yeah, so that’s kind of a fairly a technical term. And to describe it, it’s when when touch is painful and it’s touched that shouldn’t be painful. So most people tend to get it on their head, face, sort of above their neck. But it’s not unheard of to get allodynia on other parts of your body. And I think that’s something that that’s something that comes up when I talk with others to get that validation of, “Oh, it hurts when I touch you know other parts of my body too.” So either they don’t know that allodynia is a thing that’s connected to migraine. You know, it hurts when you brush it when you brush my hair, hurts when I lay on the pillow, or they’ve only heard about it being affecting the head, face. And so when they’re like, “Oh it hurts when I wear a scratchy t-shirt,” you know they’re getting that validation that yeah, that’s maybe not the most common presentation but it happens and it is still part of migraine. You know, it’s it reduces that kind of panicky feeling of is this something else, is this something new? So, yeah, giving it a name having people understand it’s part of migraine because, a lot of times it’s a lightbulb moment for people I think.
Joe Coe 05:03
Agree, that happened to me once and I remember it very vividly, the water from a shower hurt my scalp. Just the gentle pressure of the water. It was so intense. I couldn’t take a shower. And I let the neurologists know and they’re like, this is something that happens to people with migraine. Fortunately, it’s only happened once, knock on wood. But it’s a really strange feeling. You get shocked, like, water can hurt. And who would think that the pressure of water drops on your head could could cause pain. So when I think of migraine advocacy, Beth Morton is one of the people I think of. What drew you to migraine advocacy, Beth?
05:45
You know, I think it was sort of accidental, sort of the quick backstory of, of Beth is I have had migraine for 20 plus years like you as well. About six, seven years ago now, I was finishing my PhD and my attacks started. I sort of had this perfect storm of everything they warn you about being risk factors for migraine turning from, you know, episodic a few times a month to chronic, you know, more than half of the month. I had a lot of the risk factors pile up on me at once. I was finishing my PhD, was in the last year of school. And despite having some of the best doctors available to me, nothing really slowed the progression. And to this day, I’m still kind of struggling to find the right treatment mix. So I ended up, I finished school, but I could not keep my full time job and I couldn’t stay living in the city I was living in. So I moved back to Vermont and I kind of floundered for a year. So I spent a lot of that time setting up new doctors, new health care team, frantically still trying to explore treatments I hadn’t tried getting access to them. And I guess the reason I say sort of accidentally fell into advocacy was, it was first a lot of self advocacy. I think that’s probably how a lot of us start. And I think a lot of us also start in these periods where things are getting worse. And we suddenly realize like migraine is having a disabling impact on our lives. And that’s probably why so many of the migraine advocates are like us who have, you know, high episodic migraine, or chronic migraine. And what I learned, I guess was that it takes a lot of effort to even be a self advocate. And so as I was learning things, I was drawing on some of the skills I had learned, as a student, some of my research background was coming in really handy in understanding new treatment, research on new treatments and, and even trying to figure out what was reliable information. You get hit from with information from all directions. And so trying to kind of screen that and make sure you’re only or you’re paying most attention to the reliable information. I learned that it takes a lot of time, it takes some skill. Other people for various reasons may not have that. And so have that time, have that energy. And I wanted to not let all the self advocacy I was doing go to waste, basically to get your answer. And so I started a blog, I started spending a lot of time on Twitter, too much time on Twitter, and I was trying to share the information that I was learning with others, because it kind of going back to the thing of like, what is allodynia. As I was learning these things, and learning these things are part of migraine, I realized, maybe other people don’t know either. And so if I can kind of make the learning curve, shorter for people or easier for people of how to find treatments. That was kind of how I started doing advocacy outside of things I needed to kind of do for myself. And I also kind of got connected with a lot of the organizations in the migraine nonprofit space, and eventually realized I could still use some of my skills to do more formal work. So trying to help some of the migraine organizations with their research needs. So it was it was sort of advocacy for just spreading information and advocacy in a more formal way of getting involved with some of these organizations.
Joe Coe 09:04
So Beth, speaking of advocacy, you started this amazing social media space called #MigraineChat that happens on Twitter, but I also see that it’s on Instagram and likely other platforms that I don’t even know about. What have you learned hosting that and doing that and what have been some of the special things that have come from that chat?
09:26
Yeah, well, I have to I have to give credit, there was a Migrant Chat years ago, and the person who was who had been running it just when I went when I landed on Twitter and start spending all the time there, it wasn’t active and I saw other chats like CreakyChats and Spoonie Chat and I checked with the person who had been running it and she was happy for me to take it over because I felt like it was, it would be a good way to for people to connect over questions or needs for support that they might have around migraine. Yeah, I guess so. It’s been maybe three years, I don’t even know, I’ve lost track of how long my Migraine Chat has been going on Twitter, but it has grown. So, Migraine Chat is a monthly chat on Twitter, I post questions and and people can just join in live or after and answer the questions. And we’ve spun off a more private Discord space for Migraine Chat. So if people aren’t comfortable or don’t spend as much time on Twitter, or don’t want to ask questions that are so public, they can join the Discord group. And I think what I learned most from doing it is that validation piece, and ironically, we just had a chat on validation and why it’s so important, because I think it’s that it’s like we’ve talked about, it’s understanding that things that you may, you may have this idea of what migraine is in your head, and then and then experience it differently than that and just need validation of yes, this is still normal this, this still happens to people. I think it is just recognizing or having that reassurance that something, even if it feels wrong, it’s still part of you know, it’s still part of migraine. So it’s not an abnormal thing. It’s not anything to worry about. For the people who have questions about things like symptoms, or medications or side effects. There’s also just the validation of just needing support, just needing to vent, just needing to say like, this is really crappy. And does anyone else go through this and just getting the like, sort of virtual hugs back kind of thing. So I think the validation is really important, the connecting with others, you know, I’ve made friends through through Twitter through Migraine Chat that I talk with now offline and have met in person. So these are real connections people are making. And I think, given some of what’s come out recently about proposing some of the people on social media are doing it for attention or doing it for the monetary gain, you know, that’s just so wrong. And to hear that is so and that that is invalidating. We do it to make connections, we do it to advocate for ourselves, we do it to, you know, Migraine Chat is for that spreading of information and hopefully spreading reliable information, because there’s so much out there to sift through.
Beth Morton 09:31
What I love about Migraine Chat, in addition to everything that you said, Beth is, is that it’s a space that’s ongoing. So you have the monthly discussions, but I see that people engage with that support, with that structure of Migraine Chat throughout the month. What like, as you said, when they have a question, or there’s a new symptom, or they’re trying to medication or they’re trying to explain their disease to someone that doesn’t get it, it’s just really, really nice to witness that. And I kind of lurk, I don’t engage often, I do sometimes. But it’s it’s really beautiful to see that space happening and what you and others have cultivated. So I thank you as a part of this community for doing that. This leads into our next question, which is an important one, we hear a lot that social media is bad, that it’s toxic, that it creates a lot of issues for folks, all of those things are true. There’s also a really good side to social media. How have you use social media for good to help people living with migraine? I hope I’m using it for good. I mean, that’s a it’s hard for me to judge. I mean hearing I thank you for the kind words, I think giving that space to others with migraine just to connect and to share information and ask questions and get support from people who really get it because, you know, friends and family co workers can have the best intentions and think they get it but they really unless they live with migraine, it’s really hard to understand it’s really hard even for some you know, it’s it’s very different talking to someone else who has migraine and getting that sense of support and understanding. So I think that is my main goal. And I try to use it for good and making those connections. And I do because of sort of my background in research. I do try to also use Migraine Chat as a way to counter some of the misinformation that’s out there about migraine. Sometimes I will just sort of search the just the migraine hashtag on Twitter and it’s amazing what you come across of just bad information out there or people who are targeting people with migraine in bad faith because they say they have a cure. So you know, there is no cure for migraine. We can there are some treatments that work better than others and people may go into remission, but it’s I try to help people not get swept up in ease. If it’s if it’s too good to be true. It probably is kind of thing. So sharing information that I feel is reliable from reliable sources, I think that’s sort of the other angle I take in using social media for good.
Joe Coe 15:05
I’m sure doing this work on social, you’ve come across some really inspiring messages and tweets and Instagram DMs. And I’m also sure on the flip side, you’ve probably have gotten a lot of negative and nasty and troublesome ones. What are some of the most powerful tweets that you’ve received? And what are some of the most troublesome?
Beth Morton 15:28
I’m gonna blame migraine brain fog, because thinking of really specific ones, now they come and they go, like in disappears. I just My memory is a siv. So that’s it. I think in general, some of the most inspiring or, or ones that make me feel good about what I’m doing with Migraine Chat are the ones where people have those lightbulb moments. And they and they take something they’ve they just sort of upfront state that they’ve learned something from Migraine Chat, they they talk to their doctor about a new treatment, or they realize they could even see a headache specialist that those exist or made some other type of connection through Migraine Chats. So those tend to be kind of the most affirming that I am doing something good. But also just seeing Migraine Chat, the hashtag used in the wild, where I haven’t I didn’t tweet something or somebody didn’t ask a specific question. They just tagged it because they came across it. They maybe don’t even follow me. It’s that’s like, oh, okay, so it’s it is getting out there. So those kinds of things are affirming. Most troublesome? There’s are two camps of troublesome. There’s the people who are very much like me, where they’ve, they have high frequency symptoms, they’ve tried everything, you know, you talk to them as much as you can through Twitter and kind of learn they’ve really tried as much as I, you know, I’ve tried, I feel like I’ve tried everything I can pretty much and I try things as soon as they come out. And I see a headache specialist and I’m doing all of the non pharma things, and I still have high frequency migraine attacks. So when I talk to someone else like me, and they’re reaching out for help, I think what’s troublesome about it is I feel like I can’t help them. The best I can do is just give them a space and bring them into the community if possible, if that’s if that’s helpful to them. So I think it can be hard when it’s, and it’s the same as when we go to a doctor’s, when you get that sense of you’re running out of things to try. And there’s always more to try. But it’s harder when somebody’s is sort of in a similar situation as me. The other troublesome ones are just ones that are just when I see, and these not they aren’t always directed to me, but but tweets that just get migraine wrong, or are stigmatizing or invalidating or, and it’s hard enough when it comes from outside the community. Or, or people who are trying to sort of take advantage of people other people with migraine but thinking of sort of a recent occurrence, when even within the disability chronic illness community when there’s when migraine is used as like an excuse or an example or it feels like people with migraine are thrown under the bus as a sort of a quick fix to what are some really big systemic issues around disability and chronic illness and accommodations and stigma and it’s really hard when you see other people who should should know better not taking migraine as seriously as it should be, I guess to put it nicely.
Joe Coe 18:47
So in other words, when someone would say that you should fake having a migraine attack to get a accommodation that you should get for other reasons.
Beth Morton 18:57
Right.
Joe Coe 18:59
And what is due to the community.
Beth Morton 19:01
On one level, I understand that type of example you know, when when your backs up against a wall and you need to protect yourself or your family, I understand wanting to kind of circumvent the system that is stacked against us. But when it when I see migraine used as you know, you know fake a migraine and get around the system, that does a disservice to those of us with migraine who are legitimately trying to get accommodations or disability benefits and that is extremely hard. Those types of accommodations or benefits are really hard to get with migraine because of the stigma, the historical stigma, the misunderstanding, the belief, it’s just a headache, that it’s not serious, or just this underlying idea that you know, it’s easy to fake or for any of us who have tried to work with with migraine with frequent migraine especially.You learn pretty quickly that it’s it’s there are multiple steps to getting accommodations or getting disability getting doctors to be on your side, getting your employer or the government to believe that it’s as disabling as it truly is. And so there are organizations that are doing enormous amounts of work to try and counteract these barriers. And, and it’s hard to see others in the, in the community undermining that, I guess.
Joe Coe 20:30
And even those of us and I would be in this camp that wouldn’t have been as open in the past to even ask for an accommodation or at previous places that I’ve worked, or use things that could help me like, I have a pair of glasses that work really well, for me, and but they have a very funky to me looking tint. So when you wear them, you can’t like I’ve gotten, “Oh, are you trying to be like Bono?” You know, out in the world not at work. But I think about like, do I internalize some of this stigma and portrayed or perceived weakness. And that’s why I’m not using these assistive devices that might help more, because I should use them more. They work really well for me. But it doesn’t make it easier when we hear that it’s just so easy to get these accommodations. I know through Talking Head Pain and the work that we do at GHLF how challenging it is, for patients to be heard by their employers, for people to get disability. I spoke to someone on Talking Head Pain that talked about that whole process and how it was like really demoralizing and challenging. And I think because of the way our disease is. You don’t see a broken bone, there is no definitive test that could say you have migraine. So it’s very complicated. And I think you’re doing amazing work, demystifying some of these really complicated and charged topics, and always in such a caring, and empathetic way, which is why I appreciate the work that you do, Beth, and that you took the time today to use some of your energy that I know is a limited resource with us all to talk with me in our and our audience. So thank you so much, Beth.
Beth Morton 22:26
Thank you. Thanks, Joe. Thanks for having me.
Joe Coe 22:29
Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.
Narrator 22:45
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
This week on Talking Head Pain, Joe is joined by Yuri Cárdenas, a migraine patient and creator of Migraine Talk, an Instagram account dedicated to providing support to people living with migraine.
Join Joe and Yuri as they discuss the effect migraine had on Yuri’s career, the journey of finding a headache specialist, and navigating the challenges of applying for disability.
Migraine, The Uninvited Guest: A Conversation with Yuri Cárdenas
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Yuri Cárdenas 00:10
The day I knew things were different with my migraine and my career was over when I was laying on the office bathroom floor.
Joe Coe 00:20
Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m really excited to be joined today by my friend, Yuri. They are the founder of Migraine Talk, an Instagram account that helps provide support for people living with migraine. They’ve had a really interesting career in educational design and interactive media. So we’re gonna get into all of that too. But before we start, Yuri, how are you feeling today?
Yuri Cárdenas 00:52
Thank you. I’m excited to be on here. I am, surprisingly, not in an attack at the moment. But I do feel it coming. So maybe a little brain fuzz.
Joe Coe 01:04
Well, that’s good. We hope that this will help abort the attack. Talking about migraine attacks, what is your worst migraine attack like? Can you explain it to our audience what you felt and what went through your head?
Yuri Cárdenas 01:17
Well, I’d have to introduce you to Suzanne, she is the aunt no one wants around. She is my high pain, extreme attacks, absolutely impossible to ignore. If I don’t find medication to manage Suzanne, she gets worse and louder. I’m basically in cold sweats, searing pain, vomiting, each moment stretches out horrendously to the next one. If I don’t find medication to manage Suzanne, it’s like the world feels like it’s never going to end. I employ everything. I can think of; calming breaths, assistive devices, mindfulness, but it’s agony. I don’t know if this is too much for our audience, but I’m usually stripped down naked in the bathroom, thanks to hot and cold flashes. And I just repeat to myself over and over, “This too shall pass.”
Joe Coe 02:10
So you, Yuri, when you started talking, I was like, “Who is Suzanne? And what did she do to her?” But now I know Suzanne is is your migraine. And that’s a really interesting way to put it that that person that just won’t go away. Comes unannounced to the dinner party.
Yuri Cárdenas 02:28
Exactly. Actually, Hal is my typical attack. He’s lurking all the time. He’s super needy. He’s with me 24/7. And if I don’t pay attention to Hal, then he likes to put on his outfit, and he becomes Suzanne, and Suzanne, I just won’t tolerate.
Joe Coe 02:49
Yes, Suzanne needs to go, Hal it needs to go. They both need to just leave. That’s so interesting. I had let me not even say I share too much sometimes on Talking Head Pain. We’ll talk after. I like to tease that I have an interesting life. So you had a really interesting career and migraine journey. And your migraine attacks and migraine disease has really impacted your career. You worked as a producer of interactive media. Can you talk about your former employment and how migraine took that away from you?
Yuri Cárdenas 03:27
Absolutely. Yeah, I had a career as a producer for 15 years. So I was really passionate about it. I worked on started in websites in the 90s and then moved on to interactive toys for children of all ages, and then adults and then interactive installations. Unfortunately, the last job I had I started transforming into chronic migraine from lifelong episodic migraine. And it was honestly really hard. I was in a high stress career coupled by working for a typical corporation that doesn’t look out for their employees, unfortunately. I was also finally creating my first interactive art installation on the side. But what I didn’t know was that I was transforming to chronic at that point. So I had like the CEO using me as an example, chastising me for trying to work from home which was probably one of the worst things for my migraine disease. This was way before the pandemic. And I didn’t know a lot about migraine at that point, but I knew light affected me and they wouldn’t change the lighting. When Suzanne came around, my worst attack, I tried taking breaks and lying down in a dark office but my over the counter meds stopped working. The day I knew things were different with my migraine and my career was over when I was laying on the office bathroom floor. I was humiliated having people walk in and out see me like that, but I was just in too much pain to move. I’m sure most listeners know every micro move when you’re In the worst attacks bring on brings on more pain. And that trip home, walking down the street to public transit, barely able to see is something I will never forget.
Joe Coe 05:09
Do you remember what the next day was like, for you?
Yuri Cárdenas 05:14
I don’t this was nine years ago. But I imagine I was super out of it. And just like I said, humiliated and scared for my future, not really knowing. I didn’t have a headache specialist than. I didn’t know what was happening, or how it was gonna get better.
Joe Coe 05:33
From that attack until you had to stop working, what was the timeframe?
Yuri Cárdenas 05:38
It was probably a couple of months, I would say. It stretched out a little bit. But HR was pretty quick to be like, “You know what, you should go on family medical leave,” which was like a year, I believe, a year of medical leave, and really get this checked out. And I was losing it for lack of a better word at that point, too. I mean, I was just so stressed and unsure of what was happening in my body that I was like, “Okay, let’s do that.”
Joe Coe 06:07
How long did it take you to find a neurologist or headache specialists that was able to begin to help you?
Yuri Cárdenas 06:14
That was another journey, I knew enough to go to a doctor right away. I knew right away when over the counter medication wasn’t working anymore. But I went through several doctors before I was referred to a neurologist, that neurologist should have retired. And it took me I think, another year before I got a headache specialist, so all up probably a year and a half, including like a lot of proactive doctor’s appointments and trying treatments throughout that time.
Joe Coe 06:49
So Yuri, do you think that if you had quicker access to providers that understood migraine disease better, you might still be working today?
Yuri Cárdenas 06:58
I wonder about that a lot, especially now nine years out, I really look back at that time when I transformed and knowing how stress affects potential transformation and not having like abortive options, prescription abortive options specifically for migraine. I think having the knowledge, yeah, I think absolutely having the knowledge of a doctor who could really speak to me and give me the treatments that might have helped. Yeah, I think there is a chance that it wouldn’t have gotten as bad as it has.
Joe Coe 07:31
I think that’s important for our audience to hear. Because I think a lot of people and I was episodic for a very long time. And I didn’t think about this either that you’re if you’re not treating your episodic attacks correctly, or as aggressively as you might be able to, it could lead research indicates to a chronification of migraine, which has a greater disease burden, and all the things that you’re discussing, Yuri, so hopefully someone can get advice from, from your story now that we have newer treatments, and we have a little bit more awareness to not settle.
Yuri Cárdenas 08:06
I hope so too. I think it’s a huge point. I’m so glad you brought it up.
Joe Coe 08:11
So we started to talk about your current life and what that looks like. You’re currently on disability, what has that been like, navigating disability in this day and age as a relatively young person?
Yuri Cárdenas 08:27
I’d love to say it was easy, no problem. It’s the best! But couldn’t be further from that, unfortunately. I thought not having to work would help me heal. But the reality of disability income is that I never know when my income is going to be taken away. And this takes away from a basic sense of safety. Migraine is not on Social Security Disabilities list of disabling conditions, which is wild and must change. I had to stand in front of a federal judge twice. It took five years to get SSDI and I have heard of people getting it right away. But I think it is because of my quote unquote young age when I became chronic, maybe maybe it was the state I live in. I don’t know but no one should have to go through this.
Joe Coe 09:20
We agree. Did you do it on your own or with help from attorneys or other folks?
Yuri Cárdenas 09:26
I did get an attorney to help. I like to complete paperwork. It’s weird, but I like to fill in the boxes. I feel, you know, I am educated. I did work professionally. But when I realized how long it was taking, I definitely employed help. I had to spend a year without any income waiting to see if I would get approved. I ended up in really bad housing situations. I had to crash on people’s floors at one point. And then another year, they stopped my income entirely so I have had to pay for lawyers. And something I want to point out sorry, I, I get passionate about this, but just want everyone to understand like they surveillance you, I’ve seen records of people sitting outside of my home, you lose any sense of privacy. My therapy notes are read by who knows how many people, and I can’t be myself fully in the world without risking my income. My lawyers have told me writing about migraine or having a public social media account is risky. Even being on this podcast could jeopardize my income.
Joe Coe 10:31
Oh, I knew it was bad. I didn’t realize it was that bad. That’s really intense. And all those things that you’re talking about from pre disability to getting disability, it sounds like none of those things really help us feel better, crashing on people’s floors and couches and having housing insecurity and income insecurity. I would imagine, we don’t need research to tell us that that can contribute to migraine.
Yuri Cárdenas 11:01
I also wonder, you know, if if that period when I went chronic had gone differently, but also as I was, in the early years of being chronic having to deal with this really serious anxiety and depression producing issues that also didn’t help my migraine, if that has made everything worse.
Joe Coe 11:20
So you have taken this really horrible experience in multiple ways living with migraine, having to navigate a system that’s unfair, and you’re doing something positive with it, which is really nice. You don’t have to do that with your limited energy. We appreciate it, or I know our listeners do, I do you run an Instagram account called Migraine Talk, can you share what inspired you to do that and why you feel it’s important to have a platform like that?
Yuri Cárdenas 11:53
Of course. Thank you for saying that, you know, I never know if it is actually helpful. I hope so. And I think for me, the whole time I’ve been struggling through migraine disease and the US health care system, I think about all the other people who don’t have the education or language skills, or the ability to persist to fight for their care, and it breaks my heart. And what’s really helped me move forward over these years has been thinking that what I’m going through can help someone else to not have to go through it. I felt moved to, I’d spent years on Facebook groups kind of offering support and getting support. And I thought why not on Instagram. And another thing that happened when I looked on Instagram for migraine accounts is that I didn’t really see people that looked like me or reflected my struggles. So it inspired me even more to be a voice for everyone like me in the community.
Joe Coe 12:51
So why is community important, Yuri, for people that live with migraine, especially those that are part of the BIPOC community?
Yuri Cárdenas 13:00
I truly believe we can’t get through any of this alone. Humans are herd animals, we rely on other people for survival. But beyond survival, social support is like an irreplaceable piece of the treatment pie for mental health, and for migraine health. I think we really need especially with this highly stigmatized and confusing disease, having other people and it’s an isolating disease. So having other people who get it, or who can help you figure out how to communicate about it, I think is huge. And then if you add on top of that, all of the systemic racism that people of the global majority have to endure in the US and the lack of representation by various migraine organizations. I mean, I just think it comes back to community, I think we’re all in this together. And I think trying to imagine us as an individualistic society is part of what makes us sick. So I think the only way to heal is with each other.
Joe Coe 14:06
Is there anything that I didn’t ask that you would like me to ask?
Yuri Cárdenas 14:11
I guess talking about being queer, but I don’t know it all rolled in together. There’s not really more to say other than like, yeah, just dealing with like, otherism. You know, we need community to handle that.
Joe Coe 14:23
Yeah, I felt like, I was always an activist in the LGBT community. And I never felt connected to the migraine community, was something that I lived with since I was a kid, but it was just always there. And it wasn’t I didn’t see it as part of my identity. And I didn’t see how it was like inter weaving. And now there’s research about how trauma impacts migraine and all this when when you’re queer and part of the LGBT community. And I didn’t I wouldn’t have seeked out information. Because it wasn’t for me. It wasn’t marketed to me it wasn’t made for me. And that’s something that we try to do on this podcast and at GHLF, is like think about where the resources aren’t being directed and who isn’t being reached and we look to cast that wide net, which is really special and it really makes me feel good about the work that we do. Yuri, thank you so much for taking time out of your day, as a disabled person with migraine, I know that that is a lot of energy and I value your your time spent with me today. So thank you so much.
Yuri Cárdenas 15:40
Thank you so much for having me. It’s been really fun. Thank you.
Joe Coe 15:45
Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.
Narrator 16:01
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
On today’s episode of Talking Head Pain, Joe is joined by Matthew Kloiber, a husband, father, and migraine patient. Matthew joins Joe to talk about how switching to a plant-based diet has impacted his life, from reducing his cholesterol to helping manage his migraine attacks.
Join Joe and Matt as they discuss being a man with migraine, the effects of a plant-based diet, and the response health care providers had to his new diet.
Please note that this episode highlights Matt’s experience and is not medical advice. Make sure to work with your health care provider to find the right treatments and/or eating plan that works for you.
Going Plant Based for Migraine: A Conversation with Matthew Kloiber
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Matthew Kloiber 00:09
So I started this plant based diet it wasn’t the healthiest, but it was still considered plant based. I think I went maybe six months without a migraine.
Joe Coe 00:19
Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. Today, I’m joined with Matt Kloiber. I came across Matt in an online migraine support group. Whenever I see men in those groups, I pay close attention because I rarely see guys post. So when Matt did, and it was about diet, and generated hundreds of comments, I said to myself, “I really want to learn more about this guy and his story,” and be open to perspective that I may not have considered. I hope you’ll listen to his perspective and story with an open mind and heart. And know that he shared and is sharing his story because he wants to help others. Please note that Matt is speaking from his personal experience and his own opinion, nothing we discussed here today should be considered medical advice. Please make sure that you discuss all diets and medications with your healthcare provider. Hi, Matt, welcome to Talking head Pain. Can you tell us a little bit about yourself?
01:23
Yeah, so my name is Matt Kloiber. I am 34. And I am married, have two kids, work full time, go to school at Oklahoma State online, and dealt with migraines my entire life, as far as I can remember at least, and had been taking prescription medication for them practically my entire life. And just kind of recently, I think is one of the reasons why you you asked me to be on the show was I had some success, just with a diet change that was able to I don’t want to say cure it. But I mean, it definitely reduced the amount that I’ve had, so.
Joe Coe 01:59
Can you tell us what your worst migraine attack was like, Matt?
02:03
So there’s actually one just kind of recently. So I just got back from vacation, I was off my diet just a little bit. Me and my wife were spending some time in Florida on the beach. And so, you know, I had some things that I hadn’t had in months. Last week, I probably had the worst headache, one of the worst ones I’ve ever had. Where I’m usually I don’t, you know, end up throwing up. But this time, it actually made me vomit. And typically the only the really bad ones for me, that’s the only time that happens. But there have been times a lot you know where I’ll be at work and you can feel a migraine coming on, then you just have to leave because you know, you’re gonna be almost useless if you stay if you stay at work.
Joe Coe 02:42
As a man with migraine, we aren’t often seen or portrayed on commercials or we think about migraine education. Did you get diagnosed quickly? And how has it been living with migraine as a dude?
02:56
So I was a kid when I was diagnosed and living with them, I you know, I don’t remember what I was given as a kid, I just know as a red some red pill that they would give me and I remember as a kid, I’d have to go kind of just go sit in a dark room, be quiet, no light, a lot of things that people deal with. I think anybody with a migraine kind of has similar reaction to it. And then growing up, I mean, really, I mean, I probably have had 8 to 12 migraines a month, or at least where I would need to use medication to prevent a migraine from coming on, I’d say since I was probably eight or nine or so. And it’s been tough. I mean, with school, you know, going through school, grade school, trying to concentrate trying to sit in class when your head is just pounding, and you kind of want to just leave and go go home and go to sleep. As far as being you know, a man, I you know, I never noticed that it was predominantly women that had migraines. And because, you know, my reality was always just me, you know, I’m the one that had the severe headaches. And I think for the most part, people have been sympathetic about it. I haven’t had anybody. Well, there’s been some people like, you know, when you tell them you have a headache, and they kind of roll your eyes, but you’re like, it’s worse than what you think it is. It’s a lot worse. So but I think just growing up, you know, I’ve had a pretty good, I’d say pretty good, I’ve had an experience with migraines that’s been probably similar to a lot of people.
Joe Coe 04:17
As an adult, did you feel like migraine, before you got into a place where you had them under control, was that impacting your life in a meaningful way?
Matthew Kloiber 04:27
Yeah, you know, as an adult, you start to have kind of your group of friends or people that you hang out with, or you go out with and, you know, kind of limits you on some of that kind of stuff. And so you kind of no one’s kind of hanging around you, you just know, it might it might just, at any moment just become really bad. And so there’s times where, you know, we would try to do things or plan things and I would just have to plan around the potential of having a migraine.
Joe Coe 04:50
Yeah, I think that’s something a lot of people don’t understand is even when you’re not having an attack, the fear of having an attack really controls your life, And it’s there, as you talked about, Matt, it’s great that you had people growing up and in your adult life that understand that. That goes a long way in helping people continue to live happier lives. So that’s really good that we hear that. I often don’t hear that.
05:17
Well, I think it’s what you said is, you know, the idea that that you might get a headache, and you have to kind of bring that along with wherever you go. So I’m also asthmatic. And so I have an inhaler with me 24/7. And if I don’t have my medication, if I don’t have my inhaler, it’s almost like that almost gives me an asthma attack. And so it’s almost the same with with my migraine medication. When I was taking it, we’re going on trips, I know there have been times where we were packing up going to the lake. So my parents live out the lake, and two hours away. And so if I didn’t pack my migraine medication, I was freaking out, because I knew I would just end up having a migraine no matter what. And so I think sometimes that fear or that pressure anxiety kind of builds up and I don’t know, I think it might even lead to some migraines.
Joe Coe 06:01
Oh, definitely. That worrying doesn’t help.
Matthew Kloiber 06:05
No, not at all.
Joe Coe 06:06
What drew me to you, Matt was in a Facebook group. And I don’t remember the name of it, it was a migraine support group. And I saw that you posted about how diet had improved your migraine attacks. And that’s a very controversial statement, it could be very energized. People get really passionate on both sides. “It’s not related to diet, it’s related to diet, it’s dismissive of you talk about diet, you have to talk about diet,” there’s like a very charged energy around diet, and likely because it’s very personal. And it’s something that is a struggle for people and sometimes diet does trigger, sometimes it doesn’t. So I was really impressed with how caring you were in sharing that experience and non judgmental. What has the process and journey for you been like to get to a place where your migraines are under control?
07:04
The diet part of that was kind of a byproduct of something else. And so I was actually having some chest pains. And so I had my cholesterol checked out. This was you know, several years ago and the cholesterol was just high, so high. And so we were able to take medication, thankfully to get it, get it under control, but I was starting to get chest pains and I went in and saw a cardiologist, you know, I’m only 34. You know, definitely wanted to get something checked out. And so he came in, told me he wanted to do like a heart and lung scan. You know, even though the numbers are okay, now they were just so high, we wanted to double check and see if see if there was something plaque or calcium buildup or or whatever. You know, we got that scheduled and I called a call my uncle. He was a retired firefighter here in Oklahoma City. And he had arthritis, severe arthritis in his hands, as you can imagine what that profession. So he had went plant based or he went he went vegan. And within two weeks, he was off all of his medication for for his arthritis. And it has been this way for years. And so I was talking to him about this and I knew, you know, plant based diet and and researched that and I knew that it had a lot of healthy benefits for cholesterol, you know, with your exercise and your diet. I started talking to him about that. And I thought, “Well, my cholesterol is really high. So I need to do something.” So I started this plant based diet, it wasn’t the healthiest, but it was still considered plant based. You can still eat plant based or vegan and not be healthy. But there are a lot of good options.
Joe Coe 08:36
Fries are plant based.
Matthew Kloiber 08:39
I heard Oreos are too so yeah, so a lot of a lot of good stuff that’s technically plant based. So so I decided to kind of ease into it. And so we started doing it. My wife had been super supportive, like she kind of jumped in with me, she’s awesome. She didn’t necessarily need to be plant based or vegan. But she stepped into that with me, which I really appreciate, which made it a lot easier. And so I started doing this. And mind you, I’ve had 8 to 12 migraines a month. And I knew that because that’s what my my refills on my prescriptions were, you know, I’d get some, I think I got 12. I got 12 of the triptan pills. And every month I was trying to refill those. And so I started to start this journey on plant base to lower my cholesterol, better my health. And I mean, I’m not kidding, maybe a week or two into that and I’m like, I haven’t had to take a migraine pill yet. And I’m like, well maybe that there’s something to that and then so I continue to do that. And I think I went maybe six months without a migraine until I started to be a little lacks on my on my diet and started to realize something was triggering them. And so I think after the six months I started having like maybe I had like a cheeseburger or something with some cheese and I started to pinpoint that It was dairy. I think the dairy is what was triggering my migraines. And mind you, I love milk. I love cheese. I’ve been eating that since I was a kid, which would explain a lot of my progression as an adult having migraines. And so yeah, I think that’s kind of just came to a head that I realized it’s definitely tied to a diet. And so you know, I got back on the diet, they’d go away, and then I try something dairy and it come back.
Joe Coe 10:24
So what did health care providers say to you?
Matthew Kloiber 10:27
I want to say I love my entire medical team. I don’t want to give them credit, because they have, they have walked with me, my physicians, you know, I’ve got a brother in law who’s an optometrist who has done some really great things for me, massage therapists, neurologist. Look, the prescription medication worked. And I was thankful for that. Because without that, I would have had a lot of suffering from migraines, but nobody ever offered or even suggested, and this might be unusual, this might be common, I don’t know, but no one ever recommended treating the cause and not just the symptom. And so you know, a lot of the prescriptions will treat, you know, your headache pain, but I could never get any thing to treat the cause of the symptom. They’re all really great. And then I think my physician, my family physician is the only one that I’ve talked to since then. And he’s, he’s happy because he was about to take me off of my triptans anyway, because I was taking too many of them. They had good things to say.
Joe Coe 11:22
Yeah, I think what we can learn from the story is is that we have to try all different things. And for you plant based worked, for me it might not for Susan, in Oklahoma as well. I don’t know why I went to Susan in Oklakoma. But Susan, Oklahoma-
Matthew Kloiber 11:42
I know a Susan.
Joe Coe 11:43
She called me before the podcast was like, make sure you take care of Matt. It’s like our, this neurological condition called migraine is so complicated, there’s so much still to be learned about it. We’ve seen great innovation in terms of medication. We’re also evolving our research and knowledge around how to reduce triggers, and can exercise help, can diets help. And, you know, what I want our audience to hear is that, you know, there’s risk and reward for everything that we do. And, you know, for Matt, this really worked. For you, it might, it might not. And what I really liked about Matt and Matt’s story is, is that he’s out there sharing, “This worked for me still listen to your health providers. Don’t buck the system, but know that there are other things that you may try. And this was one that worked for me.”
12:40
Yeah. And so going back to that post, it got a lot of attention. And I like what you said, some people liked it, some people kind of fought against it. But I wanted to be clear, like, you know, I know there’s there’s people out there that you know, they can’t try this, you know, medically there’s reasons why they can’t. But I also think it’s important that if you can try it why, you know, why not? If eating better, eating plant based, eating vegan cures your migraines, I mean, I’m an example. It just it didn’t just, you know, clear my or clean up my migraine problem. It actually helped with cholesterol, it helped with my allergies, seasonal allergies are better. Asthma is better. A lot of people that have asthma and allergies, get eczema, my eczema has been a lot better and I’ve had more energy to and so if there’s a way that you can try just changing your diet.
Joe Coe 13:32
Do you feel I think some people might have a problem that you’re using the word cure. Do you feel like you’re truly cured from asthma, migraine, eczema, all of those things?
13:45
I’m glad you mentioned that. Because as far as migraines go, I can only tell you what I’ve experienced. And that was six months without migraine and that is the longest I went in my entire life at least my early childhood to now especially after I had kids, migraines increased quite a bit. Probably sleep deprivation, you know, all sorts of things, but from what I know is that it I’m gonna- Yeah, I would say that it cured my migraines. Now as far as the other things my asthma I still had. It was just a lot less severe and eczema. I haven’t noticed any eczema. Seasonal allergies are less severe but I still have some.
Joe Coe 14:27
Talk to me a little bit about asthma. were you diagnosed with asthma and migraine around the same time what came first?
14:33
You know, I don’t, I never I never thought about that before but I believe I was diagnosed with asthma before I was diagnosed with migraines but it wasn’t very, very long after that till I was diagnosed with with migraines as well.
Joe Coe 14:48
And living with those invisible diseases, is there anything that you want people to know about them?
14:54
Asthma, people can hear when you can’t breathe or if you’re visibly distressed because you can’t breathe, I mean, that’s a significant problem to have if you’re not able to get oxygen to your body. And something I’ve tried to tell people, it’s like, you know, whenever you get a flare up, it’s kind of like you’re out of breath and you’re trying to get breathe through a straw, trying to get all the oxygen you can and that’s basically what your lungs do your lungs, you know, tighten up and it’s hard to breathe. So I think a lot of people could be sympathetic to that because it’s probably, maybe not as visible but, you know, they can definitely hear you struggling to breathe. Migraines, that one’s a tough one because usually when I get a migraine if I can, I’m at home, in bed with a cold compress on my head or something that you know the lights off.
Joe Coe 15:45
Thank you, Matt, for sharing your story and talking with me on Talking Head Pain today. I hope that our audience gets a lot out of it.
Matthew Kloiber 15:52
Yeah, absolutely. Thank you, Joe.
Joe Coe 15:56
Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.
Narrator 16:12
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
On today’s episode of Talking Head Pain, Joe is joined by Hannah Frost, a migraine and Ehlers-Danlos Syndrome patient, paraclimber, and creator of the blog Climbing Through Migraine. In her blog, Hannah documents her life as a paraclimber and how she navigates the wall as someone living with chronic illness.
Join Joe and Hannah as they discuss paraclimbing with migraine, the effect migraine had on Hannah’s career, and how Hannah was able to come back to the sport with the help of community.
Climbing Through Migraine: A Conversation with Hannah Frost
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Hannah Frost 00:06
I kind of one day I came across some paraclimbers on social media actually and suddenly realized that maybe I could start climbing again. And just being part of that community really helps motivate me and helps me feel kind of welcome at the wall.
Joe Coe 00:27
Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. Today, I’m joined by Hannah Frost. She lives with chronic migraine in the UK, she’s a paraclimber, and she created a website called Climbing Through Migraine. Today, we’re going to talk about climbing, her worst migraine attack, and what she’s learned doing the sport. We’re gonna dive right in. How are you feeling today, Hannah?
Hannah Frost 01:01
Yeah, no, I’m feeling good today, actually.
Joe Coe 01:04
That’s great. So am I, it’s a little gloomy here in New York, but got a nice little walk in before this recording. And I’m feeling good as well. So we’ll feel good together. Walk us through your worst migraine attack. How did it feel and what was it like?
Hannah Frost 01:20
My worst migraine attack was probably a few months ago. I went through this really bad patch where I had five days of straight intense, agonizing migraine. I was just, yea, stuck in a dark room, praying for it to end, not being able to do anything to help with the pain because it lasted for five days. And I’m a chronic migraine patient, and that means I can only take three of my acute medications a week. So I like I might have got that relief for like one day or two days. But then it just came straight back just as strong. And it was agonizing, and made me generally want something to happen to make it stop or like want to go to the emergency room. But also knowing that I couldn’t get myself to emergency room. And the emergency room was like the last place I wanted to be. But I wanted that relief. I didn’t go, I just waited it out. And eventually it calmed. But it was rough just because it was so long.
Joe Coe 02:35
I can relate to the migraine attacks that could last multiple days. And it’s like you just it’s still here. And why is it here? I’m glad that it broke for you. How is this disease impacted your life?
Hannah Frost 02:47
I was training to be a lawyer and then my chronic migraine got worse for some reason. And so yeah, now I’m no longer working. I’m hoping to like start doing some part time work at some point soon. But yeah, right now, not working.
Joe Coe 03:05
How did that make you feel delaying your career?
Hannah Frost 03:09
I think the fact that I knew it was coming, helped a lot. Like I knew I’d been on sick leave a lot. So I knew that at some point, it was going to come to an end, it was just a matter of when so I kind of went through the motions of feeling that grief and loss of my career before it happened, which probably sounds really weird. But I think by the time I actually lost my career, and like I don’t know if I’m ever going to go back to law. I might do if I get better enough to. It kind of strangely felt like a relief, because I was fighting so hard to try and be at work every day and pushing myself through so much agony. But I was like, “Okay, this is over now. You don’t have to fight anymore.” But there are still times where I’m like, “Well, I want a normal life.” I’d love to be able to earn my own money, have a normal life, get on with my career like everyone else my age.
Joe Coe 04:04
I think that makes a lot of sense about preemptively mourning, knowing that something’s coming. So I don’t think that’s strange. I also read and saw on social media that you’ve turned a lot of this negative experience into a positive through paraclimbing, can you let us know what power climbing is and why that brings you joy?
Hannah Frost 04:28
Yeah, so I’m a climber and I’m disabled. I have a few other health conditions. I have Ehlers-Danlos Syndrome, a functional neurological disorder. So I identify as a paraclimber. I started climbing years ago, and it instantly brought me so much joy. I kind of fell out of love with it a bit and had some health issues that meant I had to stop for a few years. But I kind of one day I came across some paraclimbers on social media actually, and suddenly realized, that maybe I could stop climbing again, and just being part of that community, even though I don’t get to like, see and climb with other paraclimbers much, knowing that there’s other people like me climbing really helps motivate me and helps me feel kind of welcome at the wall. And it just generally brings me so much joy and passion to be able to climb and work out problems and to focus on nothing else but the wall.
Joe Coe 05:25
Climbing was something that you did before your chronic diseases were diagnosed, and you found that it helps you process and maintain some level of connection to your past. Is that fair to say?
Hannah Frost 05:38
Yeah, that definitely is fair to say, just generally, I do love a sport. And it’s nice to be able to do it again.
Joe Coe 05:45
And you said you against the wall, that is an interesting visual. How does that relate to chronic disease climbing a wall, that one on one battle?
Hannah Frost 05:55
When you’re climbing the wall, so you’ll have different problems and they’re graded. And they can often be like, quite difficult to work out like you don’t get to the top just instantly. And if you do get to the top instantly, that’s not the most satisfying problem. I feel like it kind of relates to chronic illness because it shows kind of like that there’s hard parts, there’s times where you have to like slow down or say no, or times where like it actually is going well. And you do get to the top easily. And I think generally it just kind of reflects on kind of being able to get to the top of a wall that was really hard is really satisfying. But equally being able to like do something that you didn’t think you could do because of your chronic illness that is also pretty satisfying.
Joe Coe 06:45
That visual, Hannah, of climbing and I’ve never climbed before, but I’ve seen people do it. And that thought the shifting the “Oh, this isn’t the right grip, the length, I have to go this way,” and thinking about how our journey with chronic disease is not linear. Although we’re going forward most of the time, sometimes you have to go back. And that’s okay. I see people have to go back when they’re climbing. So I think it’s a really cool visual, we’re talking about chronic disease that I haven’t thought of prior to speaking with you. So thank you for painting that picture. You also created a bunch of accountants and website called Climbing Through Migraine. Can you talk about what inspired you to start that and what you’ve learned being on Tik Tok, Climbing Through Migraine, your blog, and how you’ve connected with other patients?
Hannah Frost 07:40
Yeah, so with Climbing Through Migraine, I came up with the idea after my migraine got worse at the beginning of this year, and kind of wanting to continue climbing through it. Because it’s amazing physical therapy to me, I kind of had to learn how to navigate climbing with a migraine, climbing without a migraine but not wanting to trigger a migraine. And also, I had to kind of figure out how to navigate safety issues. So I’m primarily a boulder so I don’t have to worry about like feeling someone else. But at the time, I was rope climbing quite a lot. So I had to kind of consider Is it safe for me to belay because I get quite busy with my migraines, and how to kind of make that safer. And I think all of that combined with the general environment of a wall, they’re generally like loud and bright, made me kind of want to create some guides to help people manage climbing with migraine and also review some walls. So right now it’s mostly walls. Well, it’s only walls in UK. But I feel like I felt like I wanted to do that because then if someone comes across it, it gives them time to kind of prepare and bring what they might need to manage a situation.
Joe Coe 09:03
Amazing, and if people have never climbed a wall before and live with migraine, what are some of the top tips that you would give, the top three that you would tell a new climber that lives in migraine?
Hannah Frost 09:13
I think I would say, definitely remember to make sure you’re hydrated. Make sure you have food in your stomach before you go and bring water with you to avoid kind of dehydration and blood sugar drops as a trigger. And then a second tip would be to just take it easy for your first few sessions. See how you feel because you don’t want to push too hard and trigger a migraine and it’s better to kind of go too slow, then go too hard and suffer for it. And then the third tip I would give would be to find a group of friends or a group of climbers who understand and will support you and won’t treat you in a way that you don’t want to be treated. Finding that group people who will support your highs and respect you when you don’t want to give something another go or when you feel like you just need to lie down on the mats and like, take a break is really important.
Joe Coe 10:15
How does someone trained to climb? Do you do things not on the wall to prepare yourself mentally and physically?
Hannah Frost 10:21
So I personally right now, don’t do things not on the wall, probably should. But as a beginner, the easiest way to learn how to climb is to climb more, because so much of it is movement and technique and understanding the foundations of how to move more efficiently on the wall and make use of your strength. But once you’re getting a bit better, you can buy fingerboards or hang boards, which might be known in your country. And basically, you’ll put them on your doorframe, and they have little slots in through your fingers and you hang off them you can do pull ups on them. And that’s the way people train quite a lot for climbing to kind of help them prove that finger strength.
Joe Coe 11:04
Very interesting. I’m thinking about you also living with Ehlers-Danlos Syndrome, and that for those that don’t know, that could cause hyper flexibility or mobility. How have you adapted your practice based on that condition?
Hannah Frost 11:19
Very much with Ehlers-Danlos Syndrome, it does depend on the day, sometimes I won’t need to adapt my practice too much. There are moves that I can’t do. So if things start with like a high foot, I just don’t have the power through my leg and the stability for my hips to do very high feet. I can get my foot up there, but I can’t use it. And I’ve just kind of adapted to knowing that that’s something I struggle with, and kind of practicing it but not so much that I get hurt. And then on like an average day to day, I’ll normally put KT tape on something if it’s hurting, be it my ankle, my wrist or like my shoulder normally, and I’ll just listen to my body and I try to stop doing something if a move is causing too much pain. I’m not very good at that because I do get very stubborn when it comes to wanting to complete climbs. But if I’m not completely fixated on something, I will just decide it’s not worth it if it’s causing too much pain, and I really should do that more. I think everyone with EDS should just listen to the pain signals that the body has given them because it is a strenuous sport, and it is easy to kind of pull something too much and get injured.
Joe Coe 12:37
I’ve learned so much about that disease by watching and listening to a colleague in Australia. His name is Joey, he does a bunch of Tik Tok videos for us on the Global Healthy Living Foundation’s Tik Tok and I didn’t know much about the disease prior to watching these Tik Roks. So really interesting that you also have that and he shared a lot of the tips that you share. So Hannah, I really really appreciate you joining Talking Head Pain, and for those you can’t see us but my cat just came on camera cause he’s like, “You haven’t given me enough attention today. So it’s gonna rub against the computer and make things shake”. So sorry, Hannah. But thank you so much for joining me today.
Hannah Frost 13:20
Yeah, it was a pleasure to be able to join you today, and your cat is adorable!
Joe Coe 13:25
Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe to so you never miss another one. I’m Joe Coe and I will see you next time.
Narrator 13:42
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Welcome to part two of Joe’s interview with Dr. Alan Rapoport, Clinical Professor of Neurology at UCLA, past president of the International Headache Society, and the co-founder and CEO of BonTriage. In this episode, Joe and Dr. Rapoport discuss a topic very important to patients, medication overuse headache.
Medication Overuse Headache: A Conversation with Dr. Alan Rapoport, MD
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Dr. Alan Rapoport 00:10
Whether we like the term medication overuse headache, or we like the old term, we can see it, we can smell it, and we need to diagnose it.
Joe Coe 00:22
Hello and welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. This is the second part of a two part interview with Dr. Alan Rapoport. He is the Clinical Professor of Neurology at UCLA, past president of the International Headache Society, and the co-founder and CEO of BonTriage, a healthcare company that helps people better understand their chronic disease. In this episode, we will be discussing a very important topic that concerns many patients, medication overuse headache. The topic that I want to talk about now with you is medication overuse headache. Can you explain that term and why patients should know about it?
Dr. Alan Rapoport 01:06
Well, one of the biggest problems that we have with our headache patients is those that have chronic headaches, and are always in pain and are trying to feel better, end up taking sometimes more acute care medication than they should. Whether it’s over the counter medicine, whether it’s a triptan, whether it’s some of the newer medicines that work on CGRP, or even in some cases a Butalbital containing medicine, like fiorinal or fioricet, which I don’t use anymore, or in some cases, even opiates, which I definitely don’t use anymore. And it turns out that if a patient takes that too frequently, and that is hard to know exactly where but we’re thinking more than two to three days a week on a regular basis, that it actually makes headaches more frequent, more severe, and more disabling. And that’s a very hard concept for the patients to understand, even if it’s explained appropriately to them. And sometimes they just don’t want to accept that. But once the doctor understands that, and the patient understands that, even though they’re trying to make themselves feel better, they’re actually doing something that may make them worse. And there’s a plan put forward to improve upon that and get rid of what we currently call medication overuse headache. Once that happens, we’ve got a good chance of making the patient better. Without accepting the fact that it occurs and doing something about it, we have not a very good chance of helping the patient.
Joe Coe 03:05
So in other words, if someone’s using medication too much, you would work with them to find a different treatment protocol to make sure that they don’t need to use the medication that much.
Dr. Alan Rapoport 03:19
Exactly. And it could be as simple as I only want you to use it two days a week. And on the other two days, if you need something, were going to get relaxation techniques for you, or we’re going to get you a device that works in a different way. Or, and this is what we do much of the time, we’re going to put you on a preventive medicine that you take either every day or every other day or an injection once a month or every three months. And that preventive medicine will decrease the number of headaches you’re having. And then you won’t need to take the acute care medicine so frequently, but whatever the answer is, we will work with the patient to figure it out so they can get out of this medication overuse headache. Because if we can’t get them out of that, it’s very hard to make them better. I’ll give you one example of a very good patient of mine who was almost 70. When I first saw her was using sumatriptan 26 days a month. And I said to her when I first met her, “Do you know why you have so many headaches?” And she said, “Well, I know you’re going to tell me I have medication overuse headache. So have three other doctors but they couldn’t help me.” I said, “Well, did you ever decrease the number of sumatriptan days that you had in a month?” As she said, “No I couldn’t because if I don’t take it when I need it, my headache gets unbelievably severe and may stay that way for two weeks, so I can’t do that.” And I said, “Well, I’m going to try everything I know, to get you better. But I’m going to warn you right now, I may fail only because a big part of the problem is the number of days you take sumatriptian.” And bottom line was, I did fail until some new drugs came along, preventive drugs. And once she started to take them, headaches went down in number. And she said, “I didn’t need to take them.” Great. But not everybody is as lucky as she is.
Joe Coe 05:44
And I think what is important to underscore here is that it’s a really hard cycle to break. And you need to work with the right physician. And the experience that you just shared is a powerful example of that. People, patients, people like me need to know that we have a partner in our care, that we’re not being judged for using the medication that this woman in this case felt that she needed to not have a two week long migraine. But that in reality, there are probably ways to optimize our care, that could reduce that frequency. And like you said, prevention medication sounded like the right way for her to go. So I think that’s really important to understand that when we’re talking about concepts like medication overuse headache, that it’s not about blaming the patient, it’s about really figuring out as a patient, as a provider using shared decision making to understand what our goals are, the lives that we want to live, and how we can optimize our care. And I think that’s a great example.
Dr. Alan Rapoport 06:45
You’re absolutely right. And the average doctor, if that doctor was smart enough to know about medication overuse headache might say to the patient, “You come back in a month on no sumatriptan. And let’s see how you’re doing.” That’s not adequate care. The patient is going to leave and never come back because they can’t do that. And at least if the doctor said, “Okay, do this, instead,” it would be helpful. So you’re right. Without a partnership, there’s no chance you can help a patient like that.
Joe Coe 07:21
I really appreciated a simple thing that you said, “And I may fail.” As the provider, you being upfront with the patient, that you’re not failing the patient, the medication is failing the patient, and that you guys working together might fail and you’re taking ownership and responsibility of that, I think is a really powerful shift that we don’t hear a lot from providers. So I appreciate that you said that.
Dr. Alan Rapoport 07:47
You know, it’s difficult to go into headache medicine as a physician, because patients are in a lot of pain and a lot of disability. And we can’t always help them immediately. And it’s very tough on doctors and nurses dealing with headache patients a lot. And it takes a certain type of person and personality to go into that field. And for whatever reason. I love it. And I love helping patients and I struggle with the patient. And I say to them, I will stick with you. And I might say not, I might fail, maybe it’s more appropriate, we might not get to where we want to get right away, it might take us several months of trial and error and changing doses and medicine. But we’ll work together. Most doctors don’t want to do that to be honest about it. They don’t have the time. They don’t feel they’re being compensated enough anyway. And these patients might call too much. So a lot of doctors just don’t want to deal with any patients. So you’re right. Patients need to find the right doctor for them.
Joe Coe 08:58
Totally agree and that is a good shift for my next question. We’ve been talking a lot about patients, what would you want your colleagues in neurology to know and even primary care physicians or nurse practitioners about medication overuse headache?
Dr. Alan Rapoport 09:14
Great question, hard to answer in less than the two hours that we have. But I will take a stab at it. First and foremost, we have to make the diagnosis. Whether we liked the term MOH, medication overuse headache, or we like the old term, rebound headache, or there’s a better term out there that we haven’t quite settled on yet. Whatever it is, we know what it is. We can see it, we can smell it. And we need to diagnose it. And that takes education. Because believe it or not, there are a lot of doctors and nurses that don’t know what that is. They’ve never heard the term. They don’t understand it, let alone know how to treat it. So we have to make the diagnosis better. And you talking about it a lot, writing about it a lot, me writing about it a lot, talking about that. We’re just about to submit a paper on medication overuse headache to a prominent journal and talk about how to diagnose it and some ways to treat it. And more research, clinical research has to be done because we believe that the newer drugs that work on CGRP, and blocking it in some way, are so powerful, that it really helps to treat medication overuse headache, but it hasn’t been proven yet. We see signs of that in the trials that were done just to get them approved for treating migraine. And we see that patients had come into these trials with medication overuse headache, when their migraine is successfully treated, the medication overuse headache tends to go away. But it wasn’t a trial for treatment of medication overuse headache. So it’s not good enough yet. So we need more trials, we need to convince the companies that have these very good drugs that they need to study it. And then we really need to educate the doctors about how to treat it. So it’s simple. Everyone needs to make the diagnosis, doctor and patient. And both of them need to work together to use the right drugs or the right techniques. It’s not just drugs, to get the patient better. And I will say this, for all those years that I’ve been practicing as a headache specialist, I struggled tremendously because I didn’t have the right preventive drugs. I had some preventive drugs, but they didn’t always work in medication overuse headache. So my job was to convince the patient to use fewer Acute Care Medicine pills in the month and take these preventives, some of which had side effects. Very, very, very hard to do. Now, I have a reasonable chance of saying to a patient, “I’m going to give you this pill once a day or once every other day, I’m going to give you this shot once a month, or once every three months. And you will probably have fewer headaches, and then you should use fewer of these acute care medicine.” It’s like a whole new world for me. What I used to struggle with has gotten easier for me and better for my patients. Now not everybody knows what I do about it. So that’s the problem. We need to educate the doctors and the patients.
Joe Coe 13:00
That’s really interesting. This is a separate topic. But I think there’s an inverse of this as well. And I’m thinking about my experience as a patient, the older medications before the CGRPs came out would make me feel so bad that I wouldn’t take them and treat my migraine attacks as often as I should. And I was under treating. And I think this people have this problem as well, that you under treat migraine attacks because of the side effects and all these things. So there’s an inverse of that with some of these medications that it was that it made people feel worse, I certainly did. It was hit or miss sometimes it worked well to stop the attack. Other times it made me feel worse than the attack. So I would sit there with the the medication, the nasal spray or the injection and think, “Is this worth it the risk of feeling worse, because I might feel better.” And now that there’s all these other options, I’m in a much better place, which is just amazing that science is there.
Dr. Alan Rapoport 14:02
A couple of statistics that are pretty shocking. In the old days, if I put somebody on a triptan, I would have a higher percentage than what I’m going to tell you because I stuck very close to my patients and they could get in touch with me all the time and so on. But if the average doctor put a patient on a triptan, the number of people still taking that trip in that six months is 20-25%. It’s unbelievable. And worse than that, in the old days, you put somebody on an epilepsy medicine as a preventive, a beta blocker as a preventive, an antidepressant as a preventive, the chance that the drug I put them on that they’ll still be taking it in a year, something like 16% of them. So patients aren’t stupid. They know that they feel terrible on these drugs, they’re not even sure that working, so they don’t take them. The only way a headache specialist can do better is if they really interact with their patients on a regular basis. And if they if somebody called me and says, “I’m getting these side effects,” I know either to lower the drug, or to change to another one. When you can’t get your doctor, you stop the drug. And by the way, I have that experience, I can’t get my doctor on the phone either. I don’t have migraine, but I can’t get my general doctor on the phone. I have to go on my chart. And if I’m lucky, somebody will answer me. You know, it’s difficult today.
Joe Coe 15:45
It really is and general practitioners are doing the best that they can. And I know that I was that my primary care doctor managed my migraine for probably 15 plus years, and I was on a medication that I ultimately shouldn’t have been on. And it was causing things that I didn’t even realize until I was passing out and people were like, “Why are you passing out?” and, “Oh, your heart rates of 35-40, that’s not normal.”
Dr. Alan Rapoport 16:17
I know what medicine you were on.
Joe Coe 16:18
I know you do. And it’s it’s mind blowing how much that impacted my life. And I didn’t realize how much it was impacting my life until we work to getting off of that. And on two different types of treatments. And many of us and this is not a unique experience, have cycled through all of those drugs. And unfortunately, we have to and you know, this because of the way the insurance companies operate, that they force us into step therapy and utilization management techniques that really harm us. And we have to take medication that wasn’t developed for our disease before they approved the medications that were developed for our disease. It really is mind blowing, if you take a step back and look at it that way. But it’s why we have great providers and physicians like you that are pushing that and talking about these issues.
Dr. Alan Rapoport 17:10
Well, I think we should remind physicians and nurses we shouldn’t give in to those insurance companies. It’s because we do that that situation you just described exists. I know it’s difficult to fight them. But if we all fought them as doctors, nurses and patients, they have to give in and we don’t. And we accept horrible treatment dictated by inexperienced people in front of a computer for an insurance company just so their bosses could make a lot of money. That’s really what it amounts to. And it’s wrong.
Joe Coe 17:54
It really- tell us how you really feel about that. It is wrong. It’s horrible.
Dr. Alan Rapoport 17:59
I don’t think it’s legal for me to say that on the air. If we’re on it’s, it’s, it’s horrible. It’s horrible. And I fight it but you know what it takes. My blood pressure goes up, I have to call a doctor on the phone. When I call, they say he’s busy right now. When they call me back, I got a patient on the exam table. So I have to say to the patient, “Excuse me, I need to speak to this insurance company for five minutes. And I would do the same for you.” I talked to them. And I start by saying “Well, Doctor, so and so what is your specialty?” And they say, “I’m a retired gynecologist.” And I say, “Well, I am a professor of neurology and my field is headache. And let me tell you why I need this drug.” And nine times out of ten, and I’m not mad at them I just I’m just explaining, nine times out of ten that go along with me. But most doctors won’t pick up the phone, of course they lose money when they pick up the phone. It aggravates us. You know I once made one of those calls from the hospital from my office in the hospital at Greenwich Hospital in Connecticut. And the nurses came running in, “Dr. Rapoport, you okay?” I said, “Why?” They said, “You’ve been screaming for the last five minutes.” So you know, it’s it’s horrible what happens, but it is that way and we have to fight it. That’s all I can say. And I’ve been fighting it for years and it probably hasn’t been helpful, except to my patients. That really matters to that person. So that work is super important. People are getting the treatment that they need if they’re seeing you which is which is really amazing and it should be the standard across the board. The last thing I’ll say about it is the last time I did it because I don’t do it that much anymore. The last time I did it was about three months ago and I set a stopwatch. 40 minutes, some doctors see three patients in 40 minutes, you know, so it’s really horrible what’s happening.
Joe Coe 20:10
And they do it because it works. It wears down, the physiciansm wears down the patient. We’re tired.
Dr. Alan Rapoport 20:17
And they’re making a lot of money on this.
Joe Coe 20:20
One last question. We talked about this a little before we got on air, I know that there’s some evolving language around the term medication overuse headache. And you mentioned, it used to be called rebound headache. Now, it’s medication overuse headache. And that’s how researchers and many clinicians are using and defining it. And I’m hearing in some of the patient community a term called medication adaptation headache. And the logic behind that from my understanding is that we want to make sure that patients don’t feel blamed for using medication that we feel we need to use. So have you bumped into that term? And what do you feel about the spirit of these language shifts?
Dr. Alan Rapoport 21:01
The answer is I haven’t bumped into it too much. I guess my patients haven’t been informing me, although I do go to meetings where I hear what’s happening with patients, but I haven’t run into it too much. I agree completely with the reason for coming up with another name. You know, I always say to my patient, you’re taking more medicine that I would like you to take. And I know you’re doing it because you’re hurting, and you’re trying to make yourself feel better. But I want you to understand that you’re actually possibly making yourself feel worse. So whatever you want to call it is fine with me, but I have to use that term, because of insurance again, and the companies and when we do research on an international basis, we need everybody kind of talking about the same thing. So that’s the term that we’re all using. I was very involved in the International Headache Society. But I was not on that particular committee that picked that term. I don’t particularly like the term, but it’s there. And until it gets changed, we have to deal with it, I’m fine with a patient asking me, “Can we use a different term?” I’m fine with it. And I just explained to them, I need to use the correct term when I want to make a diagnosis. And somebody may look over all the charts one day and do some research and I want to use the correct terminology. But I completely agree with the reason for wanting to change the name and anything is acceptable to me and I hope some patient will come up with the perfect name for it and I will adopt it immediately.
Joe Coe 22:54
Amazing. That’s a really good way to look at it. You know, the disease is personal. There’s large discussions over migraine versus migraines and migraineur and person living migraine. And it we can get really bogged down by it. And that’s really important discussions, but also it’s like how do we get the treatment and the care that we need? And how do we cut through the noise to get it. And I just wanted to make sure that for those of us that, you know, prefer one term or another that we addressed it, and I think that you addressed it really well. Was there anything that I didn’t ask that you would want me to?
Dr. Alan Rapoport 23:31
We do need really good research. And then we need the companies to say, “Okay, now I have that now we have the data so we can apply to the FDA to get approval for treatment of medication overuse headache,” because it’s a big problem. And about headache in general, there’s so many things I could say I would simply say, we’re in a good spot right now. And it’s very important that patients find the right doctor or institute to be treated at. And that’s very difficult to do. So patients should keep looking for online stuff and podcasts and the kind of work that you do to spread the word. And I’m glad to help with any of it because until we have patients that can really control their headaches, we haven’t done a good enough job.
Joe Coe 24:29
Thank you so much for joining me today. I know that you’re busy and your expertise is really valued for both me personally and our community at large. So thank you so much for joining me on Talking Head Pain.
Dr. Alan Rapoport 24:45
Well, I’m very happy to have been here and to help spread the word a little bit and thank you for being so insightful about asking the right questions.
Joe Coe 24:57
Thank you for listening to the second part of our two part Interview with Dr. Rapoport. If you haven’t yet check out the first part where we discuss Dr. Rapoport’s career as a headache specialist and take a look at how far migraine treatment has come.
Narrator 25:10
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Join Joe on this special Talking Head Pain episode featuring Sarah Shaw (BIPOC Patient Advocate, Community Outreach Manager) and JP Summers (Patient Advocate, Community Outreach Manager). Sarah and JP get real and unpack a recent article that has caused controversy in the chronic disease community.
Joe, Sarah, and JP discuss the negative impact of clickbait articles surrounding chronic illness, turning anger into action, and the balance of posting the positives and negatives of living with a chronic illness on social media
Speaking Out: Migraine Advocates Respond To Harmful Media
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:09
Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, and I’m here today for a special episode of Talking Head Pain. Many of us in the chronic disease community have been discussing an article that was recently published in The Daily Mail, a media source that I consider to be a tabloid or tabloid light, I don’t take very seriously but it has generated a lot of really raw responses, and feelings in our community. The title is “Addicted to being sad: Teenage girls with invisible illnesses known as ‘Spoonies,’ post Tik Toks of themselves crying or in the hospital to generate thousands of likes – as experts raise concerns over internet induced wave of mass anxiety.” So as you could see, the title itself is very clickbaity, pulling at our emotions, and trying to generate probably revenue for this, this publication’s online ads. And in doing so it has really impacted our community. I’m joined here by two of my colleagues that live with chronic disease, that are tremendous advocates that are doing amazing work to raise awareness to dispel stigma, and to make sure that people that read articles like this, don’t feel alone. Because the reality is, is that if you’re marginalized, if you live with chronic disease, you’re going to face a constant attack by people who want us to feel disempowered. For this important discussion, I’m joined with GHLF colleagues who also live with chronic disease. Meet Sarah Shaw, the Senior Manager, BIPOC Community Outreach, and JP Summers, our Patient Advocate and Community Outreach Manager.
JP Summers 01:55
It really angered me, like I had to step away, because I thought I was gonna drop my iPad. I thought I was gonna slam it down. Because again, here’s another barrier we have to overcome on top of what we already have to overcome.
Joe Coe 02:12
What made you angry about it, particularly?
JP Summers 02:15
Well, again, they were they’re taking a jab at teenagers. I feel like when they were mentioning about, “Oh, they’re doing it for likes,” I never, ever posted any of my material, my content for likes. I posted it because I wanted to raise awareness and say, “This is what’s happening to me. This is what I’m going through.” I was not doing it for likes, I was doing it because I wanted to raise awareness. And the fact that this article, all the aspects that article that they’re saying, “Well, you know, they’re they’re seeking empathy. There’s, they’re they’re trying to diagnose themselves, and it’s like, psychologically damaging,” it’s like no. And for them to also say that they’re acting worse than they really are, that is what angered me. When I’m in pain, and the amount of whether I cry, or however I handle it, it there’s no level. There is no level and it’s almost it just really upset me, again, I had to put my I put my iPad down because I thought I was gonna drop it. I thought I was gonna throw it to be honest. Because it’s just one more thing that we have to fight even harder against, that stigma. We’re not seeking attention, we are telling our truth.
Joe Coe 03:35
And that’s JP Summers that you just heard from, who is a Community Outreach Manager at the Global Healthy Living Foundation. And we actually hit record because in our warm up, JP was was so passionate about this issue that we just dived right in, and really important to hear what JP is saying. I’m also here with Sarah Shaw, who is a colleague too at GHLF. Sarah, when you read the article, how did that make you feel?
Sarah Shaw 04:02
I was furious. I was and also unfortunately not surprised as well. I feel like time and time again the chronic illness community, teenagers, women are constantly being told that it’s all in their head, that we’re making things up, that you know, we’re doing things for attention. Like I’m sorry, I have never once like tried to be an attention seeker for a living with my migraine, endometriosis or anxiety. Like that is not like that is not something that I’m gonna you know, want to post on social media and just get for the likes or you know, to the one of the parts in the article that was talking about like to convince their doctor to get them a diagnosis. Do you know how hard it is when you live with an invisible illness to get an accurate diagnosis? Not only as being like a young person, not only being a woman, not only being a part of the queer community, not only being a member of the BIPOC community, it is difficult to get doctors to believe you and this article is actually making that 10 times worse when they’re seeing and reading articles like this, that their patients are just making things up or doing things for light or content. Do you actually think that somebody’s going to admit themselves, to get in a hospital bed to get attention? Like it was just, it blew, it blew my mind. And that article was extremely ableist, and a bunch of other things targeting young young women in general, like, if anything, the women that are speaking out and sharing their truth are very brave, because I remember what it was like, being a young, a younger person not having a diagnosis yet and trying them to go through all of the noise, trying to figure out what was going on. And it was a very scary time. And so putting yourself out there on social media is very brave, especially when you have a chronic illness.
Joe Coe 05:51
So I’m hearing a lot of anger, which is rightfully placed. What would you tell someone, JP, that has anger, what they do with this anger around this article?
JP Summers 06:06
The way I would go about it is keep going, keep speaking your truth. Don’t let anyone define your illness. Don’t let anyone make you feel less of a person. I always take my frustration and anger, and I turn it into something positive. And after reading that article, I did cool down. Because again, it just, I, I felt personally attacked, not only as a female, but as a caregiver to a son who has a chronic illness. And I actually wish that it wasn’t one sided. It’s like they put they put all these females, it’s like, what about the males? My son, as a teen, I’m sorry, I’m getting upset right now. But my son as a teen faces, so much. Just people were always telling him toughen up, you know, it can’t be that bad. And as his mother, I’m like, you have no idea. He is not faking, he physically cannot sit up because he is in so much pain, from chronic migraine. And, again, the anger I felt the frustration just made me realize why I do what I do as an advocate. But also, I’m not going to stop, I’m gonna keep going this article just fueled my desire in my, everything that I do has a purpose. And I’m just not gonna let it stop me from sharing my truth, from sharing what I’m experiencing. Because you know, what I’ve heard from several people, just from one thing I talked about openly has helped them to realize for one, they’re not alone, and that it’s okay. It’s okay to, to express yourself, whether it’s on social media, or in writing, it doesn’t matter. Don’t stop, just keep going. And let the haters hate.
Joe Coe 08:01
Wow, JP, this is bringing up a lot of stuff. And it’s interesting, when I read this article, I didn’t realize the first time I read it that it was exclusively targeting young woman even though it was in the title, I went directly to the chronic disease and it was, you know, attacking people with chronic disease. It’s so multi layered. And I think the point that you bring up shows how sexism and homophobia and racism are all connected. There was a book, “Homophobia: Weapon of Sexism.” And it talked about how sexism impacts men in a way because like what you’re saying about your son, that he needs to toughen up he needs to be a man those gender roles that quote unquote masculine identity of being tough hurts young men and boys and it delays diagnosis for chronic diseases and all those things and I know it’s something that we’ve we’ve spoken about on Talking Head Pain, so it was really interesting that you brought up that area. I want to turn to Sarah now. Sarah, what are you hearing and feeling from the community that you talk to on a regular basis on social media through your professional network at GHLF?
Sarah Shaw 09:24
I think everyone is tipped off about like the whole the whole situation if that trying to say the say that nicely. I think they feel disrespected. They feel that the article paints people living with chronic illness in a very very bad light especially people that live with invisible illnesses. I think that that’s something else that is an important factor here. You know, something like migraine or MS or other diseases that you can’t or not outwardly being shown is like if you walk into, I know there was someone on Talking Head Pain when you walk into an emergency room with your hand cut off, you’re immediately going to be seen and you know, your pain is going to be treated and address this so. But for these people who live with invisible illnesses, people who are young, people who are women, non binary, you know, they’re not treated with the same respect. And a lot of different people are just just as angry as JP are. And if anything, I think it’s fueled the fire more to, at least for me, to encourage people to post more about what they’re going through because you never know what you sharing your truth, you sharing your story, you sharing your experiences, how that’s going to affect and help somebody else. I know for me, when I first started off on my journey, I came across a chronic migraine, a young chronic migraineurs blog. And that for me, I was like, oh, my gosh, she’s young, she’s just starting off in her career. And she’s also got hit with this long term illness. And that’s what we’re doing here on Talking Head Pain as well. I feel like telling our stories, like, I wish I had had this podcast when I first started off on my journey, because it would have made me feel so much more less alone, and that it wasn’t all my head, like my doctors had once told me. I was told that, you know, it’s just anxiety. And like, while I do have anxiety, like my migraines are not anxiety. That is, you know, it wasn’t just stress, it wasn’t just anxiety, there was an underlying issue. And I think that that’s what we need to keep telling people is, and that’s what brought me to advocacy, because I wasn’t getting heard. And you know, this article just drags people living with chronic illness through the mud terribly. And I think that if the person writing the article had taken a step outside and actually spoken to the people living with chronic illness and learned about their experience a little bit more, the article would not have gotten published. The fact that they say that people are doing it for clout is ridiculous.
Joe Coe 11:46
Really struck a chord. It really people really Sarah and JP, it really has hit people. And it’s really interesting. And this could be a little controversial of me. And I think this article personally clickbait horrible. We’re going to be publishing some more stuff on GHLF on it. You could check out an article that our colleague Zoe Rothblatt, published yesterday about how social media does good on CreakyJoints. There’s one area in this that I think hasn’t really been spoken about. And it’s the part where she says. “Experts raised concerns over internet induced wave of mass anxiety.” Now, that is like a horrible way of phrasing it. But I really wanted to think about what the like, if we were taking any negative intention out what they’re trying to say. And I think if I was to be devil’s advocate, that there that this part of the article was trying to say that constantly posting negative will make us feel bad. How do we balance the negative and the positive of chronic disease because that’s what I grappled with, as I was thinking about this article, as someone who has shared a lot of negative and a lot of positive. Do you think that there’s something there that needs to be explored with the chronic disease community that we’ve missed, because of how just horrible this article was in being exploitative of young people and people that are invisiblized?
Sarah Shaw 13:23
I think there was a balance, I really do think that there’s a true balance and whereas maybe the person looking at these chronic illness accounts aren’t really listening and seeing because I feel like with every account or at least that I follow, it’s a rollercoaster ride, right? Living with a chronic illness, you have your highs and you have your lows, but you always have like your community there to support you. And like, I think that there’s some really creative content creators out there that are like having, I don’t want to say fun with their chronic illness, but like showing the positives, of you know, which is one for me like the community that comes out of living with a chronic illness, and then some of you have to show the reality. So just like insurance barriers and doctors not believing you and you know, difficulty affording your medications or access issues and stuff like that. And I feel like there’s a balance that we all have to strike in in doing it whereas some some people for a certain period, they’re gonna go through a really really rough patch. And then there are people who are able to swoop in and help and support them. And I think that it really really really depends but I haven’t come across any accounts that it’s all just negative. I feel like if anything them sharing their story is a positive.
Joe Coe 14:38
That’s a really good way to look at it that these are snapshots in a person’s history and story. JP final words?
JP Summers 14:47
So I’ll tell you something, the person that wrote this article and anyone that has a negative opinion about people seeking attention needs to follow CreakyChats because every single Creaky Chats we do there’s so many people, so many. Either it’s people that have that illness or have know someone that has that condition. Even providers, you know, caregivers, they weigh in. And those conversations are true to form, they are so in depth, and they share every single thing from how they’re having obstacles to obtaining, you know, medications, but also how are they feeling. How are they doing. You know, this is just again, for show, this is what we are dealing with. What we’re experiencing. And when you see what’s going on, with each CreakyChats, you’re hearing again, perspective. And that’s true to form. That is authentic, there is no faking on what we’re saying, because we are on the same page, we need community to thrive. We need our community to feel stronger and build us up. Because we have people tearing us down like that article. And when that happens, we just have to band together and be even stronger, and fight back. Because we are not going to allow someone to define us because this is something we live with. And we’re trying to cope with it. And the last thing we need is someone to diminish, you know how we are as a person. And I for one refuse to let someone make me feel less of a person because I already have to deal with the disability part of it. The physical part. The things I can’t physically do from time to time. And I don’t need the burden of someone telling me, you know, “Oh, you’re doing it for you’re posting pictures for empathy and likes.” No, I’m doing this raise awareness. Thank you, JP. And for those that don’t know CreakyChats is our Twitter discussion that’s hosted by CreakyJoints, the online community for people with arthritis and related conditions. You can find that by going to Twitter and putting in the #CreakyChats. And thank you so much JP, for your words and passion and just energy that you’re giving to educate people and to be supportive and a role model. Sarah, any last words from you?
Sarah Shaw 17:04
As hard as it is, the person that wrote this article probably didn’t, has not had to deal with a chronic illness. And I say this because I don’t fake being sick. Half the time I’m faking being well. And so does a lot of people in our in our chronic illness community. And I think if you took time to actually get to know us, you would see that it’s too much work to fake being being sick. It’s, it’s, you know, I think that all of these people will repeat, again, are some of the bravest and strongest people out there that I know people within the CreakyJoints communitym in the GHLF community. I think people living with chronic illness are just trying to just trying to live their lives. And stuff like this doesn’t help not only them trying to live their lives, but also get access to diagnosis and access to resources and stuff like this, like, like the articles like these have kind of detrimental effects. And I just want journalists to think about that the next time that they’re, they’re writing articles without actually getting to like speak to people living with these illnesses. And I want to encourage everyone to keep sharing their stories to keep sharing their content, you know, to keep writing, to keep posting on social media, because you are not alone. And you are most likely affecting somebody in a really positive way by doing that.
Joe Coe 18:27
I could not agree more. And I think just to wrap this up what I’m hearing from both of you the range of emotions, from anger to empowerment, to not giving up to encouraging folks to continue to share their story. And also how important it is not to take shortcuts. It was made very apparent listening to you both reflecting on this tabloids piece that this writer took a lot of shortcuts. They took shortcuts in how they presented the information. They took shortcuts in how they talked about complex information. They took shortcuts in the clickbatey title, “Addicted to being sad.” They used words that were very charged, that they knew were going to generate a reaction from a segment of the world. And in some respects, they’re getting what they wanted. We’re talking about it right now. And another what we have to do is deflate the energy that these folks have. We have to deflate their ability to make us so hurt because this woman can’t doesn’t control us that wrote this article. I hear it from the work that both of you are doing, that we’re doing together at GHLF. So this woman has no power over us. Unfortunately, she has a platform, but we do too. Which is why we thought we would do this special episode of Talking Head Pain to really just allow us to have space to talk about the rawness of of this experience and this article. So thank you, Sarah and JP for being amazing colleagues at GHLF and partners in this work.
Sarah Shaw 20:16
Thank you, Joe. As always.
JP Summers 20:17
Yes, thank you, Joe.
Narrator 20:21
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
In part one of a two part episode, this week on Talking Head Pain, Joe is joined by a long time headache medicine leader Dr, Alan Rapoport, clinical professor of neurology at UCLA, the past president of the International Headache Society, and co-founder and CEO of Bon Triage, a healthcare company that helps people better understand their chronic disease. Dr. Rapoport has been in the headache field since 1979, and has seen the immense amount of progress being made to help those living with the disease.
Join Joe and Doctor Rapoport as they discuss why Dr. Rapoport decided to specialize in headache medicine, the advances being made since 1979, and the different kinds of treatments that are now available to patients.
Over Four Decades of Headache Medicine: A Conversation informed by history, with Dr. Alan Rapoport, MD
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Dr. Alan Rapoport 00:09
We had one medicine, as I mentioned. I have so many medicines I can use now for acute care or prevention of migraine.
Joe Coe 00:19
Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation. And as many of you know, a migraine patient for over 20 years. This is the first part of a two part series with Dr. Alan Rapoport, who is the Clinical Professor of Neurology at UCLA, the past president of the International Headache Society, and the Co-Founder and CEO of BonTriage, a healthcare company that helps people better understand their chronic disease. On this part, we discuss his career, why he became a headache specialist, and how much innovation and change has happened during the time he’s practice medicine. Hi, Dr. Rapoport, how are you?
Dr. Alan Rapoport 01:02
Hey Joe, I’m doing well today. How are you?
Joe Coe 01:06
I’m great. It’s a good day. It felt like fall this morning. I know it’s quite different in California for you, but it warmed up as the day went on. But we got to taste of fall for about two hours. I want to jump right in. And you have a long history of being a leader in headache medicine. How long have you practiced and why did you initially decide to get into headache medicine?
Dr. Alan Rapoport 01:29
I first opened an office in 1972 before you were born, and that was in Stamford and Greenwich, Connecticut. And I practice there for over 30 years. I did general neurology, I covered three hospitals. Over those first seven years, I treated everything. Neurologists treat some pretty nasty diseases like multiple sclerosis, brain tumors, epilepsy, Parkinson’s disease, neck and back pain, and headache. And over those first seven years, I was fascinated more by headache patients than by any of the others. Some of the others had more interesting brain problems or other ways of presenting. But what always got me excited was to be in front of a headache patient who’s smart, working, maybe had a family. And for two, three days or longer every month, they were in bed, throwing up non functional. And then two days later, you’re back doing fine, but worrying about when the next attack is going to come. We had only one medication back in those days, we still have it but we don’t use it much. It’s an ergot. And it was called ergotamine tartrate. That was it. And that was a good medicine. It wasn’t a good medicine. It was an OK medicine, but it caused nausea. And people with migraine already have nausea, so it wasn’t a great medicine. And I decided in those seven years to get more involved in headache, to help develop new drugs, and to figure out what’s causing this very complex and unusual problem, which on the surface, nobody can see anything. And all the tests end up being normal. And I said I gotta figure this out, because that’s who was coming into my office, along with the other people who are often even sicker in terms of chronic disease. And of course, many people with migraine have chronic migraines. That’s how I got into headache, and why in 1979, I decided to open a Headache Center and really concentrate headache diagnosis and treatment.
Joe Coe 04:08
Let’s go into the present. So this was the 70s. And we’re now in the 20s which sounds really bizarre.
Dr. Alan Rapoport 04:16
It’s a long time ago.
Joe Coe 04:18
It is a long time ago. What are some interesting trends that you can encapsulate quickly that you’re seeing in research now?
Dr. Alan Rapoport 04:25
Well, the most exciting thing and people always can’t believe it when I say it. When I started practice, we had no CAT scan, and no MRI scans. Can you imagine a world without scans? We had to do angiograms and milograms and mano cephalogram and spinal taps. And even then we didn’t always know exactly what was wrong with the patient. So, diagnostically if there’s something wrong with your brain that will show up on a scan, things are much easier. And then when it comes to treatments, we had one medicine, as I mentioned. I have so many medicines I can use now for acute care or prevention of migraine. And I will include some devices that are pretty helpful. I don’t know which one to choose first. I have a rough idea what might work the best with a particular patient, but I don’t always know. And then finally, the research on what causes a migraine has been just incredible. When I started out, we kind of thought, inflammation in the meninges, the covering in the brain was important, and we still think it’s important. And we thought blood vessels were involved. And now we think much more it’s the brain and blood vessels, which is a tremendous leap forward. And we didn’t know anything about serotonin at the time. I mean, we knew about it. And we knew it was involved. But we didn’t know about the receptors. And we didn’t have medicine that affects those receptors. So today, we’re in the light. And back 50 years ago, we were in the dark, like the patients are in the midst of a migraine.
Joe Coe 06:19
That’s so amazing. And I know I’ve benefited from a lot of that research as a migraine patient and knowing that there’s so many different options that are available if my current treatments don’t work, just reduces anxiety. I think for a lot of us knowing that there are multiple things that we could try and do working with a provider to feel better. So that’s exciting.
Dr. Alan Rapoport 06:41
You know, I just add one thing, you know, everybody who’s listening has probably tried a triptan and maybe tried three of them. And sometimes they work well. Sometimes they don’t. Sometimes they cause side effects. There are seven of them by tablet, and some of them are nasal sprays as well. And some of them are injections, and some of them are inhalers. We did loads of research back in the 90s and after 2000. We, in our Headache Center in Stamford, Connecticut, we were doing approximately 14 trials at one time. And we were involved in all of that research. And all of that was critically important because everybody has tried triptans. But today, people are looking back and saying yeah, they’re great. And some of them say, “I don’t want to move, I’m fine.” And that’s okay. And some of them are saying they never worked that well. And they cause side effects and they constrict blood vessels. But look at the six or eight new drugs we’ve had, in the last less than 10 years that have moved us way ahead. I think our patients, they’re unlucky that they have migraine, but they’re really lucky that they’re living today. And that’s 50 years ago.
Joe Coe 08:01
Especially if they are connected with the right provider that is able to educate them on their options. I think a lot of us, and I didn’t realize this until doing this work professionally, that the living with a headache every day isn’t normal. I thought it was. I thought that everyone had a minor headache every day. And until I realized that that counts towards your headache counts when it comes to what types of treatments you can access, I would have still been on some older medications because I didn’t know that information. So we need to get that information out to our community to let them know that you don’t have to live in this pain. You could try different options and hopefully they’ll work well for you. And if not, you can continue to work with a provider to find different things.
Dr. Alan Rapoport 08:54
Extremely important concept and I think you will move the needle ahead better than a lot of us have been able to do in the past. I mean, we’ve been working on this for years. And not only do you have to get to the patient, you have to get to the primary care physician.
Joe Coe 09:12
Thank you for listening to this first part of my conversation with Dr. Rapoport. Join us next week as we continue our conversation and tackle the topic of medication overuse headache. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.
Narrator 09:32
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
This week on Talking Head Pain, Joe is joined by longtime friend Julienne Verdi, mother of 4, a migraine and ankylosing spondylitis patient, lawyer, and the Executive Director of the Alliance for Headache Disorders Advocacy. The Alliance for Headache Disorders Advocacy advocates for policy change that improves the lives of those living with migraine through events like Headache on the Hill.
Join Joe and Julienne as they discuss living with two chronic illnesses, motherhood, and the important work she is doing at the Alliance for Headache Disorders Advocacy.
From Pain to Purpose: A Conversation with Julienne Verdi (Association for Headache Disorders Advocacy)
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Julienne Verdi 00:10
Living with Ankylosing Spondylitis and living with migraine just has me so empathetic for those who have other types of invisible diseases and illnesses. Think you look at me, you think I’m young I’m, you know, I must be fine and you know, it’s just a headache or it’s just, you know, just a little back pain.
Joe Coe 00:27
Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m here today with Julienne Verdi, who is the Executive Director of the Alliance for Headache Disorders Advocacy, the organization that many of us in the migraine community know that runs Headache on the Hill. Outside of that she’s an attorney and a nonprofit leader. And for those who don’t know, we’ve known each other since our early 20s. The world is in fact small. Julienne, how are you feeling today?
Julienne Verdi 01:00
I’m doing okay, Joe, thanks for asking. I hope you’re feeling well as well.
Joe Coe 01:05
I’m a little tired, but that’s life. So you live with migraine, how do you explain your worst migraine attack? What was that like for you?
Julienne Verdi 01:13
I do experience migraine and I would say my worst migraine attack probably happened in the middle of the pandemic. I remember being home with my three kids at the time. And just feeling it starting and not having, I hadn’t had migraine medication at that point. I have had migraine attacks throughout my life, had been treated throughout my life. But I was in this period of time, especially during the pandemic, where I think so many of us were where our health care just was neglected. And I didn’t have rescue medication. I felt it coming and there was nothing I could really do besides take ibuprofen and it didn’t do anything. And I ended up on my bathroom floor because the cold tile was the only thing that felt good and I was vomiting and experiencing just such severe pain that I was, you know, contemplating going to the hospital but again, it was during the pandemic. I was scared to do that as well. And I just remember finally, you know, my husband having to literally carry me off the bathroom floor, get me into bed, and tying one of his neck ties around my head because the counterpressure on my temple was like the only thing that was giving me at least a tiny bit of relief and just sobbing for hours and hours until I finally could fall asleep and sleep the rest of it off. I mean, it was horrendous.
Joe Coe 02:35
Sound like it. You’re not the first person, unfortunately, that has said on this show being on the cold floor and in a bathroom. Actually, someone else talked about being an airport bathroom. And we do what we need to do during those those horrible attacks. I can I can totally relate. Put my head in the freezer before, tried that. I don’t advise that to people. You also Julienne, live with ankylosing spondylitis, which is a disease that a lot of people probably don’t know about. It’s an inflammatory condition. What did you learn living with both chronic diseases and how has that changed the way you view chronic disease?
Julienne Verdi 03:15
Absolutely, so you know, my experiences with ankylosing spondylitis and migraine are just so intertwined for me. My first migraine attack probably happened when I was being diagnosed for ankylosing spondylitis. So ankylosing spondylitis, like you said, is a chronic inflammatory disease. I have, you know, lots of pain and inflammation, my sacroiliac joints, my spine, as well as other joints. And so when my inflammation is high in my body, it can absolutely trigger a migraine attack. And so, you know, more often than not, I experienced both types of pain at the same time. You know, it has been a challenge. It’s something that you know, it impacts everything that I do. You know, I can, there’ll be days where it’s hard to get out of bed physically and I need to and that stress of the physical pain can trigger a migraine attack as well. So they’re just so intertwined in my life. And it’s, it’s it’s definitely a challenge, but it’s something that, you know, living with ankylosing spondylitis and living with migraine just has me so empathetic for those who have other types of invisible diseases and illnesses because I think you look at me you think I’m young, I’m, you know, I must be fine. And, you know, it’s just a headache or it’s just, you know, just a little back pain and you know, people really downplay that, I think, especially when you supposedly look healthy.
Joe Coe 04:33
No, that’s so true. And I know with both diseases, getting a diagnosis can be rough. Did you experience delays in getting diagnosed with both ankylosing spondylitis and/or migraine?
Julienne Verdi 04:44
Absolutely. For both illnesses. Both, I started having symptoms in my teenage years, probably like 15 or 16 years old. And I did seek treatment for ankylosing spondylitis. I was going to doctors, and it took almost 10 years to get a diagnosis to figure out what was what was going on with me. You know, first they thought it was Lyme disease. And they thought, you know, it was rheumatoid arthritis or, you know, whatever, growing pains, was really what I got in the beginning, you know, must just be growing pains. And it was the same thing with migraine. And I think with migraine, especially what I think, really hindered me getting a diagnosis was that my family experienced migraine. My father does. And to this day, he still calls it a sinus headache, you know, and so there’s just so much misinformation out there. And so for years, I thought what I was experiencing, unless it was one of those really bad attacks, where I’m on the bathroom floor, I thought all those other headaches that I was experiencing, were just sinus headaches, you know. And so I was taking a lot of over the counter medication. And because of that, I actually ended up giving myself ulcers, multiple stomach ulcers from self treating, because my providers weren’t taking my pain seriously, and helping me figure out what was going on and find safer medication to take.
Joe Coe 06:01
So I want to switch gears and talk about balance. How do you balance living with migraine and being a mother?
Julienne Verdi 06:09
I think that’s one of the biggest challenges of my life. So I’m a mom of four. I have four young children; a seven year old, a four year old, a two year old, and a one month old. We have a full house here, it’s so much it’s so it was bring so much joy to my life. But it’s a challenge because there are absolutely those days where I just don’t feel well. And the kids want me to play and mommy has to say, No, I’m sorry, but Mommy’s not feeling well.” And that is something that, you know, breaks my heart every single time. There’s become times where my son, you know, will just start asking, like, “Are you feeling okay, today? Mommy, can you play with me today.” You know, so they know that I have so many of these days that aren’t so good. And one of the things as a mother that I’m grappling with right now is that my son who’s seven is starting to show some signs of having head pain himself. So you know, I started noticing over the last couple of months and some instances where he’s having, you know, sort of an emotional outburst. And you know, then he kind of retreats to his room. And it’s only later on, you know, because I’ll go in and check on him. And he doesn’t want to talk. And it’s only later on where he’s telling me he didn’t want to talk because his head was hurting. And he’s literally under the blanket covering his head because of the light sensitivity. And he’s experiencing head pain. And what a heartbreaking thing to watch as a mother to know that I know what that pain is like, and now seeing my kid going through that same thing. But I think that the one thing about that is what a motivator because now I feel like I have to go mama bear on migraine and headache policy because it’s not just me impacted, now it’s my kid.
Joe Coe 06:25
Love that. And I was I got pumped up at the end. What you were just saying. Let’s go! So we know each other from New York politics back in the day, what did you learn working and volunteering in Staten Island that you apply to your current work?
Julienne Verdi 08:03
Yeah, so Staten Island is an interesting place. New York politics is a very interesting place. You know, it is a very close community. There’s just so much stigma, I think, also just with being from Staten Island that I think it kind of, I bring into this work now that there’s so much stigma with having a headache disorder. But I think the other thing about this community as is it is a little tight knit, you know, the headache community is a little tight knit. And so breaking in and being an outsider kind of coming into this work. Because I haven’t been in this field for a long time. Although I’ve been experiencing migraine for a long time I haven’t been in in this world. It could be a little insular. And I think that that’s one of the things that I’m trying to work on within the organization is making sure we’re not just using acronyms without explaining what they are, right. And making things a little bit more approachable for those who aren’t in this field.
Joe Coe 08:59
We have a joke at GHLF that we don’t use acronyms at GHLF, Global Healthy Living Foundation. And that’s the joke. In talking about your work, Julienne, what are you most proud of as an organization? And what are some continual struggles and fights that we’re looking at as the years go on?
Julienne Verdi 09:18
It’s a great question. You know, we’ve accomplished some real wins over the years, such as the establishment and expansion of headache disorder centers of excellence, within the Veterans Administration, the VA hospitals. And that’s to treat veterans experiencing migraine and headache disorders. That’s a community that’s really impacted by headache and migraine disorders because of you know, various issues. Their exposure to toxic burn pits, which we’ve heard a lot about in the news lately. It’s also because of they have a higher rate of concussions and other head injuries. And so these centers of excellence are treating these veterans who have made sort of the ultimate sacrifice and service to this country, we’re finally treating them in an in a way that is acknowledging the, the immense impact of these disorders on their lives. So that’s something that I’m really proud of. And I’m so proud that it’s continuing to expand. And that work is something that we think is a model for that we hope that everybody would have access to really. We want everybody to have access to the same quality care that we’ve been able to secure for our veterans. And then in terms of areas where we think we need to continue to work, I think funding within the National Institute of Health, the NIH, so funding for migraine has been really low compared to the disease burden. It’s actually the least funded research area related to disease burden within the NIH. And we believe that’s unacceptable, and it’s holding back progress for new and exciting research and treatments for headache disorders. And it also holds back providers from going into this field because there’s less research money available to them. So we need to make it you know, exciting and well funded for more doctors to get into this space.
Joe Coe 11:10
Last question for you. Can you tell me what you’re most excited looking into the new year and the rest of this year with the Alliance for Deadache Disorders Advocacy?
Julienne Verdi 11:18
Absolutely. So, you know, the Alliance for Headache Disorders Advocacy, we are a 15 year old organization and have done so much work in that 15 years. We’ve experienced some real growth, I think over the last year, there’s been some rapid change and growth. And I really see that continuing in the future. I’m really trying to come in with kind of fresh ideas and and think about how do we move this work forward. How do we do really targeted outreach and bring people in from underserved and underrepresented communities and, and we really thank GHLF for being a partner in that work and helping us to to better do outreach to the BIPOC community and LGBTQ communities. Because I think it’s so important. I think what what excites me about this work is, is that I really believe that the best spokespersons for making change are those who are impacted by the work. So those who actually experience headache disorders, and that’s what’s so great about our work, we bring together patients, providers, caregivers from all around the country, and bring them to Washington DC, whether virtually or in person to our Headache on the Hill event, where they advocate for change. They speak to their legislators, maybe for the first time ever, they’re ever experiencing, you know, an advocacy or a lobbying meeting. That’s really empowering to go into a meeting to tell your story to an elected official or their staff and impact change. And we’re doing it. We’ve done it and our our advocates are doing. Just in our last year, we brought 200 advocates from 48 states to our Headache on the Hill and think that that made a difference. And it’s continuing to make a difference. And I’m really excited. We’re working on our asks already for this year, I think they’re going to be great. And I think, you know, I’m really hoping we’ll bring even more folks. I would love to get to 50 states so that that’s a little bit of a goal for me over the next couple of years.
Joe Coe 13:08
I personally can say it’s a great event, I’ve been able to attend it in person. And I know that dhlf folks have supported it virtually and in person for many years. And it is truly empowering to be able to take pain and change it into purpose, which is something we talk about a lot here at GHLF. And really appreciate your energy and time and passion and commitment to this work. And I truly look forward to continuing to work and grow with you, Julienne. So thank you for joining me today.
Julienne Verdi 13:41
Thank you so much for having me and for the important work that you’re doing to break down stigma. I think that the work that you’re doing with this podcast, it’s storytelling and it’s an incredibly powerful tool for impacting change. And, you know, by speaking truth to power telling our stories, we can break down stigma, change hearts and minds and truly make a difference to the millions impacted by migraine and headache disorders in this country and you’re doing that work and I’m so glad to call you a friend and partner in that.
Joe Coe 14:10
Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.
Narrator 14:26
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
This week on Talking Head Pain, Joe is joined by Pascal Derrien, Executive Director of Migraine Ireland. Pascal shares how his team at Migraine Ireland is working to increase migraine awareness through workplace training, advocacy, and community outreach.
Join Joe and Pascal as they discuss the challenges of living with migraine in Ireland, the workplace training programs conducted by Migraine Ireland, and the cycling fundraiser Pascal started.
Migraine in Ireland: A Conversation with Pascal Derrien
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Pascal Derrien 00:09
Men in Ireland are not willing to go to the doctor for anything, but there’s a lot of, I suppose, inhibition from men when it comes to migraine.
Joe Coe 00:19
Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation, and a migraine patient for over 20 years. I’m delighted to speak with someone internationally today, Pascal Derrien, who is the Executive Director of Migraine Ireland. He’s been doing some really amazing work leading that organization over in Ireland and I thought it would be a good opportunity to connect with him and hear and learn from him about his perspective. Hi, Pascal, how are you doing today?
Pascal Derrien 00:53
Hi Joe, I’m good, I’m always good. Thanks for having me.
Joe Coe 00:56
I’m so happy that you’re on. Let’s start by finding out your connection to migraine and chronic disease. What brought you to this work, Pascal?
Pascal Derrien 01:05
I came across the Migraine Association of Ireland 25 years a go, on a different path and you know, they were somewhere and they were giving a talk. But 25, I was actually pretty surprised that 25 years on actually they would come near me and we, migraine was slightly more than I was expecting. So I still like most people had, I suppose, preconception or perception of migraine. And I went and ended up having some chat with the board’s during the recruiting process, I realized that actually that was way bigger than I thought, starting with being neurologic disorder and all these type of things and not just a headache, which is obviously one of our taglines. Also, because the fact that was a chronic conditions really interested me, while I’m not a migraineur myself, I’m diabetic. And I think the overarching principle of chronic conditions around the spectrum, you know, you live with a Sword of Damocles above your head, or some have been medicalized more heavily than others. The anxiety attacks, the up and downs, or going to the doctors and all that jazz, medications. So what I found actually most similarities with my own condition, or at least from an understanding perspective, or than really a lack of knowledge. So I found a relatively at ease. However, I had to learn quite a lot, no pun intended, but my brain was blown away when I two, three months in, I learned so much about it. And I and also how prevalent was the condition in the society, how highly it was ranked from the WHO perspective and all these things. Yet, there’s a lot of trivialization and stigma in our society at large, but also in workplaces in particular. So that really interested me in terms of you know, how we can push the narrative in a different way, at least from an Irish perspective.
Joe Coe 03:01
That’s a really good segue to my next question, Pascal. I want to know what the mission of Migraine Ireland is and how it is being an Irish person living with migraine?
Pascal Derrien 03:12
So Migraine Ireland, for us, our primary mission is really to educate. And that’s really at the core of what we do day in, day out. And we do this through various channels. So we have what we call a Patient Channel where we run 20 to 30 events open to the public. We facilitate them, we invite doctors, professors, nurses. We also have another program which is called Workplace, where we educate people who may not know too much about migraine; HR practitioners, DNI champions, HR or business unit managers and so on. We have started to work with some private insurers and wellbeing companies as well. Our which is really people, education, and outreach. We also have self management courses for migraineurs. And we also have an info line, where we do signpost people towards either neurologists or we try to demystify a few of the myth as well. However, we are not clinically qualified. So we really only a signposting. We never really get involved in terms of you know, prescription medication and so on. So we leave that to the healthcare professional. We are tiptoeing a bit in research, and by that I mean we are supporting some startups, pre-startups, and also people who are doing PhDs in terms of research from a survey perspective because we have access to migraineurs. From a migraineur’s perspective, we also have a closed digital platform which is a peer to peer social media for migraineurs. It’s only for migraineurs, we have excluded health care professional, and anybody who wants to sell products, so it’s just really migraineurs who are sharing tips, experiences. It could be anything to how do you travel overseas when you’re a migraineur or to I have that product, I’m trying this it doesn’t work so what’s your experience and so on. So in a nutshell that’s what we do.
Joe Coe 05:02
That’s really fascinating. Pascal, what is the access environment like around treatments? Here in America, we have access to CGRPs and neurotoxins and neurostimulation devices and all these different things. Is it like that in Ireland? What are some of the unique challenges?
Pascal Derrien 05:22
I suppose in absolute terms, yes. In reality, I probably need to provide you a bit of context about Ireland. So Ireland is a small country. 5 million, or 5.1, depending who you talk to. 600,000 people suffer from migraine in Ireland. So it’s roughly a ratio of 10 to 15%. Ireland is a country, from a structure perspective ,is highly fragmented, so you have Dublin and then smaller cities or towns. There’s a huge deficit. And it’s not only in Ireland, but we know in Ireland, we feel very accurately, there’s a huge deficit of knowledge in our health care practitioner population. We don’t have many neurologists who specialize in migraine we have or a huge interest in migraine. The number of GPs is actually are not high either. And the training around migraine is actually almost non existent. And then clinical nurses who would be specialized in neurology is a huge, huge deficit of them. In Ireland, we probably need around probably 120. And there’s a gap of 60. So may not sound a lot by American standards. But for such a small country, it’s actually pretty, pretty big. In terms of high technology product. Yes. However, at pharma level, from the day of submissions to, let’s say, go to market, I think the rest of Europe, you could say roughly, on average, it’s 200 days, you know, providing there the economics are favorable, obviously, the clinical trials and so on. In Ireland, you’re talking about 600 days, so we are lagging behind big time. So it’s, it’s not overly structured, if you happen to have private insurance. That’s okay. If you don’t, it’s a different story altogether. Already from the public system, there’s always a lot of waiting lists on various pathology. So migraine not being lethal, or fatal in terms of outcome, I can let you imagine where we are, in terms of waiting list. However, there’s also some, I suppose, hope, where for example, the HSE, which is the equivalent of the National Hospital System here, Healthcare Service Executive, have also kicked off some pilots around pathway to care for headache. And Migraine Ireland has been playing a pivotal role in terms of steering committee, but you know, the pilots have been very conclusive. Migraine Ireland has been there, I suppose we’ve heard that one of the reference organizations for non medical care. However, it has not properly been launched within the country has the pilot in terms of execution, we are still, I suppose a couple of years away from having the structure in place. So yes, we have access to most of the medicine available worldwide. However, the execution is a bit more problematic, and it’s a bit more fragmented. Also, we have a huge deficit in terms of technology when it comes to health in Ireland. So we still do things on donkeys with papers and stuff like that. So not necessarily want to add some paddywhackary to the leprechaun image of the Ireland. However, the reality is, we are not there yet. So there are some programs and pilots, but they’re not really fully execution day in, day out.
Joe Coe 08:57
Yeah, and I think you guys are doing amazing work to help address some of the stigma, to raise the profile of migraine, to really explain how it is a disease that deserves and warrants the attention from health systems. To that end, I noticed in looking at the work that Migraine Ireland does, you developed a workplace program to educate workplaces about migraine. Can you talk about what you’re doing there and why that’s important?
Pascal Derrien 09:24
Yeah, absolutely. So I took the organization over roughly 14 months, and I think we had a very strong muscle geared up to a patient or general public. You know, if you bark at the same tree, you always get the same results. So we decided that it would actually, in order to have an impact, it would be good if we were to develop a narrative geared up to people who may not know too much about migraine because that’s where the stigma happen, especially in the workplace. When you think that 11% of the people who are migraineurs who are working either lose their job, have to go part time, or to repurpose the carrier. It’s pretty important. Also, it’s one of the few neurologic disorder where people are still in employment by and large, so we thought it was critically important to educate. So eight months ago, we, we decided to have a kind of a programmatic approach and the programmatic approach would be in three fold. The first point would be to get migraine awareness, kind of a one on one around migraine, what it is and what it is not. And at this stage, it does, you know, it’s 90% of our work. We also aspirationally, once we have had the first talk, we can come back with a second talk, which would be a bit more tailored, that will be more scientifically geared up towards a specific population within the employer. And certainly, we’ve been working on it for 12-14 months. We are looking at potentially having an online accreditation, which would sit primarily in cooperation for starter and being part of either web program, or, I suppose, or training participation from employees. And with an accreditation in the end and a certificate. We’re not necessarily where we want today, because we’re working with some organizations who are working on a larger scale. And we’re a small country. So whether it’s adjustable or not, what we know as well is we are touching corporate at this stage, which is the tip of the iceberg because 95% of the companies in Ireland are actually very small. So the second stage with us would be to reach out to SMEs where they may not have a DNI or an HR practitioner and you know, but you still have migraineurs working there. And we don’t want people to be stuck in a corner, or be victimized and so on. Also, we are pushing the narrative to have migraine included in the DNI narrative. And it’s really important around whole chronic conditions, non visible disabilities, and so on. I think DNI has had a lot of big growth the last 10 years, LGBTQ+, gender, and ethnicity, all this type of thing absolutely needed to happen. Now it’s time to pass to a second phase. Really, there’s a lot of diversity in a workforce, which is not necessarily linked to what I was outlining earlier. So wellbeing is important one. Also, while migraine tends to impact ladies in their prime, it’s not only ladies, it’s also gentleman and some people carry the flame of migraine way past the 50s and 55, as well, and it needs to be addressed. Now people are working longer. So in companies, it’s also important. So what do you do with people who have chronic conditions? And not only migraine, it could be diabetes, it could be anything else. So what do you do with those people? Are you writing them off, or you accommodate them? So we have the Reasonable Accommodation Act in Ireland, which is geared up towards disability, we are really doing a lot of lobbying just to try to get migraine included that but not only migraine, could be epilepsy, and so on and so on. So the workplace environment is a huge and untapped opportunity for us. And so far, the response is actually pretty good. Also, when you add that the economics are pretty telling, 260 million euros impact on the Irish economy. For such a small country that’s pretty staggering. And lastly, millions of days of work loss. Then you start to get traction for the CFOs there’s always a Ah Ha moment. Oh, that’s not just a headache.
Joe Coe 13:36
Yeah, show them the numbers. What I really appreciated about the Migraine Ireland site was that you had a section for men. I often don’t see that as a man with migraine. I thought that was that was really cool.
Pascal Derrien 13:48
Yeah, I actually just want to reel on that. That’s it’s an interesting one. Obviously, it’s a 70-30% ratio. So 30%. There’s a lot of man who aren’t diagnosed and men in Ireland are not willing to go to the doctor for anything. It’s not only Ireland. But you know, it’s always very hard to get traction on that front. We have done a couple of things. We’re not there yet, by any stretch of the imagination. We have a on a monthly basis, something called Afternoon Tea, where people just dropped by, exchange and very recently we starting to see it was only ladies for whatever reason unless I was there. And the last few months, we started to get gentleman showing up on our, it’s interesting, not necessarily a huge number, but though they’re there. We also organized a talk or a public talk geared up only to men. What was interesting, a lot of people did sign up, but not a lot of people did show up. So we’re going to continue on doing it because it’s super important job. But there’s a lot of, suppose, an inhibition from men when it comes to migraine. It’s seen as a weak condition and so on. So we probably need more people like you Joe, to do what you do and talk about it and say it’s perfectly okay to talk about it because it’s actually it goes in tandem with trivialization, it’s just you know, it’s, “it’s a lady’s condition or just go go to the pharmacy and and get some paracetamol. And it’s just a bad hangover,” all these type of things. There’s a huge misunderstanding. So while women are a bit more forthcoming, when it comes to describe the symptoms and go to healthcare practitioner, we know that’s not the case in Ireland. So I’m glad you, you have noticed. In terms of impact, you know, it’s one of our priority to, I suppose, magnify the impact, to scale up our impact in that domain there. And also for children. It’s a journey, the famous journey, as people would say, but you know, we’re working on it on. Anecdotally, we have some good response.
Joe Coe 15:52
Yeah, it’s definitely true. I remember, I was switching treatments and adjusting to a new one. And I was working with a personal trainer and weightlifting and doing all these very what people would consider masculine, broy things here in the States and loving it. I lift weights a lot now. And I think it’s great, and it helps me manage, also can trigger some folks, works for me. And I noticed that on your website to that you talk a lot about exercise and how to work with people to find what’s right for you. But I think the process of sharing that I have migraine, I’m getting dizzy, you know, we have to scale back on some of these activities before we ramp it up in the future for me to get my disease under control. I think as men, many of us wouldn’t feel comfortable having a discussion because you want to continue to push and like you said, Pascal, we don’t want to be seen as being weak. But I think that the more that we are real about our pain, and that this is a real disease, people will be impressed with how strong we are. Because we’re dealing with this disease that can be very debilitating. And we’re figuring out ways to manage it and, and do it in ways that are healthy that listen to our bodies. And so I love that you’re doing this work with Migraine Ireland.
Pascal Derrien 17:06
Thank you.
Joe Coe 17:07
My last question, or one of my last questions for you, I noticed it you guys just did a big cycle fundraiser?
Pascal Derrien 17:15
Yeah, so it was an interesting one. So I’m a cyclist, I do endurance sport. I do marathons and stuff like that. We know that sports, or especially endurance sport, is obviously a double edged sword for migraineurs. And we were debating as a team, you know, is it the right thing to do? Are we going to exclude some people on so on and so on. So, so we spoke to a few, kind of a focus group almost to a certain degree. We spoke to a few migraineurs and we came up with the idea that you know, first we need to spread the message further afield, maybe towards the community who may not know too much about migraine. So again, an opportunity to spread the message into different channels. The second way was a fundraiser because like a non for profit organization, you know, we are tight, budgets are tight. We’d love to do more, but you know, we don’t necessarily as much as we would like to. And certainly, we realized that the format would try to be inclusive, and so far that we would propose a 50 kilometers at moderate pace and 100 kilometers with more experience. We found out actually there was far more migraineurs that were willing to take on the challenge, albeit, some would tell us, “I will be only able to confirm I’m showing up probably on a morning or the day before depending on how my chronic migraine does evil that week,” and that was okay by us. But we had a cyclist which is very well known in Ireland, was very well known, probably more 20-30 years ago, Sean Kelly. And came to us so that that was quite a lot of attention. We had quite a few press releases, some interviews on the radio and stuff like that tagging along with the cycle. On the day we had some migraineurs, actually some Irish migraineurs who actually flew over from France, where they based and brought some other migraineurs with them, but took on the challenge. And I think it was it was brilliant, because there was a big smile at the end of the challenge for those who took the 50k. And I think there’s a couple of migraineurs who took on their 100k and just a sense of accomplishment and being a part of it. Because very often in those events, people either drop, they’re, you know, looked over. All these type of things. On the day, each group was staying together. So you may not know more about cycling, some supportive, some people tend to take off and disappear. And it’s like, it’s not a race but people think it’s always. Purposely the two groups we had to stay together actually we merge at the end the last 10k together. We worked out something that everybody finished together. And it was a great day. We’re planning the second one already. We also planning some other events, maybe a jog, walk 5k, where actually far more, I suppose feasible for migraineurs to walk and whether they walk, 2k, 3k, or 5k’s, we’ll see. So we really want to make sure that people understand that, while it’s a chronic condition, you can still do things. You may do need to adjust. You may not be Usain Bolt. Having said that, you could. And I think it’s really for me to try to empower migraineurs as well, because sometimes chronic, people who suffer from chronic condition, there’s a lack of self belief, you know, you almost writing yourself off. No, I think you need to adjust. I think you need to embrace to certain degree. But I think you need to be accountable as well. I think you can go towards the healthcare professionals. But I think you need to do some work. Obviously, the diary and the patterns and the triggers for migraine are key to the diagnosis. But for any other condition, chronic conditions as well, I think you need to embrace and accept, there’s an acceptance somewhere, that you actually are experiencing your chronic condition. And I think it makes things easier. But when it goes back to exercise, and sport, I think if you adjust, you know, I think that’s important. You were mentioning weight and so on and some weeks you made more, some weeks you may do less, and that’s okay. And the importan is consistency. And routine is important in any way, whether it’s migraine or any other type of chronic condition. Exercise is key, I think there sometimes there the gray area for migraineurs is is you know, it’s a double edged sword, and you’re not too sure whether it’s going to trigger it, or whether it’s actually going to help you prevent it. I guess it’s trial and error, you get to know yourself better. Now, it was great. And we’ll do it. And the interesting bit is we had a few people coming to us just you know, having a five minute conversation. I said, “You know what, I know more about migraine so next time I hear migraine, I’m not going to laugh. And I’m not going to dismiss it.” I think it’s far more important that how we were speculating about so if we can change the mind of individual one at a time. That’s pretty much what we’re trying to do. And the cycling was one channel for us.
Joe Coe 22:06
I loved it in your materials promoting the cycling event that I think you ended it with, “We do it for those who can’t.” I think that that is a really important message that’s many of us as advocates feel. You know, we do that because we can. I appreciate all the work that you’re doing, Pascal, that Migraine Ireland is doing, that we’re going to be able to do together as a global migraine community to ensure that everyone gets the support, care, and love that they deserve when they live with a disease. So thank you. Thank you so much for listening to this episode of Talking Head Pain, the podcast to confront head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.
Narrator 23:02
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
This week on Talking Head Pain, Joe is joined by Samuel Kelokates, a physical therapist specializing in treating migraine. Sam is no stranger to pain and stigma having lived with tension headaches and a visible disability. His unique experiences and education inform his physical therapy practice focused on helping people living with headache disorders.
Join Joe and Sam as they discuss non-pharmacologic options for migraine, practical physical therapy tips, and managing migraine triggers with the help of physical therapy.
Physical Therapy and Migraine: A Conversation with Samuel Kelokates, PT, DPT, GCS
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Samuel Kelokates 00:09
Being with a visible disability, you know, people can look at me and know that I have a disability and understanding like, oh, I might need help. For people with migraine, they don’t really have that luxury.
Joe Coe 00:18
Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m here with Sam Kelokates. He’s the founder of Kelos Physical Therapy. He specializes in the treatment of headache and migraine in his patients. Outside of his professional work, Sam is a congenital amputee and athlete and his unique life experiences help him relate to migraine headache patients. I’m really delighted to have Sam on the show today. So Sam, how are you feeling today?
Samuel Kelokates 00:55
I’m doing great. Joe. Happy to be here. Thanks for having me.
Joe Coe 00:59
Amazing. So I learned that you live with tension headaches, can you describe what a tension headache feels like for you?
Samuel Kelokates 01:05
Yeah, for me, at the time when I was struggling with tension headaches was right out, like right at the end of PT school and for the first couple of years afterwards. For me, the tension headaches would usually start kind of somewhere in the morning with like upper shoulder and neck pain, and gradually progressed throughout the like morning into the afternoon, like right up over the ear into the eye and just kind of be like a very dull ache. And like a lot of pain was like mild, sometimes moderate if I let it go too long before like taking any NSAIDs or laying down for a few minutes. So but at one point it was getting so it was happening enough to where like it was like four or five times a week for me.
Joe Coe 01:46
What made you specialize as a PT in headache and migraine?
01:49
In 2021, I decided that I wanted to open my own practice. And I just started seeing a couple of people on the side while I worked a home health job. And then I started seeing a couple of friends for headaches varying from tension headache to cervicogenic headache and a couple of migraine people. And I started using those treatments on myself and other family and friends. And it just spiraled into me seeing that there was a need for this. And that there wasn’t really a clinic that they felt that they could go to that said like, “Oh, we work with people that have you know, headache, or other oral facial pain disorders.” And that there was an opportunity here in the community that people really needed help with.
Joe Coe 02:28
I was drawn to interviewing you based on a tweet that I saw that you put out, and I’m going to read it and ask you to explain what you meant by it. So you tweeted, “Migraine has been described as a sensory processing disorder. Another reason I strongly encourage exercise for those with migraine, as it has been shown to improve sensory processing. This can result in less frequent attacks by decreasing sensitivity to certain stimuli.” Can you explain that, Sam? I think that’s super interesting.
02:57
Yeah. So with one of the theories with migraine is that there is so many sensory stimuli involved from visual, auditory processing, vestibular and touch. So in our somatosensory system that there’s so much going on, we’re having difficulty with processing and integration of these sensory stimuli. And that’s been shown in both children and in adults with migraine. So there tends to be this hypersensitivity to the various stimuli that are present both during and between attacks for people with migraine. So the way in that I said, exercise, it doesn’t necessarily have to be exercise, it can be multiple forms of movement from walking to running and biking to yoga, or doing housework. But physical activity is really good for helping our body process these sensory stimuli better. And over time, especially with exercise and the way it can be dosed, can help our body create new pathways to make these connections stronger to decrease how frequently they make you trigger into a migraine attack.
Joe Coe 04:02
That’s really helpful. And I appreciate that you define exercise a little more broadly, because a lot of folks when they hear exercise, they think of like intense aerobic activity and walking is a form of exercise.
04:15
Yeah, and I think, so when I say exercise, I mean, it’s kind of it’s kind of like medication, where there’s a specific dose. There’s how much time, there’s a specific intensity that we work at. And we’re really working on controlling the volume that somebody is doing, one to not trigger an attack, but also to modify their disease so that it occurs less often. It can be varying for different people depending on what their needs are at the time, and also what they enjoy. So not when I say exercise, I don’t want people to think like, “Oh, you have to be running down the street during you know, high intensity CrossFit style workouts.” That’s not what people need all the time. For some people, if that’s what they want to get to, I can help them get there. But that’s not necessarily what people need to make sure that their disease is improving.
Joe Coe 05:00
And how do you talk about exercise with people that are in pain? Whether they’re living with migraine, that’s one of the last things that we want to do when we have a migraine attack or dealing with the ongoing implications of migraine.
05:16
That’s a really good question. So for, it really varies on the person, how they perceive exercise and movement and what the purpose of it is. So if they have kinesiophobia, so they’re fearful of any type of physical activity will trigger an attack, I really work with them on finding something they enjoy and working towards that so they’re less fearful of that movement, and can feel more empowered living with a chronic pain condition. Now, sometimes being in pain, exercise can actually really help that because it does modulate our pain perception. So it can actually decrease how much pain you’re feeling at one time. So making you feel less intense pain, but it also helps us increase our thresholds of pain. So it requires more stimulation to induce an attack or high levels of pain. So I really work with trying to teach people that, you know, how does exercise and movement affect pain, and how does that, in turn make your life more functional or give you more abilities, despite your chronic pain condition.
Joe Coe 06:13
I think it’s such an important topic. It’s something that we touched on a little bit with a previous guest, Dr. Lindsay Weitzel, who talked about when she has a migraine attack that she tries to distract her brain by watching a movie or even listening to a movie if you couldn’t watch it, to get rid of the in your head dwelling on the pain, which is really hard to do. And exercise is another way that I’m hearing you say that we can do that
06:39
There isn’t really much research on using exercise to treat an acute migraine attack. There’s really just very small case studies. But I’ve had several clients over the past that were there like, “If I feel migraine coming on and I go for a light walk, you know, 20 minutes,” just easy not even an intensity where we create like a physiological demand to improve cardiovascular fitness, but just to be a little bit active, helps to decrease their migraine get it to go away quicker, or to abort it before it really sets in with the head pain phase.
Joe Coe 07:10
Yeah, super interesting, and definitely more research needs to be done. I want to switch gears a little bit. Can you talk about some non pharmacological approaches to migraine management that you discuss with patients?
07:21
Yeah, so there’s a wide array of, you know, non pharmacological interventions that we can do with people, exercise being one of them. Other things you can look into with patients would be like nutraceuticals, using like vitamins and minerals to treat the disorder. And there’s some evidence to show that, you know, things like riboflavin, CoQ1, And magnesium are really important for migraine. Those substrates are kind of used in our metabolic pathways. And we know that with people with migraine that there shows to be mitochondrial dysfunction during and after migraine attacks. So because of this energy deficit, that that might be one of the reasons people have problems with sensory processing. Senesory processing requires a lot of energy from the brain. Other things we can do for non pharmacological treatments would be to really look at the diet outside of the micronutrients. But are they eating enough? Regular enough? Are they consuming enough water often enough? Sometimes they don’t even really have to get to like clinical levels of dehydration, but to be lower on the side for them might be able to trigger an attack. And we can also look at sleep patterns and stress management. And stress management doesn’t always mean that like, somebody is in emotional distress, and we need to address that with a mental health professional. Sometimes stress management is like, “Oh, I have you know, multiple meetings today. I gotta run the kids around. I have you know, this PTA meeting, after school I got so much going on.” That actually creates a higher level of stress. Well, how do we manage that to get you back down and more grounded, so you can feel more in control?
Joe Coe 08:53
I want to really drill down on on some stuff that you’re saying. Because a lot of that has been used against migraine patients, and you’re a super caring man, and are very empathetic, how do you cut through the dismissiveness that, “Oh, if you just drank more water your migraine would go away.” Which actually was told to me in a medical setting when I was in a horrible attack, and I’m like the water’s not might help it’s not going to help now. How do you get through to people that have been harmed by saying just exercise justice, if that’s a small thing, or just drink more water and these things that we know can be helpful?
09:35
When I really talk with my clients about like these, these nonpharmacological treatments, I don’t want them feeling like oh, they’re to blame for their condition. There’s things you can do to help influence the disease and have migraine attacks occur less often. But that doesn’t still mean that you still don’t have migraine disease and that you haven’t built up sensitivity to these deficits where I can be dehydrated and not get a migraine, but you do so we just need to recognize that that’s a symptom for you. And how do we prevent you from getting to a level of dehydration before an attack occurs, because drinking water during the attack isn’t going to help you abort it any faster, then you take any medication that you go to the laying down. Yes, we need to rehydrate. So those symptoms go away, and you know, help you feel better. But it’s not really your fault all the time. I mean, there’s so many different things going on, you can be you know, busy at work, distracting the meeting, you can’t always drink water constantly at times, but it’s about creating a management solution to help you avoid that trigger in itself.
Joe Coe 10:35
And that’s really helpful. And I think that you living with a visible disability, being an amputee, has really helped you create empathy, and a connection with people with invisible disabilities. Can you talk about how that has informed your practice?
10:50
Being with a visible disability, you know, people can look me and know that I have a disability and understand like, oh, I might need help. But on the other side, they might also try to help me when I don’t really need help. For migraine people, or people with migraine, they don’t really have that luxury of saying like, “Oh, clearly this person needs help, or they need some type of accommodation or change in their life to where I can facilitate, know their disease and make life less stressful on them.” So some of the ways I kind of can talk with people that is like I have a physical disability people know when I need help. For you, people might not know when you need help, and you might have to ask for it or set clear boundaries on when you might be having an attack on what is okay for people to do and what is not okay for people to do. Some people are clearly triggered by smells from perfumes. And if you’re working in an office or working with somebody that’s always having a strong perfume around them, and you’re constantly and trigger, it might be appropriate for you to really have that conversation with them. It’s like, “Look, I know you really liked that smell. But for me, it’s really causing my disease to worsen around you. Either we need to modify what we’re doing and how we’re interacting, or can you please stop wearing that for when we’re going to be working together?”
Samuel Kelokates 11:30
Yeah, that’s super helpful. What are some practical physical therapy tips that most people, I know it’s very individualized, could benefit from hearing?
12:10
I think for people with migraines, and it’s a little bit different when you get into tension headache and cervicogenic headache. For migraines, I think a lot of people over stretch their necks. I don’t actually think stretching is necessary for a lot of people that have that neck pain or shoulder pain and they feel that migraine coming on. And they spend a lot of time trying to stretch that neck pain away. But what they’re probably actually doing is actually irritating the tissue there and sensitizing the area even more. And then they’re making it easier to trigger that migraine from a musculoskeletal trigger. What I really find is more effective is low intensity cervical strengthening exercises, enough to not stimulate, you know, intense muscle contraction that might make the migraine or headache worse. But would end up making the muscles stronger and feeling more stable with the neck.
Joe Coe 12:57
Listening to speak, Sam, it’s so important to for our listeners to understand that there are so many different tools in the toolkit, to overuse a metaphor, that we have when living with a chronic disease. And I just it’s so fascinating to look at it from your perspective, which is one that many of us don’t, for many reasons. And I think it’s important that we are open to hearing different approaches to managing what is for many of us a lifelong condition.
13:30
With those kind of strategies in the toolbox you’re saying, there’s so many different types of interventions from manual therapy to exercise both specific to the neck and head to just generalized fitness improving your overall wellness, to the use of non pharmacological treatments like sleep and stress management. All these are tools and the tools we want to use are very unique to each person. I can’t just throw out different treatments that are, “Oh, that’ll work for all migraine people.” That’s not how that really works. I need to you know, really sit down, talk with that person, hear what their story is. So I know how to modify the treatment plan that’s optimized for that individual.
Joe Coe 14:07
How do you work with other health care providers that are managing the medication aspect of migraine disease?
14:15
So one of the ways I work with some, some patients on figuring out how to best manage their condition, medications are very important for preventative and acute treatments of migraines, especially the attacks and trying to reduce them and make sure that they can come back to live in real life within that same day. What I’m working on is helping make sure that those those medications that they’re taking one, they don’t have to take them as often. And they’re more effective because you’re able to get out of those sensitized states much quicker. So by using exercise, improving sleep, hygiene and improving stress management, they’re decreasing their sensitivities to a lot of the sensory stimuli we talked about earlier, that will help their medications work more efficiently. So there’s actually a decent enough studies, mostly in the aerobic category, not so much the strength training literature right now, but with the aerobic programs that people that are in those programs that are taking medications, end up taking less medication than their control subjects in those studies. So that’s really how I view the role of physical therapy or exercise is to augment the pharmalogic side and make that side more powerful.
Joe Coe 15:26
Yeah, that’s, that’s an important message for people to hear. What do you want the world to know about migraine and your work in PT?
15:34
So the one thing I think, you know, people the general population should know is that when people have migraine, they’re not making that up. It’s a real pain disorder. And just because they don’t show it in their face, doesn’t mean that they’re not really suffering behind that wall, this invisible disease. It’s not like some other chronic pain issues where where you can see the injury that is going on, and that those people need to be empathized with. We need to understand that they’re going through something that you can’t help with all the time. For physical like, for a physical therapy standpoint, like the majority of physical therapists don’t understand what migraine is, or cervicogenic headache or even tension headache, they don’t really understand the pathophysiology. And I’m not just like assuming that. Like there was a study that took a survey of like 350 orthopedic physical therapists across the country. And like, I think like 52% were able to, like appropriately diagnose cervicogenic headache. And it was even less for tension headache and even less for migraine. So we get into these professionals that just aren’t properly trained for the most common pain disorder in the world, or one of the most common pain.
Joe Coe 16:40
Can you define those types of headache, because our audience might not know?
16:45
Cervicogenic headache would just be defined as your headache is due to a cervicogenic trigger, where you clearly have neck pain, and that’s clearly leading to the headache attack. That’s gonna be absent of your other migraine symptoms, right. So it’s just neck pain, just headache. But then there’s a lot of overlap between that same symptomology and tension headache. So when I see people with cervicogenic headache, or tension headache, it’s kind of like, the way I treat them is basically the same. I try to identify this musculoskeletal impairment that’s present, and then make the treatment that addresses those impairments while I’m trying to control for pain that’s initiating the cause of the headache. Now with migraine, when they have that neck pain, that neck pain is a referral from the trigeminal nerve. And then it’s kind of, I kind of equate it to like how people have heart attacks and will have jaw pain, or shoulder pain or arm pain with that, that there’s this peripheral pain pattern where there is this over sensitization and stimulation of the trigeminal surgical nucleus, and that is referring pain outwards. And so that’s where you’re having this pain or this change in the brain. But it’s referring pain to the head, and the face and the neck. And that’s where they’re like, oh, I don’t have a place in my head or face that hurts. It’s just generalized, it’s not very specific. When I’m evaluating someone with cervicogenic headache, it’s very easy to touch a specific area and generate that same exact headache pain.
Joe Coe 18:13
It made me think of something you said earlier, which is going to be I think, a lightning rod statement, that we’re over stretching our necks.
18:22
There’s a difference between like actively moving, like, “Oh, it feels so tight, I can’t move it,” and do like active range of motion to kind of restore your ability to move the neck, because that’s more of a perception issue. You feel like you can’t move it, right? So you might be like stuck and can’t move it. And then I go and rotate your neck myself and I can get to full n range of motion. No problem. That’s more due to your proprioception and how you feel that you can move and stabilize your neck. And we can work on that by just actively moving the neck and slowly pushing into those ranges of motion. With somebody with an actual impairment, you won’t be able to move your neck and then when I go to try to move it and see how far you can get, I might be able to get a little bit further but I’m gonna hit a stopping point or point where you’re really in a whole lot of pain because I moved your neck in that direction. That shows me that there’s probably more likely that you have a musculoskeletal impairment that we need to address.
Joe Coe 19:21
Just fascinating. Thank you, Sam, for joining me on Talking Head Pain. I’m sure that our audience will learn a lot from the conversation.
Samuel Kelokates 19:30
Thanks for having me, Joe
Joe Coe 19:31
Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.
Narrator 19:48
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this episode of Talking Head Pain, Joe is joined by Elizabeth Leroux, MD, a headache specialist, former president of the Canadian Headache Society, and founder of Migraine Canada.
Join Joe and Dr. Leroux as they talk about starting migraine associations in Canada, the obstacles providers have when getting patients their treatments, and the important work being done by Migraine Canada.
Advocating In Canada: A Conversation with Dr. Elizabeth Leroux
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Dr. Elizabeth Leroux 00:10
It’s just crazy that after 12 years of training, I’m still asked, you know, to justify my medical recommendations to an insurance company.
Joe Coe 00:19
Bonjour, and welcome to a special Canadian edition of Talking Head Pain. I’m delighted to be here today with Dr. Leroux. She is the past president of the Canadian Headache Society and founder of both Migraine Quebec and Migraine Canada. How are you doing today, Dr. Leroux?
Dr. Elizabeth Leroux 00:33
I’m doing very well. I’m recovering from COVID. So you get a nice, rusty voice.
Joe Coe 00:39
And how are you feeling from that?
Dr. Elizabeth Leroux 00:41
I’m feeling actually very well. I’m very fortunate to have mild symptoms.
Joe Coe 00:46
And you had the vaccine and the booster?
Dr. Elizabeth Leroux 00:48
I did, the whole the whole thing. So it looks like we’re not completely done with this damned virus yet.
Joe Coe 00:55
But it’s good that your case is mild. So we’ll continue to go in that direction. I want to start this by asking you, Dr. Leroux, if you’ve ever had a migraine attack and what was the worst one like if you did?
01:08
So I do have migraine, since I’m in my 20s. I’m very fortunate to have very few at present time. But I can, for me most of my migraine episodes, I can remember them because they actually had repercussions on that day. So I remember one, I had to I was giving a talk about migraine, which was funny. And I had to I could not drive back home that night. I was an hour and a half drive and I had to pick a like take a room in a hotel. I remembered it was funny because I, my in my car I had like a lot of Maxalt samples, and I did not I was not using triptans at the time. I didn’t even treat and I just lay on my bed miserable. And then I slept on it and the next day it was okay. So another one I remember was my birthday party and I could not attend it for like four hours. So my friends said, “Okay, we’re gonna stay there until you’re better,” and I was better after sleeping. Then I started using triptans. And it really changed my life. So now I have my trusted triptans. But I experienced my first vestibular migraine two years ago in Calgary. And that was very scary. I knew what it was because, you know, I’m a headache specialist. But I just experienced a very severe vertigo, things were shaking in front of me, I couldn’t stand, I threw up in my sink. And then it stayed like that for an hour. And I was like, “Is this is this going to stop at some point?” And I just had like two auras for the very first time last year. Which also I knew I knew what they were obviously but it was in the middle of my clinic and I was about to inject a patient with Botox and I wondered you know, the aura is supposed to be 20 minutes, so I should be okay. So I’ve seen, I’ve seen different types of attacks myself and I’m, I’m actually grateful because I can understand what my patients go through without having too many of it so that- there’s no, I tell my patients there’s no need to convince me that migraine exists like I, I have it as well.
Joe Coe 03:09
You talked about vestibular migraine, can you explain what that is? A lot of people in our audience might not know that subset of migraine.
03:16
Yes, vestibular migraine is a work in progress. It’s not the fully scientifically accepted term yet, but it is migraine with symptoms such as dizziness and vertigo and instability. So it’s when the zone of the brain that is taking care of balance and staying stable, is impaired. We don’t know exactly how or why. But that’s a kind of migraine that is under a lot of scrutiny at present time. And it can be extremely disabling, if you can imagine having the migraine and being dizzy, and nauseated and unstable at the same time.
Joe Coe 03:51
Definitely, and thank you for sharing that with us so people can be better educated. I want to know, after reading your bio, what drew you to neurology and migraine in particular, and why did you create and devote so much energy into building migraine foundations and being part of the Canadian Headache Society?
04:13
Yeah, one could wonder. I chose neurology because I was, and I’m still fascinated by, let’s say the humanities of neurology, so language, memory, communication, art, that kind of thing. So for me, the brain was fascinating. So that was an easy choice. But then I thought I would go into dementia research and cognitive sciences because that’s, that’s what drew me there first. But one day I remember it was my first migraine clinic. And I met with people with migraine for the very first time. And I heard the stories and I saw many patients and they all told me how grateful they were to the physician that treated them, how miserable their lives had been, and also how better they were with proper care. And even those who were not doing that much better were so relieved to know that, you know, they we’re not alone in this, that they were not crazy. It was a very new experience for me in neurology. I also saw patients of all ages living with migraine. And so I decided to pursue that path. I will say it’s not an easy path because migraine is stigmatized and stigmatized for patients, but also for doctors who take care of it. Like it’s not a very glamorous specialty, I think things are changing. But when I did my choice, like 12 years ago, even more now, I can tell you, a lot of my attendings tried to discourage me from choosing this specialty. But I’m glad I persisted. And so from that very first feeling of seeing the suffering and wanting to help came the work for the associations I started, because I just realized how many people were suffering. And they had no associations. They were still in the closet if you want, I mean, all suffering alone. And so I said, “Well, you don’t have to be alone.” But who’s going to, you know, how, how is it in Canada, we have Epilepsy Association, and Multiple Sclerosis Association, Parkinson Association, and migraine, which is the most common of it all, and if you put all headache together, it’s a huge number of people, there is no association. So for me, it was like someone has to do it. So let’s, let’s do it. And I’ve, I’ve been very fortunate to work with great teams and meet incredible people along the way. And now both associations are charitable and growing. So I’m very happy to see the progress that we’ve made.
Joe Coe 06:35
We’re happy too, and the world is better that you went in this direction. You’re helping a lot of people. As a provider. Dr. Leroux, what are some of the challenges that you see with patients accessing treatments? And how much time do you spend advocating for your patients?
06:51
I will say that migraine is so common that the vast majority of people are seen in what we call primary care. So that’s like family medicine, not neurology. And I still hear a lot of the stories, I don’t want to hear those stories anymore. I mean, those stories are like I lived for 15 years without proper care, because I didn’t know that was better, because my family doctor didn’t know better. So I think we need to, one of my passion is to educate the health care providers so they can help their patients. So access to care. First, you have to find a doctor who knows about migraine and will take the time to work with you. Then you have to have access to treatments. And that’s treatments that can be medication that you cannot necessarily afford or that are not covered. Or it can be also behavioral therapy, like psychotherapy, or diet or nutrition. I’m a strong proponent of exercise as well. So there’s a lot of, there’s a global approach for migraine that takes a lot of money and takes a lot of support. And not everybody can have access to that. And then in the end, well I advocate in many ways. With Migraine Canada, we are fortunate to be able to interact with Canadian institutions that regulate medications, that’s a very important part of our work. On a more of a bread and butter, what is my day like thing, I can tell you I fill hours and hours of forms for our dear insurance companies. And if I knew, you know, when when you go to medicine, you never think about that. But then you wake up on Saturday morning with a pile of forms to fill. And this is, you know, this is part of our work and but it’s just crazy that after 12 years of training, I’m still asked, you know, to justify my medical recommendations to an insurance company. So I wish that that coverage gets easier. So more patients can actually have access. Because I fill the forms, but a lot of doctors will just not prescribe because they don’t want to spend the time filling the forms, which I can understand. But, but I hope that will evolve over time with less forms to fill. So we can, I can see more patients and help more of them.
Joe Coe 08:58
That’s a similar problem that we have here. I know personally, for a treatment that I was getting. My neurologist didn’t check the right box on a form. And they kept kicking it back. And I finally said, “Well, what do you need from this man to do like he’s busy? Tell me what you need him to do. And I’ll talk to his office.” And he was like, “I can’t believe that they kept kicking it back,” and he check the right box and then I got the treatment that I needed. But it delayed treatment by two to three months. Because you’re back and forth with the insurance companies office.
09:35
This is a circus. I mean, it’s a circus where there’s a doctor but not not only our time, it’s the time of our admin staff as well you know. If you can believe we’re still using a lot of faxes, so there’s like printing, faxing like filling this, filling that. The companies that produce the treatments have what we call patient support programs and they do help us a lot so I think I want to thank them. I mean it’s they’re making money of the drugs of course, but I think that’s a very useful service they are providing. And at the end of the day, the I’ve seen so many ridiculous questions, the worst of the worst, I think is, “Oh your patient is doing so well now that the treatment should be stopped.” And I’m like, “Would you ever see say that to someone with epilepsy, or hypertension or diabetes.” Like all the parameters are perfect, let’s just stop everything. But we have to fight that with education and information and letters, I write a lot of letters with references, scientific references, and I say, “Okay, here’s the argument. And as the president of the Canadian Headache Society,” I’ve done this with more power, because then we have an endorsed letter, for example, to combine Botox and a CGRP antibody. So we created the four page letter fully referenced, and we share it so that that brings more weight, I think, to the table than you know, a solo clinician having to write something. It’s already there for, for anybody to use. So you have to fight that kind of thing with proper information and try to organize and share resources as much as possible.
Joe Coe 11:07
Definitely, and two things you brought up really resonated with me. And I know with the migraine community, one, when we are on stable treatment, we’re scared that our insurance company is going to take us off of it. We hear about that happening all the time. And it’s as absurd as what you said, “You’re doing well. So stop one or more of the treatments that you’re on.” It really doesn’t make sense. And I’m glad that you are raising awareness on that issue. What would you be able to do, I know what I would be able to do as a patient without having to advocate for myself to access treatments. How would you be able to practice more medicine, if you didn’t have to do all this bureaucratic paperwork to get patients the medication that you as a, as an expert in this field are already prescribing?
11:51
I think I could probably see a bit more patients. But I think the big difference is for the clinicians, for whom the difference is I’m prescribing, or I’m not going through the trouble. And the insurance companies are probably very aware of this. And they know that if they put barriers, well, you know, some doctors might say, “I don’t have the time to do this.” And I think that’s where really the opportunity to treat more people is lost, I’ll give you an example. CGRP antibodies are, you know, can help people and they are quite well tolerated. So in theory, they could be prescribed in primary care. But the primary care doctors are so busy, that they will refer to neurology. And then when you refer to neurology, you have to wait in Canada, in some places more than a year, to be seen by a neurologist. And then you have to hope that you meet a neurologist who is versed into prescribing CGRP antibodies. I think it’s getting more and more of us, but not everybody. And if the neurologist is not versed into them, then they will refer to the headache specialist, which might be another. So it makes no sense to me to have to wait that long. You know, if you have multiple sclerosis, or if you have diabetes, I mean, you’re not going to wait three years to get proper care. So I understand headache does not kill anybody. But at some point, now that we have treatments that really can change lives, I hope that those delays can be shortened. And if there were less forms or easier to fill forms, that would allow more doctor to prescribe. And so more people to be treated.
Joe Coe 13:30
That’s my hope and our hope at the Global Healthy Living Foundation as well. I want to switch gears a little bit and talk about your work with Migraine Canada, an organization that we are very much aligned with. What are you most excited about that’s coming out of Migraine Canada? And what should our audience know about this amazing organization in Canada?
13:49
Well, I’m glad that we are aligned. And I’m actually very glad to do this podcast with you. So, thank you. Well, we want to allow people to live better lives. So to access knowledge and care and to be empowered. And I think that’s in every chronic disease, migraine is a chronic disease, it’s a neurological disease, you have to have all the information you need to make your own decisions because migraine is so diverse, that there is no one size fits all. So one of our big mojo is no one size fits all. Everybody has to find their own path with the help and guidance of providers or it can be really anybody you have to find your path. So I’m super excited to provide websites and resources and webinars and podcasts so people can learn. We also work very hard on a list of headache clinics across Canada. This is something we really get a lot. You know, where can I see a headache specialist in my area, that’s a demand that we see a lot. And then we also did our last or first “Move for Migraine Canada” campaign this year. So in every June it will happen again where people commit to do any way of moving or physical activity to raise money, so it was our first time. And finally, as I mentioned, we as a patient association, we can interact with all the authorities of the Canadian government that manage access to care and coverage. So for example, Canada for PCPA, and we work with those. So we can explain what migraine is and how important it is to have public coverage and coverage for medications. So, employers also programs are in our radar. So there’s, there’s so much we’re doing. And there’s so many people who are, are coming to us with ideas and a will to help. So I’m all excited, you can see there’s no end to, to what I would I would tell but just start by coming to our website or social media. And if you have ideas, or if you need anything, just send us a note and we’ll try to get to it.
Joe Coe 15:53
That’s wonderful. And for those listening you could find Migraine Canada at migrainecanada.org. And the the organization that Dr. Leroux mentioned, CADATH is the Canadian Agency for Drugs and Technologies and Health. Basically, it’s a body that helps regulate and approve medicines, as Dr. Leroux said. Something that we’re learning a lot about the Canadian Landscape as we’re working with groups such as yours to help amplify the voice of patients in this process. As a global organization, we’d like to hear from others around the world. So from your perspective, what would you want people in the world to know about migraine and related diseases?
16:38
Migraine is more than a headache, and it’s a neurological disease. I think those sentences are hammered down by many of us. And I think they are appropriate. I always tell also that it is diverse. And I think that’s so important. Because as a patient you cannot take for granted that someone’s story will be your story. That’s that’s extremely important. And also for providers, you know that they don’t expect to have quick tricks or quick fixes for patients. And it can be extremely disabling. Something, sometimes people see migraine as a benign headache or something that has no bearing on life. But as we know, some people’s lives are destroyed by migraine. So it’s a full spectrum of disability. But my key message to anybody’s listening here is that it can be controlled, it can be improved, and keep trying and seek relief. So there’s no there’s no point just losing hope and saying, “Okay, that’s the end.” So we can do something about migraine. So I think that it’s enough now of saying it doesn’t exist, I think we’re past that. But now we need to really bring the full gamut, the full list of treatments to people. So I would say frequent, diverse, disabling and can be controlled.
Joe Coe 17:49
I love that. And that last part really resonates with me because I have lived with migraine since my teens. And I thought for a very long time that I was well managed. And when I really took a step back and thought about the frequency of headache days, as opposed to migraine attacks, and the way that that was interfering in my life, in little and not so little ways, but mostly little ways. I was still working. I wasn’t pulling back on that. But it was impacting me in other ways. I wasn’t as active as I could be. I wasn’t living the life that I really had envisioned for myself, but I didn’t know that until I started to do advocacy work and work with the Global Healthy Living Foundation and really look at, is this okay for me? And why am I not trying these newer medications, when I’ve been on all these other medications for you know, two decades, and it’s something that we’re passionate about educating that it’s not okay to be just okay. That we can do better with all this innovation that’s out there. And with providers such as yourself, and organizations like Migraine Canada, and Global Healthy Living Foundation, groups that are pushing to increase access. You don’t have to settle. So I really, really appreciate that that was one of the things that you highlighted, that the world should know.
19:07
Yeah, that really, that really resonates. If I may add, I hear the story a lot. Because migraine often start when you’re young, and sometimes your parents lived with it, or one parent lived with it. So you learn to live with it. And then you you adapt and because there’s not a lot of support or recognition from the community, well, you understand that it’s there’s no point you know, like asking for help or talking about it. So I’ve seen a lot of people just managing the best they could. But now that we have like those treatments that work, some people say, “Oh my god, I had forgotten what it was, you know, not to have to think, because then I can do a bicycle ride. I can go to the restaurant. I can study like I want to study. I want to play with my kids.” So I think there’s a lot of underestimation of the migraine burden, what we call the migraine burden, and even what we call the interectile burden, which is in between attacks, all those decisions, all this mental load that people have to constantly watch, constantly monitor, constantly avoid. So I agree, I’ve seen quite a bit of patients now that thought they were okay or not that bad because you know, they were better than before. And when you do the headache diary and you look at all the headache days, even the milder ones or the ones that you think are not migraine, but they are, then you have kind of an epiphany. And they say, “Well, why don’t we try something?” And if you respond, well you know, that people come back, and they have those smiles on their faces, and that’s priceless. Did you just did- they tell, they tell you that you just gave back their life. And that’s exactly why I went to medicine. So yeah, I mean, it’s, that’s something that changed in my practice over the last few years that I realized that myself, even being an advocate, even being a specialist, even being super aware, I was under estimating my patients burden.
Joe Coe 21:06
Amazing, I get shocked to this day. And I know this is reality that people don’t have never experienced a migraine let alone a headache. Because I lived with a headache every day. And I just thought everyone had like it was a normal experience. And there are now I don’t live with a headache every day. And this past weekend, I was able to and I posted this on my Twitter, I woke up with a bad attack, which really hasn’t happened in a while. And in the past, that bad attack would mean I would be out for a day or two. And I took medication, and was able to go for a walk and jog about four hours later. And after that, I was like, wow, this is amazing. And then I really thought about it. And I was like this is amazing, but I’m also angry, because there are so many people that don’t have access to that medication for many, many reasons. And they wouldn’t be able to go on that walk and experience nature and get that stress relief, and do all the things that I was able to do that day on my weekend and get my weekend back. Because we are involved in broken systems, healthcare systems in Canada, in America, pretty much everywhere. We’re not working toward getting people their life back. And your work is so important in doing that. And we really appreciate that you’re a friend and that your organizations are doing this important work. And we look forward to continuing and strengthening the relationship and building and growing together.
22:37
Well, I’m glad to hear it. And I wish that everybody can can treat their migraine attacks just like you described. Because that’s what you describe is also a benefit on intensity and response to acute therapy that we see with appropriate prevention. So absolutely. You know, Migraine Canada is there. We’re really young. I mean, we’re still growing and we have lots to learn. But I think we’re on the right path. And I’m excited for what’s going to happen over the next few years.
Joe Coe 23:06
Amazing. Well thank you so much for your time and energy and we really appreciate it. And we hope that you continue to feel better while battling COVID.
Dr. Elizabeth Leroux 23:17
I will and then I’ll be back in the clinic to treat my patients with happiness.
Joe Coe 23:22
Thank you so much for listening to this episode of Talking Head Pain, the podcast confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.
Narrator 23:38
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
On this episode of Talking Head Pain, Joe is joined by Dr. Nicole Rosendale, a neurologist and principal researcher of a study called Migraine, Migraine Disability, Trauma and Discrimination in Sexual and Gender Minority Individuals. Joe and Dr. Rosendale discuss the link between trauma and migraine, research as a form of activism, and the future of LGBTQ+ migraine research.
Migraine in the LGBTQ+ Community: A Conversation with Dr. Nicole Rosendale
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Dr. Nicole Rosendale 00:10
There’s been some studies looking at how childhood experiences of trauma affect migraine later in life. But that hasn’t really been looked at within LGBTQ individuals. And so this was a step towards understanding that connection a little bit more clearly.
Joe Coe 00:25
Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m here today with Dr. Rosendale, who is the principal investigator of a study called Migraine, Migraine Disability, Trauma and Discrimination in Sexual and Gender Minority Individuals. I know that’s a mouthful, but we’ll break it down so you understand why it is important to you. It’s important to note that this research was conducted through the Pride Study, which is a large scale long term national health study of people who identify as lesbian, gay, bisexual, transgender, queer, or other sexual or gender minority. So Dr. Rosendale, thank you so much for being on Talking Head Pain. I’m so looking forward to this discussion.
01:15
Thank you for having me. I’m delighted to be here.
Joe Coe 01:18
I don’t want to bury the lead. What do you think is the most important thing that people should know from this research that you just conducted?
01:25
So the great thing about this study is it’s really one of the first investigations looking exclusively at migraine and the experiences of LGBTQ+ individuals who have migraine headache. And so we’ve found that not surprisingly, migraine is common as it is in in other individuals as well. And we’ve identified some really interesting differences in kind of care experiences and potential barriers to accessing care for migraine headache, in the community that I think are good for all of us to know about.
Joe Coe 01:59
I so agree when I saw this study, and it was actually passed along to me from my Pride Center that knows that I do this podcast, that I live with migraine, that I’m an activist in our community and said, “You should know this.” And I said, we might have a connection to this study network. And here we are today, it’s really important issue. I want to know what you think migraine patients and/or the LGBT community should know about this research in particular? How does it impact our lives?
02:31
Well, I think there’s a couple of aspects of this research that really highlighted and kind of emphasized things that we may have peripherally known, but now we kind of know it with with more insecurity or or more, we know it a little bit more definitively, if you will. One of the things is that social stressors and experiences of discrimination as folks navigate their life affect migraine severity, and disability and frequency. And so that is something that has been looked at in other communities, particularly predominantly cisgender women. There’s been some studies looking at how childhood experiences of trauma affect migraine later in life. But that hasn’t really been looked at within LGBTQ individuals. And so this was a step towards understanding that connection a little bit more clearly. The other piece of this that I think is really important is that an aspect of this study that we looked at was really access to care and kind of what kind of care folks with migraine were receiving. And one thing that arose out of that was there are certain barriers that people access. And there are, you know, not everyone who had migraine headache who was interested in seeing a neurologist for their headache had access to that, right. And when we looked at specifically what medications people were using for migraine, there were some interesting trends that we saw. And a lot of people using kind of over the counter medications or using more of the natural remedies like riboflavin and magnesium rather than using more pharmaceutical treatments. And so I think that that’s just a piece for folks who are experiencing migraine to really understand, whether you’re LGBTQ or not, is really how to advocate for yourself and how to advocate and ensure that you’re getting access to specialist care if that’s what you would like and if that’s what you need. And also that within that there are opportunities for access to newer medications or potentially more efficacious medications to help reduce the impact that migraine has on day to day life because migraine is quite disabling. And it can be a big component of how people live and change how people function.
Joe Coe 04:44
And did you see a difference between, or did you even get to look at the difference between episodic and chronic migraine patients?
04:51
So interestingly, when we looked at the distinction between episodic and chronic and really that breakdown is you know, 15 Headache days per month i the barrier or the kind of a definition of chronic migraine, we didn’t actually see a significant difference between folks who were experiencing episodic versus chronic migraine. When we looked again, at that kind of intersection between experiences of trauma and discrimination, we didn’t break down the sample into or kind of the participants into folks who are experiencing episodic migraine versus chronic migraine. We really just kind of looked at all comers with migraine. And part of that was just statistically in terms of the grouping and making sure that we had enough people in the different groups that we could kind of look at overall trends. I certainly think that this is just a start to the research. There’s more that needs to be done in this question, and in this community. So hopefully, this will just start generating more and more questions for folks to research later.
Joe Coe 05:48
It’s so exciting to me. I’ve been asking for stuff like this for about six or seven years. I go to medical conferences and am like, “Where are the LGBTQ neurologists and practitioners? And where is this happening?” And when I saw this, my eyes lit up, and I had to speak to you. I’m curious about how you and your fellow researchers define trauma, because that’s kind of a very loaded word. And it means something different to so many different people. So it might be helpful to understand how you define trauma.
06:26
Absolutely. So for this particular study, it was a very broad definition. And we somewhat arbitrarily I kind of acknowledged, dichotomize between what we labeled as trauma in the study itself, which was experiences of essentially physical violence, sexual assault, experiences similar to that. And we looked also at experiences of discrimination. So unequal treatment in accessing services, harassment in public, barriers to accessing education, employment, etc. And I will fully acknowledge that this is, again, just the start to this conversation. I think there’s more work definitely to be done and diving into this a little bit more. And some of were this broad definition and kind of how inclusive we were, in terms of what we looked at came from, is really what what had been used in the Pride Study, and what’s continuing to be used kind of within the cohort, that’s also undergoing refinement. So we actually collected our data in 2018 for this study that just got published. And so the since that time, there has been kind of other other iterations of this definition and how this is being discussed and looked at within the Pride Study. So as with everything in medicine, there is kind of ongoing understanding and more nuancing. But I will say that, I think, to some extent, there was a benefit in keeping it broad, because there is a difference in experience. But that doesn’t necessarily mean that just because folks don’t experience a more violent type of trauma, that that’s not affecting their health, and that that’s not affecting them, their migraine and vice versa. So I do actually think that it was useful in some way, particularly because this is kind of the first step into understanding this question and this interaction between these experiences in migraine, that really keeping it brought allowed us to kind of open up the field for other questions and other researchers, hopefully to kind of step into this space. And really drill down a little bit more on what’s driving that how we can help and you know, other kind of mechanistic connections between these experiences and then migraine disability.
Joe Coe 08:37
I totally agree. And I am not a researcher. So I could say this as a non researcher, as a member of the community, and as a migraine patient. Trauma and how we define it macro micro aggressions, however want to look at it, we really don’t know how it really impacts us on a deep level. And I think studies like this are so important, because it brings it into the public discourse. It brings this this idea that, you know, adverse childhood events, which we know are studied in many different ways in many different areas, impact our community and I always had a personal theory that it increased my migraine intensity and sped up my my predisposition to having migraine. But of course, I’m an n of one and there hasn’t been much formalized studies around that. So seeing this is so exciting. And it leads me to my next question, that it’s so important that leaders in the field such as yourself, push this type of research and engage in it. Why did you become a neurologist and why is this your passion?
09:46
Such a good question. So for me, I was amazed by neurology as a field and then also just so grateful for the experiences that I had in my training and working with my patients with neurologic illnesses that that it just drew me in. So I was actually a literature major in undergrad, and so I feel like I’ve always kind of had this sense of questioning who we are and how society shapes us and influences us. And so within that neurology just just drew me in, right. It’s the study of such a large component of what makes us human, and what makes us who we are as people. So, so, so interesting to me. And then I think the this research in particular, you know, as a member of the community myself, I felt like it was very important to infuse activism and social justice and health equity for the community into my work. When I entered the field, there wasn’t a lot of kind of understanding of why it was important in neurology, and there wasn’t a lot of neurologists kind of working in this space. And so really, I’ve had the privilege to start blazing that trail of kind of arguing for why this is important, and why this community needs to be on the radar for neurologists. And as part of that, I think, doing research is really important so that we can add some of this objective data, right, some of the numbers that might convince people who may not see that connection, and helping them to make that connection in their clinical practice. So I think for me, the the research piece of things is really important, again, from that advocacy standpoint, to give us the information of what our patients are experiencing, what the needs of the community are, so that we can really be thoughtful and scientific as we go forward in in how to improve neurologic health for LGBTQ individuals.
Joe Coe 11:37
Would it be fair to say that patient reported outcome research, like this, is important part of activism in both the chronic disease community and the LGBTQ plus community?
11:52
I absolutely think that’s, that’s very reasonable to say. You know, many times within our work as clinicians, our goal is to help the person live as healthy of a life as they can. And one of the really important pieces of that, particularly within neurology, is really looking at function. How does what the person is experiencing, how does that affect their day to day function, their ability to work, their relationships, their interactions. And so we’re not going to get that from different types of research, other than kind of having the patient reported outcomes, right. Like, that’s a very important piece of what needs to be focused on and kind of reasonable outcome to look at. And then also, I think, within the LGBTQ community, you know, it gives folks a voice in what is important to them, how this is affecting their life. And that’s often not been something that the LGBTQ community has been empowered to do or had the opportunity to do within the healthcare system. That is certainly changing. And that’s fantastic that it’s changing. And so I’m really honored to be part of that movement to really focus on what the needs of the community are, and then tailoring how we can provide care to try to meet those needs.
Joe Coe 13:05
Amazing. And I so agree and commend that work. And it’s super important. So we touched a lot on how this impacts patients and what it means for patients, both that are LGBTQ and have migraine and obviously, the intersection of both of those identities. How can this research help your peers, your other health care providers and/or researchers better address health disparities?
13:31
Such an important question, I think one of the big pieces of that is really just highlighting that the LGBTQ community is a community in need of further research and is in need of, you know, attention within this space, but that there are experiences that may be different from other communities that folks are caring for. And so just to practice, kind of open minded inclusive questions, really kind of asking about someone’s life experience and what what they have experienced, what they’re currently experiencing, and understanding how that interplays with their migraine, I think is very important. The other piece that I think is is important for my fellow neurologists, is really just thinking about the importance of mental health, which I think many folks who are caring for people with migraine also understand on a larger context, but this just helps to emphasize that connection. It’s definitely something that came through powerfully in this study as being an important component of migraine related disability. And I think as challenging as it can sometimes be to connect folks to mental health services, it is very important. And so I think that that’s another piece of this study that that came through.
Joe Coe 14:45
Definitely and there’s so much to be done on mental health and really, particularly with the LGBT community, getting people that aren’t going to be damaging when you when you do go to a clinician and that clinician patient relationship and match is really hard and is an art. It leads me to one of my last questions. What’s next? What other questions arose from this research? What are you thinking about after doing it?
15:15
Such a good question, and there are so many, so one of the directions to go. I think one of the pieces that really deserves a bit more of attention in and of itself is really this question of access to care and quality of care within migraine treatment for LGBTQ individuals. That was a piece that we had included in this study. But unfortunately, we couldn’t dive as deeply into it just because of the nature of the questionnaire was already quite long. And, you know, the more questions we asked, the longer someone would would need to take to take studies. And we wanted to be mindful of that. So I think that there are a number of questions in terms of that access to care piece that really deserves its own study and its own kind of separate attention, whether that is through more qualitative methods. So kind of interviewing folks who are part of the community and have migraine, about what their care experiences are like, any barriers or facilitators of care, because I think that those are equally important to identify. Or whether it’s more kind of mixed methods and looking at kind of a combination of more of those qualitative experiences, and you know, those kinds of responses in addition to more validated scales that can be compared to other groups and other communities. So that I think is a an important piece. And then, as we talked about earlier, in the, in the interview, really driving down on this, the question of trauma and discrimination. One of the kind of questions that we played with a little bit in this study was really thinking about more of this idea of cumulative effect of these experiences over someone’s life. We weren’t able to address that specifically in our study, it just wasn’t designed for this way or to answer that question, but that I think, is really intriguing to me. And again, kind of harking back to the research that’s already been done in other communities, thinking about adverse childhood experiences, thinking about, you know, how our early life or even our prior experiences, or experiencing discrimination over a longer period of time, how that manifests in the body, and in particular, migraine, I think, is a really interesting question. And so there was a signal towards that being something that would be important to look at in our study, we actually, as a, what we call it, sensitivity analysis. So just kind of exploring a question, if you will, we did look at kind of the number of different experiences that someone reported, so how many different types of trauma and discrimination they reported and looked at that association with migraine disability, and there did seem to be a signal that the more number or the higher the number, the higher the association with or that there was in association with migraine disability. And so I think that that’s kind of an intriguing direction going forward is looking at that more cumulative effect, and seeing how that actually plays out in LGBTQ individuals with migraine.
Joe Coe 18:14
Now, I’m people can’t see, but I actually got chills listening to you say that, because it’s such for those of us that have lived have this lived experience, it’s so validating, to hear that there is a connection, that it’s not in our head, and that there are folks like you that are pushing the boundary here in really smart ways to advance health and wellness. I so appreciate your work, we at GHLF appreciate your work, and hope to support it and amplify it in the ways that we can.
Dr. Nicole Rosendale 18:49
Absolutely thank you so much.
Joe Coe 18:51
Is there anything that I didn’t ask that you wanted me to ask?
18:53
You know, I think we we’ve talked a lot about some of the most important pieces of of though the work and kind of directions forward. I think the other aspect of a kind of another direction forward that would be really intriguing to is, again, kind of thinking of this intersectional approach, right? You were just mentioning how there’s a lot of different silos of this research happening. And I think the next frontier is really trying to understand how an individual comes to the healthcare system or comes into and kind of lives their life, holding all of the various identities that they have, right? So not only just focusing on sexual orientation, gender identity, gender expression, but also how their race, their socioeconomic status, their you know, access to housing or not and how all of those kind of piece together I think is going to be another vanguard of of research that hopefully we can get to very shortly.
Joe Coe 19:52
This was lovely. I really appreciate your time. Great interview. We got a lot done and covered and I think that our community is better for it.
Dr. Nicole Rosendale 20:01
Thank you so much for the opportunity.
Joe Coe 20:04
Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe and I will see you next time.
Narrator 20:20
Be inspired, supported, and empowered. This is the Flobal Healthy Living Foundation Podcast Network.
This week on Talking Head Pain, Joe is joined by Danielle Fujii, an environmental designer, migraine patient, and creator of Zden, a sleep tent designed to help people with migraine get a better night’s sleep.
Join Joe and Danielle as they talk about the kinds of environments that can trigger migraines, vacations ruined by migraine, and how Danielle came up with the idea for Zden.
Finding Light in the Darkness: A Conversation with Danielle Fujii
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:10
Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. Navigating life with migraine can be tough. There are so many elements of our lives that are simply out of our control; from the stressors in our daily life to the weather forecasts in a given day, even to the rooms we’re in. Today’s guest on Talking Head Pain focuses on the space that we are able to take control of. Danielle Fujii is a migraine patient, environmental designer, and creator of ZDen, a sleep tent specifically designed for people with migraine to help get a better night’s sleep. Danielle, how are you today?
Danielle Fujii 00:51
I’m doing great. Thank you.
Joe Coe 00:53
And how are you feeling?
Danielle Fujii 00:54
Today is a good day. I’m feeling great, actually. It’s not too hot. It’s not too bright out. So it’s a good day. How about yourself?
Joe Coe 01:02
I’m good. I’m living the dream, as they say.
Danielle Fujii 01:06
Nice.
Joe Coe 01:07
So let’s jump right into my first question. Can you describe your worst migraine attack?
Danielle Fujii 01:12
I think my worst migraine experience, although at the time, I did not know that it was a migraine because I hadn’t been officially diagnosed was when we were on vacation in Hawaii. And I didn’t realize at the time though, that light and nausea and vomiting, unfortunately, are my auras. And I thought that I had eaten something bad in Hawaii. But in reality it was it’s extremely bright in Hawaii. It’s gorgeous. But it’s bright outside. And so I was while everybody else was out, I was sick probably for about three days in the room with the blackout curtains that they did have at the hotel that wouldn’t close in the middle. So there was still light in the room. But I was I just curled up in a ball and curled up in the bathroom worshipping the Porcelain God for three days, until I finally said, “I think I have to go see a doctor on the on the island.” And they gave me a pain and an anti-nausea injection. And I walked out feeling like an a new person. I mean, I felt so much better. And it was at the time, like I said, I didn’t even know that it was a migraine, but probably about a year not even a year later, when I was officially diagnosed and every time since I’ve had to go in to the emergency room or to urgent care, it’s always the same thing that I need. It’s an anti-nausea and pain medication. So I would say it was the worst only because I was out to have a wonderful time with my family. And it was ruined because of a migraine.
Joe Coe 02:52
Thank you for sharing that experience with us. It’s so important for people to know that we can plan these dream vacations and trips and a migraine attack can really mess it all up. And it’s not our choice. I really am intrigued by your background as an environmental designer and a person living with migraine. Can you share with our audience what environmental design is and how are you have used that expertise and information to help people that live with migraine related disorders?
Danielle Fujii 03:26
I would say that environmental design is designing and creating the space that surrounds all of us. Actually, when I went to school back in the late 80s, environmental design was all encompassing whether it was architecture, visual merchandising, so how stores fronts and interiors of stores are set up, interior design. It was even fashion, it was kind of a broad mix of everything. And so I’ve kind of taken the environmental design side and use that to be a design consultant now where I do a lot of graphics. So everything that you see that’s around your environment, such as billboards, PowerPoint presentations, ads in newspapers, logos, etc. Also designing interiors, so interiors, more along the lines of how the space is in which you live. So the colors, the windows locations, the skylights, how much light that you like to have, and I’ve kind of morphed that into learning more about the environment I guess that I’m in personally for when I started getting migraines and being a lot more conscious of the way the light comes into the room, the way that it might reflect off the neighbor’s wall that’s next to you. Or making sure that skylights have integrated, built in shade so that you can close them so you can have as much light as you want when you’re having an amazing, great day, and you’re not having a light sensitivity event. But you can also close those so that you can still be able to enjoy and be able to tolerate the day without feeling sick or triggering a major migraine. And when I say major, I mean one where you’re going to have to feel like you’re gonna crawl into a hole and spend the rest of the day doing absolutely nothing but being in the complete dark.
Joe Coe 05:25
I thought it was so interesting when we spoke before this interview, about how environmental design can be used to help migraine patients. We often hear about environmental triggers and all the ways in which stimulation can impact us when we live with migraine, and there are things that we can control and things that we can’t control. And it sounds like environmental design is something that we can control. So it’s really interesting to bridge those worlds. I would love to know what your biggest design, environmental design faux pas is or what what greats that you if you see in the world from an environmental design perspective?
Danielle Fujii 06:05
Near us right now there’s a new mall was- I shouldn’t say a new mall was built. A mall was completely redone, it’s a Westfield Valley Fair Mall. And what they did is they took out all of the overhead walkways, it’s an interior mall, it’s an inside mall, and they put in all windows, and skylights, which are gorgeous, which are amazing looking. But unfortunately, when you walk through, and if you’re, you feel like you have to have sunglasses on when you’re on the inside of the mall, which I don’t like. Obviously, if I’m feeling fine it for me, if it’s a it’s a it’s a beautiful blue sky day, no problem. If it’s a hazy day, that’s a big problem, because there’s so much white and glare. And when you enter into some of these malls, and you see that, it’s it’s almost overwhelming. And I know that it’s you know, it’s not just going to affect people who have migraines, it’s also going to affect people who even just maybe just have like a regular headache. If you have ADHD, if you have a brain injury. Or if you have epilepsy, there’s these certain things that where there’s too much light is not a good thing. And in these malls, there’s nothing they can ever do about it, it’s not like you can cover these gorgeous skylights and make it any darker. And I’m not saying that, of course, it’s beautiful. It’s absolutely gorgeous. But it’s different than before when it was an enclosed environment and you had artificial lighting. And I know that artificial lighting is also an issue for some people, especially the new LED lights. If you, LED lights, although you can’t see it with your naked eye, the Refresh is different than like an incandescent bulb. And I mean, obviously, we know that fluorescents are also bad because those flicker. But LED lights, if you were to take your cell phone and to look at an LED light and do a slow mo, a slow motion recording of an LED light, and then you replayed it, you would see that it actually flickers almost, you know, almost like a like a an old movie where it’s flickering. And you could actually see that and I think that that is a reason why there’s people who have or in the migraine community who complain about LED lights, because they seem to be more triggering. And I don’t know if that has anything to do with our migraines the ones that I get because we did switch during you know, it was environmentally friendly. We switched out all of our lights to be LED lights when they first came out probably about, I want to say maybe eight to 10 years ago, we switched them all out. And around that time is when I was officially diagnosed with having migraines. Whether or not there really is a correlation or it’s age related or hormone related, who really knows. But I do know that those are some of the things like in environmentally that just aren’t great.
Joe Coe 09:09
Oh, I love that that was so important for our listeners to hear that things that are seemingly beautiful and well intended, like these gorgeous windows and this revamped indoor space that’s beautiful to the naked eye, can impact people with invisible diseases that we wouldn’t necessarily know unless we live with it. It really speaks to how we have to be intentional when we’re creating spaces in the world that are accessible and accommodating to people with multiple and various different types of abilities and disabilities etc. So it really is a beautiful example because it from how you describe it Danielle, a really stunning place that can really be impactful in a negative way for folks that like us that live with migraine. So I am really excited to talk about you leveraging these tactics and techniques and expertise. You develop this product called ZDen, can you talk to us about what ZDen is and why you created it?
Danielle Fujii 10:22
Okay, let’s I’ll start with the why I created it first. So I have really bad migraines, as you know. And my aura, so what triggers my migraines are light. So if it’s very, very bright and glaring, and it’s, I should say that that’s not on an everyday basis. So it has to be if I’m not feeling maybe my best, then a migraine can be triggered by light. So it can be triggered while I’m driving. And the feeling that I get is an overwhelming sense of car sickness, that’s the best way I could describe it. Like, it’s instantaneous, like I just stepped off the teacup ride at the amusement park where I just feel completely nauseous immediately. When I’m at home, I have blackout roll down shades. And I also have shutters. But light can still show through the cracks and the seams of both of those including blackout curtains, which I don’t have. But I also know that that’s the case. So when I was having a really bad migraine, it felt like the tiny little bits of light that were coming through the curtains were like a laser being shined in my eyes. So think of going to the eye doctor, and they’re doing an eye exam, and they want to look into your eye and they shine the little beam or the I’m not exactly sure what type of light it is, but they shine it into your eye. And you can really feel it like it doesn’t hurt. But it’s definitely sensitive, you could feel it, it’s very sensitive to your eyes. That’s what it feels like accompanied by nausea and pain that feels like your head is being squeezed into a vise. If I could, if that’s the best way to describe it. When I was having a particularly bad episode, the extra light in the room, as small as it was the light on the fan, the light on my phone charging the light on the alarm system, all of those lights were really bothersome. So my husband and son came in and they hung up black plastic around the room and, not to sound inconsiderate, but while they were taking the time to hang up the black plastic, because my vision was affected, and my head was hurting, my ears and my the audio sound was extra sensitive. So even them just setting that up was it felt like it was making my migraine worse. But when they got it all set up, and it was very, very dark, a tiny bit of light here and there, but so subtle. It was like it was suddenly this perfect environment. And I laid there and as I was finally being able to fall asleep because it was dark enough, and I felt like I could just relax, I came up with the idea for ZDen. And that is was to be able to create a space that was completely dark, pitch dark. But that you could set up on a whim and not have to say like, “Hey, can you come up and hang in this plastic? Or can we come in and put electrical tape on all the little lights in the room?” Things that were inside that couldn’t be changed. Originally I thought like, “Oh, can I create this box that you could sleep in,” but I didn’t want to- a box obviously if you put your whole body in, it’s not something you can just pack up and then put away and have your room looking as gorgeous as it was before. And then also, it’s not something that I felt that you could set up instantaneously as you’re feeling horrible, and you just want to lay down and relax. So ZDen is a it’s portable, it’s pop up just like you know, there’s beach tents that are like this. There’s camping tents that are like this, but the main difference is is that it’s completely black out. It blocks out up to 99% of light. The differentiator I guess from black out curtains is that it blocks light within your sleep space without having to have the light bleeds from your curtains and but it also blocks outside light. So if you didn’t have blackout curtains and you had a skylight in your room or you lived in a gorgeous loft, and you had no curtains, no shades whatsoever, and you didn’t know you were gonna get migraines, but now you have migraines and it’s not like you’re gonna say, “Well, I’m going to move. I can’t there’s no window coverings I can put on my beautiful loft windows.” This is kind of an alternative for that where you can pop it open. You can crawl inside it’s your upper body and your head and you can close the curtains and you can kind of have that quiet sleep space. It’s not soundproof, but it kind of gives you this kind of it, for myself personally like, and you’re crawling into a space where it’s peaceful, and it’s private, and you can just finally relax. And in conjunction with your migraine medication or your regular regiment, you can go to sleep, so that you can recover.
Joe Coe 15:26
What I loved when I was looking at your website and reading about the product was that it felt like it was like a little mini camping experience in your bed. It just had the same feel that I could imagine people that like weighted blankets could feel like they’re secure, and in a good space. And I just thought it was so interesting and, and cool that you took this pain and this issue that you are experiencing, and you said, You know what, I’m going to do something about it. And I’m going to use the what I have, in my head, the skills that I have to try to make my life better and ultimately other people’s lives better. And I think that we all can find ways that we could do that. And you used environmental design, I use my voice in a podcast. So it’s, um, all different ways that as advocates we can, you know, make the world better. So I love your story. And just that you’re using your talents to try to help folks.
Danielle Fujii 16:28
Thank you.
Joe Coe 16:29
So is there anything about your story or ZDen that I didn’t cover that you think that we should?
Danielle Fujii 16:36
Here’s another comparison, just to throw that out, throw it out there. A lot of people say, “Well, an eye mask is similar.” But I don’t know, and this is me personally, but for me personally, when I’m having a migraine event, putting anything on my face, that or anything around my head is not comfortable. It doesn’t mean that it it, an eye mask won’t work for somebody, but an eye mask won’t work for me personally. So I don’t have to worry about having that pressure on my face. Although I get the dark environment, I can still blink my eyes so I don’t have to worry about dry eyes. I don’t have to worry about the pressure on my face. So I don’t have to worry about my migraine getting aggravated even more. I can actually just be comfortable. I feel like I’m sleeping in my bed at night in a pitch dark room. It’s because it’s you know, it’s very similar to that experience.
Joe Coe 17:35
What I think is so common among those of us that live with migraine is that we do all these things at home to relieve our pain. I don’t advise people doing what I did. I put my head in the freezer for like moments to try to like just relieve some pain. People have used bag clips on pressure points to help relieve pain. And it’s just really we’re very resilient and ingenious population because we try to really find ways to relieve it and we’re not actually vampires like some people might think we are. We do like sunlight. It just hurts us. Danielle, thank you for joining me on Talking Head Pain and sharing your passion for creating better spaces for people with migraine.
Danielle Fujii 18:27
I appreciate it, thanks for having me.
Joe Coe 18:30
My pleasure. And thank you our listeners for listening to Talking Head Pain, the podcast that always confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.
Narrator 18:46
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
This week on Talking Head Pain, Joe is joined by Dr. Sara Crystal, a migraine patient, headache specialist, and Medical Director of Cove, a telemedicine service providing access to specialized care to migraine patients. Join Joe and Dr. Crystal as they discuss dismissive providers, building trust during a virtual appointment, and how being on the right treatment plan can allow you to be present for whatever life throws at you.
From Provider to Patient: A Conversation with Dr Sara Crystal
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:10
Welcome to Talking Head Pain, the podcast that confronts head pain, head on. I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation and a migraine patient myself for over 20 years. On today’s episode, I’m joined by Dr. Sara Crystal, who is also a migraine patient, a headache specialist, and Medical Director at Cove, a telemedicine service providing care to patients with migraine. Dr. Crystal, thank you for joining us on Talking Head Pain today.
Dr. Sara Crystal 00:37
Thank you so much for having me today. I’m so excited to speak with you.
Joe Coe 00:41
My pleasure. So can you give us a little bit of information about your background, what brought you to headache and migraine medicine,
00:48
I started out my career as a physical therapist. And that’s how I became interested in neurology, really, working with patients with stroke and brain injury. But I became interested in migraines, specifically, as a resident seeing how much patients could improve in just a short while. Just watching patients walk out, you know better than they walked in. And really my own experience with migraine too, is what drew me to it. I’ve experienced migraines since I was 12 or 13. And interestingly, although I had a bunch of diagnostic tests as a child, I don’t remember getting any specific treatment to help me. So it was really, probably 15 years later, as a medical student actually doing a rotation with a family doc, and I mentioned my migraines. And he said, “Why don’t you try a triptan,” and he gave me a sample of something. And that was that was actually, you know, pretty, pretty life changing to know that there was a migraine specific treatment, but I had to wait that long for for relief.
Joe Coe 01:52
And have you found that being a physician has helped you better advocate for yourself?
01:58
Yeah, I think so. I mean, in some ways, doctors are really are the worst patients because sometimes symptoms that we take seriously in patients we try to, you know, tend to minimize in ourselves. Also, I mean, I know, you know, when I experienced something I know, okay, this is this is within the range, you know, range of normal, not not too worrisome, but but it does help. So, you know, and obviously not everybody has that advantage. So it’s really important for for people to to be armed with knowledge how, however they can get it so they can, you know, get appropriate treatment for their migraine condition.
Joe Coe 02:34
Something I like to ask all of my guests that live with migraine, what was your worst migraine attack like? What did it feel like? What was the experience?
02:43
I experienced my worst migraine attacks during pregnancy. And to this day, I’m not sure if these attacks were what every migraine would end up without medication because that’s I was really trying to avoid medication or they were just something extra. And I remember calling my doctor I was I was just flat out in bed and just vomiting like crazy and and then the advice that I got was, “Go drive yourself to Dunkin Donuts and get a coffee.” And I was just I didn’t know what to do with that. I was just- almost it was almost laughable. The idea that I could even get out of bed and get in a car and get myself a coffee and that that was all I would needed to help me it was it was just unreal,
Joe Coe 03:29
R2eally insane. Reminds me of an experience I had last month in an urgent care setting. I was having an attack, but also thought I might have had COVID. And I went in and I said, “Here’s the medications I’m on. I have migraine, I’m having a really bad attack, but I think something else is happening.” And they were like, “Well, your medications aren’t working. If you’re having a migraine,” I was like it doesn’t really work that way. But give me my COVID test and let me go home. I ended up having COVID. I got, I was tested positive the next day, not in the clinic, at home. So that was an interesting experience. People that don’t really get it, I think is the common theme that like, this isn’t really happening or it’s not that bad or your treatments not working. This person knew nothing about migraine treatment or how it worked and was quite dismissive.
Dr. Sara Crystal 04:24
It’s awful.
Joe Coe 04:25
I understand that feeling. And I hope they at least recommended an iced coffee and not a hot coffee because I couldn’t imagine having a hot coffee. So I think it’s super interesting, Dr. Crystal, that you have this physical therapy background and you’re also a neurologist, do you have any practical tips for migraine patients that you think folks should know?
04:49
Yeah, so I think that background does help me think a lot about ergonomics and you know the role they may be playing in, you know, potentially triggering attacks. I remember doing, you know, telemedicine at the beginning of COVID. And obviously there were many reasons you know for for people to report worsening headaches but that was you know, abrupt change to work from home and people didn’t have the right setup. And so, you know, I think addressing at least that piece of it was helpful you know, thinking about your, your setup, your computer, how is your neck position when you’re when you’re working. So I like bringing that background and then just in general, because the you know, the cervical spine is so important in, you know, there’s so many there’s so much crosstalk between the trigeminal nucleus where you know, migraine comes from and the cervical spine that migraine can manifest itself as neck pain, and conversely, neck pathology can trigger migraines. So having that background, being able to address that with patients, I think helps.
Joe Coe 05:55
It’s so important, particularly as you said, as we have adapted and our spaces have changed and we think about how we engage in the world. That ties into my next question. Last year, you co-authored a paper on telehealth and telemedicine platforms like Cove, how they can increase access to specialist care. Are you still seeing that same access issue as the pandemic might be ending or becoming more of the norm as opposed to this on a one time incident? And can you talk a little bit more about telehealth and its role in migraine?
06:36
I think really there, even prior to COVID, there were and there still are, you know, large areas of the country where people don’t have access to specialty level care for headaches. So, you know, we know that, you know, on the east coast, on the West Coast, there’s, you know, a number of specialists, but, you know, there’s large, large parts of the country where patients just don’t have access to specialty level care. So, you know, that’s where Cove and telemedicine can can really help bridge that gap to access. During COVID, patients that normally had access, you know, couldn’t get in to see their doctors but I think you know, there was a role before and, and will continue to be a role for patients really everywhere.
Joe Coe 07:22
And we have both providers and patients listen to Talking Head Pain, what’s some advice you would give a patient and a provider to make the most of telehealth appointments? So first, what you would tell patients how to prep for them and then to your fellow providers, what you would share with them to get the most out of a visit via telehealth.
07:45
So from the patient perspective, really just having as much data when you come into the appointment. So a migraine diary, not everybody loves to keep them but they really I think are very helpful to look at triggers, look at you know, medications, taken acute medications, taken whether or not they helped. So look at you know, if you started a preventive medication comparing before and after to see if we’re, you know, going in the right direction in terms of reduction in frequency, look at timing with menstrual periods for women. Bringing in that data when you when you come in to the appointment. From the provider standpoint, really having that information is is key, if possible, reviewing that information, even before the appointment if it’s available, so that you can target your, your visit your your questions appropriately,
Joe Coe 08:37
Definetely, and have you found either through your own experience or hearing from colleagues how to create that trust and bond via this digital mechanism of telehealth? Because it’s such an intimate experience going to a provider especially when you’re in pain.
08:55
Yeah, it’s it’s so interesting. First of all, I think that actually people in some ways are more comfortable via telemedicine because they’re in their own space. So they have that that comfort level. And Cove is actually an asynchronous telemedicine practice. In other words, patients it’s sort of text based. Patients fill out a complete a very complete questionnaire about their headache and general medical history. And then there’s messaging back and forth between the provider and the patient to follow up on you know, on information and you know, to talk about the treatment plan and the patient has the opportunity to ask any questions and it’s so fascinating to me. And it’s so rewarding when I see comment after comment that patients say this is the first time they feel heard and it’s so interesting because this is a you know there’s there’s no face to face encounter even but to have that knowledge that that this doctor is focused on your headaches specifically and they’re here to help you with with that condition, it really is so, so reassuring to patients.
Joe Coe 10:06
What does it feel like when you see a patient or hear that a patient has gotten relief because of how you’ve helped them?
10:15
That that is just the best feeling. It really, it just makes any any difficulties any just it makes those go away. Whether I hear it in clinic, you know, where I practice or from our telemedicine patients, it just makes everything so worthwhile. You just feel so great. A couple people I saw yesterday, you know, one person said, “You got me through such a difficult year,” it just makes you feel so good. I mean, knowing that you’re helping them function that you turn things around for them, it’s the best.
Joe Coe 10:48
Really good reminder for me to share those experiences with my provider. I’m thinking I was at the hospital, my grandmother was passing and I brought my migraine medication with me. And after she passed, I remember taking it and looking at it in the garbage and the wrapper was in the garbage. And without that medication, I would I think I would have been sidelined for a couple of days because it was you know, a big trigger. And I wasn’t, which really surprised me and my family. It’s important. I haven’t always been in that place where I’ve, you know, been on the right treatments. And it’s so hard as you know, as a provider for patients to advocate and providers with no prior authorization and step therapy and all those fun things to get on these right treatments that make it so you can function during these like really difficult and or positive life experiences like weddings and, and big events. So I had that visual image of of that hospital moment and taking migraine medication and thinking back looking at it like oh, right now I should tell my neurologist that his proactiveness and we’ve had to fight with our insurance company with prior authorization to get on that treatment. Thank you for that reminder, that’s a really a good one.
12:09
Yeah, that is so frustrating. But I you know, and I’m sorry for your loss. And I’m glad that you you were able at least to get through, like you said, get get through it. You know, what could have potentially been, you know, a really bad trigger when you when you had to be you absolutely had to be present.
Joe Coe 12:25
And I’m happy that I remembered to run back to my house to grab it as I ran out to my car, I’m like, let me get my migraine medication. So a reminder, not only to take your medication, but to remember to bring it with you when you might need it, which is a big problem with me, since I don’t carry a bag, and it’s just not there. So that’s a tip to take and bring your medication with you. For those of us that haven’t found the right treatment, like I have, how do you advise folks to manage their triggers?
12:57
That is a great question. So some, some triggers are avoidable, and some are not right. So we can’t change the weather. You know, so and then the stressful situation like you described with your family that that nothing to do about it. But I think you know, realizing that triggers are additive. So trying to address the ones that you can help so if you know that you know you’re you’re going to be traveling you know maybe minimize alcohol if that’s a trigger for you that may be normally your you can you know cheat a little bit with that, you know, that’s when you have to be careful. Try to get as much sleep as you can, try to stay well hydrated. You may not be able to change the stress part of it, but those triggers that you can manage do try to avoid.
Joe Coe 13:43
Definitely, I have a follow up to that around travel. Staying hydrated is so important for me and many people, but it makes me have to use the bathroom so much. So I was talking to my doctor and he said, “Just make sure you get an aisle seat. Stay hydrated, but get the aisle seat.” So now I really just really pushed for the aisle seat, even though I’m a short guy and normally taller people want that for the legroom. I’m all about the aisle seat so I can get up and stretch and use the bathroom because I am maintaining that level of hydration while flying particularly. I have noticed that that has helped. Is there anything that you wished society as a whole knew about migraine that, you know, we know because we live it and we work in this field? But what would an average person need to know about migraine?
14:35
To realize that it’s not just a headache, you know, it’s not just the pain. It’s everything else that goes with it. There’s you know, there’s the prodrome, the the postdrome, that you know that migraine hangover. That you know your friends or family with migraine, you know, even though you can’t see it, they really are suffering and to be understanding. Employers too, right? You know, understanding that just because you can’t see it, does not mean it’s not there and to be accommodating and understanding.
Joe Coe 15:08
Dr. Crystal, how has platforms like Cove helped folks get access to care?
15:15
We have demonstrated through a couple of posters that we presented in the past and recently, the American Headache Society and with American Academy of Neurology conferences that we we are improving access so to patients, for patients that lack access, whether due to geographic location, and also due to other barriers. Recently at the American Headache Society, we presented a poster that showed that we are providing equitable care to patients that are part of underrepresented populations.
Joe Coe 16:03
Thank you for joining me on Talking Head Pain, Dr. Crystal, and for the valuable advice you’ve shared with our listeners.
Dr. Sara Crystal 16:09
Thank you so much for having me.
Joe Coe 16:12
And thank you, our listeners for listening to Talking Head Pain, the podcast that always confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.
Narrator 16:28
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
This week on Talking Head Pain, host Joe Coe is joined by Namira Islam Anani, a lawyer specializing in human rights education and training and a graphic designer. While recovering from COVID in 2020, Namira noticed that her headaches were getting worse. This led her to seek care from a neurologist who opened her eyes to what she was experiencing.
Join Joe and Namira as they discuss long COVID, ableism in her profession, and the importance of creating and holding space.
The Beauty of Holding Space: A Conversation with Namira Islam Anani
Narrator 00:00
Be inspired, supported and empowered. This is the global Healthy Living Foundation Podcast Network.
Joe Coe 00:09
Welcome to Talking Head Pain, the podcast that confronts head pain, head on. I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation. And I’ve been a migraine patient for over 20 years. As the COVID-19 pandemic continues, we’re still learning the long lasting effects the virus has on the body. Today’s guest has dealt firsthand with the effects of long COVID while also navigating life with migraine. Namira Islam Anani is a graphic designer and lawyer who specializes in human rights education and training. Namira, really, really happy to have you on the show today.
Namira Islam Anani 00:40
Thank you for having me, I’m really excited. It’s interesting because it’s, it’s like I’m excited, but also a little bit sad to be here in the sense of the fact that all of us are dealing with migraines. And just that reality is, you know, it’s a sad but good club to be in.
Joe Coe 00:57
It’s a special club. So for those that don’t know, Namira is a human rights education lawyer and graphic designer, and a social justice specialist who’s living with long COVID and migraine. So we’re going to talk a little bit about long COVID. And that’s where we’ll start. So what is the journey for you been like getting migraines and getting a migraine diagnosis in regards to long COVID?
Namira Islam Anani 01:21
So before I had COVID, I’ve been dealing with fibromyalgia for about 11 years now. So I was already used to brain fog and some of the physical fatigue and certain other symptoms around chronic illness. That was something I’ve been navigating for a while. I had COVID back in March of 2020. So I was one of the first ones that I knew to have COVID. At the time, we weren’t really even masking, there weren’t really treatments. I know for me, my temperature wasn’t high enough for me to come in and actually get a test or anything like that. So it’s very much this journey around getting diagnosed in the first place. So I often say that I was clinically diagnosed with COVID by like three different doctors but never had a positive test because tests were in such short supply at the time. So at the beginning with COVID, I was sick for about six weeks, couldn’t really get out of bed. I wasn’t sick enough to be hospitalized, but it was it was getting there. And then once I started recovering, I just noticed this for me at the time, I thought it was an increase in fibromyalgia symptoms. I was like, “Oh, it’s the pain, it’s the fatigue, it’s the brain fog.” But the biggest thing I noticed was word finding difficulty and other cognitive kind of impacts. And at the time, I had this referral for a neurologist and trying to get in to see them. But by the time, long story short, it took about a year and a half before I was able to actually go get an MRI. And at that point, the neurologists that I was seeing had said, “Are you getting headaches?” And when I thought about it was like “Oh, my head hurts right now as I’m sitting in this doctor’s office,” just didn’t really register it because I’m so used to dealing with pain on an everyday basis. So once the migraine kind of diagnosis came in, I realized that this has been something that was, that really had shown up after COVID. So before that, just the journey of really exploring what symptoms I was having because of COVID, what is long COVID, what is the long hauler kind of journey look like? All that stuff was was happening beforehand.
Joe Coe 03:11
Before you got COVID did you have headaches and migraines and you just didn’t connect them to a specific headache or migraine disorder?
Namira Islam Anani 03:20
It’s a good question. Because I know at the time I was dealing with a lot of brain fog. I also grind my teeth a lot at night. So I know that if I didn’t put my mouth guard in I would have headaches. I don’t think it was the same. So I’m not sure if it’s just the severity of it increased or if I already had migraines, but I never identified, “Oh, I’m having migraines,” before COVID.
Joe Coe 03:41
What does a migraine attack feel like for you and what’s your worst attack like?
Namira Islam Anani 03:45
So a couple things that I’ve noticed I usually have, which I realized recently that not everybody has this, but I usually have that little voice in my head that’s kind of like running commentary, thinking through things before I speak. Just that little voice. And I think the biggest thing I noticed around migraines is that it’s hard to track that voice. I also get a lot of light sensitivity. So turning off lights, trying to avoid screens. It feels like a lot of pressure, definitely feels like a headache. Like a really severe just like pounding in the skull kind of feeling. Pain behind the eyes, sensitivity to sound, just loss of appetite. I think the worst one that I had at the time I was facilitating over Zoom, I facilitated a workshop. And it was a three hour workshop. It was just me. So I was handling the tech and then I was also trying to focus on the participant experience, engaging them, and then sharing slides, doing the lecture component. All these things. I remember afterward, I probably had a migraine that was happening beforehand I just didn’t have the language or even the self awareness to be able to flag that it was a migraine, because I went in and I remember with a headache and thinking about how, “This ring light is really hurting my eyes right now.” And then after the workshop ended, I remember just sitting there completely mute. It felt like I couldn’t speak or string together any sentences. I couldn’t really think. It just felt like I was just sitting there very catatonic almost. And at the time I realized I was like, “I need to turn these lights off, I need to lie down,” but it felt very frozen like I felt really trapped inside my own head essentially.
Joe Coe 05:17
You just mentioned self awareness of migraine, what does that mean to you? And how have you adapted after you receive that self awareness?
Namira Islam Anani 05:25
When I first got that question from the neurologist who’s like, “Do you have headaches?” To sit for a little bit and just think about it, and I realized that I was having a headache right then and there. I think it’s that level of self awareness, I, you know, my background as an attorney, especially, there’s always, for me, been this division. It’s like the body versus mind kind of approach or the mind over matter kind of approach. And so that’s been something that I’ve been unlearning. But I think one thing that I really had put myself into that was a really toxic pattern was around the lack of self awareness. It’s even more than that. It’s like suppressing a lot of the physical sensations or suppressing a lot of information that my body is giving me so that I can focus on whatever task is in front of me. And so oftentimes, if there’s pain, if there’s fatigue, if I have a blinding headache, I just try to push it away, or don’t even realize that it’s happening. It’s happening on a subconscious level in some ways. And so I think once I really realized that question around, “Oh, do you have a headache,” and I started thinking about that more. And then I’ve had to slow down. I really just had to sit when I’m sitting in front of a computer or switching tasks, or just having that check in with myself. It’s okay, like, how am I feeling? How is my head feeling? How are my eyes feeling? What am I noticing? It’s interesting, because with COVID, and with long COVID, especially, I would, I would notice things around like shortness of breath, or, you know, just physical sensations that were not tied to the head. And so there were like, moments where I’d be like, “Oh, I’m sure breath right now, or I’m really thirsty,” or something like that. But there have been moments where I know like, my partner, we were out for a walk. And he’s like, “Hey, you’re breathing really funny. Do you need to use your inhaler?” And I just hadn’t even registered, I was like, “Oh, I am short of breath right now.” And it’s very similar for migraines where had not having that self awareness, not checking in with myself, I wasn’t being kind to what I needed, or even paying attention to what I needed at the moment.
Joe Coe 07:17
That’s really powerful. I’m curious to learn a little bit about how the intersection of your professional life is with migraine and chronic disease. So what is the intersection between human rights and health care and disability rights?
Namira Islam Anani 07:33
There’s so much there. It’s such a great question. I know it’s, on the one hand from being in the profession. I remember even for the bar exam, like when you sit down to get approved, even to sit for the bar exam, there are these questions around your fitness, right? Whether or not you are capable, or somebody who is able to practice law. And that was one of the first times that I really started hearing people talk about disability, and especially ableism, even within the field around, hey, if you disclose that you’ve dealt with depression, or you disclosed that you’ve dealt with a certain health condition, does that then affect your ability to practice law? And so people were talking, you know, we’re all like, have gone through this journey of law school where we’ve invested so much time and effort, resources into getting to this point to even sit for the bar exam. And then people are like, “Hmm, should I hide or not disclose certain things? Because what if that jeopardizes my ability to practice law?” And at the time, it was so interesting, because I was working in human rights education and training, specifically focusing in on racism and education around racism throughout society. And so ableism in particular, wasn’t something that I was thinking about. But the more I’ve gone through this and longer I’ve lived with chronic illness and disability, the more I’m recognizing the ways that ableism is just everywhere, right? And throughout the profession, you know, your lawyers, the people that you’re going to, the people that you seem, that you see as capable as somebody who’s going to support you or help you or, you know, open up access to resources for you. There’s so many unstated norms around how that looks. You want to be standing up when you’re in a courtroom, you want to be showing up without rescheduling a hearing, you want to be coming into a space where you are larger than life. And any sign of weakness is automatically tied to the idea that you’re incompetent at what you’re doing. And just the rigidness of the space. So just coming into that space from being a lawyer, but then also looking at something like human rights education and training, there’s been so much unlearning that I’ve had to do of how to show up and what is acceptable and really detaching that aspect of ableism really around competency and professional competency. And I think for myself, especially in human rights, I’m just recognizing the ways of like nonprofit culture or just like the NGO kind of space or social sector work, you know, some people of the nonprofit industrial complex, the way we sometimes talk about these spaces is just that narrative around sacrifice and martyrdom and push through it. “If you are passionate about this work, then you will push through the pain, that’s, you know, you can care for yourself later, you know, once the world is more healed and better, that’s when we can take care of each other.” And that narrative is just really hard to unpack. And so for myself, going through this journey of really recognizing with migraines, like there are times where I have to reschedule, there are times where I have to be off camera, there are times where I need to sit down and not be able to speak, you know, the front of a space or things like that. Just really unpacking that for myself and for other people as well around like, this is what we’re talking about. We can’t wait until we get to a place where the world is different to start taking care of each other and start taking care of ourselves.
Joe Coe 10:48
That’s so important. What would you tell a younger version of yourself or an aspiring attorney or activist that lives with a condition like migraine?
Namira Islam Anani 10:59
Yeah, it’s think about this a lot. Because I get where I was at back then. I also recognize the ability to even get into law school, to be able to do the work that I did during law school, to come out of it, to become a licensed attorney, and then do the work that I’ve done around, you know, nonprofit founding an organization doing anti-racism education, I know it needed a certain level of hustle and also just acclimating, right, or adjusting or navigating some of these spaces where I didn’t have as much agency to change some of the norms. And so that’s something that I think about a lot now where it’s like that almost a hazing process, right, when you get into certain spaces, where they’re like, “Oh, you need to put in the time, or you need to put in the effort, you need to go through this really difficult thing, or to make it to a place where there’s more flexibility or ability to adjust.” I think what I would tell myself especially is that it wasn’t that something was wrong with me, when these spaces were not designed to accommodate. Something is really wrong with the way society is structured when accessibility and inclusion and really making sure that people have what they need is seen as a burden or seen as inconvenient. That’s not something that, I had definitely internalized that when I was when I was younger, that it was just me, and something was wrong with me. And so I think there’s that self compassion, that grace that, you know, I really hope people who are coming up through these really rigid spaces that they are give themselves. And especially that piece around needing to do certain things in order to survive in a space, just having compassion for yourself based on that. Because there are things that we would want to do differently. But we don’t always have the power to change. I’d also really advocate for taking the time, taking the time to really focus on yourself to think about just because if people are pressuring you to do things a certain way, do you have to do it that way? Are there ways to also advocate within? Like a setting like law school setting for accommodations, to even ask for those things, I don’t think I felt that I had the agency to ask for these things. So I would have told myself like if the issue is with society and the structures, we’re living in, like ask, advocate for yourself, make sure that you are getting the benefits of the work that people before you put in to make sure these spaces were more accessible.
Joe Coe 13:21
So important, particularly I love the concept of compassion to yourself, which then extends to others because we don’t know what people are living with or dealing with often with these invisible conditions and chronic diseases that we’ll never see unless we provide that space for people to feel comfortable enough to tell us. And I also really appreciate you talking about that internal dichotomy that we have around what do we do, can we change the system, and what is what spheres of influence do we have in our own institutions to shift things. And I think that that’s a really smart thing. But also I’ve grappled with that too. It’s really easy in hindsight to say what we should have done so I think that leading with compassion highlights that so much and I appreciate that.
Namira Islam Anani 14:17
Yeah, no, because I think otherwise it’s hard to feel guilty about almost like complying, right, with the way things are structured, but the reality is, some of these things are bigger than just any one individual so while that also gives us space to like agitate and and push right for like change, but it also means that sometimes our inner critic is so strong around like, “Why are you going along with us?” Well, because there’s an aspect of survival here. Aspect of being able to even get through it to get to somewhere else.
Joe Coe 14:46
Oh, totally. So has migraine impacted your personal life in any way?
Namira Islam Anani 14:52
Absolutely. 100%. I think the biggest difference is around the personal actually. I think in many ways, because I want to show up a certain way in, in work and in the community kind of advocacy space and leadership development, especially, I think for myself, there’s kind of the spectrum of certain things are more fixed in my calendar, which usually is work and certain community efforts and things that are happening oftentimes with other people in my network. And then because of that, some of the flexibility comes in around my personal life. And that’s where I’ll take that space of, okay, “I can feel a migraine coming on or dealing with a flare up of different conditions. I’m really exhausted, can we reschedule?” And I think the nice thing about it, though, is that my family, especially before I had COVID, I was working a lot. Like I was in this journey around trying to have more personal ecology, right? So thinking about your ecosystem in your own life, rather than just work life balance, but like, what is the ecosystem around work and around your life, and I was getting there, but COVID completely interrupted it. I mean, I transitioned to the board for my nonprofit after serving in leadership there for seven years, and with the migraines especially, just recognizing the impact of certain things really shifting my life. And so the great thing about it is, because of the way COVID and the pandemic was playing out, my family were really the ones that were there for me during that time. It wasn’t the network, it wasn’t the community, they were there, but they were on the outskirts. And so them kind of witnessing what my COVID experience was like, them knowing what symptoms I was trying to navigate. I just have so much grace and flexibility from my family around, “Oh, this isn’t doable today. Or, you know, let’s adjust this, what do you need? Can we do something?” And so I’m also been working on unpacking the difference between like, yes or no. So moving out of that either or binary, towards like, “Oh, maybe I feel a migraine coming on, it doesn’t mean that I don’t see my family, or I don’t engage with them. Maybe we change what we’re doing or how we’re doing it.” And so that way, there’s still a way to have time together without necessarily staring at a TV screen, or making sure that we’re doing things a little bit differently so we can still see each other. But the personal life has been where it’s things have been getting rescheduled, or, you know, just on the fly kind of making changes with what I’m doing on a day to day basis.
Joe Coe 17:21
I love the concept of getting rid of the yes/no binary. And it’s something that I practiced yesterday, which I didn’t even realize I was practicing. I went to an event that I normally would have said no to because it was really hot out and heat is a trigger for me. But I said, you know, I’m feeling good. Let me do this. And I left middle of it like right when the event was getting poppin. But I said to people, I was like, “Listen, I’m feeling fine, but I think if I push it, I am not going to feel fine. And I have had a really busy week and I am not going to do this.” And people were really understanding. It was a little tiring when folks like when I asked you questions and about your disease, but I figured I was being open. So um, that’s what I invited. But it was, um, it was definitely not a yes or no, I went and I decided to leave early before I gave myself the opportunity to to have an attack from the heat. It was like 90 something degrees.
Namira Islam Anani 18:21
Yes. Here as well. And I love that, kind of, I really admire that because so far, it’s been easier for me to do this with family than it has been with large groups. And I don’t know exactly what is bleeding into that. If it’s a combination of who I was before COVID, before migraines, and kind of responsibility to be in the space. I’m not sure. But that was something that I was thinking about with some of these larger events. Like, you know, I’ve been erring on the side of saying no, because I don’t know if I fully trust myself to have the good boundaries of being able to say when I’m there like actually, “How am I feeling? I need to either sit down or I need to leave.” So I really appreciate you sharing that because I know that’s something I want to work on for myself.
Joe Coe 19:03
I did miss the group picture but you know, worse things have happened.
Namira Islam Anani 19:09
Yes.
Joe Coe 19:11
My, my one of my last questions for you. I want to talk about diversity in migraine and in COVID. Do you see a lot of diversity in the migraine community or space as well as, as you got the diagnosis for long COVID and migraine, did you find that you were seeing and hearing stories that resembled yours?
Namira Islam Anani 19:32
It’s a great question because in the process of the pandemic, I moved from the suburbs, here in Metro Detroit to Detroit, and a lot of my work has been here in Detroit the last seven, eight years. So I think because of that, the stories I was hearing around COVID especially, we’re a lot around black and brown folks here in Metro Detroit, but I will say that especially with migraines before kind of being in the space and really getting to meet more people and talk more, and learn more from like the community around kind of migraine treatment and moving through it. I think my only real stories about it were like the widespread, mainstream stories that really saw it as like a white woman’s kind of issue, right? Where it was like, “Oh, that’s who gets migraines.” And so just the gender, the race aspect of it. I think the other story, though, that I grew up, with my parents came from Bangladesh in the 1980s to the United States, and I feel like growing up there were so many you know, community aunties, Bengali women, who were like, “Oh, we have migraines.” But I think the story that I would hear from that was that when they had a migraine, it was just, “Hey, shut everything down, I’m gonna go into a closed dark room, and just ride it out.” So there wasn’t much around the treatment aspect. I feel like growing up, I just, migraines seemed like this mysterious thing that it just hits you, and then you’re done. And you just have to wait. And there’s not really much else you can do other than go lie down in a closed, you know, dark, quiet room. And so through the long COVID journey, though, even though I was seeing stuff on the ground around who was being impacted, and especially in Detroit, where we’ve had water shut offs, we’ve had all kinds of issues with access to health care. It’s like the country’s telling you to wash your hands for 20 seconds, and yet we have people who don’t have water in their homes because of a couple hundred dollars in unpaid bills. And just seeing the difference between that versus like the national narrative, I’ve found myself really wanting to seek out stories from people of color around COVID, because it was a different experience getting diagnosed, or just really thinking about the layering as well of other conditions with COVID. And then some of the messages around,”Oh, it’s your fault,” or like, “Your cultures are a certain way,” just some of the microaggressions that were happening. So one thing that I really found myself leaning toward was, who are the other people of color who have been dealing with long COVID, because the stories that we tell ourselves and each other around, you know, even the impact on like family life, or how we’re showing up in our community, and then also the distrust of doctors, because of the histories of racism in medicine. I know I was navigating all of that. And so right now there’s like a Slack group that is for long haulers. And there is a specific BIPOC channel in that Slack group. And that was a space that I was really finding supportive, more so than some of the other spaces. It’s just a different kind of relationship, you know, thinking about vaccines, thinking about all of these, whether or not you trust doctors. Are they’re just telling you to like, “Oh, yeah, the pain, you just have to go through it.” Are they treating me, as a Muslim woman wearing a headscarf, that I am going to be really meek or somehow need to be relying on somebody else to make decisions for me. There’s just so much around like race, religion, gender that I’ve encountered over the last 12 years in a medical kind of space dealing with doctors, that I think that did help me with the COVID diagnosis. Because there was a lot that I was doing around self advocacy. The first neurologist that I went to go see, I walked out, which I’ve never done before, because I’d been sitting there for an hour in the waiting room waiting for them to come in, after months of waiting for an appointment. And I remember thinking like, wow, well, you know, the old me would have never done this. The me that hadn’t talked to other people of color that hadn’t really been thinking about how race and medicine and religion and all this stuff play out. I wouldn’t have walked out I would have just sat here. But I knew that I was just fed up. I was like I can’t. I need somebody who will see me, who will be able to be reasonable about wait times, who will spend time with me, and I just can’t do this. And so I left. And that was partly why it took longer to get in to see a different neurologist. But I do think it was worth it. Because the team that I’m working with now is so much more supportive.
Joe Coe 23:54
One follow up question, what’s the biggest takeaway or learning that you have from being part of that Slack group or that community around COVID and long COVID, and being part of the BIPOC community?
Namira Islam Anani 24:10
The crowdsourcing element, I don’t think I would have called it crowdsourcing before I would’ve called it like communal wisdom, which it still is, but I think technology has enabled you to connect with people in in such a different way. And that has been such a huge relief to know that other people are dealing with the same things you’re dealing with. Even if they’re not they’re holding space for you to be able to talk it through. There is that crowdsource element of what did their doctor tell them or what did somebody else in their life tell them as to how to navigate these, these conditions. And I think from that space, I’ve been really thinking about okay, what are some of the things around drinking water or even grounding. I know I was looking up some practices around grounding in Zoom space right around breathing and just grounding in the space before we start doing a training or talking about some tough things. But you know, I came across and indigenous teaching around just Earthing and putting your feet barefoot on the ground in the grass outside. And so I’m just thinking about all the ancestral kind of wisdom too, thinking about different families. And I think the beauty of the BIPOC space, especially in the United States, is that you are getting a global perspective of approaches to wellness and well being. And some of those things, it’s like, the holistic approach to where it’s, it’s medicine, and it’s a different kind of healing that is happening in a different way. So thinking about the prescriptions versus, you know, the ways to drink more water, the ways to be able to connect more with nature, and get in some of the effectiveness through the sun and other ways of just managing. I think there’s a wisdom there that we’re tapping into generations of experience. And that space is where we are able to bring that in and talk without being judged or without having people, just that gaze on us as we’re having these conversations and sharing sometimes very personal, familial kind of histories and stories with each other.
Joe Coe 26:10
That’s so amazing. You would love a podcast that my colleagues, Angel and Danielle host called Wellness Evolution. And I encourage folks on Talking Head Pain to check that out. There’s breathing exercises that can help ground and do some of the things that you were talking about, which is really important. One last question. Things keep bubbling up as we’re talking, you’re sharing such such amazing things. Can you explain what holding space means for you?
Namira Islam Anani 26:39
Wow, it’s such a beautiful question. There’s something about presence when it comes to holding space. It’s not just, it reminds me almost of the difference between like quality time versus just being with each other in a room. Holding space is like creating this container or creating this opportunity for people to really show up and be fully present with each other. There’s something about also, this, I often call it like an artificial construct. So when we talk about like community agreements, or community norms, or how we’re agreeing to be with each other, that’s about holding space. It’s getting to really be with each other in a very intentional mindful way where people can feel heard and seen and just embraced for for being there. There’s a serendipity that comes from you are holding space with someone. And the fact of all the things that had to align for you to be together in that moment, there’s an intentionality and appreciation for the space that you are creating, co-creating really with each other.
Joe Coe 27:42
That’s amazing. I know a lot of people probably don’t know what that is, or haven’t experienced that. So I wanted to make sure that we put an underline on that concept, because it’s a really important one doing work around chronic disease, social justice work, it’s about building trust, and how we build community with each other in ways that we define for ourselves that help us and give us what we need to navigate, as you said earlier, a world that is created to not support or uplift people that look a certain way, love a certain way, practice a religion in a certain way, or live with certain diseases that people don’t understand or think are serious. So really appreciate all of the wisdom that you shared and insights. This was a really awesome discussion. Before we wrap up, is there anything that I missed that you wanted me to ask or that you want to share?
Namira Islam Anani 28:38
No, I wanted to thank you for holding space and for that question. I’m so grateful, especially being somebody who, you know, is new to the migraine kind of space for all the people, that you all are in this space, are holding space with each other, you’re showing up for each other. It just really makes me feel held in a very different way. And I’m so grateful to have this.
Joe Coe 29:00
Thank you for your time. I know that it is a lot of effort to do these things. And we all have limited time and energy. So I appreciate the energy that you gave to us at Talking Head Pain. Thank you so much.
Namira Islam Anani 29:13
Thank you.
Joe Coe 29:16
Thank you so much for listening to this episode of Talking Head Pain, the podcast to confront that head pain, head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.
Narrator 29:32
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this episode of Talking Head Pain, Joe talks with author, journalist, and fellow at the Global Healthy Living Foundation, JP Summers. Join Joe and JP as they discuss the toll that migraine can take on independence, the experience of her child being diagnosed with migraine, and the joys of reporting from Comic Con.
Migraine Superhero: A Conversation with JP Summers
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:09
Welcome to Talking Head Pain, the podcast that confronts head pain, head on. Hi, I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation. And as you know, I’ve been living with migraine for over 20 years, and I’ve learned that no matter how long you’ve been on your personal journey, we all can agree that living with migraine can lead to profound changes in our lives. These are changes that today’s guest JP Summers has experienced firsthand. JP is an author, journalist, and fellow at the Global Healthy Living Foundation. Hi, JP, how are you today?
JP Summers 00:43
I’m doing great, Joe. And you?
Joe Coe 00:45
I can’t complain. It’s a good day when I get to do Talking Head Pain and talk to wonderful people like you. So we’ll jump right in JP, can you explain to the audience what your worst migraine experience was like?
JP Summers 00:59
Sure. So my worst migraine experience was when I was in the eighth grade. I was actually in the middle of taking a test and all the sudden on my left eye I was having what they would consider floaters. And so all of a sudden, my left eye had all these little floaters. It kind of looked like little butterflies, like sparkly butterflies. And then within a matter of seconds, I couldn’t see out of my left eye. So my reaction was to just head out to the nurse’s clinic because that’s what I was, you know, that’s my norm. And as I was walking down the hallway, which typically wasn’t that far, but I started losing vision in my other eye. So I was walking and holding on to the wall, which basically were all lockers and I was trying to feel my way to the nurse’s clinic whose door was always open. And as I was walking, it’s like tunnel vision and like even the sounds, I could barely hear anything like my hearing almost went, like I was almost deaf. And by the time I made it, which seemed like an eternity into the nurses clinic, she looked right at me and I could barely see her. And all I said was, “Migraine.” And from that time and again, I don’t recall anything what people have told me my parents, the nurse, the physician. So apparently my parents picked me up from school, drove me to the physician’s office. They then administered what would be a migraine cocktail, which is a mixture of different kinds of meds that they they tend to use, a combination of usually three, to kind of help alleviate the the migraine symptoms. And that was done. Apparently I was there for two hours from what I was told. Then I was driven back home. I did not wake up, so around the timeframe I was told, it was like about maybe like one o’clock in the afternoon at school. So by the time I woke up, it was 10 o’clock at night. When I woke up I had no idea where I was at. I didn’t even know what day we were on. I mean, absolutely. Like I don’t remember anything. And again, I was just told the story of what happened. And for someone who never experienced a migraine attack that severe, that debilitating, I was shocked that I’m like thinking, “How could I have lost those many hours of time?” And it’s scary, because that did happen several times. I would say at least 10 times from that the eighth grade, it happened to me several times over the years. And yeah, again, that was probably the most terrifying migraine attack I ever experienced.
Joe Coe 03:46
Yeah, that sounds really intense, particularly the loss of time. That leads me to my next question, JP, what are some of the things that you’ve lost by living with migraine?
JP Summers 03:58
Oh, gosh, the the top two that always stick out the most when I’m advocating, when I’m sharing my story, is the first one would be loss of driving. I actually my neurologists, when I started to have debilitating symptoms with my motor skills, I had a weakness in my hands, of movement. I had difficulties walking, I actually had to have help to get around. And that led my neurologist to suspend my driving privileges for two whole years. That is how debilitating, that’s how severe that all of actually my symptoms were. So for two whole years, I had to have people drive me to doctor’s appointments, drive me to the store. I mean, just the simple things that you take for granted, people had to pitch in. My daughter who just got her license was driving me just down the road just to run an errand. And to lose that part, you know, something that you that you just normally don’t think that would happen. That was very difficult for me to accept. And because of my not not being able to drive that then led to a loss of a career. At the time, I was seeking medical advice. I was trying to get treatment, trying to figure out what was going on. Why was my neurological state so bad? And of course, I had a banking career at 13 years at that point. After the you know, the use of FMLA I was let go. So I lost a 13 year career, which is something I never ever imagined migraine would take away from me, because most people lose lots of lose days, you know, they’ll maybe miss maybe some hours, a few days, but never did I ever imagine losing the ability to drive and a career would be the result of having the migraine disease.
Joe Coe 06:03
How did that realization that you couldn’t work anymore, or losing your career impact you emotionally, physically?
JP Summers 06:12
Oh my gosh. So I know that it wasn’t that I was- I wasn’t fired. I know that but mentally, and emotionally, I felt that I felt like a failure. I felt that I failed myself as a person. Everything I worked hard for, all the years that I that I put 13 years I put in for training, I took classes, you know, I built those customer relationships, you know, just all of everything that I worked hard for and was gone. And that emotionally drained me. It put me into I mean, I wasn’t diagnosed with depression. But personally, I felt that I did go through depression because I, I was in pain for one. I had all these symptoms going on, if it wasn’t, you know, visual disturbances or sensitivity to light or, again, the decreased motor skills of not being able to walk unassisted. Just the things that symptoms that you get, you know, with having a migraine disease, but I mean, mentally, I felt like a failure. I felt like, I can’t believe that, that I allowed this to happen. How could I have come to this point? So it does affect you. And I think for me personally, just knowing that, hey, you know what, I know that this happened. But I have to get better. I have to, you know, find a way to get back at least part of what I lost. So yeah, it definitely does take a toll on you a lot more than what people realize.
Joe Coe 07:55
So JP, how did you find purpose and reclaim that sense of self?
JP Summers 08:00
It took a good year for me to kind of put a positive spin on what was going on with me. And I found online community where I was able to join online support groups for people living with migraine and other headache disorders. And through that someone reached out to me and said, “Hey, we have this, you know, we have ways that you can share your story.” And when I was told that my story could help others, I just couldn’t not think about the positive things that could come from it. And that gave me so much purpose. That gave me a reason to want to keep going, to keep pushing for a better quality of life.
Joe Coe 08:44
I know you personally from working with you at the Global Healthy Living Foundation and through your advocacy. And I know that you’re a mom, and you have a child, or multiple children with migraine, I’m actually not sure. But when you learn that your 10 year old was diagnosed with migraine, what went through your head?
JP Summers 09:02
So the moment we found out that he did in fact have migraine, the first thought that went through my mind is, “I cannot believe one of my one of my children has to go through this.” And the next thing was, “Okay, we have to be aggressive, we have to find a treatment,” because I do not want my 10 year old who was actually going through the same symptoms, very similar to what I was going through, at that time. We both were hit with chronic migraine at the same time. And it was just I just felt like I had to do everything in anything possible so that he can still have his youth, you know. He was only 10. I was, yeah, I mean, I had migraine for three decades, you know, 35 years, but here’s my child who hasn’t even experienced middle school, high school, none of the things that I got to experience. And I, and I just already saw him in just this debilitating state that he he needed some kind of treatment plan regimen in place so that we could give him the best chance of having a scholastic career. And yeah, so it was just one of those moments where you, you feel like you’ve got to do anything and everything as a parent. But also as someone who has migraine to help them live a better quality of life.
Joe Coe 10:33
So important, your child is lucky to have such a fierce advocate for him in his treatment, because I know that you’re fierce, and you know how to advocate. So it’s unfortunate that you have to use those skills for your own family. But it’s something I can relate to; helping people that I know live with migraine, get better treatment. I want to talk more about your upbringing and being part of the Latina or Latino community? How has that shaped your migraine/headache experience? And what would you want people to know about that?
JP Summers 11:09
Growing up in Hispanic culture, it’s, you know, it’s, it’s one of those things that there are a lot of relatives, believe it or not, that have migraine in my family. And the odd thing is that no one really talked about it. And, you know, I have aunts and great aunts. Believe it or not, there’s there’s no males, my son is the only one that we know of at this point that has migrate. But I have so many cousins. And again, no one talked about it, I was the only one that was constantly, even as a kid, you know, when I was diagnosed at 10, I was constantly talking about it so I should have known I was going to be bald and advocacy at some point because I wouldn’t not talk about it. It was the realization that when I did start advocating, a lot of them were not educated. They didn’t know where to look for resources. Half of my family speak Spanish only, where would they go to find those resources, because, again, they need help translating. So I again see that, you know, difference in bringing forth the resources they need. But also it’s not just them. It’s I also have friends, you know, that, again, Latino, Latina, and they too have the same situation where half of their family only speak Spanish. Even the ones that are bilingual, still struggle to explain certain terminologies. So there is that need to bring more education, more resources, to the Hispanic community. Anything that I’m able to do to help, that is part of not just something I do as an advocate, but also someone who lives with migraine that I want my family, I want my friends to be able to share, to be able to give information that can help others in our community. And again, it’s very important to reach out to people with those different backgrounds, again, whether they’re only Spanish speaking, or they’re bilingual, again, to just kind of bring the information that they need to help them get the most effective treatment for them.
Joe Coe 13:27
So important. I remember we did a video campaign at GHLF called 86 Migraine and my colleague, Dr. Daniel Hernandez translated them into Spanish. We felt it was really important to at least start doing that because it’s it’s so missing in the migraine advocacy community and education, reaching Spanish speaking folks. Definitely a lot more to be done, and a lot more that we can do. So it’s important to listen to that experience that you’re sharing. I want to close this out by thinking about what brings you joy and happiness. And I know that one of those things is reporting and going to Comic Con and events like that. So what about Comic Con brings you joy? How do you get energized by that and how do you manage like these really loud, colorful, vibrant events while living with migraine?
JP Summers 14:28
Yes, so back in 2018 because of my experience as a freelance writer and blogger, I got to do media coverage at my very first Comic Con which a lot of people don’t know this or maybe they do, I call myself a big Geek Mom. I love anything and everything comic book related, Marvel, DC, Star Wars, yeah, you name it. I just love it. And so to be able to go to these events was just like amazing to see these celebrities, see people dressed by cosplay. I mean, I felt like this is amazing. Why would, why did I never do this before? So one of my biggest obstacles was, you know, knowing that I live with migraine disease, how can I attend these events, like you mentioned, that have these bright lights, just different things going on. So I always prepare ahead of time. I scan out the venue, because each event takes place either a convention center or a stadium. So I’m always constantly looking to see what their policies are because one thing that someone that’s chronically ill, we have to have meds on us at all time, medications. So I like to see what is your policy about bringing in liquids or checking out where their food stands or water stations because then they allow you bringing in a water bottle because you always have to have liquids on you or you know, something to drink when you take your medication. But also finding out where their first aid stations are. Because when you have migraine attack, sometimes you need extra help. And when I say extra help, you may need to have someone again, if you lose your sight, even if it’s partial, you may need to have someone help you. And when you’re at this big event, you know, you need to know basically your exit strategy. But when you’re also going into doing- so my favorite part is the celebrity panels. And let me tell you, I never want to miss one of those because that’s where you hear all the good stuff. You hear things you wouldn’t typically hear a celebrity talk about in a regular interview. So I’m like, I’m not going to miss those. And so again, just figuring out, okay, so when you go in there, try to sit in the area where you know, you need if you need to make a quick exit, you’re able to leave but also carrying around my bag of necessities. I carry earplugs, I have my sunglasses, you know, I have just all kinds of things I typically would use during the migraine attack. And a lot of times, I will sit on the floor. I mean, I have I’ve you know, I carry a sweatshirt or like a jacket or something. But I’ll sit it down on the floor because I need to sit that moment. I need to sit down if there’s not any benches or anything, and take my meds, and even I just need to rest. I need to rest to see what the next steps would be if I’m able to go back in or do I have to get an Uber to head out because again, even though I drove myself there, something that will again, I still have the difficulties of driving when I have a migraine attack. So again, making sure that all areas of of self care but also my own care are taken care of because like I said, you don’t when you go to these events, you want to be there all day. You want to take in everything. You want to be able to experience it. And it’s one of those things where yes, it brings me joy because I just love to see all these families dressed in cosplay, but also again, meeting celebrities getting to talk to celebrities. I mean that right there in itself. I mean, it’s so rewarding. So the fact that I’m able to do that, despite living with migraine disease for me, that brings me joy. It really does, so.
Joe Coe 18:04
Amazing. Before I do a follow up question about Comic Con and Marvel vs DC, I want to plug that we have a podcast at the GHLF Podcast Network called Dungeons and Diagnosis if people are interested you could find it at ghlf.org/listen, and it’s chronic disease characters playing Dungeons and Dragons. So a really cool concept for those people that are into gaming and Comic Con and cosplay and all that fun stuff. So I need to know JP, Marvel or DC, favorite characters, where do you land here?
JP Summers 18:42
So I have to say, and this is a tough this is a tough question, Joe. It really is because I was more DC up until I got to meet Mark Ruffalo in person and actually interview him. So my loyalty is now to Marvel and I love I love the Avengers so of course you know that’s just I’m a Marvel Girl, so I definitely if you look at my T shirt collection it’s more Marvel, Captain Marvel, Avengers so things like that.
Joe Coe 19:27
Edward or Jacob?
JP Summers 19:28
Oh my Gosh, Team Jacob all the way.
Joe Coe 19:31
That’s an interesting twist.
JP Summers 19:33
I actually, yeah, and you know what to this day I actually have Team Jacob stuff. I’m not even embarrassed to admit it. But Team Jacob all the way. Team Jacob I will never not be Team Jacob.
Joe Coe 19:48
Well, very good, JP. This was so much fun. I feel like I’m talking to a celebrity. So this is my own Comic Con, but not a comic or a con. What is it con mean- convention? I’m like is that a fake comic? Delight always speaking with you. Your passion and energy for sharing your story is really motivating and helpful and I know that your voice and energy reaches so many people and appreciate you taking time today to speak with me for Talking Head Pain. So thank you so much.
JP Summers 20:23
Thank you for having me.
Joe Coe 20:25
Talking with JP is always so energizing. The way she has overcome her struggles living with migraine is really inspiring and is a great example of doing what you can do while you live with migraine. What is something that you love to do but requires some migraine preparedness? For me, it’s working out at the gym and I’m sure if you live with migraine, you have your way of managing to help you live your best life. Thank you so much for listening to this episode of Talking Head Pain, the podcast to confronts head pain head on. If you like this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.
Narrator 21:04
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
This week on Talking Head Pain, Joe talks with Tom Dabertin, Executive Director and CEO of the National Headache Foundation (NHF). Tom uses his experience of having migraine since his teens to inform the work he does with NHF. Join Joe and Tom as they talk about the lack of headache specialists, being a father while dealing with migraine, and Tom’s role as the Chairman of an annual Pierogi Festival.
Making a difference: A conversation with the National Headache Foundation
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:09
Welcome to Talking Head Pain, the podcast that confronts head pain, head on. I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation. I’ve been a migraine patient since I was a teenager and so has today’s guest, Tom Dabertin. Tom is the Executive Director and CEO of the National Headache Foundation, and through his work is advancing migraine care and bring important information to those who need it. Hey, Tom, how you doing today?
Tom Dabertin 00:36
I’m doing great job. And thanks so much for having me as a guest.
Joe Coe 00:40
And how are you feeling today, Tom?
Tom Dabertin 00:42
You know, I’m feeling pretty well. I am an individual who not only works in the area of headache and migraine, but I actually have had migraines since I was 17 years old. I still remember the very first time that I had a migraine headache. I was actually at a basketball practice in high school. And my coach told me I needed to grin and bear it. And I remember the sharp pain through my head and the the auras and the sensitivity to sound. It felt as though the basketball was literally pounding against my head. And remember that I went home and slept for hours. And that’s, that’s my first experience with migraine. I am fortunate that as I’ve gotten older, my migraines have been less severe as far as headache pain, for example. There was a time and a place where you could pile all the world’s pillows on my head and it would still be too loud and too bright in the room. And I am lucky in the fact that now, my migraines generally are kind of a low grade migraine where I have some impact to my vision. I get the auras, for example. But I don’t get the full on sharp headache. However, after I have a migraine, I still I still have some of the same symptoms. I’ll feel somewhat nauseated during it. But afterwards, I need to sleep. I feel as though I’ve run a marathon for days and just have a, you know, a huge need for sleep and just totally, totally mentally and physically worn out from the from the episode.
Joe Coe 02:27
I can certainly relate to that feeling, especially after. We don’t talk about that a lot the physical and emotional impact that we have to now address after a really intense attack. I want to circle back, you talked a little bit about being teenager developing migraine and playing sports. Did that impact the rest of your high school and college life in any significant way?
Tom Dabertin 02:55
It did. I remember having migraines when I was in college, and you know, remembering trying to study for exams and how difficult it could be. The fact is, is that you know, I’m I’m going to be 62 years old this summer. So, back in the night, late 1970s when you told someone you had migraine, and especially if you were a male, I can remember one professor saying to me, “Nice try. My wife gets migraines, men don’t get migraines.” And so so they just didn’t understand. But you know, times have changed. And I think there’s a more widespread understanding that migraine exists. There is still a lot of misinformation and lack of knowledge on how it affects the individual and what the triggers are and the treatments and the preventative. So there’s still a lot of education that needs to occur out there. But it’s certainly better than it was 40, 50 years ago.
Joe Coe 03:57
You mentioned that you dealt with migraine while in college. Do you have any advice to give to students that are in college who might be away from family support and other safety nets?
Tom Dabertin 04:09
Sure, first and foremost, go to your student health center and seek treatment. Don’t wait. Don’t wait until you get home to see the family physician. We are working as part of the foundation’s initiatives, we have a program called Migraine University, where it’s an outreach program to both students and to practitioners at Student Health Centers throughout the nation’s college and university system to better educate those practitioners and better educate patients. Check when there is a health fair on campus, there’s probably a pretty decent chance that we’re going to have a presence or we’re at least going to have information available for you to better understand your circumstances and your situation. And remember this- migraine for example, it differs in every individual. So the symptoms that I may have may not be the same symptoms that you have. And make sure that you you talk to that health services facility to the staff there and seek some, some treatment Don’t don’t try to. Don’t try to live with it until you get home to visit the family physician.
Joe Coe 05:25
I hope so. And that’s why we do the work that we do and that you do at the National Headache Foundation is to make it better. Did you find that it took a significant amount of time to get diagnosed or after that episode on the basketball court? Did you see a doctor and they tell you that it was migraine?
Tom Dabertin 05:42
You know, I did go see the family physician, the family physician actually just said, “Well, it’s probably stress. And you know, or it might be sinuses,” and didn’t understand that it was migraine. It wasn’t until I actually sought some treatment at at a teaching hospital in Chicago at the University of Chicago, that I actually got relief. And they were able to explain there were certain, you know, there were certain things that I could do to avoid migraine and also to be treated. And I don’t recall what the prescription was that they gave me. But it was just a, you know, it was a miracle drug because otherwise, I had these very, very sharp, sharp pains in my head. I used to liken it to if you took a hot poker and ran it through the roof of your mouth out through the top of your head. That’s how sharp the pain was. And it was really unbearable. Yeah, I remember one specific incident, my son was about five years old. And I can remember him coming into my bedroom. I was you know, trying to sleep off the migraine and had you know, terrific pain. And I remember him being upset and said to me, you know, “Daddy, you don’t want to play with me?” And I’ll never forget that, because I was close to my kids. And it was just heartbreaking. Because he, you know, here he’s five years old, and he didn’t understand. And I guess that’s a personal story that a lot of individuals with migraine can can attest to that. It’s not just the pain and the, you know, the physical the physical exhaustion, it’s the the interruption to family life. I would do anything to play with my son and to be to enjoy those those times. But in that one case, I couldn’t function, I couldn’t stand up, I was unable to, to, you know, obviously go out and play with him on a on a beautiful, sunny, sunny day. So and you know, for a five year old, he didn’t understand that.
Joe Coe 07:50
How did you reconcile those feelings of A, needing to take care of yourself and not being able to and seeing your five year old wanting you to be present?
Tom Dabertin 08:00
Well, it really was the motivation for me to go see someone and get some professional treatment. And that’s, you know, that’s one of the shortcomings associated with migraine is that not enough people go out and seek professional treatment and there’s not enough individuals who provide professional treatment. So the National Headache Foundation has two really key programs as it relates to practitioners. One is a long standing program called the Added Qualification in Headache Medicine. We provide a certification for those practitioners who focus on headache. Sadly, were one of two organizations that provide that certification. And if you add up all of these headache specialists in the United States, it’s less than 1000. And you’re looking at a population of about 40 million with migraine and another 12 million with chronic headache disorders. The ratio of practitioner versus patient is just off the charts and we’re working to we’re working to promote that specialization. At the same time, we also realize that most practitioners, most physicians, for example, if you look at physicians, nurse practitioners and physician assistants, physicians usually receive less than two hours of total classroom training as it relates to headache. And not a lot of continuing education out there. So the National Headache Foundation this past September launched a program called Primary Care Migraine, and it’s a two hour training, two credit hours for those practitioners to be able to they can download it on their computer, they can watch it on their phone. It’s downloadable both Android and iPhone, and you can watch it on your phone. You can watch it on a computer. You can start and stop, there are four modules. When you complete the training you’ll have two hours of CE. You’ll also have a terrific diagnostic tool set; the seven most common symptoms of migraine. And there’s also a full listing of all the acute and preventative therapies that are currently approved by the FDA for the treatment of migraine. Our hope is to get this out to as many people as possible. Now we’re, we’re already certified for, as I mentioned before, physicians, nurse practitioners and physician assistants. In fact, the American Academy of Physician Assistants has certified us, in addition to the certification that we already had, but we’re working with right now with a number of entities to become certified for pharmacists and pharmacy technicians. And we believe that that certification will be available sometime in late June, early July. And we think that’s important because this day and age, a lot of people use quick clinics, urgent clinics that are located in retail pharmacies, and when those clinics aren’t available, or because they are there, a lot of individuals will seek out the advice of a pharmacist or a pharmacy technician and ask them about OTCs. There are plenty of good OTCs out there, over the counter medicines. But unfortunately, there’s a lot of misinformation so, you know, over the counter pain medicines for muscle aches is not going to do much good for migraine headache. And unfortunately, again, because of the lack of training, sometimes those errors are made. So what we’re trying to do is expand the availability of that training now to pharmacists and pharmacy technicians.
Joe Coe 11:54
It’s amazing and working with primary care and pharmacists is so important because so many of us that’s the frontline of health care. And we’re likely not going to see a neurologist, let alone a headache specialist. I was treated by my general practice provider until two years ago, and relatively well but felt like I needed to step it up. Big fan here at GHLF of Walgreens. So anything that we do with pharmacists that we can raise them up we love because they do such important work. In addition to identifying different issues, but also in getting us access to our treatments, like the specialty pharmacist or the retail pharmacist will help you navigate copay assistance programs and all these other things that as a chronic disease patient, as someone living with a disease like migraine, it’s one less thing that we have to do. So I think that work that the National Headache Foundation is doing is is really great.
Tom Dabertin 12:53
Yeah. And we’ve been partnering with Village Medical, which is the operator of the urgent clinics inside Walgreens and also with Kroger, Kroger Little Clinics, which is Kroger’s urgent care facilities and with the Convenient Care Association, so that we can make sure that we’re providing the kind of education and the kind of information that those practitioners really need to serve the larger population. Again, we know that it’s going to be a long time before we can substantially increase the number of headache specialists in this nation. But if we can raise the bar for primary care, and the 650,000 primary care practitioners, including pharmacists, we can make a tremendous difference and positive difference in the treatment of migraine and headache disorders.
Joe Coe 13:50
I want to dig a little deeper about your Why. Why do you feel passionate about this work and why do you choose to lead an organization such as the National Headache Foundation?
Tom Dabertin 14:03
Well, I spent 20 years prior to coming to the National Headache Foundation as a certified management consultant. And I worked with a lot of not for profits. And so I know the not for profit industry well. I also held a very senior position at the Museum of Science and Industry previously in my career. And so I enjoy the not for profit space. I’ve worked in the private sector, I’ve worked in government, I’ve worked in, in not for profits and to me not for profit management and leadership is the most challenging because unlike the others, you just can’t go out and increase revenues. You have to be strategic in what you do. And so I find it very, very challenging and I find it extremely rewarding to be able to make a difference. The fact that I’m able to make a difference in the lives of people who are affected by migraine and having had migraines myself, I can understand firsthand of what they go through. I want to make sure that the next person that has a five year old for example, doesn’t have to doesn’t have to give up that day that they can go out and they can enjoy the day with their children and with their family and do all the things that we want to do instead of endure my another migraine attack, so, to me, it’s very rewarding to be able to know that I can make a difference.
Joe Coe 15:26
That’s really amazing. And thank you for that difference that you’re making. Let’s have a little fun now. I read in your bio that you created the Pierogi Festival in Indiana. Can you talk to me about the Pierogu Festival and what brought you to that?
Tom Dabertin 15:42
Sure. So Pierogi Fest actually is a very well known festival, draws all kinds of national attention. We just recently were named by MSN as one of the best festivals in the United States. Last year, we were named by Reader’s Digest as one of the 15 best festivals in North America. We’ve gotten similiar honors from Yahoo, from the Wall Street Journal, from TripAdvisor and from Oprah Winfrey Magazine. So we’ve gotten a lot of acclaim. It is a festival that is run exclusively, it’s run and organized by volunteers, about 600 volunteers. And it’s held in a small town called Whiting, which I grew up in and my family has lived in for over 120 some years. And it’s located just outside Chicago. And when we originally came up with the idea, we had no idea that of course Pierogi Fest would be so so popular, but it was really a way to celebrate kind of have a fun celebration of ethnic heritage. And one thing about Pierogi Fest is whether you are Polish, Slovak, Italian, Hungarian, you can be your roots can be from South America, from Africa from Asia. People enjoy the festival. It’s wacky, it’s fun, it’s entertaining. And we have one of the best food menus of any festival in North America. Saveur Magazine, which is a food cuisine magazine pointed that out some years ago that our menu is so exhaustive and the reason why is because we limit the number of duplications. So with the exception of pierogis, and maybe a few other East European dishes, we you know, we limit the number of people selling say elephant ears, there might be only one elephant ear vendor, even though we draw over 350,000 people.
Joe Coe 17:38
Now I have a couple of questions about pierogis. What’s the most unique pierogi that you’ve come across?
Tom Dabertin 17:45
So you’re asking actually, when it comes to pieorgis itself, I always say that I don’t eat them so I can save them for everybody else to savor. I have never been a huge fan of pierogis, per se. I think the most unique that I’ve seen is we had alligator stuffed pierogis at the festival. And that was up through the pandemic. I don’t know if we’ll see it. We did have we did have kind of a soft launch last year of the festival again. So I would think that we’ll have alligator stuffed, we’ve had- the ones that are probably most interesting to me, you can bake them, you can fry them, you can boil them, there are so many ways to cook them. I’ve seen them even cooked on an open grill. But there was there’s also fruit stuffed pierogis. And they’re kind of deep fried. It’s kind of almost like a deep fried donut with a jelly inside kind of like a deep fried Pączki. And so those are very popular. But the mainstays that you know, the the cheese and the meat and sauerkraut are still probably the three most popular versions.
Joe Coe 19:01
I don’t know why my head goes to potato.
Tom Dabertin 19:06
Potato is right up there. I’m sorry, I left potato out.
Joe Coe 19:10
Yeah. I hate potato. So is this scandal? Are we breaking news that you don’t really pierogis?
Tom Dabertin 19:17
Well, it’s actually documented. It’s been documented before that I don’t really pierogis. It’s kind of a fun, it’s kind of a fun twist. Again, Pierogi Fest is fun. It’s designed to be a little quirky, and a little outrageous. And so it’s kind of fun that the chairman doesn’t eat pierogi and I have been interviewed a number of times over the years and been asked why I don’t and again my answer is I’m leaving them for you and everyone else
Joe Coe 19:43
That is very noble of you, Tom. How will people find out more information about the National Headache Foundation? Amazing. And I’ll also remind folks that National Headache Foundation has a podcast called Heads Up and I had Lindsay on the show a bit ago, and I was on Heads Up and it’s, you know, if you if you’re into podcasts, and you’re listening to this one, you can go over to Spotify and Apple and all those fun places and type in Heads Up and subscribe there too.
Tom Dabertin 19:50
You can go to headaches.org. We have a great website. We have lots of materials, lots of learning opportunities. I do want to mentioned that we’re shortly going to be launching a series of both live forums and training videos for veterans and for those in the military, because we know that that those who serve this country with their lives are affected by migraine, more so than the general population. And so we’re doing some veteran centric training videos that will be hosted on our website and other social platforms. And those will launch shortly. And you can go to our website though and pull up all kinds of information. You can even pull up a list of individuals who have completed either the AQH certification or the UCNS certification, which makes them headache specialist, or at least they you can find out if they’ve completed the primary care migraine certification. Yeah, it’s really it’s been a very successful program. Lindsay does a great job. And, you know, it’s, it’s amazing. Again, thinking back to my own situation in the 1970s, there was really nowhere for me to get information. What’s great about this point in time is that we have a more educated population than ever, you can go online and you can pull up information on just about anything. If you’re, you know, if your dishwasher isn’t working correctly, you can pull up a video that will tell you what, what’s wrong with your dishwasher. Well, what we’re trying to do is provide information that people can pull up and find out what’s wrong when you have those severe headaches, when you have that nausea, when you have those auras, when you have that sensitivity to sound. We want to we want to give people information. And that’s really our key our key mission, whether the information is for certification for practitioners or information for veterans or information for general the general public.
Joe Coe 22:06
Amazing. Well, I’m all out of questions. Was there anything that I missed that you would want me to ask?
Tom Dabertin 22:12
No, you’re such a great host. You’re so thorough and do a fantastic job, but we’re very pleased to to be able to talk to listeners about the things that we can offer. And we’re looking forward to some continued success with our different programs. And, and once again, I think it’s just key for everyone to understand how many people are affected by migraine, and by chronic headache disorder. It’s not, it’s you know, it’s not just something that maybe your partner or your spouse or your child has. The fact is, is that it’s 52 million people over age 18 that are affected. It’s a huge, huge number of individuals in this nation and and it’s our goal at the National Headache Foundation, to try and educate everyone on how those how those headaches can be avoided, how they can be treated, how they impact, can be reduced and we’ve got we’ve got a pretty, pretty large encompassing mission and a lot to do but we’re proud to do it.
Joe Coe 23:22
Amazing. Thank you so much for your time.
Tom Dabertin 23:25
Thank you.
Joe Coe 23:27
Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain, head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.
Narrator 23:43
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this episode of Talking Head Pain, Joe is joined by fellow migraine advocate and friend Alicia Torborg. Alicia serves as the Executive Director of the Association of Migraine Disorders, an organization built on the pillars of research, education, and awareness.
Listen along as Joe and Alicia discuss research being conducted by AMD, the duo’s perilous journey hiking Camelback Mountain, the history behind #ShadesForMigraine, and Alicia’s most rewarding moments working in migraine advocacy.
Climbing to new heights: A discussion with the Association of Migraine Disorders
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:09
Welcome to Talking Head Pain, the podcast that confronts head pain, head on. I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation. I’m also a migraine patient, have been so for 20 years, so I know what it’s like to live with this disease. This week, I’m speaking with Alicia Torborg, a dear friend who’s also a migraine patient and the Executive Director of the Association of Migraine Disorders. It’s an amazing organization focused on migraine research, education and advocacy. I’m here with a really good friend and powerful leader in the migraine community, Alicia. Alicia, how are you feeling today?
Alicia Torborg 00:47
I am feeling well today, as a matter of fact.
Joe Coe 00:51
That’s great. And can you tell us a bit about what you do and your connection to migraine?
Alicia Torborg 00:56
So I’ve had migraine for most of my life. It started when I was about 10 years old. It has come and gone and taken different shapes over the years. And as I got older, they were no longer calling them migraines. They were calling them tension headaches, and they were debilitating. They were every single day. You know, at one point they were- I was going on about five months of chronic pain every single day and nothing was helping. I saw a bunch of different doctors, a neurologist, homeopath, chiropractors, I did yoga, changed my diet, did everything I could possibly think of and nothing was helping. So finally I said, “Let me talk to an ear, nose and throat doctor and get allergy tested, maybe there’s something I’m allergic to.” And he had asked me a ton of questions and finally had said, “They’re definitely still migraines, and we should treat them as migraine.” So, you know, we started a different regimen of medications. Everything is you try and see what works. And you know, some things helped and some didn’t. But I worked closely with him as a patient-doctor relationship over the past few years. But after about a year, I had said to him that I was going to be changing careers. My background was in finance and banking. And I was going to go out on my own and do some program management. And he was asking me more about what I did. And he said that he needed an Executive Director. So here it is seven years later. And if you had ever asked me five years ago, where do you think you’re going to be in five years, I never would have said in the nonprofit world in migraine, ever. But here I am. And it’s been such a rewarding, terrific ride. I still have migraines, though.
Joe Coe 02:38
I think many of us can relate to that. Tell us about the Association of Migraine Disorders. What’s your mission and what do you do?
Alicia Torborg 02:45
Yeah, so they were established in 2012. And like I said, he’s an ear, nose, and throat doctor. So many people say, “Why is he leading this organization? Why would an otolaryngologist be doing this?” But he was seeing so many patients that were coming in saying, “I’ve got to have sinusitis, you know, I’ve been on antibiotics, but they’re not helping. I get scans and they show I’m clear,” but they kept being treated for sinus infections, when in fact, so many of them were migraines. So he started this organization, this foundation in 2012. And our focus is to expand the understanding of migraine through research, education, and awareness. So we’ve got different programs under each one of those pillars.
Joe Coe 03:27
I am a big fan of your organization and supporter, you do amazing work. Can you talk a little bit about the comorbidity project that you recently launched?
Alicia Torborg 03:38
So, we recently hired, she’s an RN, and she’s got a background in writing and an interest for just researching. So we have found over 75 comorbid conditions that are common to have with migraine, ranging from endometriosis to anxiety and depression, even Alzheimer’s. But there are 75 of these conditions. So what we’ve done is written about the correlation between these two and then given suggestions on what type of doctor you should see when you have both of these conditions, medications you should consider and avoid. But we also align with allied partner organizations. So we realized that we may not be the expert with depression or mental illness. So we engage with these allied partners and work with them. They’re all thrilled just to be working with us that there’s a, you know, more of an interest in these conditions.
Joe Coe 04:33
Many of you may not know Alicia and I are from the same county in New York. It is the smallest county in New York. And that means that we share a special bond and I got to live that bond with Alicia and some of our colleagues at the Association of Migraine Disorders during a hike in Scottsdale, where I thought they were taking me out to kill me. It was a very intense hike. I said, “Yeah, I could do that.” It was an actual hike. In New York when I think hiking, I think like an incline, you go up a little bit, you know, in the forest. This was a pretty intense hike. Can you talk about your history doing this at the American Headache Society meeting and, and what was the hike like that you took me on? You could explain it better than I can.
Alicia Torborg 05:22
So several years ago, we started this hike with the founder of AMD, who happens to be about six foot four, very long legs and my other partner at AMD, who was also blessed with height. I am not, I’m five two on a good day if I really stand up tall. So I went for half the hike with them. But I was with another person who just wasn’t quite comfortable going to the top, which I think is equivalent to 180 stories. I would have to fact check that I’m not positive. But so I had gone halfway up once before. So then I got Joe and I said, “Joe, we have this fun day, and it’s adventure, it’s a great adventure. Come with us, you’re gonna have a blast.” So Joe did and I think you and I are probably comparable in size. We went up this hike with these other two, and I would say they would be qualified as athletes. I mean, they’re both pretty athletic. You and I are in good shape, Joe. But so we went up this hike that was perilous. I mean, it was climbing hand over hand, crawling up rocks. It was above my skill set. For sure. We did it and I did it in running shoes. Like really wrong, wrong choice for for the for the hike, I was thinking New York hike. Now I have hiking shoes for next time. Just so the audience can really feel what I felt, I get to the mountain. It’s Camelback was the name of the mountain. And there are signs that are like, “It’s not too late to turn back, you could die.” And I’m like this is really comforting. But then I said, “You know what, if this is my time, and I’m gonna go out on a hike, I’ll be with good people in a beautiful place. And it’s meant to be.” So we did it. And it was really it was really cool and a great bonding experience and something that I definitely cherish and brought me closer with your organization because I literally felt like you guys had my life in your hands. I trusted you and you did a great job with it. I had such a great time, really fond memories.
Joe Coe 07:40
What are some things that you have you learned in the past seven to eight years of doing this work professionally? You’ve been a patient, you’ve been a person living with migraine for so long, professionally, what has been some of the most rewarding moments for you in this work?
Alicia Torborg 07:58
I would say over the past few years, I joined this council, Disparities in Healthcare Advisory Council. And they would each month, they would have experts come in and really teach us about different cultures. And I was so eager to, to learn. You know, I feel like I’ve lived somewhat of a sheltered life, some would say a privileged life, that I had so much to learn. But I would also come to these meetings saying, “I can’t change the world. I’m only one person.” It’s easy to get overwhelmed, and put your hands up and say I can’t do anything. But I would go to these meetings and say, “What’s the one thing I can do? What is the one thing I can walk away tomorrow and do something personally or professionally?” And I realized there were so many things I could do professionally, you know, to help. And you think like with this little organization, this little nonprofit, what can you do? But it’s inviting scientists, you know, people of color to you need to have a seat at the table, you need to be involved in, in research. We need more scientists that are from diverse backgrounds, and less people that look like me, and you know, more color, more background. So one of the things that we had done is we created this, they’re called Health Care Provider Kits and they’re really to help clinicians diagnose and treat migraine. So I know with me, like I said, I have good health insurance. I’ve always had good employment, I live in a nice area. It was really hard for me to find a good doctor. So imagine being indigenous and living on a reservation. You can imagine how difficult it would be to find appropriate health care. Imagine not having medical benefits or a good job or a car to drive yourself to it. I mean, there are so many people that obviously have so much less than I do, than we do. So we really made it our goal is to get these free educational tools out into the hands of clinicians, not just doctors, but nurses and psychiatrists, and dentists and people who work in clinics and emergency rooms and in on reservations, get these materials out to these people to help diagnose and treat people, which, by the way, migraine is so much more prevalent in these communities as well.
Joe Coe 10:23
I love what you said, Alicia, about the one thing that we can do. I think that’s something that we all can think about in different ways. We talk about really hard topics working in healthcare. People are feeling isolated, alone, people are struggling to get access, people are struggling once they find a good doctor to be able to afford and find the right treatments. So we often are fighting all these different battles and putting out all these fires. And as advocates, I think it’s important to take a step back like you did and said, “You know what, I could focus on one thing, and what’s the one thing that I can be impactful and do.” And I think that is a really good way to tackle these larger problems because you’re one thing adds onto my one thing, adds on to the National Headache Foundation’s one thing and the American Migraine Foundation’s one thing and it’s just a way that we all build and and do this work collaboratively. And I think that’s a really smart and sensitive way to approach it. So you didn’t talk about one of my favorite programs that you guys do, which is Shades For Migraine. Light sensitivity has always been one of my issues. Even when I’m not having an attack I’m light sensitive. You see right now I feel fine. I have all of my lights off, just natural lighting. So when I came across Shades For Migraine, doing this work at Global Healthy Living Foundation, I was like that is a cool event. You ask people to wear sunglasses to raise awareness around migraine. Can you talk a little bit more about that event, how it started, and how many people you reach?
Alicia Torborg 12:07
Sure. So and I’ll back up even a little step before that. So many of our programs, like you’ve heard me talk a little bit about research, a little bit about education, they are so important to us, they are pillars and to my core, I believe they’re just so important. They’re serious programs, so you don’t get a lot of laughs in those programs. Like it’s good, serious work. Shades For Migraine, it’s a fun program. It’s easy to participate in. The only ask is wear a pair of sunglasses, take a picture, share it on social media. And it can be anyone. It could be kids in a school, it could be your parents in an assisted living, or you know, anywhere. It could be a Headache Clinic. It’s just really raising awareness about migraine. So we have these purple sunglasses, which you’ve seen, I know you have some. They are kind of the signature symbol for it. But we say any, you know, sunglasses will do but we’ve recently unloaded 15,000 pairs of sunglasses. So now I can add manual labor to my to my resume. You’re getting ready for the hikes and all the physical activities by lifting sunglasses, it all it all ties together. Right. But it is such a fun campaign. A few years ago, prior to COVID, we all went down to Times Square and we’ve gone to the Today Show. We try to get on the Today Show every year. We’re out there in the square first thing in the morning. And you know, we’ve met Al Roker and Hoda and just have always had a great time. But we went to Times Square a few years ago and handed out 1000 pairs of sunglasses. And we brought a local newscaster with us and they were on tour buses and just interviewing people on the streets. And it was amazing. It was- people were crying. Some people we interviewed were actually crying because they could not believe that there was so much attention to a disease that really does not get a lot of attention. I love the event. It somewhat inspired a conversation I had with a fashion designer that we work with for New York Fashion Week around arthritis, Michael Kuluva and his line, Tumbler and Tipsy. Said to him last year, I was like, “You need to do something for migraine. Can you design a shirt,” and he’s like, “I’ll design a pair of sunglasses.” So he designed a pair of sunglasses for the fashion show last year that I got to wear. It was remote modeling so everyone modelled from their their locations because it was during the middle of the pandemic and Shades For Migraine inspired that. Because migraine and sun and light and sensitivity and sunglasses, that’s something that people can relate to. And you guys have done an amazing job in amplifying and creating this really fun, like you said, grassroots campaign that’s super accessible. Most people have a pair of sunglasses that they could grab and put on. There isn’t, you know, a large entry to participate, you just do it, raise awareness, and feel good and feel proud of living and thriving with a chronic disease. So I love Shades For Migraine, I’m a big fan. Is the website shadesformigraine.org? It is.
Joe Coe 15:20
So I encourage folks to go to shadesformigraine.org and definitely support that program. It’s a really great one.
Alicia Torborg 15:37
Thank you. Yeah, it’s fun. And we have people participating internationally. So in many different countries, and people just love to be part of it.
Joe Coe 15:45
I meant to ask this earlier, I like to start the episode with, if I’m talking to someone that has migraine, if they can remember what their worst migraine attack was like. So for you, what was that like? How did you feel? What did you think?
Alicia Torborg 16:03
I can remember back to being a child. So I was about 10 years old, and they would come and they were so terrible. And they would start with an aura. And I don’t really get auras that often anymore. But they would start with an aura. And then I would get this unbelievable pain. This was a recent realization in my life. Teachers used to ask me, “Are you being bullied?” And I would say no, because back in New York, you never told on the kids that were bullying you. But I totally was, I was being bullied and I was being chased home from school. And I wonder if that had anything to do with like, that anxiety, I wonder if it had anything to do with the actual migraines or not. But it’s funny, I never would have told on anybody either. Now as an adult, I’m thinking, gosh, if I told them them, they would have gotten in so much trouble. These were like New York City cop’s kids, like strict parents. Those kids would have gotten in so much trouble had their parents known that they were chasing this little girl home from school. Those were the worst. Like, emotionally, they were terrible times but the physical pain and the nausea and the sickness that I would endure. I can remember begging my parents to take me to the hospital, or to the doctor so they could put me to sleep. And they would give me some kind of a shot that would literally put me to sleep.
Joe Coe 17:25
Well, that’s really- well, I’m sorry that you experienced that as a young person. And we fail our young people as a society by allowing a climate that creates bullying, and it happens to this day. That concept in adverse childhood events and trauma is something that is really of interest to me. I wrote a little bit about it in a Medium piece that I published a couple months ago around language and stigma. And I too wondered, like you do, as an adult looking back, did being bullied as a gay kid in Rockland County, did that impact, did that create more stress and make me, if I was predisposed to having migraine, had me had migraine attacks earlier or more intense. And I wonder that and there needs to be a lot more research on that connection. And it’s something that I’ve publicly called for researchers to look at. I know our organization, as does yours, would would like to see some more factual as opposed to anecdotal, because this is us, you know, bring our stories here around that. Because I think that a lot of people share that experience. And if you are living in a culture that is putting you down, or if you’re being bullied or if you’re not feeling safe and secure, what impact does that have on you if you are predisposed to having migraine? That’s a really interesting research question that that should be addressed.
Alicia Torborg 18:57
I imagine there’s a connection between stress and anxiety and, and migraine or other diseases, too. Was there anything that I didn’t ask that you would like to cover? I only say, advice to people is to always be looking for something. I know with me, I always try to think like, “Why do I have migraine right now,” or, “Why am I in such a bad cycle?” Is it something I’m doing, eating, stress? Something, am I doing it? Is it environmental? I’m always looking for reason. And sometimes there’s just not a reason. Or maybe there is and we just don’t know. And we may never know what the reason is, just your luck or genetics or whatever it is. But I’m always looking for the next solution, something that works. And it’s combination therapy, it’s maybe it’s glasses, maybe it’s neuromodulation devices on top of medications and supplements. But I know it can be so easy to get frustrated and just sit in the dark and just be like, “Oh gosh, this is my life.” You know. That’s one piece of advice. My other advice, and this helps me so much is, and not everyone can do this all the time too and I totally get that if you’re vomiting, you’re not going to go out and go for a walk. You’re just not, you can’t, it’s not reasonable. But I can’t tell you how many times I’ve really felt bad, like, the pain is bad. I’m in a dark place. And I make myself go out and go for a walk. And like, you know, I could lay in bed and that’s all I think about, or I could be outside in nature with my dogs. And at least I’m enjoying that walk with my dogs or my kids or just by myself. And it takes my mind off it a little bit. And sometimes the endorphins just help. So those are the two things that really seemed to help me. Really great pieces of advice. We discussed a little bit of the second part in an episode that we did with Dr. Lindsay Weitzel on Outfoxing Your Migraine, and it surprised me that she was talking about how she or someone that she works with will listen to music, or go under their covers and watch a TV show and listen to it if they had the light sensitivity or vice versa, to distract their mind from some of the pain. And it seems so counterintuitive. But I’ve definitely tried those tactics if I’m not feeling great. And I’m able to go out for a walk or listen to music, or do something that I know makes me feel good. And if you have to stop, you stop. And I’ve certainly done that too. But it’s the your point, Alicia, is the trying. And I think what I’m hearing you say is is that we need to provide space for ourselves to give ourselves the gift of doing all that we can to make ourselves the best possible version of who we are. And that comes in all different ways. Right. I agree.
Joe Coe 21:46
Well, this was so nice. Thank you for being so open and sharing and really appreciate your organization and all the hard work that all of you do day in and day out to support migraine patients and the people that love us. So thank you.
Alicia Torborg 22:20
Thank you, thank you. It’s important work and I’m so passionate about it. So I feel blessed that I’m able to do this. So thank you for listening. Thank you for having me.
Joe Coe 22:33
Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain, head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.
Narrator 22:49
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this episode of Talking Head Pain, Joe is joined by Nicky Smith, a migraine and dizziness advocate who was recently featured as a contestant on the hit trivia show Jeopardy. Nicky shares their experience about having chronic migraine and dizziness as well as why it was important to discuss the conditions on the national stage. They also talk about the importance of building a strong community of migraine superheroes.
Vestibular Migraine for 100: A Jeopardy Contestant Raises Awareness
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:10
Welcome to Talking Head Pain, the podcast that confronts head pain, head on. I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation, and I’ve lived with migraines for over 20 years. Throughout my journey, I’ve rarely seen migraine discussed on national TV. But today’s guest brought migraine awareness to one of the biggest stages in the world, Jeopardy. Nicky Smith is a patient advocate and debate coach and a recently featured contestant on Jeopardy.
Nicky Smith 00:39
For migraines, I’ve gone to witch doctors, I’ve done healers, I’ve done everything imaginable. Grand Master Danadoost. Like I’ve, I cannot s**t on any form of science or astrology or anything. I’m open to anything.
Joe Coe 00:55
Who is Grand Master Danadoost?
Nicky Smith 00:57
Grand Master Danadoost, he’s a guy that just like, does readings and is like a Master Healer, and he’ll give you his CD and he’s up in the hills in some mansion in the middle of nowhere Bay Area. You know, Murrin Napa area. And that was just very bizarre. And he’s just, you know, the, the witch doctor actually knew a lot about me that I don’t think I told them. So that was actually interesting, but she wanted to kill a good amount of animals behind me. And I don’t know if I would have really believed it. So, a lot of people said I should have done it in retrospect, but you know, she’s still there. Probably. So who knows?
Joe Coe 01:33
Well, I mean, we’re kicking off Talking Head Pain talking about animal sacrifice. This is a new area of exploration for us. So thank you. I’m really excited to talk with you, Nicky. How are you feeling today, Nicky?
Nicky Smith 01:48
You know, dizzy. But beyond that, you know, yeah, getting by, getting warmer, so not a fun migraine trigger. But in many ways, life is good. So I’m good.
Joe Coe 02:01
Some of us may have seen you on Jeopardy, which is really exciting. How was that experience being on Jeopardy and using that platform to raise awareness?
Nicky Smith 02:11
Yeah, it was definitely intense. Imagine, you know, the brightest light you can imagine right over your head right in front of you, you know, moving lights, moving cameras, all that. Pretty sure I blacked out through a good chunk of it. I don’t remember a lot of it. So it’s funny watching yourself later on TV and being like, “Oh, at least I got that answer right.” Things like that. The interesting part is I had so many people, even in the migraine community, you know, that work with migraine organizations being like, “You look so normal up there, you look like there was nothing going on.” And in my head, you know, obviously rooms spinning just, sharp like razor pick in the head and throughout the spine, you know, super dizzy, super nauseous, super fatigued, but you can just look completely normal. And so I think just people to see that, that someone can you know, you’re on live TV look like everything’s under control, but in your brain is chaos. So that was interesting. But just you know, the best part about it was being able to talk about the condition, having so many people reach out and talk about how isolating it is, how they’ve never heard dizziness, or, you know, vertigo or even like, yeah. How often you even hear the word migraine on TV or in movies? I think other than Lucille Ball and Arrested Development, the word Vertigo is, other than that Hitchcock movie, which isn’t really even about it. So just to be able to talk about a condition that’s so prevalent, that affects so many in such a horrible way, and that’s not mentioned at all was great just to have so many folks be able to connect. And you know, we’re able to, I’m planning to start a support group in the Bay Area from this, I’ve been able to just get, share and connect with so many folks with resources from this. So that was the best part about it. But Jeopardy, you know, it was a whirlwind. I can, you know, get them more into that. But it was definitely a blur, to say the least.
Joe Coe 03:48
That’s so interesting. A couple of things; one, and I won’t say what episode it was, but I recorded a whole podcast that I don’t remember doing. I can see myself, I hear myself, I’m like I was there. I did it, but it was during an attack. And you know, it’s amazing Nicky, what we can push through living with a chronic disease that we’ve lived with for so long. I definitely want to dive a little bit more into the experience about Jeopardy, but I created a little Jeopardy game for us to play which is more on the gay side than the Jeopardy side. I’m going to call it “Category Is” and if you could just answer with a sentence or a word, we can maybe dive into some of these questions a little bit more, but I thought it might be fun if you’re willing to play “Category Is” with me.
Nicky Smith 04:39
Oh yeah. Oh, I’ll play anything. Oh, all the games.
Joe Coe 04:44
Category is, the feeling you had during your worst migraine attack.
Nicky Smith 04:48
It’s when I first had my major you know, vertigo migraine attack. Geez, 11 years ago now. I was in my office. I was starting my PhD program. And it just felt like someone picked my chair up, spun it around 1000 times, and just kept smashing my head into the ground while they were spinning. It was like, you know, like Thor or something, picked up my chair and just whirled it around with such ferocity and anger and pain and chaos. And then I just remember calling the nurse hotline and being like, “Hey, I can’t really see anything. I can’t sit still or stand still. Everything hurts. My head keeps moving. My body keeps moving. It feels like they’re going in different directions. I don’t know what to do,” you know, you feel like you’re dying. You’re like, “This is this is horrible. Why won’t this stop?” And they always go, you know, “Come to the ER right away.” You get to the ER, and then they, you know, so but it’s it’s that was yeah, the first attack was the scariest because I didn’t know. You know, I knew I knew vertigo existed. I thought okay, the room spins. But it was just such a violent, chaotic, horrible. Just just the worst thing I could imagine that I wish upon no one. And then you learn that that’s, that becomes your norm. You know, as you said, you find a way to push through it and that it literally is my norm but when it first hit, it was just horrendous. Yeah.
Joe Coe 06:15
We’ll do one more. And I guess this is for Double Jeopardy. That’s the right term.
Nicky Smith 06:21
There you go.
Joe Coe 06:21
I hope I don’t get dragged for my lack of Jeopardy knowledge.
Nicky Smith 06:25
You’re good. You know, I didn’t even, I hadn’t watched the show for a year and a half when they call me. The only reason I watched it before was for the initial audition to get on the show. I can’t watch Jeopardy. It moves so quick. I told him I’m like, “This show is way too dizzying. I can’t watch it.” So I don’t blame you at all. But hey, whatever. Yeah, go for it. Got to talk about migraine on it at least.
Joe Coe 06:48
Amazing. So category is, what it means to be a queer person navigating the medical system.
Nicky Smith 06:54
Yeah, I’m, you know, in a lot of ways I quote unquote, pass. You know, doctors just look at me and go, “Oh, how’s he going?” Or, you know, they’ll assume my partner of anything, or they’ll assume gender, they’ll assume gender of a partner, or they’ll assume this. And, you know, it can it’s that, like, million little cuts, and you just, you know, in some ways, kind of go, just give up. And for me, I you know, I navigate with a family where I don’t really, you know, care to educate them about things like pronouns and stuff. It’s just, they’re, they’re isolated, and it’s just not their, their world, they don’t really interact with it. And I would just, it’s just, I have so much, so little spoons and energy. So I really kind of control who I think I can you know, educate and, and change. And things with doctors, you only try so many times, and you go like, “Alright, just fine. Misgender me, call me what you like.” So that’s, that’s one aspect of it. I mean, the other one is just the cost and the fear of life in general with, you know, being queer and being disabled. You know, your employer can fire you for really any reason under our system, they don’t have to say it’s because you’re queer/disabled, they can say, “Oh, because you came in a minute, late that one day,” or, “Because you looked at me slightly weird,” which for someone that can’t look at screens, and does tons of Zoom meetings, I mean, I guess I’ll say this now, that’s why I look away from the screen, because I can’t really look at screens long at all. And so literally, you know, an employer or a doctor couldn’t make up any reason for not wanting to see you again, and not wanting to support you. And when so many treatments that we need aren’t covered by insurance. I mean, right now, I paid I think $6,000 out of pocket, just to see one provider, which isn’t their fault they’re not covered. They’re a great provider. But the treatments they provide that we need, insurance industry doesn’t care about dizziness and doesn’t want to treat it preventatively because it’s so subjective in their mind. And it’s, you know, a lot of people they view it as people complaining to get meds or what have you. So I think you add that with queer folks who generally disproportionately have more difficulty finding stable jobs, stable housing, stable health care. I’m, you know, privileged in infinite ways, but I think it’s especially true for fellow like queer and trans folks, especially folks of color, low income folks. You know, folks with disabilities. So I think just, you know, navigating the relationships with the doctors, hopefully finding ones that are at least kind and patient, and then just finding advocates and organizations, hopefully, that can help you. Because that’s a difficulty too, especially with our insurance, gatekeepers to our care. And just, I try my best to share resources with folks so that we can hopefully find our ways around how this system, you know, excludes us and doesn’t want us to provide the care, to get the care that’s needed. But it’s definitely exhausting. That’s that’s a good word for it. You know, they wear you out to the point where like, “Should I keep trying treatments, or is this just going to be the rest of my life?” That’s a pretty horrible position to put someone in with a chronic disability like. The system basically pushes them to the point that they go, “Should I just give up forever and accept for the rest of my life, I will see the world just through a chaos spinning, horribly, pained, fatiguing, nauseating, just forever drunk on a boat that’s spinning down a hill.” And that’s a really bad place to put humans in through a system that’s supposed to provide, you know, health care and treatment.
Joe Coe 10:32
It’s interesting about talking about gatekeepers. I was on my colleagues podcast, The Health Advocates, and I shared about my experience getting on migraine treatments, and how I was on the phone with our insurance company for like, the third or fourth time. And I finally said, after getting pushed around for over a month, “What’s the cheat code? What do I need to say?” Because it kept getting pushed back based on a doctor not checking this box or this not like it was this bureaucratic nonsense, like it was no real reason. Except they were delaying the treatment because it saves them money in the short term. So I asked what the cheat code is. And there was a really good episode on The Health Advocates around the cheat code for insurance companies and basically asked them like, “What do you need me to do exactly?” So yeah, that’s a really powerful how you describe that. We’ll stop playing this game, we’ll get back into the serious interview, standard podcast, I read a little bit about you, Nicky, and there’s a couple of areas that I thought were really interesting to explore. You are really connected to X-Men. What was it about X-Men and Marvel that drew you to that universe?
Nicky Smith 11:46
So, so two things I’ll say before I forget. One, that cheat code, you found, if you wrote that down, or you remember any of it, if you would be down to put that, you know, in my Twitter, @NickySmithBucks, Nicky, N-I-C-K-Y. I have a doc, and this is just a you know, I have a document link that anyone can add to, anyone can view, anyone can share. And I try to put any resources on there that I’ve heard about that, you know, I’ve tried and then other folks have added. And I think having like that cheat code on there, you know, for example, there’s things like when you appeal something, you can say, “Hey, this treatment that I need here isn’t close enough to me elsewhere.” And that’s like, for example, a coded language that insurance companies will go, “Well, I guess you can’t drive 50 minutes away, fine, we’ll let you go to this practitioner closer to you.” There’s like certain languages like that in the appeals that I just think, as you mentioned, you know, or, or numbers, you can press to skip the automated system. So we don’t have to hear the music. And then people talking over the music, which is, I think a big migraine trigger is having to hear two things at once. And I love that hospitals don’t realize that when you have to listen to their, “We’ve won the best hospital program in the past five years.” And they’re doing it over super loud jazz music, and it’s like, great, I have to listen to this on for an hour to make sure I can complain to your insurance company that you’re not covering me or what have you. So yeah, that’d be great to share that stuff. But yeah, in terms of the X-Men thing, I realized that a doctor, the first neurologist that I saw for vestibular migraine sent me a resource list over the UC, like, University of California San Francisco Hospital messaging system. And no one told me I had access to that messaging system. I didn’t know the messaging system existed. And then six years later, when I was looking for my medical records, they said, “Oh yeah, go to this message, this system.” I see the message, they sent every single thing that I wish I had tried right away, and I had to wait six years to see it because no one at the hospital mentioned, “Oh, we’ll be sending you a message with with what you should do post treatment to actually help yourself.” And so I went you know, “Screw this,” which I wish I did earlier on and I got every single book about migraine, vertigo, dizziness, the brain, neurology. Anything I could find, and I read probably like 150 books in a summer. You can get them all free from your library, you can request them from other libraries through the loan program. And one of the books talked about how migraineurs are considered the some of the original superheroes because when a storm was coming or the rain was coming, the person with migraines in the in the group or in the tribe would stop and kneel and just grab their head and like or point up at the sky and then rain would come, you know, a few hours later. Then and then people would know, “Oh, we have to stop and we have to set up camp because rains coming because our superhero let us know that the rain was coming.” And so I like the idea that you know, migraineurs are considered the original superheroes but also like, you know, I get that the superhero movies are dominating everything. And they’re they’re crappy a lot of ways. But when you think of X-Men, all of them have different, you know, disabilities, quote, unquote, that are viewed they’re viewed as freaks. I think X-Men just their whole, they’ve always just been kind of like the freaks. They, there’s a lot of community there. There’s the school, there’s the education of each other, the education of the young folks. And I think that’s like the best thing, like the queer community and the chronically ill community, the disabled community can do is make young, is helping young folks not feel isolated. Is to help young, like educate and advocate with young folks. Is to have our community be able to assert ourselves in the world, and advocate for ourselves. You know, we’re superheroes in that way that we’re able to survive this. Like, if you were to give, I at least say if you’d give, like my nausea, or my fatigue, or my body pain, or my head pain, or my dizziness, even my congestion, even my tinnitus, my phantom smells, my like, if you were to give any of my conditions to anyone else, they would fall on the floor, roll around, scream, cry, say, “I’m gonna die,” call 911, say, “You need to come get me now.” And just the fact that there’s so many of us that live with that constantly, for over a decade or years, is like, I don’t get you know, I’m, I’m whatever. The young people and other folks that are even, that are more screwed by our system that they need the platform that should that that should be front and center. And I’m just saying there’s so many of us that survive like this. And that’s like, you know, the fact that we can survive, that is just is a beautiful thing. It just shows how powerful the brain is. And how powerful our community is. It’s like infinite people have helped me in infinite little ways. And it made life worth living with this, you know, so, and that’s a lot of fellow queer folks, a lot of fellow disabled and chronically ill folks, you know.
Joe Coe 16:39
And that’s super interesting. I always felt connected to that story. Because as a, as a gay person in a fairly conservative area, X-Men used their their differences, and it was a strength and it was something that they drew power on. And while they were marginalized by the community, they created their own. And they were celebrated, which was really, really empowering. And I think that Nicky, you said, it’s so well, talking about the connections between the chronic disease community and the LGBTQ community and how we often build our own systems of support, because we might not have it within our homes or within the medical system. We aren’t heard, we aren’t believed, we aren’t empowered to, you know, take control of our lives. So I think that story with the X-Men is a really good one and really interested me. So I’m glad that you like that, too. Do you have a favorite character?
Nicky Smith 17:40
Yeah, you know, it’s funny, like Storm is just the hair is so great. Just the fact that your condition gives you such cool hair. And if my hair wasn’t pink, I have tons of you know, the salt and pepper. So if some day, I just get that natural, like streak silver streak through and you know, Halle Berry. Great. And I don’t know who plays the new young Storm is great, too. And, but also the dude that puts on, I think Evan Peters plays him, where he puts on the glasses and just runs around and like messes with the cops and the military. And I always forget that dude’s name that can run really quickly. That’s just how I like, see the world is I feel like and how I move in the world. I feel like there’s multiples of me every time I take a step that stay behind me because I have you know, such dizziness where the world is moving. It feels like I’m still moving behind me. And so I’m like the least cool version of that superhero. But I just love that. The idea of being able to, you know, move at the speed of light, all those things. When you know, I’m moving at the- light scares me. So yeah. But those, what about you?
Joe Coe 18:45
Storm is my favorite too.
Nicky Smith 18:46
There you go.
Joe Coe 18:47
Storm, and you’re talking, Storm is amazing. And who doesn’t want to control the weather? I mean, like.
Nicky Smith 18:51
I know for us too. Yeah.
Joe Coe 18:54
Like Storm. No, go away. And I think you were talking about Quicksilver, Magneto’s son.
Nicky Smith 19:00
Yeah, what a great name.
Joe Coe 19:02
Amazing. I love, you’re the second person that I’ve had on Talking Head Pain that we’ve talked Marvel, so I might do a spin off one day. Want to just, last couple of minutes that I have with you want to turn back to Jeopardy. And I read that you’ve received a lot of messages from fellow migraine patients after seeing you on Jeopardy. What were some of those messages and how did that make you feel? And has it given you a different purpose or outlook during your migraine journey?
Nicky Smith 19:35
I used to be really big into organizing and advocacy. And then my chronic, you know, vertigo and vestibular migraines hit me, and it was just impossible to keep organizing. And I was bedridden for months. I can’t really do you know, like protests and marches really anymore. I can’t. I used to speak in front of thousands of people. That sounds pretty horrible now. And I used to do tons of screen work, you know, emailing thousands of people and coordinating meetings and just doing endless this kind of stuff. And I just, I just can’t really anymore. But I’ve tried as best as I can to, you know, share resources and do things with folks, you know, who have had brain injuries, I’ve had a concussion, who have these conditions. You know, I only know of a couple people that have had vestibular migraine, you know, 24/7 for over a decade. And it’s just but I hear, you know, cases about, like, especially kids with this. And it’s hard to tell a kid, you know, “Hey, get out of bed, this is your new normal.” But there are kids that I know that, you know, I’ve heard of, that are just they can’t go to school, they’re bedridden with this condition, because, you know, how are they, how are they gonna want to go to school if there’s constantly dizzy? How do they think they’d be able to go to school? And just parents feeling super isolated and alone with this. And the young people in general feeling isolated, and alone with this, and scared. And so I know, when I went to Jeopardy, I think initially, they were like, “Oh, you could talk about how you walk your cat,” and things like that. And I was, like, I knew the best thing that could come out of it is just being able to say the words, “migraine and dizziness,” and you know, “chronic dizziness” on TV. And like, no exaggeration, I’ve probably gotten like 500, 600 messages. It’s only been a couple of weeks at this point. It feels like it’s been so much longer for in every way from people throughout the world. And like the number one thing is, “I’ve never heard anyone else with this condition talk about it. I feel so isolated and alone with it. This is, I can’t go to the grocery store, I can’t do this, I can’t do that. It feels so isolating.” And just be able to connect people to resources, people connected me with resources, like I’m seeing a physical therapist now that’s helped someone with their episodic dizziness. And the physical therapist is seeing me on a sliding scale. And, you know, because my case is unique, which is, you know, a gatekeeper thing like, “Hey, my case is so unique. Will you see me for less maybe,” you know. But just like seeing all those messages, being able to connect people, being able to like, I think it energizes you. And I think, you know, a lot of people talk about the fear of being an advocate, and the fear of, of reaching out and being public with stuff. And I think it, yeah, I’m in a privileged position and lucky position to be able to do that. But I think a big thing for a lot of us is how fatigued we are. And how just debilitating our condition is. And I’m shocked by you know, the messages I’ve gotten, and the support I’ve gotten. I think that’s that enlivens you and energizes you to want to keep doing this work and reaching out to people, which then makes it a stronger community so that when you do have an attack, or when you do when you aren’t able to fully be there, other people can step up because they know what you’re going through. Like from Jeopardy, I would say the greatest experience, like one of the greatest experiences in the entire history of my life, is I finally met another human face to face with vestibular migraine. And it’s because they saw the article someone wrote about me on Jeopardy, and they’re like, “Oh, my God, I live like 10 blocks from you.” And there’s someone else with episodic vestibular migraine that lives five blocks from me. And I thought that was like maybe there was someone in Palo Alto I heard about, you know that as this, but I’m able to look, I mean, I look away from people’s eyes all the time, because I’m so dizzy. But for a half a second, be able to look in the eyes of someone that knows what you’re going to like face to face, that knows what it’s like to have, like constant dizziness for years, is like really just, you know, affirming and moving and, and supportive. And just to know that exists. And we’re out there.
Joe Coe 23:43
I think it’s a good lesson that we can make an impact. We can be on Jeopardy make an impact, or we could be on our school board, or we could be at the grocery store. It doesn’t really matter where we are, we could find ways to make change. And I think that your story, Nicky, really highlights that. I would be remiss or I need to ask, is there any like juicy tea about being on Jeopardy that we don’t see? Like, any behind the scenes drama that we should know about? Anything fun?
Nicky Smith 24:16
Yeah, the first little thing I’ll say is I really appreciate what you do and your organization. In terms of Jeopardy. You know, the funny thing about award shows is there was all that controversy in, I think was the 50s and 60s, with how rigged they were. And so then they heavily monitor them now and surveil them, and there’s like, you know, kind of like Ernst and Young wandering around and making sure everything’s legit. And you’re always mic’d all the time. And people, you go to the bathroom, people are kind of there. Everything’s just really monitored. I always forgot that I was mic’d. And so I’m up there on stage. I forget I’m mic’d. And I’m like, “Oh, I wish LeVar Burton was our host,” or I keep saying things kinda sh***ing on the show a little bit being like, “Oh, I really I missed, I don’t know why they didn’t pick LeVar Burton,” or something like that. And people kept having to come up to me like, “You’re mic’d.” And it’s like, oh, yeah, you know, you go to the bathroom and forgets like, “Oh, you’re mic’d,” you’re like, always mic’d. So that’s, you know, pretty funny in my view. I mean, the stuff we were talking about to, the other genderqueer person and I on stage, we were talking about just really like, kind of radical anti-capitalist history. And then they do this kind of Overheard on Jeopardy YouTube segments, and they’re like, “What are you talking about?” And we’re like, “We’re talking about abolishing the prison industrial complex,” and they’re like, “Oh, okay, yeah, we’re looking for more lighthearted, contestant chat for our YouTube channel, basically.” So, you know, it’s pretty funny. I always say you put me in any situation and inevitably talk about destroying the system created or something. So I don’t know, it was definitely very, very bizarre and funny. Another funny thing is that you come up on on set, in Sony Studios, and you see these huge posters for what Sony Studios is promoting. And they had The Good Doctor, and I’m on the spectrum, and I looked at that I was like, “F**k that show.” But then, of course, they asked a question about The Good Doctor on Jeopardy. And you’re supposed to, like, know that stuff. You’re supposed to know Sony Studios is going to ask questions that they promote, like, at the time your episodes coming out, so whatever. So that’s, you know, just dorky stuff like that. I mean, you do your makeup and, and hair at the Wheel of Fortune studio, which is super small, and then you go to Jeopardy. So that’s kind of funny. They tape five episodes in a day, so you have to bring multiple pairs of clothes. So it’s the illusion that it’s a new day, but really, it’s just go go go hair again, put on a different shirt and run out if you win, so yeah. It’s definitely a lot of like illusions and you know, they do a lot of cuts and things people mess up it’s it’s definitely pretty funny. Yeah.
Joe Coe 26:47
I love the hot mic, Nicky. Throwing shade at the host.
Nicky Smith 26:52
I know, I you know and the nice thing about Ken is he, you know, I you know, whatever. They’re like. Hey, Ken, if you listen to this and you want to reach out and you want to donate go for it. But like a lot of the people on the show and stuff, I mean when you mention that you have dizziness or migraines, everybody knows someone with migraines. Most people know someone dizziness, it’s the number two reason people go to the ER and urgent care. Like and then they just go, “Oh you have this,” and you connect with them and you connect with everyone with it. And so I think that’s something to learn from anything as you mentioned like people on your school board, people at your work people, you know. Everyone you know knows, odds are knows someone with migraine, knows someone with dizziness, or has those symptoms. And if you talk about the symptoms, they go, “Hmm,” and for example, these Prism glasses are like a godsend. And the person I met with vestibular migraine, she’s had it for years, she has never even heard of Prisms. And these, you know, and just stuff like that. Like, you know, I constantly talk about my Prisms. For people with brain injury, like I’ve had people with learning disabilities, with migraine, with you know, dizziness, what have you. There’s so many resources out there that we don’t know about that can help us and just yeah, you know. I hate to say don’t give up but like literally there’s so much stuff out there. And the system tries to make us give up as we talked about before but there’s there’s endless stuff coming out that you’re promoting or that you’re you know, making folks aware of and stuff so yeah. Thanks for what you do.
Joe Coe 28:20
Well, thank you for joining us today. This was fun Nicky. We you know went into it. We started with animal sacrifice and we ended with building a better community together so I think we really, really run the the gamut and it’s been an amazing discussion. Thank you for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please leave an honest five star rating and subscribe so you never miss another. I’m Joe Coe, and I’ll see you next time.
Narrator 28:57
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this special episode of Talking Head Pain, Joe speaks with Dr. Eric Kaiser, a professor and neurologist at the University of Pennsylvania. Learn about sleep and cannabis research presented at the American Headache Society, and the inspiring work being done to better serve LGBTQ headache and migraine patients.
American Headache Society Scientific Meeting: Sleep, Cannabis, Health Disparities + Other Research Highlights with Eric Kaiser, MD, PhD.
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:10
Hi, this is Joe Coe, host of Talking Head Pain, the podcast that confronts head pain, head on. I’m here with Dr. Kaiser, and he’s going to share some really interesting research that he is come across at the American Headache Society’s annual meeting. You’ll also hear from him about some of the work that he’s doing to help address the health disparities in headache and migraine care that are related to the LGBTQ community.
Eric Kaiser 00:39
Hi, my name is Eric Kaiser. I am soon to be assistant professor at the University of Pennsylvania, where I am a headache specialist and researcher focused on studying photophobia and migraine
Joe Coe 00:53
It’s such an interesting topic, Eric, and I’m really glad that I get to talk to you today to hear what you’re hearing about the state of migraine research for patients at the American Headache Society Scientific Meeting.
Eric Kaiser 01:06
Well, thanks for having me. I’m excited to talk about some of the thrilling research that’s going on here
Joe Coe 01:13
So can you give us some examples of things that you think patients should know?
Eric Kaiser 01:17
Yeah, I think there’s a lot of exciting research that’s happening, both kind of at the preclinical, as well as the clinical stage of things. For instance, this morning, there was a really exciting talk that was using some pretty exciting technology to look at how sleep maybe, sleep disturbance particular, leading to increased aura and using rodent models to be able to be able to demonstrate that and I think it could lead to really a better understanding of how sleep and headache might be interlinked between them. And then there was another great study that was done that looked at cannabinoids. So this includes how THC and CBD may be able to decrease light sensitivity, using a rodent model, I think will have real great applications for patients as well. There was another interesting clinical trial that looked at using artificial intelligence to be able to identify patients who may have atrial fibrillation, which could increase the risk of stroke and found that people with migraine with aura have higher rates of atrial fibrillation that hasn’t been detected. And that may be a factor that leads to increased risk of stroke for those individuals. And then this afternoon, there was a really interesting kind of discussion about how we may need to adapt what outcomes we look at in clinical trials to really better represent the patient experience and how they may respond to preventive and acute medications in the real world.
Joe Coe 03:01
So it seems like there’s been a lot of ground covered in the past couple of days at the American Headache Society. How do neurologists and other health care providers prioritize how they absorb this information? How do you approach a conference like this?
Eric Kaiser 03:16
Yeah, I think it’s, I think, you know, being present and attending meetings is really where you’re getting some of the cutting edge research, sometimes things that haven’t even been published yet. And so it’s really exciting to be in that space and, and then to be able to talk with those people in real life as well.
Joe Coe 03:35
It’s amazing and so important that people are here doing that work for us, as patients. I was reading your bio, and I thought it was super interesting that you did some work and awareness around the LGBTQ community and migraine, headache, and neurology. Can you speak a little bit more about that work?
Eric Kaiser 03:54
Been working with a number of collaborators from across the country, to try and outline this kind of state of the scientific literature as it relates to individuals who identify as transgender and gender diverse. And think about how, really the lack of research that’s out there, and how this population is being underserved, and both from a research and a clinical perspective. And so having kind of initial discussions of this is what the state of the literature is, this is how we can provide a more welcoming and affirming clinical environment to increase access for gender minority patients. And then what things should we be thinking about as it relates to potential effects of headache and gender affirming hormone therapy. And where do we go from here? How can we increase research in this area? What can we do to improve our clinical practices for really the stigmatized population?
Joe Coe 05:08
If you live in the US and you want to stay in touch with Talking Head Pain, text the word HEADACHE to 1-845-285-1563. That’s HEADACHE to 1-845-285-1563 and you will receive headache and migraine related resources, giveaways, and the latest Talking Head Pain episode releases.
Narrator 05:32
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this special episode of Talking Head Pain, Joe speaks with Howard Rosen, the CEO of the American Headache Society. Learn about the history behind the American Headache Society — and how the research presented at their meeting helps patients and providers alike.
American Headache Society Update: A Brief Discussion with AHS CEO Howard Rosen
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:10
Hi, I’m Joe Coe, host of Talking Head Pain, the podcast that confronts head pain head on. I’m here at the American Headache Society’s Annual Science Meeting in Denver, and I’m with the CEO of the society, Howard Rosen. We’re going to hear from Howard about what the society does and how they’re helping neurologists and patients.
Howard Rosen 00:30
Howard Rosen, I’m the CEO with the American Headache Society. And my role is really one in which it allows me to work with talented, dedicated individuals who support the society, and also physicians and other providers who are volunteers.
Joe Coe 00:53
That’s amazing, Howard. And for those that don’t know, what does the American Headache Society do, and how does it help neurologists help patients?
Howard Rosen 01:01
I’m very proud of our mission. It’s to improve the lives of people with migraine and other headache disorders. So we’re a professional society, yet our mission and core goal is to improve the lives of people with headache disorders. That, to me, is an awesome mission to work as a part of. We’re largely an organization of neurologists but I think it’s important for your listeners to know we have primary care physicians, we have nurse practitioners and physician assistants, we have those with dental degrees, we have researchers, we have clinicians. And thanks to this sort of new phase of migraine, we have more than 2000 people who call themselves members of the American Headache Society.
Joe Coe 01:51
That’s amazing. It’s such a great point to bring up the other healthcare professionals outside of neurology that treat so many of us. Really, really critical. So we’re here at the American Headache Society’s Scientific Meeting. What research, Howard, do you think our listeners would find to be most impactful or exciting?
Howard Rosen 02:12
It’s very difficult question to answer. It’s almost like of your children, which is the favorite. We have, you know, hundreds of abstracts submitted to this meeting. We have four days of content. So I think from my perspective, I’ll offer three examples that are more illustrative of the broader set of data that we’re seeing. We have a study looking at the prevalence of migraine remaining stable, yet the disability has increased in the US population. It’s really interesting, from my perspective. We also have one that looks at children in the disability of headache during the COVID period. Again, sort of what’s happening in and around headache that people are experiencing today and most recently. And then I think the third group, I would say is, your listeners should know that there is a tremendous amount of new data on new therapies, new treatments that are either currently on the market or on the near term horizon. I think, you know, while there’s never a good time to be a person with migraine or another headache disorder, this is one of the best times because there are so many tools available today.
Joe Coe 03:33
And that hope is so important for us to know that if we’re on a treatment that’s not working, that there are other options, or if we haven’t found the right treatment, that there are scientists and researchers and neurologists and others that are fighting to get that for us. Howard, is there anything else that you think our listeners should know about the American Headache Aociety, this meeting, that we didn’t cover?
Howard Rosen 03:54
I appreciate that question. And I don’t think it’s a 30 minute interview. But what I would say is our organization, I think even healthcare professionals who aren’t part of the society, is made up of clinicians who really care about patients. And there is this sense of we can do more and need to do more. Our objective here at this meeting is to not only educate people who are interested in headache, but grow the number of physicians who focus on headache as part of their practice to meet the needs that we know that are out there.
Joe Coe 04:36
If you live in the US and you want to stay in touch with Talking Head Pain, text, the word HEADACHE to 1-845-285-1563. That’s HEADACHE to 1-845-285-1563, and you’ll receive headache and migraine related resources, giveaways, and the latest Talking Head Pain episode releases.
Narrator 05:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe talks with Robert Cowan, MD, about research on chronic/episodic migraine and how access barriers harm patients.
American Headache Society Update in Under 5 Minutes with Robert Cowan, MD
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:10
Hi, this is Joe Coe, host of Talking Head Pain, the podcast that confronts head pain, head on. I’m here in Denver attending the American Headache Society’s Annual Science Meeting. I got to catch up with Dr. Rob Cowan to learn from him what he’s hearing about migraine and how it impacts our patient community.
Dr. Robert Cowan 00:30
So my name is Rob Cowan, and I’m a neurologist at Stanford, doing exclusively headache medicine and headache research.
Joe Coe 00:39
That’s amazing. And we’re here in Denver at the American Headache Society. What are you finding most insightful or interesting?
00:46
Well, today is still the first day, so we’ll have to see. But I’m seeing some some very hopeful trends, hopeful for patients. In particular, I think we’re starting to see that the notion of episodic versus chronic migraine is not a black and white situation, you know, it’s not like being pregnant. You either have have you have episodic, and then suddenly, you go from 15 days to 16 days. And now you have chronic migraine. We’re starting to understand that it’s a process and we’re starting to look more carefully at the slope of that curve, if you’re increasing your headache frequency. One of the big changes we’ve, we’ve seen recently is we now have medications that have an indication for both chronic and episodic migraine, which I think is smart. You know, most of us are much more worried, and patients are much more worried if they’ve gone from four headache days a month to nine headache days a month, than if they’ve gone from 14 Headache days a month to 16 Headache days a month. So I think that’s a very positive trend. We’re also seeing increasing attention to the hoops that we all have to jump through to get new medicines. Traditionally, we’ve had to try older, more familiar medicines, which have a weaker evidence base and more side effects than newer medicines. And that’s largely because of the economics. Insurance companies don’t want to pay for expensive medicines if they can get away with cheaper medicines.
Joe Coe 02:27
So you’re talking about prior authorization and step therapy?
02:30
Yeah, exactly. Exactly. There’s a very interesting poster at this meeting by Meredith Barad, from our group. And what they did is they actually looked at the evidence base for the tried and true the, you know, propranolol and nortriptyline medications, and compare that evidence base, looking both at efficacy and side effect profiles with the newer and obviously more expensive medications that require a prior authorization and a stepped trial of these older more familiar medicines.
Joe Coe 03:10
And what did they find?
03:12
What they found and you know, you should you should talk to Dr. Barad about this because it’s her work. But what they found basically is that the evidence for the older medicines is much weaker, the side effects are much worse, and probably, and they didn’t go this far but I can because it’s not my study, probably it turns out in the long run that, not only is it worse for patients, but it ends up costing more. You spend more time with comorbid illnesses, you spend more time in the emergency room, more time visits, more experimentation with medications, rather than going to the best medication first.
Joe Coe 03:51
Amazing. Well thank you so much for your insights. I’m sure our community will appreciate them.
Dr. Robert Cowan 03:56
Absolutely.
Joe Coe 03:58
If you live in the US and you want to stay in touch with Talking Head Pain, text the word HEADACHE to 1-845-285-1563. That’s HEADACHE to 1-845-285-1563 and you will receive headache and migraine related resources, giveaways, and the latest Talking Head Pain episode releases.
Narrator 04:21
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
When migraine had her down for the count, Cat got back up and fought back. She drew from her martial arts training and experience living with migraine to create her non-profit Chronic Migraine Awareness, Inc. In this episode, Cat joins Joe to talk about what she’s learned during her journey and the advocacy work she does around the globe.
EXTRA- Martial Arts and Migraine
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Cat 00:10
Discipline I thought was, you know, push ups and jumping jacks and, you know, taking yourself to the gym every day. And I learned that discipline also allowed me to be able to endure living with the pain of migraine.
Joe Coe 00:24
Welcome to Talking Head Pain, a podcast that confronts head pain, head on. I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation, and a migraine patient for 20 years. One of the things I love about doing this podcast is getting to hear from people like you, our listeners. And today I wanted to start by sharing one of your comments. FloVon says, “This pod and its host have given me the resources I need to discuss my care plan with my doctor in a more direct way. Migraines can upend your world and it’s so nice to have a guide through the world of treatment, and how to get what I need to live a more normal life.” I totally agree. And thank you so much, FloVon, for that positive review. If you like what we’re doing here on Talking Head Pain, please go over to Apple Podcasts and give us an honest five star rating. And wherever you’re listening, be sure to hit that subscribe button so you never miss an episode. Like FloVon said, migraines can absolutely upend your world, and learning to live a happy and healthy life with migraine can lead someone on a deep and profound journey. This is the experience of today’s guest, Cat, the founder of Chronic Migraine Awareness Inc. Cat is one of my closest friends in the advocacy community and one of its most inspiring members. Before we get into the episode and hear directly from Cat, please be aware that throughout this episode, there are discussions surrounding suicide and mental health. If you’re struggling with suicidal thoughts and need someone to talk to, know that you’re not alone. Please call the Suicide Prevention Hotline at 1-800-273-8255. I am here with Cat from Chronic Migraine Awareness. Cat is an amazing advocate and a longtime supporter of GHLF. We love Chronic Migraine Awareness Inc., and is just a good friend and I’m really excited to talk to Cat today to learn more about her organization and her story. So Cat, how are you feeling today?
Cat 02:27
I’m doing pretty good today. It’s a rarity especially being this time of the year but so far so good.
Joe Coe 02:34
What about this time of year is rough for you?
Cat 02:37
I think it just the seasons in general I find a lot of, I have a lot of weather triggers. Whether, you know, I can feel the barometer pressure dropping or changing. And I feel that in my head. So that just aggravates the symptoms that I might be feeling already. And I typically for some reason, this time of year, March, is where it peaks and then I’ll sometimes I’ll get a pop and it will just get better. That’s where I’m at right now. Like, so far so good. We haven’t gotten to the point where it’s horrible. And if it gets better from here, I’m golden.
Joe Coe 03:13
I’m glad that you’re having a good day today and that it’s being spent with me.
Cat 03:18
Absolutely. You are my favorite, Joe. You were the only podcast I listened to.
Joe Coe 03:23
Well, thank you. So Cat, when were you first diagnosed with migraine? How long have you lived with it?
Cat 03:28
I didn’t get diagnosed until 2003. And it was mostly because of my sensei, who I was, I was taking martial arts, Kempo martial arts. And he also has lived with migraine since he was a child and he was able to recognize the symptoms in me. But I would say the first time that I had something that I knew was a migraine was when I was about 12, 13. And I felt like this knife in my head. And then I lost vision peripherally, it was I mean complete tunnel vision. And then I couldn’t feel my left hand. And I went home and I told my dad and he said, “Take an aspirin and lay down.” So I took an aspirin and I lay down and then I threw up and I slept and you know, I felt okay, I guess. You know, whatever my normal was back then. And I didn’t have another migraine like that until the year 2000. So as far as I knew, I only had two migraine at that point. But what I have learned since then, is that I’ve had symptoms going back to maybe like seven. I remember, you know trying to learn to read and the words disappearing on me. And my mom getting so mad at me, you know because I wasn’t reading the words, I didn’t see them so I couldn’t read them and she would get so frustrated. And then you know brain fog and just you know so many like, like things that you can have. I didn’t know you could have a silent migraine and that’s probably what I was dealing with for years until by the time 2003 came around, it was just so bad that you know, I was already chronic.
Joe Coe 05:06
Two questions, follow up to that. One, what’s a silent migraine?
Cat 05:10
It’s a migraine without the pain. You have all of the other symptoms, you have the aphasia, which is like where you forget your words. You can have, you’d be very lethargic, you just, I call them my jello days. Brain fog, did I say that already? Because that’s how brain fog works. Like I said, that is pretty much all the symptoms you could have, you know, maybe even have the nausea and stuff like that. But you just, you don’t have that agonizing pain that people think of when you think of a migraine.
Joe Coe 05:41
And that’s important for the listeners to know that migraine can be more than head pain, and often is.
Cat 05:47
I mean, really a migraine, and I say this and dating myself in the phrase, that it’s a canary in the coal mine, because it really is a signal that you have something else going on that you need to pay attention to. Some other you know, underlying issues that you know, might, your body is literally screaming, you know, ding, ding, ding, you know. “Warning! Danger, Will Robinson!”
Joe Coe 06:10
How did your sensei help you?
Cat 06:13
Well, he was the one, he like, I started getting light sensitivity. I wore glasses my whole life. And in 1999, I had LASIK surgery, so I didn’t need glasses anymore. And then after that, I started noticing, “Wow, my eyes are really sensitive to light.” But they were always sensitive to light, but I never paid attention to it before. It was once, it’s sort of like you know, when you get a new car, and then all of a sudden, everybody’s driving that car everywhere, you know. So once I, once I kind of called attention to a symptom, I was like, “Wow, this is happening more and more and more.” And like I said, once I understood all of my, put it all together, I could go back to childhood. So you were having it back then too. You just didn’t know that’s what it was.
Joe Coe 06:50
Do you still practice martial arts?
Cat 06:53
I haven’t, I had to quit in 2009. I was working on my third degree black belt at the time. And it just got to be too much; the screaming, the throwing, the getting hit. All that stuff. You know, I just I couldn’t, I couldn’t do it anymore. I miss it. miss it so much.
Joe Coe 07:09
Sounds like it was a large part of your life.
Cat 07:12
I was doing I did it for eight years. It really was a lot of fun. My kids were in it, my husband was in it, you know, my husband, Chris. You know, and it was, we would we would just go there and laugh and have so much fun. And you know, every other shot is a hit to the groin. So what’s not funny about that, you know.
Joe Coe 07:30
Took me a second to register what you were saying. And I was like, “Oh, yes.” That doesn’t sound like fun to me, but to each their own. One other question about martial arts, was there anything about martial arts that helped prepare you to live with a chronic disease?
Cat 07:47
Absolutely, yeah, actually, I have a tattoo on my back of a lotus flower. And, and the Kanjis for the school, which is respect, discipline, and self control. And when I when I started, you know, I thought oh, respect is, you know, bowing, and yes, Sensei, no Sensei. And I learned, no, that the respect was about the respect that I had for myself, and that I was deserving of good health care, and that I deserved to be healthy and be able to enjoy life and do those things. Discipline, I thought was, you know, push ups and jumping jacks, and, you know, taking yourself to the gym every day. And I learned that that discipline also allowed me to be able to endure living with the pain of migraine. In 2013, I was planning my suicide because it was so bad. And, you know, there’s many times where I thought, after, you know, going through this whole series of attacks from migraine, I felt like I had ranked up. Like, you know, by now, I think I should be like, sixth degree or something if there was a black belt for migraine. And self control, you know, there’s a lot to that too. Again, I thought that maybe it was you know, not punching people in the face when they pissed me off. But, you know, it’s more about learning, when to talk and when not to talk, when to listen. And, you know, and also to it, how to use the energy that people are throwing at you to give it back to them in a positive way or a way that, you know, you don’t necessarily have to take a punch to the face, you can just divert it and change it and just change that flow of energy. So and going on again, still rambling about the flower is that the lotus flower represents the struggle that you have to do, you have to, to become the person, the beautiful flower. It has to struggle up through the mud and the water in the muck.
Joe Coe 09:54
That whole discussion around discipline, respect, that really is applicable to, to our diseases. And it’s about respecting our bodies and ourselves and our boundaries. I think that’s a really important aspect that we don’t talk about a lot.
Cat 10:11
You know, being a woman, you know, there’s, there’s a side to that where, you know, a doctor or any man tells you this is what it is you go, “Okay, well, you know, I trust you, you know,” but we have to be able to stand up for our selves and say, “No, I don’t accept this.” The first diagnosis I had, when I went, the doctor said, “Maybe your ponytail is too tight.” You know, and if I had just listened to him, you know, where would I be right now, you know, maybe I would be dead. So you know, again, that respect is, we deserve it. You know, this. There’s no reason why we shouldn’t be living our best lives.
Joe Coe 10:46
I’m deeply glad that you’re here. And I have a really important question to ask. Have you watched the reboot of Karate Kid on Netflix?
Cat 10:54
I have tried. I’ve tried.
Joe Coe 10:58
Not a fan?
Cat 10:59
It’s really corny. Although, you know, fun fact. My Grandmaster was actually a consultant on the original Karate Kid. So the whole wax on, wax off. That’s my system. It’s the Kempo system.
Joe Coe 11:12
That’s so interesting, because I was gonna ask you, if you were like, Cobra Fang, or Cobra Kai, I don’t even know the name, Eagle Fang. And, but it was a fun, it’s a fun show. It is corny.
Cat 11:24
It’s corny. Yeah,
Joe Coe 11:25
It’s fun. You’re like, “I know that that’s not accurate cause I practiced it.” So I want to talk a little bit now about how you’ve turned all of these negative experiences of living with migraine into something positive. You founded a nonprofit, you’re going into your 10th year, right?
Cat 11:45
Yes, yes.
Joe Coe 11:47
Can you tell us about Chronic Migraine Awareness and what 10 years of doing this you’ve learned and what it means to you?
Cat 11:53
Going back, you know, like I said, almost 10 years ago, I was also you know, planning my suicide. So when people were thinking- I was suicidal at that point anyway. You know, and somebody had suggested to me, you know, like, “Oh, well, well you’re miserable, and suffering and struggling to find help, you should start a nonprofit.” And I thought that was a terrible idea. So I did it. And I found also out that I think one of the things that really struck me after I had to quit Kempo was that I was left with nothing. I wasn’t a wife, I wasn’t a mother, or a sister, or daughter or cousin or friend. Like all of those roles that I was before, all taken away from me. And I was living in my basement cave, which was also my laundry room. And I felt like “Okay, well, now I have no purpose, and I’m a burden, and what am I doing?” But within this, my search of trying to find help for myself, I found all of these other people like Dorothy going into the wizard, you know, trying to find the wizard. Everybody looking for a new brain, said, “Oh, come with me, well, we’ll just you know, we’ll see what we can find together.” And those people, they supported me. And also I found that I did some, I did have something to offer, despite being disabled and being, you know, stuck. I mean, really, it was just my computer, it was just a keyboard. And because of that I connected to so many wonderful people. And then that also, of course brought me to you, which I have my my first friend in the coalition community. It’s been fantastic. And to know that, even if I was able to help one person, and I’ve helped more than one person, I’ve helped thousands of people. We have 50,000 people in, like, you know, globally. We’re in Canada, Australia, New Zealand, UK and Ireland. I mean, plus, those are major groups that we have, but then we really literally have people all over the world. So that’s, I mean, that makes me feel good to know that despite being disabled, I still had something valuable, valuable to contribute. And now we have other people doing the same thing within the community. If you want to hear from one of Cat’s moderators and members from Canada, Sean McAvoy, I interviewed him in season one of Talking Head Pain, about his experience in the military in Canada and being a man with migraine. And your organization, Cat, does such amazing work. I see what you do in the Facebook support groups and the community that you build and that is so important. What have you learned by doing that in 10 years? Is there a common theme that keeps coming up every year that you see? People still need the same things. They need to know they’re supported. They need, there’s a lot of caregiver burnout for the people that they’re with. So, it’s trying to live with your own disease and making sure that you’re getting what you need but also the partner that you’re with, whether it be husband, wife, whatever, you know, mother, father, brother or somebody, you know, best friend. I have, one of my best supporters is my best friend and she did things for me like taking care of my kids when I couldn’t, you know. She went on a little trip on a vacation, she would take them with her like, those things matter.
Joe Coe 15:20
I totally agree. It’s the heart of chronic disease. It’s, you know, finding support. People feel very confused. Even with such a common disease like migraine, that there’s so many, like outliers, or differences and access issues around the treatments and finding the right doctor. I know my inbox gets flooded since I’ve done this podcast from friends and people connected to me that are like, “Oh, I need help here,” or, “I don’t, my doctor is not doing this. And I heard you talk about that.” And it’s really surprising how much information is still missing. And Chronic Migraine Awareness fills a very big void in that by being on the frontlines and being on the grassroots, talking to people that are on the internet looking for information. So I thank you for all of that work.
Cat 16:22
Thank you, Joe, I appreciate that. I appreciate that you appreciate us. I would say one, one of the other things that we have been able to do is start an advocacy group, which is ARMS. And it stands for Advocates Removing Migraine Stigma. And stigma is a huge part of why we don’t get the help we need. Because we’re ready just to like you said, it’s not just a headache, it’s, it destroys lives, it destroys, you can’t do your job, you can’t be who you want to be. And, but also too, I think that you know, people with as far as advocacy goes, that some people feel like you have to go and you know, stand on a platform and give speeches, but you can just you can be an advocate by just speaking up for a friend, you know. Going to those appointments with them, or, you know, defending them against family family is like the worst when it comes to trying to get them to understand something new. So if you are a friend of somebody who has migraine, you can stand up for them and defend them. Or if you have migraine, you can also, you know, do things, you can take it small, you can just share graphics on on Facebook, or if you want, you could do big things like join the 50 State Network. And also, we go to Headache On The Hill, with Zoe, that’s a big part of that, you know, too. There’s, there’s so many ways to advocate however you want to do it. If you want to just do a little thing. You know, like I said, just you know, share a pen, share a graphic, or something. Or if you want to be a big mouth like me, and you know, get up and tell,you know, tell people that this is stuff that’s going on, there’s a place for you to do that, too.
Joe Coe 18:05
Thank you so much for the plug for GHLF’s 50 State Network. Folks can find more information about that at 50statenetwork.org. And that’s the advocacy arm, much like ARMS, of the Global Healthy Living Foundation. So Cat, how do people find information about your nonprofit? Where would you direct folks to go?
Cat 18:26
Well, you can go to our website at chronicmigraineawareness.org. We have, you can find everything about our organization there. Also you can go onto Facebook and we have private support groups, so they’re closed. If we know that family is trying to get in, we don’t let them in. So you have a private place to vent. And we have groups for men, women, moms, we have an off topic group so people can just talk about whatever. We have our main group where people could just discuss just the facts, you know, the nitty gritty of medicines and whatever. And then we also have a craft group for those people who like to do things partly to maybe like for their own mental health but also too, they’d like to create. And then we are able to sometimes use these the crafts that people are making and they donate them to us and then we can be able to distribute them out into the community.
Joe Coe 19:21
That’s a lot. That’s amazing. I didn’t know you had a crafting group. I don’t craft so why I don’t really know about it. Oh, my craft is different.
Cat 19:31
Your craft is in the word.
Joe Coe 19:33
I have a different craft. My craft is my face for radio. It was, as always, such a delight and pleasure to speak with you. Your energy and passion, I always feel it. And the collaboration, support, and just knowing that there are people like you, for people that are listening out there that have been through really tough times and have ways to help you throw it. Thank you so much Cat, for trusting us and for sharing your story. Cat ‘s story teaches us that you can find meaning and happiness in the most fascinating of places. She found her is in a martial arts dojo. Meanwhile, I find my happiness through advocacy and this podcast. So I leave you with a question today. Where do you find your meaning and happiness? Thank you for listening to Talking Head Pain, a podcast that confronts head pain head on. If you enjoyed this discussion, please give the show an honest five star rating and subscribe so you never miss an episode. I’m Joe Coe, and I’ll see you next time.
Narrator 20:44
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
The way Jaime Sanders expresses herself is the key to managing her migraine. Whether it’s fashion, makeup, or hair, Jaime owns her unique identity, an identity which provides her an outlet for advocating for others with chronic illness. In this episode, hear why Jaime calls herself the Migraine Diva, and how it touches everything from her migraine advocacy to the need for self-care.
“I really try not to focus on what happened yesterday, or what needs to happen tomorrow,” says Jaime. “I need to reserve my energy for the 24 hours that I’m currently in.”
Season 2, Episode 5: Jaime Sanders, the Migraine Diva
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Jaime Sanders 00:09
The great thing about the headache and migraine community is that they are willing to learn and listen and do better. I just wish there was more representation. And there was just more than my voice speaking on this because it will make a bigger impact.
Joe Coe 00:22
Welcome to Talking Head Pain, a podcast that confronts head pain head on. I’m Joe Coe, Director of Education and Digital Strategy at GHLF. I’ve lived with migraines for over 20 years, so I understand what it can do to your life. Today, we have The Migraine Diva, someone who I consider to be a longtime friend who has officially anointed me Migraine Diva Number 2. I wear that title with pride. So how are you doing today, Jaime?
Jaime Sanders 00:56
I’m doing okay, I’m having a bit of a rough morning. But I’m here like I always am.
Joe Coe 01:02
We’re gonna make it better, I think, I hope, after our conversation. So what is the tough morning for you?
Jaime Sanders 01:09
Well, this particular morning started with a really severe occipital neuralgia attack around three or four o’clock this morning. And it’s been ongoing ever since. So what that feels like for me is intense pressure at the back of my head. And this time it’s on the right side. Feels like somebody’s drilling into the back of my head and like stabbing at the same time. It’s really intense. There isn’t much I can do for it. But it’s flaring up because Botox is due and I get that next week. So it’s rearing its ugly head. So I’m just gonna have to deal with it until next week, I guess.
Joe Coe 01:48
I get Botox next week too. We’re Botox twins! So I want to know, Jaime, what is a Migraine Diva?
Jaime Sanders 01:57
Migraine Diva for me is a way for me to hold on to my identity. And for me, that’s someone who loves creative outlets, specifically makeup and hair and all of that stuff that I identify with that just allows me to create different personas or express the way I’m feeling on a particular day. And that’s something I’ve always loved since high school; fashion, makeup, hair, I just always loved it. And it’s not for any vanity reason. It’s just a great outlet for me. And so when I started my blog, and I was trying to think of what to call it, that kind of popped in my head, I’m like, you know, that sounds like it’s glamourizing migraine, but it’s really about my own self identity. And you know, living with chronic migraine and intractable migraine, you really lose yourself within the disease because you’re dealing with it nonstop 24/7 365. And so I really needed to start to pull back from identifying with my disease and personifying my symptoms, and really learning to recognize that I am still the same girl I was back in 1993 with the same passions and love for creative things. So that’s where that comes from. And that’s what a Migraine Diva is for me,
Joe Coe 03:23
I love it, and I want to know what is a Migraine Diva tip for someone to look good and feel good?
Jaime Sanders 03:30
It’s whatever drives you, whatever your passion is, whatever your love for something is just don’t give up on that. It could be anything. It’s just taking that time to do what makes you feel good and really pouring into yourself. I think that will make anybody a diva because you’re prioritizing your own needs, your self care, making sure your whole. That’s what is important to anybody, regardless of your race or your gender. It’s taking care of what makes you you and fulfilling your needs and making sure you’re okay by whatever means that is. Go ahead and do it.
Joe Coe 04:08
So you talked about your passion being makeup and hair and fashion. What are some of the trends that you’re loving right now in that world? And what are some that we should maybe steer clear of?
Jaime Sanders 04:21
Okay, so I’m gonna be honest, I don’t really follow any trends.
Joe Coe 04:24
You make the trends?
Jaime Sanders 04:26
Yeah, you can say that. I mean, I know what looks good on me. I think I do pretty well with making colors work with each other. Honestly, what my trend is usually is loungewear and lots of pajamas because I spend so much time in the house. But that doesn’t mean I can’t sit at my vanity and beat this face to the gods. Okay. I’m not a big follower of trends like I was back in high school. I mean, I used to love Isaac Mizrahi and then like watch all the supermodels like Naomi and Linda Evangelista, all of those icons. But I really don’t have time for that. I don’t have the budget for that. I just wear what makes me feel good, what makes me feel confident. And I really try, I think what I’m doing more now, is trying to wear more bright colors like the orange I’m wearing today. Like I usually wear darker colors, especially since I’m a bit overweight, black and dark colors are my friends. But I’m trying to brighten up my wardrobe. So that’s what I’m trying to do just trying to incorporate more colors and be more vibrant. And then that gives me an opportunity to play more with the different palettes I have and wear brighter colors on my face that I normally don’t. So that’s my trend.
Joe Coe 05:40
I love that. And for our listeners who may not know what beating your face is, it’s not actually beating your face. It means putting on really good makeup. I recently told my sister in law, I sent her to a makeup artist for a wedding that she was attending. And I said, “Tell them that you want your face beat.” And she goes to my friend, “I want you to hurt my face.” My friend was like, “Oh, sweetie, you meant beat your face.” We don’t want our faces to hurt when we have migraine. But we like a beat sometimes, get a little color, get some freshness there. So yeah, and your makeups looking amazing today, by the way.
Jaime Sanders 06:19
Thank you. And let me tell you, it’s a struggle for me to apply a face of makeup because I have trigeminal neuralgia also. So touching my face with any of my makeup brushes, just applying makeup. Right now I have so much pain around the side of my face. And putting on eye makeup causes this eye to just run. Trying to put on liquid eyeliner and mascara is like troublesome because I have like black streaks going down my face. So it takes a while. It is a painful process for me. But I endure it because usually the end product is worth it, so.
Joe Coe 06:55
But I think it’s important that we acknowledge that, for some, putting on eyeliner is going to be a big task. For others. It’s something that people take for granted. And we need to be gentle with ourselves around what we do to make ourselves feel better. So find that inner Diva in you, like what you were saying about earlier, Jaime. Defining that for ourselves is so important when we live with chronic disease. And it’s one of the reasons why I’m drawn to you and your energy, because you impart that spirit and that wisdom in all the work that you do.
Jaime Sanders 07:28
Yeah, that’s important for me, because it keeps me in line with what I discuss and what I share. Keeps myself accountable for taking care of myself. You have to walk the walk, not just talk the talk. So it’s a great way for me to practice what I preach. And sometimes we’re not always good at taking care of ourselves and putting ourselves first and doing what we need to do to make sure that we’re in a good, safe, protected space. And specifically living with chronic diseases, so much of our time is occupied with managing that and doctor’s appointments. And that’s outside of what your life looks like whether you’re in a partnership, you have children, you’re in a career, or you’re in school, it doesn’t stop life from happening just because you have a chronic illness or disease. So it takes a lot of energy to manage and balance all of that. I try to make sure to let people know that it’s not necessarily always about the huge accomplishments that you have throughout the day. If you’re able to do something that you weren’t able to do the day before, make sure that you congratulate yourself on that because it’s the little wins that really make a difference. And really not the big victories all the time. Because personally for me, I don’t have a lot of those. So the fact that I was still able to get out of the bed today and managed to put this face of makeup on and sit here and look and sound intelligent. That’s a big win for me, because yesterday, I wasn’t this way at all. So it’s important for me to make sure that I give myself grace, and just take it one step at a time and one day at a time. I really try not to focus on what happened yesterday, or what needs to happen tomorrow. I need to reserve my energy for the 24 hours that I’m currently in. Having that mindset is not only helpful for how I paced myself, but it’s also a way for me to manage my mental health and not spiral down into that anxiety of oh my gosh, this is going to happen and I’m not prepared for it, which can then trigger the depression and I have to be very mindful of where I let my mind go. So just staying focused on the day that I’m in really helps me get through each day of the week.
Joe Coe 09:50
So true. It’s really important to celebrate the small victories like you said, and we don’t do that as a culture enough. Cheers when we drink a glass of water, like that’s an accomplishment. We’re drinking more water, which is what everyone says to do. And it’s not easy to do. So cheers when you have a cup of water or a glass of water. Jaime, something about you that’s so unique in this community is how vulnerable and real you are about, not only your struggles with migraine, but also mental health, depression. And you started to talk about that. How has being an advocate and being a visible force in this community, as a migraine patient, as a black woman, both positively and negatively impacted your mental health?
Jaime Sanders 10:37
Positively, I think what it has done for me, and I think for a lot of the community that doesn’t feel like they’re represented, say, in like support groups or advocacy groups is, it validates their experience and their journey. It was important for me specifically as a woman of color to highlight what it’s like for me, for my family, what legacies I come from, and what I’ve had to learn growing up, and how that impacts the way I interact with the healthcare system. It’s very different for marginalized groups. And that just was not being talked about. And I felt like I needed to make sure I uplifted those voices, because if I’m going to be in this space, and advocate, I have to make sure I’m true and honest about those experiences that just are not discussed. I also wanted to make sure that I use this opportunity to talk about communities that were just completely ignored. It was my responsibility to do that. And especially since growing up, I received my health care at a federally qualified health center. And I saw low income marginalized communities get great care. And that specific center made sure that everyone that worked there, from housekeeping up to the board, represented the community that they were working in. It was extremely diverse. And I was able to see physicians and dentists and nurses of all races. And that really informed the way I saw healthcare growing up from the age of 5 to 18. That’s a very impressionable part of your life. And I knew what those communities needed out of those centers and what they got from them, and how important it was to have that level of care. And I saw that was lacking in the migraine and headache community. And I wanted to make sure that these groups I was affiliated with or working with knew that it’s more than just those that you seem to target, which are those with commercial health insurance and have access to transportation and healthy grocery stores and are able to manage triggers because they have access to healthy foods. There is such a larger community out there that is so neglected, we have to make sure that we’re reaching them as well. So being able to bring that to the table has been extremely positive for me. But on the flip side, it has been extremely burdensome and exhausting, because I tend to be the only chocolate chip in the cookie a lot of the times and not having other BIPOC in the room that can speak to what I’m speaking to and support that and have the safety of that understanding is frustrating.
Joe Coe 13:37
It is important to hear that Jaime’s perspective isn’t an indictment against any individual or group. But her sharing her experience and the countless others who push against institutional racism. When we personalize these perspectives, it often decreases our opportunity to hear it. Please listen with an open heart and mind.
Jaime Sanders 13:57
Unfortunately, a lot of the time, who I’m dealing with are mostly white and female, and they’re doing great work. But I don’t always feel like it’s a safe space for me to talk about how this has impacted me as a black patient advocate and not seeing the diversity in leadership. When you look at websites, you don’t necessarily always see a history of work in marginalized communities. So when we’re trying to get BIPOC to buy in, and they go and look at these events or organizations, they’re not seeing themselves. So that’s the frustrating part for me, and it’s going to take a lot of work. But I’m not the only black person with migraine out there with a voice. And retelling my story as much as I had over the last two years, specifically the trauma of dealing with implicit bias and overt racism, retraumatizes me. So I need to protect myself and I think that’s something my white colleagues don’t ever think about when they asked me to talk about it. I’m like, well I have to relive it again. And that’s not an experience you’ve had to deal with. But the great thing about being in the headache and migraine community is that they’re willing to learn and listen and do better. So there is safety in that, I just wish there was more representation. And there was just more than my voice speaking on this, because it will make a bigger impact.
Joe Coe 15:20
Definitely. And that leads to my follow up question. You made me think of a statement that I heard around politicians, white politicians shouldn’t be going to black churches denouncing racism, they should be speaking in their white churches denouncing racism. And I think that statement is really powerful and applicable to the migraine world. White organizations and people like me need to do the work with our colleagues to create the environment that makes it less of a burden for you to share your story. And we might not need your story all the time, we might need to work on our implicit bias without that story, because it’s not your responsibility to educate all the time and to educate us. What would your needs be from allies in this work for around health disparities? I could think of it as a gay man, but as a black woman, what would organizations need to do to be better allies to you and others?
Jaime Sanders 16:20
I think it honestly starts with leadership. There just isn’t that voice. There isn’t that culture of diversity, equity, and inclusion in executive leadership. And so without those experiences, and those voices, there’s going to be a disconnect. And I would just love to be able to see that progression. And it’s going to take time, if you’ve never done this before. But I think it’s a self education. I think, like you said, too many times our white allies go to their BIPOC colleagues or friends to help them figure things out. And like I always say, “I didn’t create this problem. I don’t know how to fix it. And I’m not here to help you fix it. I’m just here to make you aware that it exists.” But really taking those initiatives to research different organizations that are BIPOC led or focused, instead of asking me, “Well, do you know of any organizations?” I’m like, all it takes is a Google search, and you need to start reaching out. That’s, I think, a difficult thing to get people to do. I mean, they really have to be motivated to do that. All I can do is say this is what’s helpful for us. This is what we seek in our allies. And most importantly, not to immediately get defensive when we talk about what we see and what can be better, and not use it as an opportunity to say, “Well, this is what we’re doing.” Okay, that’s wonderful. But I’m telling you, as a black woman, from a black family, from black history, there’s always more that can be done. And especially we need our white allies and our colleagues and organizations to really do better at educating the engaged patient population in this specific community, because it’s majority white and female. So when we discuss issues around race, there is a lot of white women centering their experiences on those articles, or those posts or those podcasts, which needs to be quelled. It’s not about I’m a woman. So I experienced this too. You don’t have the intersectionality daily of being a woman or man and also being from a marginalized group, or a historically disenfranchised group. So it’s not about your experience, and nobody is making it less important. But we need to be able to feel safe to talk about what we go through, and how our experience is so much different just because we walk in with this color on our skin. And people are already perceiving us a certain way. And they already made up in their mind how they’re going to treat us before we even open our mouth. I would really love to see a more inclusive patient population and support groups that really make people who feel othered welcome.
Joe Coe 19:17
I’ve done a lot of thought about these topics and what I could do individually, what GHLF can do as an organization. I think what happens oftentimes with really well intentioned people, does that, you use the word centering are stories, we personalize it. So we hear something and either something bad happened to us so it’s the same and we reduce the experience or we’re like, “We never could have implicit bias. That’s not how I was raised. That’s not what I believe.” And a shift for me that has really helped me understand this in areas that I have a lot of privilege is A, I’m going to lose anything by listening to the experience. I don’t lose my experience, I don’t lose my position in the world, I don’t lose anything. I potentially can gain a really nuanced and rich understanding of a topic that I might not understand. So depersonalizing it and making it not about us, when we are providing space and we then say, “Well, our organization does this, or I have done this, or I have this experience,” it inadvertently negates what that person just took all that energy to share. So it’s natural for us to do that, especially people that are doing good work. And these organizations that you’re working with are doing good work, you wouldn’t work with them. I know you, you wouldn’t work with them. And we’re not doing enough. Because we’re not really putting in the mental work that it takes to say, “All right, I can be uncomfortable here. I’m not going to die as a white man hearing this perspective. And if I need to wait a week to share my perspective, I can wait the week to share it.” It doesn’t need to happen right then when that person is vulnerable and sharing their experience of implicit and explicit and overt bias because it negates it. So I think that’s a lot of the soul searching that we need to do. And it’s a process for those folks. And then there’s people that we’re never going to reach and we have to cut ties. When GHLF put out a statement around Black Lives Matter a couple of years ago, we got a slew of emails, people were like *noise*. And I was like, unsubscribe. This is a not negotiable topic. Black Lives Matter period. There isn’t a debate here. It’s not and, it’s not but or it’s period. And if that’s not vibing, with you, this isn’t the right space for you at this time. There are other spaces that are right for you. And organizations need to decide for themselves and there is no right or wrong answer. It’s what we need to decide what our ethic is and what we choose to do. So it’s so important to not waste your energy, as white organizations, as white people, because you’re giving us a gift. And we need to take that gift and act on it and not go back to the people that gave us the gift and say, “Oh, you gave us a gift, can you give us another gift?” To pay black people for their work. That’s something that we do at GHLF. It’s just the right thing to do. Hire black people, you talked about promoting and having leadership that’s really important. We’re seeing large companies do that, which is amazing, that that’s starting to shift. And that’s really important. So we could talk about this for days, I’m sure. Was there anything that I missed that you wanted me to ask or anything that you wanted to add, Jaime?
Jaime Sanders 22:47
I want to really encourage organizations to seek out the black disabled advocates that are active like on Twitter. They’re such a great group of people, and they’re filled with so much diversity. I think it doesn’t matter what your disease state is, or your level of disability, just having as many voices in the conversation is what’s going to enrich that community. It’s more than just our one specific area of advocacy, we really need to look into what so many other people’s experiences are and what their challenges are and how they may overcome that and what they’re doing to support themselves. And using that as educational tools to make better programs, more diverse programs. And I don’t think we have enough voices really speaking to their experiences, specifically in those groups. And when it comes to policy work, really reaching out to those BIPOC specific health organizations, and seeing what their focus is on state and federal policy and whether they align with your work and what you’re trying to achieve in your goals. And really starting to create these relationships, and really investing and working with organizations that historically have always worked with those groups of people in communities, and really trying to follow what has worked for them. And letting them speak honestly and openly about wherever gaps may be, where you need to correct things, and how you can do things better and take that constructive criticism and turn it into something beautiful for people that may feel left out in the work that you’re doing. And I know that these groups are not intentionally doing these things. I think it’s just if you don’t know about it, you’re not going to do anything about it. So it’s just about making yourself more mentally available to think outside of your own comfortable space. And think of, “Well this is what I know but let me try to think of other people in other situations, and see what I can do to bring that in.” It’s very easy to forget that there are millions of people out there that aren’t able to hop in a car and drive somewhere, who don’t have grocery stores that have to go to the corner store, the gas station, their neighborhoods are filled with fast food restaurants. If you don’t live in that type of environment, and it’s not a safe environment, how would you know how to even get into that community and do work there and get them to trust you and the work that you do, and that you really care about them. It’s about starting with those organizations that have historically already been there and have been doing that for years, and just learning the ropes and just being humble along the way.
Joe Coe 25:42
And it’s a deliberate process, because we would go with the tide, and not make change. And that would be easy. It’s walking against the tide and being deliberate in these actions, and thought processes that you’re talking about Jaime. And it’s something that we need to do better at as migraine organizations, as a country, as a world, another world is possible. And we can make that. It’ll take a lot of work from people like me, and others to do it. We need to listen with open hearts and minds, and then take that and act. And I think that will build a lot of small victories into larger victories, like we talked about. This is why I love talking to you, Jaime. We can go from talking about makeup, to institutional oppression. And it all is connected. And it all makes sense, because our lives are complicated. And we are these amazingly wonderful, diverse, unique people that live in a really interesting time. And we can make some great change together if we listen to folks like you.
Jaime Sanders 26:56
Yeah, we really can. And, you know, it’s all my heart to say that, I just want to make sure that all of the organizations I work with, understand that this is nothing personal. I’m not singling anybody out. It’s just what’s obvious. And we just always need to do better and just increase our diversity. And I’ll always be the touch point for that. But I just want to make sure that they understand that I love them. And I wouldn’t work in this space if they weren’t great organizations and great people. I just have to speak to what I see, and what can be done better. And just know that I’m here to help us get to a better place. And I think this leads into that what I was talking about earlier about not feeling protected, because you don’t always feel safe to be this honest. And I always am worried about backlash. But I think the topic and the discussion is way more important than that. But I do want to reassure those folks that I work with that I love you guys. The work that we have been doing over the last two years has been great and amazing. And it’s really going to create a lot of change. But we still have a long road ahead of us. And these are the things we still need to work on. So that’s just what I was speaking to. And I don’t want anybody to feel like they’re not doing the work because they are.
Joe Coe 28:23
Definitely, and I everything that you’re saying, we need to hear at GHLF, too. I would include any organization needs to hear it. So it’s about that not taking it personal. It’s important to hear.
Jaime Sanders 28:37
Yeah.
Joe Coe 28:38
And there are truths that we could take. Any organization listening to this today can learn something from what you said, that’s doing amazing work. We can do better. So I just really value your time, your energy, your passion, your vibrancy with your color choice today. I mean, I did the total opposite. I’m like, let’s mute it down, Joe. Because I was so excited to talk to you. And I really value and honor and respect your experience and your energy and your work.
Jaime Sanders 29:14
I really appreciate that. And and same to you. I mean, you’re such a passionate person, and your voice and your commitment to things that matter really motivate me and really inspire me and I feel very grateful to be your friend and to have you in my corner as I hope you know I’m in yours. So I think it was Kismet that we met and I knew immediately you were Diva Number Two so please wear that crown with pride, with your head held high because you deserve it.
Joe Coe 29:48
And if anyone has any backlash for Jaime, my email is [email protected]. You can give it to me. I could take a little backlash.
Jaime Sanders 29:59
Thank you, friend.
Joe Coe 30:01
Thanks for listening to Talking Head Pain, a podcast that confronts head pain head on. If you enjoyed this episode, give us a rating and write a review on Apple Podcasts. It’ll help more people like you find us. I’m Joe Coe, and we’ll see you next time. This season of Talking Head Pain is made possible with support from Amgen, sponsor of the Global Healthy Living Foundation.
Narrator 30:28
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Before migraine, life was good for Cannon Tekstar. She had a big career with travel, people reporting to her, and invitations to parties. But when migraine struck, it all turned silent, including support from her so-called friends. In this episode, Cannon shares how living with hemiplegic migraine forced her to re-set her career and how she uses social media to support others living with migraine.
Season 2, Episode 4: From Skyrocketing Career to Re-setting With Migraine
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Cannon Tekstar Hodge 00:08
Prior to migraine, I had a really big career. And everyone who has chronic migraine feels that loss of their past life and I definitely have experienced that.
Joe Coe 00:20
Welcome to Talking Head Pain, a podcast that confronts head pain head on. I’m Joe Coe, Director of Education and Digital Strategy at GHLF. I’ve lived with migraines for over 20 years so I understand what it can do to your life. Today I have to delight to talk to Cannon, otherwise known as the Migraine Babe on TikTok. Cannon shares how migraine impacted her career and how she’s using social media now to support others living with migraine. So really nice to meet you, Cannon. Where are you from?
Cannon Tekstar Hodge 00:53
I am from Fort Worth, Texas. I grew up on a- I split my time between a farm and Fort Worth growing up as a child. And I had a really kind of idyllic childhood with chickens and goats and cows and peacocks and horses.
Joe Coe 01:08
And how are you doing today?
Cannon Tekstar Hodge 01:10
I’m doing great. It’s been a busy day. It’s been a productive day but I had a good walk at lunch, went to the park with my dog, and we we had some good times and here I am now talking to you.
Joe Coe 01:22
So we’re going to be talking about head pain for Talking Head Pain. I would love for you to talk about what migraine means to you and your worst migraine attack.
Cannon Tekstar Hodge 01:32
Migraine for me is so much more than head pain. It is a neurological disease and it is a dysfunction of the nervous system. And my life with migraine is quite different than most because I have chronic hemiplegic migraine which is one of the rarest subtypes of migraine with aura. In terms of my worst migraine attacks, I’ve had some different varieties. I’ve had some big slammys, as like think of them, or big baddies where I will pass out. That happens about once a year. Once I was in California, I passed out in the UCLA Santa Monica Emergency Room, really nice emergency room there, they have private rooms and they turn out the lights. It’s the nicest emergency room I’ve ever been to. But I also passed out in New York several times. I’ve done it in urgent care. I’ve done it at home on the floor in the bathroom, I’ve done it in the emergency room. I also get cyclic vomiting during these big baddies. That’s when I typically would need an IV to rehydrate. So that’s pretty tough. My scariest attack was a hemiplegic attack that really closely mimics a stroke. I usually know the difference between my hemiplegic attacks and a stroke because when you have hemiplegic migraine, you know to kind of look for the symptoms. And you see how they kind of act in stages and phases and you know when to act fast. So this was one where everything happened instantaneously. And it just was like, snap, my words slurred, everything seemed warped, I had paralysis, I couldn’t smile, and being unable to smile was a new symptom for me. So as soon as you have a new symptom during one of these episodes or attacks, that’s when like the little spidey senses go off and you know that you have to pay attention. And because this was happening instantaneously, and because I had this new symptom where I was unable to smile, I knew that I needed to get it checked out to rule out stroke, because I know that I have such a high risk of stroke. So I called 911, and the EMTs came and my blood pressure was super duper high. I usually have really low blood pressure. They were like yeah, we’re pretty sure you’re having a stroke and the ambulance drove me the one block to the hospital again. I lived one block away from the hospital and the stroke team was ready for me. And that one took a while to recover from but I returned to baseline that day. The IVs worked and everything. Usually my auras come in stages and phases, but I have intractable auras so I have auras all the time. I haven’t been without some level of hemiplegic migraine auras since 2015. But those are kind of my worst migraine attacks.
Joe Coe 04:07
So interesting for me right now, personally because I live with migraine, as you may know, and I’ve been getting more dizziness and close to fainting, and my tingly spider senses went off and I spent a day in the ER recently. And we also have private ER rooms in Rockland County, who knew but we did. And they turned me they turned the lights off for me, which was really nice. Once you get out of the actual ER waiting room into a room it was very good. So it’s important, what you’re saying when you feel something different to take notice and to get help. Do you find that a lot of people struggle with going to the ER or taking the new symptoms seriously because you don’t want to be seen as like exaggerating or being dramatic?
Cannon Tekstar Hodge 04:57
Absolutely. And there’s so many times when I don’t want to go. I will go to urgent care so many more times than I will go to the ER just because I never want to put too much stress on the emergency staff, especially right now in the middle of a pandemic. And I also don’t want to put myself at risk. But I do find that I will avoid going to the emergency room as much as possible. And usually the reason I go is because my neurologist sends me. She sent me in April because she wanted to rule out a blood clot because I had developed a new aura. And it was kind of mimicking a blood clot. So she wanted to rule that out. And NYU is super duper careful. And so she was like, “You need to go right now?” And I did. And it was fine. It was nothing wrong. It’s just another aura. That’s just how it is.
Joe Coe 05:48
Cannon, you’ve mentioned auras now two or three times, can you explain what an aura looks and feels like for you?
Cannon Tekstar Hodge 05:56
When most people think of migraine auras, they imagine the visual auras. So seeing flashes of light, or seeing black or brown spots, having some sort of impairment with their vision. That is the one aura that I don’t get a lot of. I think at the end of the day when I close my eyes I kind of have this disco show going on. But other than that I don’t really have visual auras. My auras are more motor and sensory. I have a lot of paraesthesia. I have constant paraesthesia, or tingling, in my legs primarily from the knees down. I also get paraesthesia in my hands and on my face. And then I get ataxia, which is kind of having difficulty walking and with movement and feeling really weak. I call it baby giraffe trying to drink water legs, if you have that visual. And I have a lot of difficulty walking. Some of my other auras, now I’m trying to think, I will get a stutter. I have a terrific stutter, and I will stutter through anything. And then I also get transient aphasia, which is when I will have difficulty thinking of words or I mix up words and I do this all the time. And because I have intractable auras, these symptoms are some things that I live with every second of the day, and I have lived with every second of the day since 2015.
Joe Coe 07:21
Auras can be part of migraine in a big way. So I asked Dr. Peter McAlister, a Board Certified Neurologist and the Director of the New England Center for Neurology to describe some of the most common types of aura.
Peter McAllister, M.D. 07:35
The most common aura is a visual aura, that is having 20 to 30 minutes of zigzags if it’s in the sensory section of the brain. But the less common ones are very interesting and can be quite scary. The second most common aura, if it’s in the sensory section of the brain, is a tingling or numbness. And that can be one side of the body, can go up to the face, can involve half the tongue, which certainly can be very scary and a lot of folks think they’re having stroke. One can also have that aura in the motor cortex. That presents very stroke-like with weakness, and there is a subset of migraine called hemiplegic migraine, where one side of your body gets weak. One you can have the aura in the dizzy and balance center, one can have it in the language center. So these are neurological symptoms that are not dangerous, fully reversible, and part of the migraine in about a third of those who have migraine disease.
Joe Coe 08:34
It’s really important for people to understand that auras can be all these multifaceted things that happen to people and not only a visual representation. I’ve learned that from people with epilepsy, that it could be like a feeling of deja vu, or something like that. And I think it’s important for people to acknowledge that because it helps us better manage our disease if we understand that this weird feeling is part of migraine.
Cannon Tekstar Hodge 09:04
Absolutely. And I do get this strange bit of tingling, or twinginess as I like to call it, on the right side of my head. And that’s usually my first indicator. I’m tingling all over all the time. It can be difficult for me to distinguish one from the other. And a lot of times I like to keep moving and I like to keep busy. So I’ll just keep trucking along until I realized that I can’t walk or talk and then I’m kind of like, oh boy, it’s time for me to take my meds.
Joe Coe 09:34
I heard that you had to travel a lot because of migraine and potentially your career. Can you talk about how it’s navigating employment and travel with migraine?
Cannon Tekstar Hodge 09:44
Prior to migraine, I had a really big career and everyone who has chronic migraines feels that loss of their past life and I definitely have experienced that. And it’s heartbreaking to see who you were before your chronic illness and who you become, and all of the experiences and all of those things that you lose as a result. And so after I kind of was used to working again, and I had adopted some healthy work life balance habits and all of those things, I got a job in New York back in the fashion industry working for an American designer in the city. And I was with that designer for several years before there were COVID layoffs. And once I was back in New York, I was assigned to a headache specialist at NYU, and I’ve been with her since and she has been absolutely incredible. I was freelancing at the time, I had lost my job due to migraine, and I just packed up my place and I moved to California. I saw that UCLA had started a migraine program. I knew that UCLA was one of the top neurological hospitals in the country. And while I was at NYU, which is another top neurological hospital, I just wanted to see if a change of pace and different lifestyle could be helpful for me. And what I learned in being a patient at UCLA, and their approach to patient care is very different than NYU, they feel much more clinical. But what they really did is they taught me that my approach to treating migraine didn’t have to be reliant upon just one preventive medication. I needed to target all of these different symptoms. And there was nothing wrong in needing to take multiple medications, and get Botox, and try different kinds of diets, and do meditation. And so I kind of had this catalogue of things that I was doing to manage migraine and I since I was unable to work at that time, I did everything to optimize my life for migraine. They taught me more about preventive medications and how these different medications could address my symptoms than any other place. The effect that it had on my life was transformational, I no longer needed to wear sunglasses inside. I was not as light sensitive as I usually was. I wasn’t as sensory sensitive, so I wasn’t as sensitive to any other levels of senses, including loud noises, other things. I still am very sensitive to flashing lights and vibration. But other things don’t trigger me so much. It took my daily pain from being at like a seven, it took my daily baseline pain to a four. We looked at it in what are some different symptoms, and how can we target those symptoms of preventive medication since. So that’s how my headache specialists here in New York and I approached it as well. Once I got my symptoms under control in California, I was able to apply for a job and I got a job working for a communications firm. And it was a really simple job. I was way too qualified for it. And I’ve been very lucky to have access to both UCLA and NYU. And one of the reasons I work so dang hard is so that I can continue getting the care that I have at NYU, because I need that insurance. I can just get very angry when I think about our medical healthcare system. But I work really hard so that I can stay with my doctors and get the treatments I need to treat this really gnarly disease.
Joe Coe 13:26
What makes you angry about the healthcare system? You talked about getting angry, get angry with me. What angers you?
Cannon Tekstar Hodge 13:33
I get so frustrated. There are only 700 headache specialists for at least 35 to 40 million people who have been diagnosed with migraine, there’s probably more in the US who have migraine and they don’t even know it. And there’s only 700 headache specialists to treat them. I have more access and more privilege than most and it is so unfair that so many people don’t have access to medications they need. And it’s so unfair that they don’t have access to the treatments they need. I want to punch the wall when I think about step therapies and what the, you know, insurance companies make patients go through in order to get a gepant, which won’t put them into rebound. Everything about it seems to set migraine patients up for failure. I was so lucky that I lived in New York and had access to NYU. Had I been and my hometown of Fort Worth, I don’t know if I would have been able to function. I don’t know if I would have able to ever maintain a career or have any of the opportunities that I have had. In working with my last job in fashion producing all of the social media behind fashion shows, going on work trips to Spain, all of those different things, I never would have been able to do that. I probably would be put on one medication and I wouldn’t have been able to well walk out the door, which is how it is for so many people. NYU has an entire appeals team, they work on all the prior authorizations. My doctor doesn’t even work on it. There’s a team that does it. I have access to these medications, and I have, I’m able to live this life, but most people don’t. And so that’s why I started my TikTok account was to share so much of what I’ve learned to people who don’t have the access and privilege that I have.
Joe Coe 15:27
We’re gonna get to TikTok. I have questions about that. So yeah, you were talking about prior authorizations and step therapy, or what we call at GHLF, Global Healthy Living Foundation, Fail First Hurts, because they force us to fail on something first and hurt before we get what we need. I remember calling my insurance company and they kept denying a very simple treatment because the doctor didn’t check the right box. And then the doctor didn’t give the right amount of information on how I failed uncertain triptans and I’m like I finally said to the insurance company, “Can you tell me what the secret code is? Can you just tell me what magical combination of words we need say?” My neurologist will do it. It’s so frustrating. I, like you, have a lot of privilege and knowledge. And it’s like, if I’m struggling to get access, I can’t imagine what someone who doesn’t have the resources that I have or that you have struggle. I’m right with you with that anger. Before we get the TikTok, I want to go back to your job because I think it’s important for folks to hear about that loss. And you talked about the loss of your past life, and the loss of your job. What did that feel like? Especially being a younger person, these are supposed to be like the best years of our career.
Cannon Tekstar Hodge 16:49
I think I was 32 when I was diagnosed with chronic migraine. And my career was skyrocketing. I had started social media for a luxury store in the city called Bergdorf Goodman. And I had done that for five years. And then I had accepted a job as the head of social for a startup. And that’s when my migraine disease had kind of chronified and morphed and to vestibular migraine and the bottom just fell out. It was the most humbling time of my life. And usually when, you know, I hear people now say that they’re humbled when they get an award or when they’re honored, I’m like, “You have no idea what it’s like to truly be humbled.” Because when you lose the ability to walk, and you have to have a physical therapist teach you how to walk down the hall again, after you had the most fun life in the world. That’s humbling. I also have gastroparesis. And the things they make gastropresis and GI patients go through is truly humbling. And then also the whole process of going from having this big career and being in the process and going to parties all the time and having people contact me all the time and invite me to stuff, then just the silence of not really hearing from people. And so many of my friends and acquaintances no longer communicating with me because I wasn’t trendy. That was humbling. Also, when I was able to get a job again, my salary was so much less. I think I took it was like a $40,000 pay cut the next job that I had, just so I could start working again. That was incredibly humbling. And going from overseeing teams and having teams of people reporting in to me and then being kind of back at the bottom of the totem pole. That was incredibly humbling. It took me seven years to get my career back to where it was before migraine and the job that I started in August. I’m back to overseeing teams and doing all of that. I worked at an agency before that as well. So I guess it took me about six and a half, seven years to get back to this place. And to be making as much or more than what I was making when I was 32.
Joe Coe 19:15
Congratulations.
Cannon Tekstar Hodge 19:16
Thank you.
Joe Coe 19:17
Important. What would you go back and tell your newly diagnosed self if you were able to?
Cannon Tekstar Hodge 19:22
I would really emphasize a headache specialists more than anything else because I just had a general neurologist. And I think had I had a headache specialist from the beginning, it may have prevented my migraine disease from becoming so gnarly. Unbeknownst to me throughout my 20s I likely had chronic migraine. It was migraine without aura, but I thought it was sinus infections. And in hindsight when I think about it, it’s now very obvious to me because I was throwing up and my head hurt and it was constant. I was using over the counter meds daily and likely was a medication adaptation headache. And my general practitioner at the time just would dump on my sinuses and tell me that I had a sinus infection. Had he known how to recognize migraine back then I would not be in the situation that I’m in today. So I think getting proper care as early as possible is so critical.
Joe Coe 20:27
What Cannon is bringing up here is really important. So I asked Dr. McAllister to explain why migraine attacks often get misdiagnosed as sinus infections or sinus headaches, and how we can tell the difference.
Peter McAllister, M.D. 20:39
There was a study from the Mayo Clinic some years ago, that took patients who thought they had recurrent sinus headache, or were told, in fact, by their primary care or other doctors that they had sinus headache, and they had them see both a board certified headache specialist and an ear, nose and throat doctor. They had scans of their sinuses, they had scopes put up their nose, etc. And it turned out that nine out of ten of those who were diagnosed with sinus headache did not have sinus headache and the vast majority were in fact migraine. And here’s the overlap. A good minority of migraine sufferers will develop what we call parasympathetic drive. What that simply means is it’s a turn on of not just pain nerves, but nerves that actually line the sinus cavity and are in the nose. And so if one has a socked in pressure feeling around the eyes, the mid-face, or the nose, they tend to go there and say “Oh, that must be sinus,” not realizing that the bad nerve in migraine is the trigeminal nerve. Well, the trigeminal nerve supplies the sinuses and supplies sensation to the nose and around the eyeballs and the upper teeth. So when that turns on, one can feel like a sinus headache. The fact is, if you look at the ENT literature, sinus headache is not a severe one. It’s usually focused over the medial aspect of the eyebrow. And it’s usually associated with other symptoms of acute rhinosinusitis, such as snot coming out your nose, swollen glands, malaise, blood tests that would show an elevated white count, a low grade fever. If you don’t have those things, and these are recurrent, you have migraine by and large. And I have had, here’s an extreme case, asking a woman in my office in a new consult if she has migraine, and she said, “No, but I have sinus headache every month around my menstrual period.” And of course a bit of education led her to understand that that pressure feeling in her mid-face and nose was actually a menstrual migraine.
Joe Coe 22:45
There are so many people being misdiagnosed and so much general misinformation on migraine all over the internet. So Cannon decided to use her social media presence to help people get facts. You’re the Migraine Babe on TikTok. And can you talk a little bit more about what Migraine Babe means to you and why you created this account and why you use TikTok?
Cannon Tekstar Hodge 23:08
You know, I created the TikTok account for several reasons. One, I’ve been involved in migraine advocacy on social media since around 2016. I’ve worked in social media since 2009, so it’s a very comfortable space for me. And in 2016, I helped run the group Migraine Strong and I did that for several years. So I have a lot of background in migraine education and helping communities with migraine. I took some time to myself just because it got to be self care, essentially. And as I was going on to TikTok to study the platform to see what it’s like, because I work in social media, I would see so much misinformation about migraine. And the accounts that I were seeing getting a lot of visability were accounts that were pushing things that don’t have any peer reviewed studies confirming whether or not these treatments are effective. It was a lot of holistic quote unquote cures, here’s a migraine cure juice, which would be ginger and a lot of sugary fruits and maybe some spinach in there. And that was supposed to cure a migraine attack. And I know that there are people who swear that it helps them and then, you know, other people are saying it’s placebo but there’s nothing that’s showing that this is helpful. So I wanted to create a space that was actually sharing accurate information. I think at the time I only found one pain management doctor who was giving out accurate information about migraine but he constantly referred to it as headache. And that just made me so angry because headache is just one of the symptoms of migraine disease. And so I had all of this information in my head. So I just had to kind of get over my own video insecurity and being shy on camera and think of a way to communicate migraine facts to community. It took a while. And then I kind of realized that, I don’t know if it’s horrible or if they relate to it, but people really love to see when I get my hemiplegic migraine attacks. And it’s really easy for me to record, because I’ve worked in social for so long. And all you have to do is like, prop your phone up against a lamp and hit record and edit it later when you’re not feeling so bad. And because my attacks are so physical, it’s impactful. And so it’s a way of showing that migraine is much more than what you think of. I mean, yes, I am so much of a migraine stereotype in that I’m a white woman. But often people have had that image of a woman kind of holding her head and her brows are furrowed in pain. And my attacks are not like that at all. I can’t really walk, I can’t speak clearly, I can’t hold on to things. And so this is a way of dispelling so many of these misinformation about migraine and misinterpretations of what migraine is. And also for the hemiplegic migraine community because that’s a much smaller community and people who are just diagnosed with hemiplegic migraine, it is so scary. And to see that you can have hemiplegic migraine and be active and you can have you know hemiplegic migraine and be productive. And so those are some of the reasons I started it. And it’s kind of grown from there. And I have built this lovely little community as people who now really want the facts and they want the research. And I dedicate almost all of my free time to research. I’m not a researcher, I’m not a scientist, but I am constantly reading NIH studies. I am listening to all of the podcasts that I can about migraine disease. I am going back and I’m listening to videos from the Migraine World Summit. And it’s so important that I share accurate information because I know so many of these people, they don’t have a headache specialist. And so I want to be able to give them the tools that they need to self advocate because at least if they’re going to their GP, they can say, “Here’s a study that is talking about this medication that can be really effective. I’m interested in this, can we have a conversation about it?”
Joe Coe 27:41
Is there anything that I didn’t cover that you feel is very important?
Cannon Tekstar Hodge 27:45
One thing we didn’t really go through is how genetic migraine is. I think a lot of people forget that. And I know a lot of advocates are trying now to change the language, rightfully so, to migraine and migraine disease rather than using migraine in the plural when referring to attacks. Because the more we talk about migraine in the singular and as a disease, the more that society will see it as such, and will begin to understand that this is something that is primarily genetic. Yes, you can get migraines from comorbidities or from TBI’s, but primarily it is something that runs in the family. And I think what’s so critical about that is because of the misinformation surrounding migraine, oftentimes people think that migraine is this isolated incident that happens due to something that you did to yourself. And it is so important that migraine patients, especially those who are new to migraine, whether it’s episodic or chronic migraines, that they know that migraine is not their fault, and there’s nothing that they did in their life to cause migraine disease. Yes, there are triggers that we have and that that can provoke an attack, but the disease is there regardless.
Joe Coe 29:06
One of the first things I did as an official advocate for migraine, and I didn’t want to come out publicly with migraine, I thought it would impact my career, I thought there was a time that I thought I might run for office. And I’m like, “Will they use that against me and say I’m weak and I wouldn’t be able to do it.” One of the first things I wrote as an advocate was an article called, “What If Life Was The Trigger?” Because everyone’s saying, “Well, if you do this or if you do that,” to your point earlier, Cannon, I think we feel, and we internalize as migraine patients, a lot of these feelings that we are in control of this disease in some way. And in some way we are, we can manage things differently and in some ways, but in a lot of ways and most ways, we probably can’t. And we can’t beat ourselves up about that. So I want to leave our listeners with something to remind ourselves about being compassionate to each other. And using our skills like we have seen you use, Cannon, your social media skills, your calling, you found your way to advocate and you’re using it for good. And we all have a skill and we have something to give, and what can we give to make this world a better place. And I think that’s what people get from listening to your story and the work that you do. So I so appreciate your time and energy being on here today.
Cannon Tekstar Hodge 30:29
Thank you so much. Thanks for having me. This has been quite a delight and an honor.
Joe Coe 30:36
Thanks for listening to Talking Head Pain, a podcast that confronts head pain head on. If you enjoyed this episode, give us a rating and write a review on Apple Podcasts. It’ll help more people like you find us. I’m Joe Coe, and we’ll see you next time. This season of Talking Head Pain is made possible with support from Amgen, sponsor of the Global Healthy Living Foundation.
Narrator 31:04
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
It’s a revelation that reflects the depth of migraine pain. Shruti Suresh says during her worst migraine attack, she overdosed on pain meds and revealed she’d have rather die than feel the pain. Today, Shruti is a migraine advocate, shining a light on the emotional and mental health issues surrounding migraine. In this episode, Shruti talks about the systemic nature of migraine, and how we need to address all areas of health when living with chronic disease.
Season 2, Episode 3: Mothering, Migraine & Mental Health
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Shruti Suresh 00:08
You can’t understand it unless you’ve experienced it. It was very intense. I had to push myself to take care of my daughter, who just turned three, and just felt very stressful because there’s a lot of mental health also included in this.
Joe Coe 00:23
Welcome to Talking Head Pain, a podcast that confronts head pain head on. I’m Joe Coe, Director of Education and Digital Strategy at GHLF. I’ve lived with migraines for over 20 years, so I understand what it can do to your life. Today I’m talking with Shruti about the deep impact migraine can have on your emotional and mental health. Shruti’s discussion reminds us of the systemic nature of migraine, and how we need to address all areas of health when living with chronic disease. Welcome Shruti. I’m so happy that you’re on our show today. Looking forward to talking about migraine with you and learning about your experience.
Shruti Suresh 01:03
Thank you so much. I’m so happy to be here. And I really appreciate all the work you guys have been doing.
Joe Coe 01:09
So I’m reading that you run a Instagram page called Chronically Meh. Can you tell me a little bit about that Instagram page and what inspired you to create it?
Shruti Suresh 01:21
Frustration is what inspired me to create it. So I moved to Canada in October 2019. And you know how healthcare is over here. It’s it’s universal health care, so you have to wait a while to get your card. And it takes a while longer to see a doctor. So the weather change really aggravated my migraine condition. And I wasn’t able to see a doctor, I wasn’t able to see a specialist. My GP said it’s not migraine, although I had been dealing with it for like, nearly 20 years. And I couldn’t find any help. So it was very frustrating. And for the first time in my life, I was able to find a support group. And that got me thinking that there are so many people out there who can relate to what I, what I’m going through. And I felt so alone, so there must be more people out there who feel the same way I do. So maybe sharing my story and my frustration, this my life, would probably help at least one person feel a little less alone. And that’s the reason why I started it.
Joe Coe 02:23
It’s really important. And I respect that so much because we have to build our own communities when we feel like we don’t have one. Is that also why you created Migraine India?
Shruti Suresh 02:35
Yes, coming from India, migraine is not fully understood there. It’s just a headache, something that women go through. Most neurologists do prescribe all these regular medications for migraine, but there’s nothing more about it. I was never taught that we can actually take vitamins or you know, I had to include other management methods in my toolkit. So it was hard for me because I felt so alone in this all my life, had people telling me that I exaggerate, that I’m trying to seek attention. And I really know how many people are actually suffering with this in India and there’s nothing, there is no association, there’s no foundation, there’s literally no awareness about it, which is why I created that page just to get the conversation started.
Joe Coe 03:18
How does it make you feel when people tell you that you’re faking or just seeking attention?
Shruti Suresh 03:24
I believe them initially, because I was told that for a very long time. So my mother actually believed me when I said my head’s aching, etcetera, etcetera. I started off with abdominal migraine, I believe. Because I’d see my stomach shaking, I feel dizzy, I feel like throwing up. It was very confusing. And the doctor said, “No, she’s just faking it. She doesn’t want to go to school.” And I was at the top of my class, why wouldn’t I want to go to school. So my mother realized it’s migraine, and I had a lot of headaches. But she didn’t say anything because she also went through it. And she really fought for me, advocated for me. But eventually doctors kept convincing her and my dad that it’s not anything serious. And it took a very long time. So even through that, even after I was diagnosed, people just went on saying, “No, you’re just faking it. It can’t be that bad. Don’t try to get out of everything just because you have a headache.” I did believe them. It affected my confidence. It affected my self esteem. Pretty much everything. So I went from being at the top of my class to not even bothering if I get through. I did get through because I’m super hard on myself. But I’m still trying to get over it.
Joe Coe 04:33
So why is it that so many doctors don’t take migraine seriously? I wanted to get some answers from a leading neurologist. So I sought out Dr. Peter McAllister. He’s the Director of the New England Center for Neurology. Dr. McAllister, for Shruti, we hear that many people like her don’t get treatment or diagnosis for migraine due to doctors misdiagnosing them or, in her case, downplaying her symptoms as not serious, especially in her childhood. What kind of effects can that have on a patient and on the medical system as a whole later?
Peter McAllister, M.D. 05:08
We have some reasonably strong evidence to suggest that early and proper treatment of migraine disease, likely effects outcome later in life. If one has childhood migraine, and indeed 10% of school aged children have migraine, ideally, that would be diagnosed properly, and the proper medications, lifestyle adjustments, sleep, hygiene, etc, would be instituted. If not, what tends to happen with any medical condition that’s not treated is it tends to worsen. And I’ve had children and teenagers who were not taken seriously by health care professionals who have gone from low frequency episodic migraine, a few a month, to a high frequency episodic migraine state and into chronic migraine. And as we know, chronic migraine is associated with much more comorbidities, anxiety, depression, you name it. So that is not a place you want to go. So I think like any medical condition, migraine needs to be recognized, not downplayed, treated properly, and the outcomes down the road will probably be a whole lot better.
Joe Coe 06:19
I asked Shruti to recall her worst migraine attack and describe what the pain was like at the time.
Shruti Suresh 06:24
I remember this year, it was on February 8th. I had had migraine for quite some time, the attacks were going on and on. And I still couldn’t get to see my specialist who I’d been waiting to see for over a year. And I was really frustrated. I tried to do everything possible. I tried to take all medication that the GP had given me, nothing worked. And I ended up overdosing on pain meds. So I ended up in the hospital. That is the worst thing for me to feel so powerless and so hopeless and to be in that situation. After which, the hospital sent me home with over the counter medication. That’s it.
Joe Coe 07:00
I wondered if this was the right approach to take. I asked Dr. McAllister why a provider would tell a patient with chronic migraine to take over the counter medications.
Peter McAllister, M.D. 07:09
Over the counter medications, particularly the non-steroidal anti-inflammatories and the ibuprofen or acetaminophen caffeine compounds, have limited utility in migraine. If you think of migraine as a brain disease, these are nonspecific treatments. If one has one or two moderate severity migraines a month and Excedrin Migraine or a few ibuprofen work, then that’s fine. But the majority of patients, and certainly the ones I see here at my center, have more significant disease. Not only are over the counter medications generally ineffective, but if you take too many over the counter medications, it can lead to something called medication overuse headache, what we used to call rebound. The brain of a migraine sufferer gets very used to certain compounds quickly. And when you take enough of them, when you go to sleep at night and your blood level drops of that medication, you wake up with a headache. And you say, “Huh, what did I use? Oh, yeah, Excedrin or Motrin,” and you take it and you feel a bit better, but all you’re doing is feeding the withdrawal, and you’re getting yourself into a terrible cycle. So sometimes I see patients in medication overuse, and while we do a lot of interventions, the first thing we do is get them off of the offending agents. Shruti says her worst migraine attacks would leave her in a state of despair.
Shruti Suresh 08:33
Feeling like I’d rather die, and I haven’t said this before, I’d rather die than feel this pain. Because nobody believed that it was that bad.
Joe Coe 08:42
That’s really sad and anger inducing that you lived that experience. You would rather die. That is something that we hear a lot from people that are living in pain and don’t see an end to it. It’s something that we have to really highlight is a reality for people with chronic disease and that there is support. If people feel that way, call a suicide hotline. But can you talk a little bit more about what that felt like? Like, why did you get to that point and how?
Shruti Suresh 08:48
Yeah. I think it was a lot of things. So I’m here in Canada away from my family, it’s COVID, stuck with my husband. We didn’t get to socialize, we didn’t have much of a social circle. And it’s just my husband and I. My husband didn’t get migraine. I mean, he’s never experienced it. He hears me talk about it, but you can’t understand it unless you’ve experienced it. It was very intense. I had to push myself to take care of my daughter who just turned three. And just felt very stressful because there’s a lot of mental health also included in this. Feeling that hopelessness and despair and frustration and anxiety that comes along and trying to be a mom and a wife and not fail at that and not feel like, “Oh my God, I didn’t do the dishes today. So he’s probably gonna think I’m not good at this, or I’m not being a good wife,” and things like that. And eventually, it was actually the doctor who’s supposed to be validating and helpful. And he ended up saying, “No, I think it’s just stress. I think you’re just stressed. I can’t refer you to this specialist, I can’t refer you to that one.” And I started feeling it. I’ve always had these thoughts. Every time my attacks get worse, I have suicidal thoughts. It’s been there all my life. I’ve always managed it because it’s obviously the brain trying to escape. But this time I recognized it, it got intense. I called all the hotlines, I was directed to IVR recordings. There was no human being on the other end of the line talking to me about it. I just felt incredibly hopeless. I don’t remember much after that. I just woke up in the hospital the next day.
Joe Coe 10:55
What would you tell someone that’s feeling hopeless?
Shruti Suresh 10:58
That they’re never alone. That there’s always at least one person out there in the world who feels it all. And just sharing that or reaching out and talking to them can actually help you feel a little less alone. And I think that the loneliness is what eats at us. Feeling like you’re the only one who’s dealing with this and acting like this and exaggerating, that is a lot to bear. So if the loneliness is taken out of the situation, it’s easier to manage migraine. If the mental health part of it is balanced, you’re able to cope, then you can deal with the pain.
Joe Coe 11:33
And who is that person or organization or group that helped you feel not alone?
Shruti Suresh 11:40
It’s a Chronic Migraine Support Group Canada on Facebook. I have no idea how I stumbled upon it. I think I was just looking for something. I never even knew that there was a support groups for migraine. I felt shocked looking at all the stories there on the feed because people keep posting whatever they’re feeling. And the first story that day, I saw this lady who had said, “I’ve been going through this for years, my doctor doesn’t want to refer me to anybody else. I don’t have anybody else. I don’t have anyone in my life. So I went back to him and I said, ‘Can you please help me with physician assisted suicide?’ And he gave me the number. For migraine. He actually said we can’t do anything else. So here’s the number.” And that really struck me because nobody should be in that position. And that is what helped me understand that there are so many other people feeling the same way I do.
Joe Coe 12:33
Can you talk a little bit about how it is living in Canada with migraine? You spoke about the weather, but how have you found care in treating your migraine in Canada?
Shruti Suresh 12:43
I think it’s great that the government is offering us universal health insurance. I think not many countries do that. And this is great. But I’m not happy about the fact that I have to wait for a year, year and a half, seven months to see a specialist if I’m really in need of help. Just because I’m not emergent. I’m not happy that when I go to the ER, they send me back again with OTC, so that is something that I’m still struggling with. We have a lot of rules around healthcare. They cannot refer me to a doctor outside of this radius where I live. A lot of things that make it so difficult for you to go and get help when you want to. And this is not something I experienced in India. In India, it’s completely different. Like I can walk into a clinic right now and demand help. And they will help because there are so many doctors. I understand the differences. But yeah, that’s something I really miss. And I think that is what led to me feeling at my rock bottom. And it shouldn’t really happen to anybody.
Joe Coe 13:45
We agree. Can you talk a little bit about how migraine has affected your work life and working?
Shruti Suresh 13:52
I have been a workaholic forever. I think I get that from my dad. I love working. I’m a content marketer, I used to love writing. I’d work 20, 21 hours a day, nonstop and I loved it. Never really got tired. But then I’d work myself to burnout and end up with intractable attacks for months together. And so I’d have to take off time from work, sabbaticals, maybe switch jobs. And I switched about eight or nine jobs within four or five years. No big breaks in between. And over time, it’s just the pain, the anxiety, everything that comes along with it. I didn’t really notice that my memory was fading, that I had brain fog, that I was actually struggling. And then when I did understand and when I did recognize the signs, it scared me so much that I completely lost my confidence. I am really good at what I do. But I felt like I was nothing. So I refused to go back to work. I was so happy that when I got married, I got to move to UAE and over there I was just not ready to go back to work. And then when I got back to India, I moved back because of the weather, migraine just aggravated. I easily got a job. And I stuck to it for three years. At the end of which I was still feeling all these things. I was still burning out, but I just held on for once because I really, really loved what I did. It was crowd funding for healthcare. It was telling people stories, and that kept me going. And when I had to move here, I was more than happy to take a break. And I have to say this, I don’t think I’m still ready to go back to work, which is terrible. I really worked hard to learn, I have worked hard to do what I do. And right now I feel like I suck at pretty much everything.
Joe Coe 15:43
I would disagree because you just flipped that script. You’re telling your story to help people, as opposed to telling other people’s stories to help people, which is a really powerful thing to do. And not everyone can or is willing to do that. So I would give yourself more credit.
Shruti Suresh 16:00
Thank you. There’s one part of the brain which says this, but the migraine side of it says no, you know what, just stop doing whatever you’re doing, and I am still not okay, because it’s social anxiety. A lot of things that I haven’t been able to explain to anybody, just a whole lot of mental health combined, you feel tired all the time. How do you justify that? How do you explain that to someone? I look okay, I look fine, I don’t look sick. I don’t know what sick is supposed to look like. But I feel sick pretty much all the time. That is really hard to explain. For me, when I make a commitment to work, I want to fulfill it 200%. And if I’m not able to do 100%, I quit that day, the day I realized that I can’t. So I’m that kind of a person. Even with academics, I was pretty much like that. It was difficult for me. And it still is difficult for me. Because I know now that any moment, today, I won’t be able to give my 100%. I cannot make commitments. And so I don’t want to commit
Joe Coe 17:00
Has that crept into other parts of your life?
Shruti Suresh 17:03
Every part of my life, especially motherhood. I didn’t really think about migraine when I decided to have a child, which a lot of people do. I don’t know why I didn’t think about it, maybe because I was in India. And that time, I was told that whatever I was feeling was normal. But after I had her, I’ve had that fear, you know, maybe I can’t commit to this. Maybe I’m not going to be a good mom. I’m probably not going to be a good wife. I can’t tell you how many times these thoughts just plagued me middle of the night, I’m just sitting up thinking, “What will happen if I run away today? Because I don’t think I’m making my husband happy. My parents are not happy. So my child’s probably gonna grow up and hate me because I’m going to be in bed most of the time. Or I’m irritated and annoyed.” Because mood disorder comes along with it. I get annoyed when there’s a lot of noise, when people are moving around a lot, when people are eating. These are things people don’t understand. Because they think again, “Oh, you’re just being irritated and you’re just being too picky. You’re just exaggerating again.”
Joe Coe 18:01
Shruti is describing depression, a condition that’s very common for migraine patients. Dr. McAllister is very open with his patients about how depression can affect their migraine and vice versa.
Peter McAllister, M.D. 18:14
Depression can present as we all think of it with sadness, tears, hopelessness, etc. But sometimes it presents quite a typically. And that can occur in men and women. But I’ve found over the years that men can sometimes present in atypical ways such as having irritability, or mood changes, or short term memory difficulties, or appetite change, or sleep disruption. Sometimes once I hear that, and I suspect it may be depression, then I go into education mode and tell them what they may be up against. And occasionally, we firm up the diagnosis after we’ve treated it and they feel better. I find that I enjoy spending a great deal of time with patients, particularly on the first consults, and really get to know them. I get to know their lifestyles, their work habits. I ask about marriage, I ask about exercise, and it’s just bundled into all of the things one should ask in a very open and non-confrontational manner. And I get patients to open up and tell me things that perhaps other doctors may not just by being conversational and non-judgmental.
Joe Coe 19:22
I asked Shruti if she’s ever worked with a professional around mental health.
Shruti Suresh 19:26
I have. I did it when I was a child, but at that time it was not coupled with migraine. I’ve come to understand that my migraine comes from stress, which is actually from C-PTSD, complex PTSD. And I’ve still not able to work on that issue again, because mental health is expensive here in Canada. It was easy for me in India, but at that time, I didn’t know it was just depression and a little bit of anxiety and relationship issues which I was working on. And I had to keep pausing my treatment because I had to move or go to college. But here, I think the only thing that’s stopping me is the cost. It’s incredibly expensive.
Joe Coe 20:06
Seems to be the case in the States as well. It’s really, really hard to get proper mental health treatment. Folks are inundated, and it takes months and months to make appointments, let alone have insurance cover it. It’s a challenge. So we relate to that. But it’s good that you acknowledge it, and that you know that it’s there. And naming some of our challenges is the most important thing and breaking some of that stigma around it. I think that we’re taught to don’t talk about mental health, because people might judge us.
Shruti Suresh 20:38
I don’t think I ever heard people say it, I’m sure people said it, but with mental health, primarily because mental illness runs in my family, they’re very prone to depression. People, generations going back, get triggered by something or the other. And that way, we kind of mess with the future generations. I was always very much aware of the fact that something was not right within me, that I was not, I wouldn’t say normal, but I was not like others. That I did not take issues just like others, that I had these very low moments, that I had these anxiety inducing moments for nothing. I could be walking on the street and hear an ambulance and go into a panic attack. No idea why. But I was aware of this. And I consistently sought help for it. Because when I don’t acknowledge it, I will end up in the hospital worse. That’s what happened in February where I acknowledged it, I did seek help for days, for weeks. And when I didn’t get it, I just, I lost it.
Joe Coe 21:36
Not easy to share that. Hopefully, it’ll help people that are listening to seek help to talk about this. Find the right person, you don’t have to tell everyone, but you can talk to a friend, you could find support online, who could try to work with a professional, all really positive things. My last question for you, how do you feel about diversity and representation in the migraine community?
Shruti Suresh 22:06
Migraine treatment is focused on Caucasian population. I probably don’t have much of a basis for this. But a lot of my friends from back home are in the US doing migraine research, which is very funny. None of them have migraine and other than me, but I gather from them that a lot of the research and the subjects and everything is directed towards the Caucasian population. And I feel that the rest of us are underrepresented. For example, all this treatment that’s available here are the alternative methods like Allay lamp, or the green light therapy, or anything, right. Tens devices are not available in India. They’re not available in countries where you have other races, you don’t have that. Also, when it comes to diversity, I’d say that women are three times less likely to get medication, when they go to the hospital for migraine. My husband went to the hospital with stomach ache. He had kidney stones the first time and then he had acidity the next time. They gave him morphine for both. I’ve been to the ER several times. And it takes a lot for me to go to the clinic, takes a lot more for me to go to the ER. And they sent me home with over the counter. And I think it has to do with me being a woman and me exaggerating.
Joe Coe 23:27
Do you feel that it’s important to see Indian women represented in migraine stories? And is that something that you’re working on?
Shruti Suresh 23:34
Yes, I do. I’m trying to find them because none of them believe that they have migraine. The people who are spoken to they say that their families are not allowing them to go get a diagnosis because they think it’s just a headache. You know, your grandmother had it, your mother had it, you have it. It’s not a big deal. So I find it difficult to find Indian women to talk about this so that we can represent it correctly. But yeah, that’s the case today. And I think that’s something we have to work on fixing.
Joe Coe 24:03
Was there anything that you would have wanted me to ask that I didn’t ask you?
Shruti Suresh 24:07
There’s just a lot like a whole life experience of it. Which kind of hit me when I got here. That’s when I first realized, “Yes, I do have this problem. My problem is valid. Everything that I’m feeling is connected to migraine; C-PTSD, or mental health and migraine, my personality changing and everything.” It was a lot for me to digest. It is still a lot for me to process. And I’m still trying to figure out what I want to talk about and what else I need to bring awareness to. So discussing this with other people helps me process it better, because it’s taken me so many years to get to this point.
Joe Coe 24:47
Well, I really appreciate your time and energy and I know living with migraine and as a migraine patient myself, it’s not easy to do a lot of these things and we have to really budget our time and energy so I appreciate that you budgeted time and energy for Talking Head Pain.
Shruti Suresh 25:02
Thank you so much for this opportunity.
Joe Coe 25:06
Thanks for listening to Talking Head Pain, a podcast that confronts head pain head on. Do you relate to Shruti’s story? If so, send us an email to [email protected]. Or better yet, include a short video or audio clip, and who knows, whatever you share might be included in our future episodes. If you enjoyed this episode, give us a rating and write a review on Apple Podcasts. It’ll help more people like you find us. I’m Joe Coe, and we’ll see you next time. This season of Talking Head Pain is made possible with support from Amgen, sponsor of the Global Healthy Living Foundation.
Narrator 25:52
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Living with migraine as a teenager can be complicated. You’re often misunderstood, teachers wonder if you’re lazy, fellow students question accommodations. In this episode, meet Ellie Donner-Klein, a young professional whose own experience dealing with migraine and getting a proper diagnosis as a teen propelled her to now advocate on behalf of others navigating life with migraine.
S2:Ep2- From Teenager to Migraine Advocate
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Ellie Donner-Klein 00:08
It’s really difficult trying to navigate an academic space where you’re trying to strive for excellence, for learning, to set yourself up for a good future. And then at the same time, be battling a chronic illness that is invisible, so people don’t see it.
Joe Coe 00:22
Welcome to Talking Head Pain, a podcast that confronts head pain head on. I’m Joe Coe, Director of Education and Digital Strategy at GHLF. I’ve lived with migraines for over 20 years, so I understand what it can do to your life. Today, I’m speaking with Ellie, a young professional who shares how she advocated for herself as a student. Listen to how migraine changed the trajectory of her life and what she is doing to help others. Hi, Ellie, welcome to Talking Head Pain. How are you doing today?
Ellie Donner-Klein 00:53
I’m doing great. Thank you so much for having me.
Joe Coe 00:56
And where are you located?
Ellie Donner-Klein 00:58
I’m located in Washington, DC. I’m from California originally. And then I went to college in Connecticut and then promptly moved to DC right after. So I’ve been here for about three years.
Joe Coe 01:06
So what do you do in DC, Ellie?
Ellie Donner-Klein 01:08
Currently I’m working at at health information technology company doing marketing and business development. And I recently just joined them. I was doing health policy consulting right before that.
Joe Coe 01:17
So Ellie, how is your current job helping you handle your migraine attacks? I know that it’s often a struggle to discuss migraine with your employer.
Ellie Donner-Klein 01:26
My current company is absolutely fantastic in terms of helping me kind of live my best life. My boss is extremely supportive of me taking the time that I need. When I was interviewing, and also when I’ve been starting, she didn’t even blink an eye when I was like, “Oh, I have chronic migraine, you know, there may be times that I may not be able to do my job in the same way. But I will always be able to communicate and create contingency plans and health plan, you know, in my absence, to make sure that things work the way that they work.” And she was like, “Okay, I’m absolutely sure that it’s going to be totally fine.” When I was talking with our director of HR when I was onboarding, I told her, I was like, ‘Hey, I have chronic migraine. Can you tell me a little bit more about some of the accommodations that can be made in the office?” She was like, “Oh, we have all of these different things. But also we have a restroom. Typically, it’s for nursing mothers, but like anyone can use it. And it’s very little light, you can turn off the lights, there’s a chair, there’s a nice sofa, we have all of these different things.” But also, one of the most important things is that I actually have flexible working hours. So as long as I’m making my hours per week and per month, I can choose when I can work. And as long as I’m communicating that with my boss, my team, there are no issues.
Joe Coe 02:30
It was really great to hear, Ellie, that your employer is so supportive of you living with migraine. How was the conversation with your employer during the interview process? I think that’s very interesting.
Ellie Donner-Klein 02:41
I’ve been a patient advocate since I was 18. I was diagnosed at 15. And I became chronic very soon after that. And so I went from being pretty able bodied to very disabled in a very short period of time. So my decision when I was starting to interview for internships in college was I’m just going to be very straight up. And I put my blog and the advocacy work that I was doing at that point. I was doing my blog and some social media. And also I just started attending Headache on the Hill, my sophomore year of college, and I’m just very open about it. I put the link in there. And I say, “You know, this is what I do. You know, I’m also kind of a freelance writer with this as well. Here’s all the places where my writing has been featured.” And I try and emulate that migraine is a part of me. It’s a part of who I am, it’s part of you know, it’s shaped my trajectory and shaped where I am currently like I would not be in this position had I not gotten migraine and had my life not fundamentally changed. And I have had a couple conversations that have not gone so fantastic.
Joe Coe 03:41
Can you say what the conversations that haven’t gone fantastic what they are like?
Ellie Donner-Klein 03:46
Some people may not fundamentally understand what’s going on. They may understand that you’re in pain. And they may understand that you’re not doing your job in the way that they want you to be doing your job. But it can be really difficult having those conversations that didn’t go well and feeling like it’s your fault, feeling like you didn’t reflect what you need, or educate them enough about what is going on with your migraine attacks or what you need, whether that’s workspace accommodations, whether that’s teleworking. It was really crushing for me, you know, I had been an advocate for about five years at that point. I have a great understanding of chronic pain and migraine. And I’m really great at talking about it to other people, especially those who don’t really have an understanding yet. And all of a sudden I found myself in a situation where I had no accommodations. And I had to basically figure out like how do I best take care of myself while trying to keep my job because I needed to keep my job. I need to be able to pay my bills, I needed to be able to get my medical care. And it was a really difficult process. And I still think to this day, one of the most important things I took away from that is that you’re not going to be able to have everyone be on your side. Not everyone is going to understand. The most important part is how do you best protect yourself? How do you put up some those boundaries, put up some of those barriers and say, “You know what, I’m in a lot of pain, I need to go home. If you need me, I can work from there. But if you were very staunch in your position that you don’t want me teleworking, that’s okay too. And I will come back tomorrow, and we will recalibrate and figure that out.” So it was very difficult process for me.
Joe Coe 05:17
Ellie were so lucky to experience that. I have a similar experience at Global Healthy Living Foundation. As you can see, and the people listening can’t see, I’m doing this interview pretty much in the dark, because I have a migraine today. I’m light sensitive. And I’m able to do these adaptations and not get judged. And I think that that’s really important because like you said, Ellie, it doesn’t make us feel like we are not being productive. We are productive in different ways. And we have to embrace the ways in which we can be productive and do things in the manner in which we are able to do it. Because we have a lot of value to give, as you said, you have a lot of value to give to your employer. What was your worst migraine attack like? How did you feel? What went through your head? How are you emotionally?
Ellie Donner-Klein 06:03
My worst migraine attack, I think was when I was a junior in high school. This was the first really prolonged attack that I had experienced. Previously, my attacks had ranged anywhere from four days to about a week to a week and a half. And this attack lasted basically the entire spring semester of my junior year. So about four and a half, five months. It was one of the worst things I’ve ever experienced, because I don’t remember a lot of it. I was in so much pain, that my memory just wasn’t working. And it was really difficult because I was in school and I was trying to you know, I’m very ambitious person. I love academics. And all I wanted was to be a normal kid doing normal things. You know, I used to play soccer, I used to play violin very seriously. And all of a sudden, I was experiencing central sensitization. I had allodynia, getting into the shower hurt. My mom is a is a doctor and she had no idea. I was like, “I can’t take a shower because it hurts me.” She was like, “What are you talking about,” she was like, “Just turn the water cooler.” I was like, “The cold water hurts, the warm water hurts, the hot water hurts, everything is hurting. I can’t tell you how to change this or what’s going on.” And at that point, as well, I was also experiencing severe fatigue. Washing the dishes would put me down for hours. In addition to that, you know, I was trying to go through school. But the migraine attacks were so severe and the pain was so severe. And also I was also intractable. So medications weren’t working either. So at that point, I was unable to read, write, or focus, which doesn’t really bode well when you are trying to get through high school. So dealing with that, and also trying to deal with getting a neurologist or headache specialists that could help me because at that point, I think I had seen 10 doctors at that point, who kind of just went, here’s medication, try it, come back in three months. And no one really understood just how difficult that was for a 16-17 year old kid to basically not have her life anymore and lose everything about her identity, and also be in such severe pain that days blended into each other. Coupled on top of that there is also dealing with professors and dealing with the school about absences and miss work. So it was a lot of stress.
Joe Coe 08:20
It’s really important for people to hear that experience and also that you had such a resource in your mother being a physician, and it still took over 10 doctors, and I think that’s the challenge that we all face. I’ve often wondered, oh, if maybe I knew a little bit more about medicine, I can get treated faster. But it seems like even with that there’s a really big gap in understanding migraine as a disease and how it manifests with people. And those symptoms that you talked about, a primary care physician might not recognize as migraine symptoms right away. Did you find during that younger experience that there were people that either really understood what you were going through, or really didn’t understand what you were going through?
Ellie Donner-Klein 09:04
Yes, it was very kind of polarizing experience. I had some teachers who were absolutely amazing, understood that, you know, they knew me before the attacks started or, you know, when I was episodic. And they really understood that this was an illness. This was a disease that I was experiencing, and I was experiencing severe disability. And they didn’t hold that against me. They didn’t say, “Ellie, like you’re not doing your work. You’re lazy.” They understood, no, Ellie wants to do the work. She wants to do things. She’s just physically unable to do that right now. And I was very lucky. I had a guidance counselor who really advocated for me because there wasn’t really a framework at my school for people with disabilities at that point. I mean, this was almost 10 years ago, and my school just hadn’t really had to deal with anyone going through what I was going through or if they did, it wasn’t really public knowledge. And so there were a couple of times that I did have to deal with teachers telling me that they weren’t going to give me accommodations because I didn’t deserve them for multiple reasons. One of the reasons, which I now laugh about, is that one teacher had told me that, you know, it wasn’t fair to have a test be pushed because other kids have extracurriculars as well. And I just sat there laughing going migraine is not an extracurricular, it’s not at all. And in fact, I can’t read or write, which means that I cannot prepare for a test. And additionally, my memory was so bad at that point, because I was in so much pain that I was like, how am I supposed to remember all of the US presidents, in order by year, if I can’t even read the book to get it done? It was a really difficult experience. And I think that’s part of the reason why I started talking about my experience online through advocacy, because I didn’t know anyone else like me. And I was the only person at my school, in my friend group, and the migrant community, which was alive and well, but I didn’t really see a lot of younger people in it. And so I was like, I don’t see anyone that looks like me in this space, really. And it’s really difficult trying to navigate an academic space where you’re trying to strive for excellence, for learning, to set yourself up for a good future. And then at the same time be battling a really difficult and severe chronic illness that is also invisible, so people don’t see it.
Joe Coe 11:14
If you had to give a student or family one piece of advice for navigating student life with migraine, what would that advice be?
Ellie Donner-Klein 11:24
My advice would be, especially if you’re seeing a doctor, and you have a doctor who can provide documentation, you are entitled to reasonable accommodations. There are reasonable accommodations that can be made. I got lucky in the sense that I found my champion soon. And I had one in college as well. I, when I was picking which college I was going to attend, having a very good office of disability was paramount. It was actually a lot of the reason why I chose the college that I did. So finding a teacher, a guidance counselor, someone who is receptive and open to learning about migraine, about what’s going on with you, is really important.
Joe Coe 12:02
So why is it that so many doctors don’t take migraine seriously, I wanted to get some answers from a leading neurologist. So I sought out Dr. Peter McAllister. He’s the Director of the New England Center for Neurology.
Peter McAllister, M.D. 12:15
Once you get your head around the idea that migraine is a medical condition, it should be no different than getting someone accommodation for asthma or diabetes or Crohn’s disease or any other chronic medical condition. So I think part of what doctors do, in addition to taking care of their patients, is to advocate for them. In high school, there is a process and a program known as a 504 plan, because it was a statute number 504. And it allows for reasonable accommodations for those who have a chronic medical condition. And many times patients and their parents have no idea that migraine would qualify for that. What it does is it codifies that they have the condition, and it allows them to have flexibility. If the child misses school because of a migraine, they’re allowed to make up work. If they miss an examination, they can repeat it. They can have more time to get homework in if they’re in a really bad cycle, etc. I advocate, in those who have significant functional disability, for their migraine to get on a 504 plan. Because as I say, migraine isn’t your fault, you did nothing to deserve it. And you might as well take advantage of these programs. Now many universities will allow the 504 to transition into college. So I often am asked to write a brief letter that someone has high frequency episodic or chronic migraine, they’ll occasionally miss some classes to have those excused, etc. So I think that patients and their parents should call out their doctor to make sure they’re advocating both in the high school and college level.
Joe Coe 13:53
And one follow up question. Folks might not know what functional disability is, can you give a brief definition of that?
Peter McAllister, M.D. 14:00
When we think of disability, we often think of crutches or wheelchairs, etc. Functional disability means the disease process, that is the attack of migraine, has caused you to miss something that’s important to you. So functional disability centers around missing work, missing family obligations, missing social obligations. I’ve had patients who have missed vacations. The occasional patient who has missed most of their wedding day. What we say is that the good news is migraine is a non-lethal condition. But the toll that it can exact on one’s life can be quite profound and functional disability is that.
Joe Coe 14:41
Migraine has affected Ellie in her life as a student. And I also wondered if it’s had an impact on either her faith or in her relationships.
Ellie Donner-Klein 14:49
It’s impacted me in all aspects of my life. To be honest, I felt like I was a very different person before I got sick. Starting with the faith. So I’m Jewish and I am very proud to be Jewish. And I have, you know, it’s been a very big part of my life. You know, I grew up going to synagogue every Friday, and I went to Jewish camp over the summers. And once I got sick, it completely changed my relationship. I couldn’t go to services, and I couldn’t handle the lights. And I did one summer at camp, I think this was when I was episodic, just turning chronic at that point. And it was really, really difficult because I wasn’t allowed to keep medication on me, for good reason. I mean, I understand you’re a young kid, I was 15, almost 16 at that point. So I had to go to the infirmary every single time. And obviously, when you’re at camp, and you’re hiking, and you’re doing other stuff, it can take a long time for you to get to the infirmary and get the medication. So my attacks were not great. They actually really got in the way of my experience. And so I didn’t actually return to camp after that. Part of that was for that reason, but also, because, you know, I kind of wanted to see what else I could do. I went to France next year for a study abroad program, and also had similar issues there. My relationship with spirituality and migraine really changed, I think, when I got to college, because I just was not able to put time into going to services and doing the things that I wanted to do because I need to take time to rest. I was a full time student, I was managing clubs, and I, you know, I was in a sorority, and I needed to take care of myself and prioritize my work and what I was doing. And it really made me question who I was and what I was doing, because I was like, well, if I’m not going to services on Friday, what am I doing? What does that mean, for me, as a person who identifies as Jewish, and who feels like Judaism is a major part of my culture and who I am? And what I quickly realized was, there are a lot of ways to be spiritual, there’s a lot of ways to live your life, your faith, and, you know, through some of those tenants that I grew up with, doesn’t necessarily need to be that I need to physically be in that spot. And I think releasing myself from that expectation of feeling like I had to be somewhere to do something was really critical. And the other place that I think really was really key as well is that fasting is a part of Judaism. There are some small fast, there are some slight longer fasts, and the biggest one, generally, at least I’m reformed, is Yom Kippur. And when I was younger, I used to fast, A little bit before my Bat Mitzvah and then after my Bat Mitzvah, I used to fast. And as we all know, sometimes with migraine, fasting can lead to migraine attacks. And it was really difficult for me, because I felt like I was letting my family down, I felt like I was letting the people around me down. And I really struggled with it. But one of the tenants in Judaism is, you know, you’re not supposed to harm yourself. And if you are sick, you are not supposed to fast on Yom Kippur. If you have an illness you’re not supposed to, to fast. And even though that’s there, and a part of my religion, it was still really difficult for me to internalize that, and to say, it is okay for me to eat. And it’s okay for me to do what I need to do to keep myself healthy and, okay. It’s been a really interesting thing for me, especially, you know, with the rise of virtual services as well, it’s been a lot easier, you know, I can control my environment a lot better. I can have the lights off, I can have the sound down. You know, there are a lot of different ways. But I think what I’ve learned is that your religion and your faith is not bound to a specific space. You can really live your life in a lot of different ways embodying some of those really important values and tenants by prioritizing your health and what you need, and not feeling guilty for not being able to worship or live your life in the same way that the other people in your community are.
Joe Coe 18:46
So powerful. I want to bring up a concept that I know you know, tikkun olam, healing the world. So as a migraine advocate, how are you healing the world?
Ellie Donner-Klein 18:58
I am healing the world by talking publicly about my journey. Part of the reason why I started my blog was because I wanted other young people to know that they weren’t alone and better understand that there are other people who are going through similar issues, whether it’s migraine or another chronic illness. There’s a whole community of us out here that loves and supports each other through some of the hardest points of our lives. The other thing is that when I was 19, so my freshman year in college, I actually had a blood clot. I did not get care for four days. I went to the ER and I had a doctor tell me that I had slipped on my arm wrong. And then that it was peripheral neuropathy and refused to run tests. So four days later, I ended up back in that same ER and had to advocate for myself, and they refused to test me because of the notes in the file. And I ended up having to say, you know, “I’m gonna leave. I’m going to leave if you’re not going to treat me.” And the doctor was like, “Where are you going to go?” I mean, I went to college in the middle of Connecticut. So she was like, “Where are you gonna go and it’s midnight.” It was like, “I don’t know. But if you’re not going to treat me, I’m gonna leave, I need to take care of myself and you’re not helping me in any way, shape or form. You’re refusing to run a test.” So she ran a test that came back that I had a blood clot in my right brachial vein. This is in February. So if I had fallen, it was little icy, like it could have just launched become a pulmonary embolism. It was then when she came back after that CT scan, and said, “If you hadn’t advocated for yourself, I would have never known that this was here.” And I just burst out in tears. Because it was in that moment that I realized even more that me as a white woman who was you know, I was in college educated, my mom’s a doctor, I armed with medical literacy, I understand how to talk about my health, and I had been doing things for a long time. And I was like, if I’m still struggling to get the care that I need, there are so many other people that English is not their primary language, that they don’t know what’s going on with them, they may be having invisible pain, but doctors may not understand what’s going on with them because you need to be able to translate what’s going on with you to be able to get that medical care. But if you’re in pain, and also racism also plays a part in this as well, and you have black or brown skin, there’s a huge history of systemic and medical racism as well. That experience really cemented to me that there is a much larger conversation than I need to be taking a part in. That addressing health equity and addressing health disparities is something that needs to happen. And specifically also in the migraine community, it is people who are privileged and who are white, who need to be able to start talking about this in a way so that we then we can really truly support our BIPOC community and members. We’re all experiencing varying levels of the same thing. But adding in access social needs, income inequality, also with this in migraine treatments. So that experience really helped me realize I wanted to start making changes in the world. At that point, I didn’t really know exactly how and so that’s when I kind of ramped up on the advocacy. And so when I was working in health policy, I was working to advance social determinants of health policy. At my current job, I’m actually part of a Health Equity Task Force. And we actually just released our first blog couple weeks ago that I co-wrote with one of my co-workers, talking about the role of health IT and the role of data in making sure that there’s gender affirming language, that sexual orientation, that race, language preference, ethnicity, disability status is all included in our clinical documents that are sent every single day. We’re doing some of that work internally. And it’s actually it was really rewarding for me to actually start doing this at my current company because we work with a lot of different entities across the United States in healthcare, and us saying, okay, in some of our markets, people aren’t really sending gender, race, language, any type of health equity data that needs to be sent. And so I kind of see my role with tikkun olam in two things which is one, to be a resource and support for people who are either just starting on their marketing journey or need someone who understands what’s going on and can talk with them. You know, one of my best friends from college became episodic our senior year. We moved in together in DC, and she’s been chronic for the past two years.
Joe Coe 23:12
Chronic versus episodic migraine. That’s a concept that many people don’t understand. But Dr. Peter McAllister says the definition is rather simple.
Peter McAllister, M.D. 23:22
We somewhat arbitrarily call those folks who have 15 or more headache days per month, of which at least half of them are migraine or migraine like, chronic migraine, and those who have 14 or less headache days, we call those episodic. And the question is, why? There’s very little daylight between someone who has, say, 13 or 14, versus someone who has 16 or 17. But it’s the extremes, it’s the ends of those that make a big difference. Those who have one or two or three migraines a month are very different, we found, from those who have 17, 22, 28 migraines a month. That latter group is more likely to have more significant functional disability, more likely to be depressed or anxious, or have a history of trauma, they’re more likely to be overweight or obese. They’re more likely to have a lower socioeconomic status, because even if they’re good at their job, calling in sick repeatedly tends to get one fired. So we’ve identified a more disabled group from a less disabled group. It’s not to say that episodic migraine isn’t awful at times. But certainly having one or two that you can treat with an acute medication is really a different animal than those who have more than 15.
Joe Coe 24:41
Whether you’re chronic or episodic, it’s important to get a diagnosis and get on a good treatment plan. We have to wrap up but before we do, I want to ask you, how would people find you, people that want to connect with you?
Ellie Donner-Klein 24:56
People can find me in a lot of different ways. I’m very active on social media. People can find me on Twitter, on Instagram, I also just made a Tik Tok a couple months ago too. I’m on Facebook as well. And most of my writing is through my blog, which you can find by searching Chronic Migraine Ellie. I just bought my own domain, which was a huge milestone, and hoping to launch that by early next year. So that’s how people can find me and I’m always very responsive to DMs and other messages. That’s part of the reason why I really love being in the migrant community is being able to reach out and support other people and be a part of their lives and their treatments.
Joe Coe 25:30
Twitter, Instagram, Facebook is Chronic Migraine Ellie?
Ellie Donner-Klein 25:34
Yes, both my Instagram and my Facebook is Chronic Migraine Elley, and then my Twitter is Migraine Ellie. And I think I’m also Chronic Migraine Ellie on Tik Tok as well.
Joe Coe 25:45
This has been such an important discussion to have with our community. We often don’t hear about how migraine impacts students, how migraine impacts our relationship with faith, and how migraine impacts the ways in which we find employment. So by talking about all of those different topics, you’re helping to raise awareness and to amplify voices of people who likely aren’t heard, and need to be heard more. So we hope that our audience appreciates your energy and your story as much as I do. And I know that people have a lot to learn from you and with you, and I appreciate your time and energy.
Ellie Donner-Klein 26:27
Thank you so much for having me. It was a pleasure being on today.
Joe Coe 26:30
Are you a student or young professional living with migraine? I want to hear from you. Send us an email to [email protected]. Better yet, include a short video or audio clip, and who knows, whatever you share may be included in a future episode. Thanks for listening to Talking Head Pain, a podcast that confronts head pain head on. If you enjoyed this episode, give us a rating and write a review on Apple Podcasts. It’ll help more people like you find us. I’m Joe Coe, and we’ll see you next time. This season of Talking Head Pain is made possible with support from Amgen, sponsor of the Global Healthy Living Foundation.
Narrator 27:18
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
When you think of migraine many of us don’t think of or see Black men. In this episode, meet Qasim Amin Nathari, who takes us on his migraine journey while getting deep about the intersections of race, masculinity, and faith when it comes to managing migraine.
S2:Ep1- #BlackMenHaveMigraineToo
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Qasim Amin Nathari 00:08
It’s very rare that I see or hear Black men in the space. And I don’t know if that’s just the thing about the Black man and we don’t want to talk about our pain and we have to be strong and tough, but me, I’m going to talk about it. I don’t buy into the stigma that it makes you any less of a man or makes you any weaker.
Joe Coe 00:24
Welcome to Talking Head Pain, a podcast that confronts head pain head on. I’m Joe Coe, Director of Education and Digital Strategy at GHLF. I’ve lived with migraines for over 20 years so I understand what it can do to your life. Today I’m talking about Qasim Amin Nathari about the unique challenges he faces living with migraine as a Black man. From his treatment in medical settings to navigating his faith in chronic disease. Qasim, how are you doing today?
Qasim Amin Nathari 00:53
I’m doing good, Joe. How are you?
Joe Coe 00:55
I’m great. Where are you located?
Qasim Amin Nathari 00:57
I’m in Jacksonville, Florida. The Sunshine State.
Joe Coe 01:02
And how are you feeling today?
Qasim Amin Nathari 01:04
Today I’m doing good today. Today’s a good day. You always grateful for good days.
Joe Coe 01:09
What does a good day look like for you?
Qasim Amin Nathari 01:11
Good day for me is when I’m even manageable in terms of migraine pain. Of course the perfect day is when I’m pain free. And I do get those. I’m fortunate you know that through my management I’m able to squeeze out an occasional completely pain free day. But for me a good day is when I’m at least able to function enough to get my normal day to day routine done. My writing, research, those things that I would do on a normal day that I just can’t do during migraine episodes because of you know, obviously managing the pain, the lack of focus, and all the other things that come along with the challenges about migraine, particularly when you’re like me, I’m chronic severe. I’m not intractable anymore, thank God. But I’m chronic severe. So I have more not so great days than I do great things, but I’m grateful for the good days.
Joe Coe 02:02
I am too I know the feeling as someone who lives at migraine myself. I want you to think about your worst migraine attack or your worst day. What was that like? And how did you feel?
Qasim Amin Nathari 02:13
My worst migraine day ever. I can vividly remember it because it was one of the few times over the more than two decade journey that I’ve had with migraines, I’ve been in the emergency room a handful of times. I’m not one to go to the emergency room. It’s just a bad experience. And as I commented the other day on another blog, the emergency room is probably the worst place for a person who lives with migraine because of just the level of care or lack of care and sometimes just a lack of empathy. So for me the worst migraine day ever was back in 2009, when I had been in an episode for three day. Nothing that I did would get me any relief. And finally I just gave up and went to the emergency room. And before I was even seen beyond signing my name and things like that I was there for almost eight hours. After I waited all that time, finally was seen. You know what they treated me with, Joe? They gave me an Imitrex.
Joe Coe 03:14
Probably could have taken at home.
Qasim Amin Nathari 03:16
Could have taken it at home. I had taken it at home already during the preceding time before me coming there. Obviously it didn’t work, which is why I walked into an ER. So my suggestion of the IV treatment that I had received once at another hospital that worked effectively was kind of a Compazine. I had a whole protocol that I had worked on with another doctor before I moved to Philadelphia and like the attending at that particular emergency room really wasn’t even trying to hear like listening, “Yea. Okay, okay. Okay.” Left came back. Imitrex and some water. Take this, follow up with your doctor. That was it.
Joe Coe 03:52
Like Qasim, hundreds of people living with migraine often have terrible experiences in the emergency room. Dr. Peter McAlister is a board certified neurologist and the director of the New England Center for Neurology. When do you tell your patients to visit an ER and what do you tell them to communicate when they’re there?
Peter McAllister, M.D. 04:12
I look at the emergency room for a migraine patient as a really bad idea, by and large. Emergency rooms are very important for acute care, car accidents, heart attacks, gunshot wounds, etc. But it’s no place for a person with migraine disease. It’s loud, it’s bright. Again, going back to the stigma of migraine, you may get some personnel there who have no idea of the disability of migraine and not treat it seriously. Often, hospitals’ emergency departments will use nonspecific medications and things like narcotics, which really studies have shown do no good. They can dull you up and make you tired to go home and fall asleep on your bed but you wake up with a migraine the next day. So almost always one should try not to go, in fact I consider it failure on my part, if one of my patients tells me that they had to go to the emergency room. My job is to give them acute medication and a backup plan and a rescue plan such that they don’t have to go to the ER.
Joe Coe 05:14
Qasim says that when someone shows up at the emergency room with a serious migraine attack, he wishes emergency room personnel could view the condition with greater urgency.
Qasim Amin Nathari 05:23
For a migraine patient, and this is not to over exaggerate, the pain of a person who’s at the highest level of migraine can be equivalent to what a person may feel that is sitting in an ER that got shot. You just don’t see the blood. So because it’s an invisible pain, it oftentimes can make people tend to just be, I’m trying to be fair, I don’t want to say dismissive, but it doesn’t move them, it doesn’t give them a sense of urgency around your care and your treatment. So I want them to know that because you can’t physically see the pain, the way that I describe it is as bad as it is. And I need to be treated the same way you would treat a person who needed to be triaged because they were bleeding, you didn’t want them to bleed out. I would expect the same kind of treatment.
Joe Coe 06:08
That’s really powerful.
Qasim Amin Nathari 06:09
And the other parts of this, Joe, is that I would want to be acknowledged that as a Black man, because I know something about my migraine protocol that I’m not just subconsciously looked at as the person that just wants to come in there and get a higher level of opiate or drug. And that happens sometimes, you know, where Black men and women of color that have been in you know, severe migraine episodes, and are treated the same way. And I kind of wonder, sometimes, it has to go through my mind, because we living in America, we don’t frame everything or view everything through the lens of race. But it’s sort of reality that we have to accept, and oftentimes wonder that with my resume, my credentials or things that I’ve been blessed to do in my life, that if that was presented to somebody, and I was of a different complexion, if I would be treated with more of a sense of urgency, if I went and went in and say, “Oh, yeah, I ran a communication department for a major city. I put together a communication mechanism for a mayor who’s now a US senator.” If I went in, as we say, flexing, then I might be treated differently than just a person who’s just coming in pretty much at the mercy of the hospital staff, who just humbly seeking some care to get out of the pits to this horrible episode that I’m in.
Joe Coe 07:21
And that must be a really hard balance between knowing a lot about your disease, knowing that structural racism is real, that the studies show and prove exactly what you said. But also being vulnerable in an attack, how do you balance, wanting to advocate and educate with needing to get these physicians and other practitioners kind of on your side to get the treatment that you need in that moment?
Qasim Amin Nathari 07:48
I’ll be honest, Joe, it is no balancing act. I press on, even in the worst pain. I like to use this term. I’m politely relentless, when it comes to advocating for myself, particularly in those moments. And honestly, there’s been a few times that I’ve been successful in being able to do that. But there’s other times like I actually went to a neurologist for one visit here when I moved to Florida, that I was referred to by my new primary here at the time. And my experience with this one doctor was so bad that I told my primary, I’m not going back to him, let’s find another neurologist. And the reason the experience was so bad, Joe, is because I was trying to give him my experience with a medication that he was insistent that I try again, because they’ve made some improvements to it. And I said, “Listen, I appreciate you. But I’ve studied the improvements that they’ve made in this medication. And the improvements aren’t significant enough to make me think that I’m going to have any different outcome than what I had when I took it before. So I’m kind of reluctant to try that. Can we try something else? And then if we have to circle back to this, this remixed version of the same medicine that I tried years ago, and I’m willing to go back to it. But I don’t want to start with that. I don’t want my baseline to be a medicine that I tried before, that had horrible side effects and a horrible outcome for me.” And he was just adamant, “Oh, no, it’s completely different. You know, you need to forget about what you went through before. Almost essentially it’s a new medicine,” is what he try to tell me and I’m in my mind, I’m like, I did enough research. No, it’s not they just rebranded the medicine already know this.
Joe Coe 09:20
Qasim, says it can be difficult to have a two way conversation with a doctor, because often it feels like the doctor already made up their mind about treatment options.
Qasim Amin Nathari 09:29
Sometimes in those spaces, and I love doctors. I have developed some good relationships with doctors. But you know what has been said about doctors sometimes. They have this complex sometimes that once they’ve made a decision in their mind is shared in terms of you being able to give input, but the ultimate decision that they consider to be the right decision is the one that they’ve already called out in their thought processes. So there’s not really much input you can give other than just being heard, you’re not going to really, for me, I don’t see that you’re really influence their decision in one way or another.
Joe Coe 10:04
Can you talk about stigma about being a Black man with migraine? When we know that the picture an image of a migraine patient is not a Black man, it’s not a Black person. It’s a woman in their 40s and 50s that’s white, that has a career. How do you address that?
Qasim Amin Nathari 10:23
It’s difficult. It’s a challenge. And honestly, it’s a work in progress. I’m still trying to figure it as I go. I think one of the things that has worked for me is that I haven’t really been all over the place in the migraine community in terms of treatment. So other than the one bad experience I mentioned in ER, and then the other doctor that I mentioned previously, my circle has been pretty small. So I don’t have to navigate the stigma as much as I would, if I didn’t have a certain level of care, meaning if I were just underinsured, and was going to just random doctors, because I’m grateful that you know, I have good insurance. And I’ve been able to develop relationship, particularly with a couple of neurologists, over the lifespan of my migraines, I haven’t had to deal much with the stigma, but invariably, it does pop up. And for me, when I’m in those spaces where it has popped up, I’m always even just advocating for the next person. I’m not just there in that moment, although it’s my pain. I’m always thinking, what can I say or do at this moment that it would be a teachable moment for this person, so that if they have to encounter somebody else after me that is maybe not able to articulate or advocate for themselves in the same way, what would they do?
Joe Coe 11:42
And that’s really important, because you talked about sometimes we have to flex when we have this knowledge and our experiences, but not everyone can flex in the ways that you and I can flex with medical providers. So really doing that work for the next person when we can because sometimes we can’t and that’s okay, too. But when we can, it’s really, really important. I heard something very exciting that you’re starting a initiative, a hashtag on social media, #BlackMenHaveMigraineToo. Can you tell us a little bit more about that hashtag and why you felt you needed to create it?
Qasim Amin Nathari 12:19
Well, first and foremost, I’m going to give credit where credit is due. I’m creating the hashtag, and I’m creating the not for profit organization by that same name. But the actual term Black Men Have Migraine Too is actually the title of an interview that my friend and colleague, she’s my shero, in the migraine advocacy space, The Migraine Diva, Jamie.
Joe Coe 12:42
Oh, we’re know Jamie so well. Jamie is a personal friend.
Qasim Amin Nathari 12:46
She’s a warrior. She did an interview of me and she called the interview “Black Men Have Migraine Too.” It’s on her blog. And that interview resulted as a result of one morning, part of my morning routine while I’m up writing after I’ve, you know, said my prayer, have my tea, what have you. I’m always watching Good Morning, America. I’m watching and they’re doing a segment on migraine, which is rare, you know that in most of those shows, they rarely ever do segments on migraine. And lo and behold, they’re doing this segment with Dr. Jen Ashton and her guests, one of the people featured that day, was this woman who was known as The Migraine Diva, Jamie. So I was just blown away by you know, her advocacy and her passion around this. And I actually tweeted her and Dr. Jen, how I appreciated the segment and being in that space to be able to bring so many people into the awareness of migraine. And from that point, Jamie contacted me, and we forged a bond around our shared experience and she interviewed me. We did a very extensive interview, which I would recommend everyone go to her blog and read it because it really gives a lot of insight on a number of variables. So for me, it started to become clear. As I became engaged in the migraine awareness and advocacy space, that something had to be done because for far too long, the face of migraine has traditionally been what it’s been. Middle aged straight white women. Even in the advertising until you started to see a Serena Williams and Whoopi Goldberg. I’d never seen a Black person or a person of color in a migraine commercial. So for me after she did this article, immediately that title stuck in my mind, and I said, you know what, I’m going to own that, and we’re going to run with it. So my goal now is to try to do as much advocacy on behalf of Black men and people of color in general, but we have a lot of people in that space. But from my knowledge and based on the research I’ve done and I’m continuing to do, I don’t see a lot of people involved and engaged in that space, particularly focusing on Black men. And I think that’s really tragic, because in doing research, I found so many high profile Black men who lived with migraine. So I think that at this point, you know, we need to do more advocacy. And we need to even have the pharmaceutical companies move the needle, in terms of even featuring some of these people in their commercials. There’s no reason whatsoever that I can see that I see a Serena Williams commercial. And I don’t see a Dwayne Wade commericial.
Joe Coe 15:18
Very true.
Qasim Amin Nathari 15:19
He wanted to wear tinted goggles and a competition committee ruled against him. They said that he had an unfair competitive advantage. Meanwhile, the lights of the American Airlines Arena was triggering migraines for him during games. So we’ve seen all these things done. So I think for me, we need to get high profile Black men that have lived with the challenges of migraine, we need to get them more visibility. Thus, also maybe having more Black men who maybe don’t even know that the headache that they’re having is migraine. The awareness needs to be brought more to the forefront.
Joe Coe 15:54
The way that we build communities, they’re so powerful and beautiful with the migraine community. So I really appreciate you doing this work that is so needed and so devalued. We need to really find ways to amplify and spread your message because it is so important. I have another question. You were talking about getting diagnosed, what type of doctor first diagnosed you?
Qasim Amin Nathari 16:18
I was first diagnosed by a general doctor, my primary at the time. I was just having these headaches. And I had experienced headaches enough to know that these weren’t normal headaches. And as I started to describe the nausea and other things that was going with them, he told me all those sounds like migraines. So he diagnosed me and that was my first introduction to beta blockers. He had me on inderal. And then ultimately I’ll follow up with a neurologist. But it wasn’t until 2003 after I had my first hemiplegic migraine that I went full consultation with a neurologist, and I was diagnosed as having migraine disease. Then by 2005, after just having two bad years, I had a horrible two year run from 2003 to 2005. And in 2005, I was doing some research. I was always reading books about migraine and I came across this book called “What Your Doctor May Or May Not Tell You About Migraine,” and it was written by Dr. Alexander Mauskop. And when I read the book I’d go to the back of the book, I find that he runs a place that was called the New York Headache Center. And by this time, I’m back in New Jersey. So you know me, I’m going to write an email, I’m going to get to see this doctor. When I wrote him outlining what my situation was, two days later I got a call back from his office said he wants to see you. And then after my initial visit with him, that’s when I was diagnosed like, chronic severe. So from 2005 up to now I’ve been living with chronic severe to the point now that I’m you know, classified as being disabled, I couldn’t work full time anymore.
Joe Coe 17:57
It’s important for people to understand that you likely will get diagnosed in a primary care setting. Particularly more marginalized folks, we’re not seeing specialists.
Qasim Amin Nathari 18:07
For sure. Because again, most people that are underinsured, you’re not going to be able to afford just being able to go to a neurologist and pay out of pocket. In fact, one of the thing that interrupted my treatment years ago with Dr. Mauskop is that his practice had went to a new insurance practice. So I was treated by him for about a year, maybe a year and a half, then he offers went to all cash. And at that point, I had to stop seeing him. Because I didn’t have the insurance that I have now.
Joe Coe 18:38
We often don’t hear about how chronic illness and pain impacts relationships with faith and how faith can help chronic pain and diseases like migraine. You talked about being religious and praying earlier. Can you talk about how your faith and living with migraine intersects?
Qasim Amin Nathari 18:57
I think now, at this phase of my life, I’m more spiritual than I am religious. I’m a Muslim, I believe that I’ll always be a Muslim. But I’m more spiritual because sometimes when folks talk about religion, it gets bogged down in theology and doctrine. And for me, it transcends that. But certainly faith has played a role. But I’m gonna tell you something, Joe, it’s particularly tricky when you’re a Muslim who deals with a chronic illness. Part of the understanding of Islam, the doctrine of Muslims, is that any type of pain is an expiation for sins and shortcomings. So what oftentimes happens is that I don’t talk about pain a lot, but when the conversations will come up invariably around migraines or whatever, if I’m around one of my Muslim friends, one of them may invariably remind me of that part in that aspect of the faith. Like, you know, that’s the expiation for your shortcomings, you know, for your sins. You deal with the pain now, it lessens the pain, you’ll have to deal with it in a life that come. And that’s good, that’s a noble reminder from a faith perspective. But when you’re going through that on the ground in real time, you kind of would like to maybe have a little bit more of an empathetic conversation around this pain. So that becomes an issue, to the point that many people that are Muslims and they have any type of chronic illness, they won’t share their story a lot, they won’t talk about it, because it’s one of those things that it just kind of becomes ingrained in your indoctrinated with the idea of like, just live through it. Just keep pushing, persevering. A person may make a supplication or pray for you, you know, you know, pray to God shows you mercy in your pain. And then we’ll move the conversation on. So for me, I started to know that I had to really do a lot in terms of my own self care, my own self affirmation, because it’s not really but at least within my circle of Muslim friends, and don’t get me wrong, I have, you know, the few friends I have I considered good friends, they’ll call and check on me. But I don’t think you’re going to be able to have the same conversations with Muslims around pain that you may have with a person that may not be in that space.
Joe Coe 21:08
How do you navigate different religious or spiritual practices like fasting with migraine? We know that that could potentially be a trigger.
Qasim Amin Nathari 21:16
It was the issue for me when Dr. Mauskop first told me in 2005, believe it or not, my first visit with him was during the month of Ramadan, the month that Muslims traditionally fast. And after we went through my medical history and all that, he said, “When I tell you something,” he said, “I know you’re not going to like it, because I know that your faith means a lot to you.” And he said, “I can see that about you.” He said, “The first thing you’re going to have to do, you’re gonna have to stop fasting.” He said, “You can’t fast anymore.” And I looked at him, I’m like, why, he said, “Because fasting is a major trigger for you, you’re in like that worst percentile with fasting would be an immediate thing to send me into severe episodes.” So I had to come to terms with that. But then it made me delve more into how we understand the options to fasting as a Muslim. And I started to read and be more cognizant of the things that you can do outside of fasting and still observe Ramadan, if you can’t fast you feed certain number of people that are poor or less fortunate, and all these other things that you can do. And it also made my practice of the month of Ramadan, a more spiritually rewarding practice for me, Joe, because I wasn’t fixated on a whole idea of just getting through a day without eating or drinking. I started to see what other benefit I could get from that particular month of worship and month of reflection, and all those things that don’t have nothing to do with it. So once that part was removed from my life, and from my practice as a Muslim, then I became more in tune with the other aspects of spirituality that didn’t have anything to do with the quote unquote ritual of fasting.
Joe Coe 22:54
Qasim had to recalibrate how he connected with his religion, since he realized how much of a trigger or strain fasting had in regards to his migraine attacks. I asked Dr. McAlister, to explain the science behind why certain things like fasting could potentially be a migraine trigger.
Peter McAllister, M.D. 23:12
It turns out that the stressors in life can precipitate migraine, and it’s usually the change or the drop off that triggers it. For example, dropping barometric pressure during the storm, the migraine brain is more sensitive to it. The change in estrogen during a menstrual period, the migraine brain is more sensitive to it. And the same thing goes for fasting. So when we fast, we get hypoglycemic, our blood sugar drops. And that drop is felt by the migraine brain and can be a trigger. And we also get dehydrated, although water is certainly allowed in passing, but often it’s not adhered to. And dehydration can also be a trigger. Many patients who talked to their spiritual leader, the religion allows for medical conditions to have an exemption from fasting. So either one can fast and take migraine acute medication as needed, or speak to their spiritual leader and probably they can get an out.
Joe Coe 24:12
Qasim is Muslim. I asked him how the doctrines of his faith come into play when he brings up the subject of migraine.
Qasim Amin Nathari 24:19
You’re going to always have a few friends and people that tell you well maybe try fasting every other day, people who just want to include you in the process. So now they want to give advice in terms of what it is you have to do. So you can cave to that out of peer pressure. But I was one even as a child, I was never moved by peer pressure. So I’m obviously not going to be moved by one now. So I was able to navigate that, but it comes up, you know, people would bring that up in conversations, you know, maybe kind of maybe do a couple of days out the month to get the reward. No, I believe that I worship a compassionate God. I’m still going to get the reward. He’s already given me the prescription on what I can do if I can’t fast, it’s been clearly outlined. So I don’t need to do anything to make an outward show of my faith. I don’t need to wear my faith on my proverbial sleeve and put myself in jeopardy fasting when I know that there’s something that’s detrimental for me. But that process can be an evolution for anybody in any phase when you have to revisit, or realign your life with something that has before then, been a principal part of your faith expression.
Joe Coe 25:20
You just inspired me if people ever asked me what I’m giving up for Lent, it will be unsolicited medical advice.
Qasim Amin Nathari 25:28
I like that.
Joe Coe 25:29
I really appreciate your time. Was there anything that we missed that you wanted to cover?
Qasim Amin Nathari 25:34
No, other than the fact that I really appreciate you having me on. Again, you know, it’s very rare that I see or hear Black men in this space. Although now because of the past couple of years since connecting with Jamie, I’ve been involved. And she’s given me entree and invited me into people, while I’m not the only Black male in that space. But to be honest, other than a few doctors, I actually have been only patient even still. And I don’t know if that’s just the thing about the Black man. And we don’t want to talk about our pain. And we have to be strong and tough. So you can’t get most of us in but me I’m going to talk about it. I don’t buy into the stigma that it makes you any less of a man or makes you any weaker. And I think that in order for us to really be able to spread the word and raise the awareness of this being the challenge for many men that they bear silently. The only way we’re going to be able to break that stigma and overcome that obstacle is through conversation and just being honest and forthcoming and the only way that you’ll get help is by actually just sharing what it is you’re dealing with and seeking proper medical diagnosis and care and then you can improve the quality of your life instead of just living in grin and bear it as they say. That can’t be the path forward. And I think that we all want a life is better than that.
Joe Coe 26:49
You mentioned you have a podcast, where people find that?
Qasim Amin Nathari 26:52
It’s called “From All Aspects with Qasim Amin Nathari. And you can find me out on any social media, Twitter, Instagram, under Amin Nathari. And on my website, aminnathari.com.
Joe Coe 27:04
Thank you so much.
Qasim Amin Nathari 27:05
Joe, appreciate you. Thank you so much.
Joe Coe 27:09
Qasim’s story has something we all can learn from. I would love to hear from you about what from Qasim’s story you found to be most impactful and insightful. Send us an email to [email protected]. Better yet, include a short video or audio clip, and who knows, whatever you share may be included in a future episode. Thanks for listening to Talking Head Pain, a podcast that confronts head pain head on. If you enjoyed this episode, give us a rating and write a review on Apple Podcasts. It’ll help more people like you find us. I’m Joe Coe, and we’ll see you next time. This season of Talking Head Pain is made possible with support from Amgen, sponsor of the Global Healthy Living Foundation.
Narrator 27:59
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Migraine as a child. Migraine on vacation. Migraine at work. Whatever their age and wherever they are, people around the world struggle with migraine. In this episode, we hear from a leading migraine advocate who shares his journey and how he now helps people overcome the stigma of migraine.
“I would get these periods I sort of called them like a honeymoon response, where you’re so hopeful that it works that it actually does for a period of time,” says Carl Cincinnato, Executive Director of Migraine at Work and co-host for the Migraine World Summit. “But then you kind of run out of “hope-ium.” And all of a sudden you go back to your baseline of regular attacks.”
EXTRA- Finding “Hope-ium” to Fight Migraine
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Carl Cincinnato 00:09
I would get these periods I sort of called them like a honeymoon response, where you’re so hopeful that it works that it actually does for a period of time. But then you kind of run out of hope-ium. And all of a sudden you go back to your baseline of regular attacks.
Joe Coe 00:26
Welcome to Talking Head Pain, a podcast that confronts head pain head on. I’m Joe Coe, Director of Education and Digital Strategy at GHLF. I’ve lived with migraines for over 20 years so I understand what it can do to your life. This podcast is a two way connection, and I want to kick it off with one of your comments. This week we heard from writergal54304. And she shares, “One of my favorite podcasts to listen to while I’m cooking or working out. The content is always related to me as a person who lives with migraine disease. The uplifting banter between the host patient provider is why I look forward to tuning in to each episode. This is one happy listener.” And writergal, I’m one happy host. Thanks for your review. We invite you to go to Apple Podcasts, write a positive review and leave an honest five star rating. And wherever you’re listening, make sure to click the subscribe button so you never miss an episode. In this episode, I’m talking with Carl from the Migraine World Summit. Carl’s a longtime friend and powerful advocate for people who live with migraine. In this episode, we discuss hope, relationships, and learn about the most powerful takeaway Carl has received while producing the Migraine World Summit. I’m really excited to have you on Talking Head Pain, Carl. For those that don’t know, Carl is the cofounder of Migraine World Summit, and a world renowned migraine advocate and leader. So really delighted that you are joining us today for this discussion.
Carl Cincinnato 01:59
Thank you for having me.
Joe Coe 02:01
How are you feeling today?
Carl Cincinnato 02:03
Pretty good. I’m actually just recovering from COVID. I want to be really honest with this audience. My son came home from daycare last week. And now the whole house has been living with that. But it’s just another chapter in my health story. And I’ve tackled worse before. So we’re gonna get through this together too.
Joe Coe 02:21
Have you dealt with any of the headache related COVID symptoms.
Carl Cincinnato 02:26
It’s funny, actually, you mentioned that. I did have a tension headache from the virus. And actually just yesterday, I realized that, I didn’t realize it at the time, but actually did have a migraine. And it’s probably the first migraine I’d had in quite a while in a couple of months, actually. I’m in a position where today my migraine condition is so much more under control than it’s ever been in the past. And so I’ve been really lucky in that respect. And there’s been some intentional action taken towards managing it that way. But I’ve been really fortunate as well, there’s no doubt. But yesterday I noticed that, yeah, I had sort of sensitivity to light, pain behind my eyes, and just sort of the aggravating factors that don’t irritate me when I have a tension headache, were playing a role. And so it was kind of cueing me that actually this is a migraine, but it was a lot more mild. And it wasn’t nearly as severe as it has been in the past. So it was kind of a good news story in that sense that it was a migraine, but it was very manageable and relatively mild.
Joe Coe 03:21
So interesting, because when I got my booster shot, one of the things that you’re hearing a lot from folks is headache and migraine after vaccination, and I did the booster shot, not the two original doses. I did get a headache and I took an over the counter medication, my headache went away. And I was like, this normally doesn’t happen. This is different I kind of like this. Is this how the world is when they get quote unquote, regular headaches. It was really interesting that that over the counter medication worked really well which hasn’t been my historic experience.
Carl Cincinnato 04:01
Yeah, as the same for me like I kind of see them as lollies now I used to throw them down so frequently when I was younger, that I’ve never sort of used them anymore. But yeah, maybe there’s something there maybe taking a bit of time away from them. And particularly if it’s only a tension headache. I say only a tension headache. They can still be disruptive. But yeah, it’s nice to be able to feel relatively normal and respond like other people do.
Joe Coe 04:22
Definitely. So I want to learn a little bit more about what makes Carl tick, and how you got involved in this crazy migraine advocacy and education world. So can you tell me a little bit about your migraine story?
Carl Cincinnato 04:38
Yeah, be happy to. Migraine for me didn’t really become a problem until I was actually underway in my career. So I landed a job, a graduate position, at Unilever, which is kind of like the European Procter and Gamble. It’s a big I call it FMCG company, Fortune 500. And I was playing sport at a work event, would you believe, and it was touch football it wasn’t tackle. But I went to score and had to dive to try and make it without being tagged and landed on my shoulder and damaged some nerves in my shoulder that kind of linked up to my neck. It was painful at the time, I thought I’d broken my collarbone or something. But I recovered from the actual acute injury. But within 18 months after that injury, I found myself getting frequent debilitating migraine attacks. Now, up until that point, I’d maybe had one migraine a year, if that. It was something that I kind of swept under the carpet just like everyone else that we know, has migraines that respond to two Tylenol, or very rarely get them and don’t even worry about it. That was me right up until sort of my early 20s. And then all of a sudden, I was getting these attacks that were occurring at the worst possible time, I would have a meeting and the nerves for the big meeting would trigger an attack. I remember colleagues were saying to me, “Carl we’ve just finished, we’re going to go get some lunch, you want to come.” And I was like, “I’ve just got something to finish just quickly, I just need two minutes.” And the sort of stress of that thinking, “Okay, let me just wrap this up,” was enough to trigger a migraine, and then I couldn’t go to that lunch and it ruined the day. And I had to kind of make excuses. And so I experienced the full gamut of emotions and isolation and pain and depression that you get from chronic pain that’s out of control. And the fear and shame of having something that was so invisible, and no one really sort of saw or understood. It was awful. It was the most miserable experience of my life up until that point and ever since. Having gone through that I was sort of stuck in that place for a while. At that point, like I went and saw a doctor, of course, as you do. Doctor didn’t help. So I went to see a specialist, saw a neurologist, and I thought we’re sort of making some progress. And so we did that for a while. And that sort of ticked along. Long story short, fast forward seven years and I was still getting chronic migraines. I had spent thousands of dollars each year speaking to the so called specialists, the best people that I could find and that I could throw money at. I went and saw four different types of optometrists, including a behavioral optometrist, an Irlen Syndrome specialist. I got tinted lenses and glasses and all sorts of tests done, I started Ayurveda practitioner that look at your eyes and your tongue. And I did the whole gamut just like everyone else. We all try everything you can think of. And we’re still getting nowhere. I would get these periods, I sort of called them like a honeymoon response, where you’re so hopeful that it works, that it actually does for a period of time. But then you kind of run out of hope-ium. And all of a sudden you go back to your baseline of regular attacks.
Joe Coe 07:53
Wow, I can’t help but think about the term hope-ium. What provides hope, who takes away our hope, and how do we fight back against migraine? Carl, in such powerful way, describes how many of us feel, and I hope that you find ways to bottle up your own version of hope-ium, as he called it, or find a way to take the baseball bat and hit back.
Carl Cincinnato 08:15
Over time, it’s kind of like a form of torture, where you’re attacked on every front. You’ve got the physical element of migraine where it’s a brutally painful attack, crippling pain, used to vomit from the pain itself. Nausea and vomiting is super common in migraine. And so physically, it’s awful. It’s really painful, it’s disruptive. But then the other more insidious attack is the psychological element of it, which I think doesn’t get spoken about as much. And that’s the constant knife edge that you walk on as someone with chronic migraine, where something as harmless as a change in weather could trigger an attack. And that’s just an awful way to live. It creates a perpetual cycle of anxiety and stress and attacks, that then feeds on itself. So that it gets just worse and worse. It creates like a downward spiral. It was the most difficult thing in the world for me to crawl out of. And I’m so fortunate today that I have but I know that in doing so, I left behind a lot of people who are still trapped in that dark room. And I got support from places where you wouldn’t traditionally have thought. It wasn’t from the doctor. It was from other people that had migraine. And so when I did crawl out, I felt this overwhelming sense of gratitude. And since then, I’ve wanted to sort of pay forward some of the support that I received to other people, not only because I felt like I owed them, but also to help people in the future that suffer from migraine, that they didn’t have to go through the same thing that I went through or that others are still struggling with and also to support the next generation. We know migraine has a genetic component. I’ve got a son now. I hope to have another child in the future and I want my children to have a better future if they’re going to have migraine as well. So that’s kind of my story. It’s kind of what’s led me to do what I do today. I wear a couple of different hats, but I’m all consumed by helping people with migraine.
Joe Coe 10:13
And you’re very effective at doing that, Carl. Do you bottle up hope-ium? And where’s your supply from now?
Carl Cincinnato 10:22
Yeah, I mean, it’s funny. When I was in chronic pain, and was experiencing high levels of anxiety. And because I had a chronic health issue that was out of control, I was depressed. I think that’s a really healthy and normal reaction to a bad situation. And like most people under torture, it’s usually only a matter of time before you crack. And I’ve likened migraine to getting hit with a baseball bat in a pitch black room where your attacker has night vision goggles, can see exactly where you are, and can whack you at regular intervals. And you just never know when it’s coming. First time you get hit, you fall to the ground, you crawl back up, you sort of put on a brave face. The second time you get hit, you might feel a little bit dizzy, you may vomit from the pain, but you get hit time and time again over weeks and months and years. And you just end up in a corner rocking back and forth, you are a mess. And I think that that’s normal. And when I spoke to Professor Dawn Buse, who’s a specialist psychologist that focuses on migraine, she told me that one of the most liberating things that I’d ever heard, and she said, “That that’s normal. Carl. Like, you’re going through a really difficult time with chronic pain, you’re allowed to feel that. You shouldn’t be ashamed of feeling that.” That was a really important message for me to hear at that time. And that’s why I’m sort of sharing it now. Because I think that it’s normal to feel depressed when you have pretty awful situation. And you shouldn’t let that feeling make you feel worse, to come back and answer your question about hope-ium. Hope-ium is really important. It was something that I sort of held on to and I think it’s really dangerous if you lose hope. And I would always try to maintain that the glass is half full. I can’t say honestly that I always felt that way during the most difficult times. But that’s where having people around you. And having a support network. And being able to reach out when you really need it is so important.
Joe Coe 12:18
The visual of being beat up with a baseball bat is sticking with me. Have you ever taken the bat and beat migraine back?
Carl Cincinnato 12:28
It’s funny, it’s like I never consider myself like a migraine warrior, to be honest. I’ve never sort of thought about it in the way of me sort of attacking back. But I think that that can be helpful for some people, if that motivates them. But for me, it’s about trying to find the healthiest version of myself and working towards that. Whilst knowing at the same time that no one’s perfect. When I was a chronic migraine, I was really, really strict with everything. And I needed to be to kind of crawl out and I was doing all the things that I needed to do, both from a medication and lifestyle and supplements and trigger management perspective that I could, as well as tracking. Did all of it for three months, I was super, super strict, and people did understand. Since I’ve gotten better, I’ve learned to find a bit more balance. And I think that’s the right thing for me to do where I’m at now, because I’m sort of low episodic. This isn’t necessarily something I would encourage people to do who are chronic, but now like, you know, if I want to I can drink alcohol, I can have some rubbish food and stay up late and that’s okay. I can’t do everything all at once. Like I can’t have a terrible food, have a deadline. a 6am start the next morning, and then go out drinking all night like that would trigger a migraine. I’m not superhuman, but I kind of know what my limits are. And so I can be quite dynamic in how I choose to let my hair down on certain occasions like a wedding or a birthday, for example. But by and large like you know Monday to Friday, I try to maintain a pretty healthy lifestyle and exercise and do the things that you’ll hear the experts on the Migraine World Summit tell us but we should be doing. I try and walk the talk to the extent that I can.
Joe Coe 14:02
About how old were you when you first started getting chronic migraine?
Carl Cincinnato 14:06
I was in my early 20s. But my first migraine attack was before I was 10. I remember getting stomach pain when I was in grade one and I had no idea what it was. And it was only later when I learned about pediatric migraine and how it can sort of manifest as stomach pain and cyclical vomiting syndrome did I realized it was most likely migraine.
Joe Coe 14:29
Did you find that as your symptoms intensified in your 20s that it impacted your social and romantic life?
Carl Cincinnato 14:38
100%. Yeah, it just pulls you away from everyone. It kind of creates this massive barrier between you and the rest of the world. I had seven years of chronic migraine. The turning point for me was when I worked at Johnson and Johnson. I had a holiday with my partner at the time and we went to a destination in the northeast coast of Australia, to the Gold Coast. And I had a migraine attack every single day of this holiday that was for her birthday. Ruined the holiday. I came back from that trip and I resigned from Johnson and Johnson. I left the biggest healthcare company in the world, to ironically take care of my health. To this day, unless they’re listening, they don’t know that that was the reason why I left. I was still at that really bad place, still ashamed. It was still out of control. And I don’t know why I left. And I started documenting my experience. I started writing a blog because I thought, once taught, twice learnt, and I could apply my learnings in the topics that I was interested in, and I felt like I needed to learn more about and that helped me heal. That was part of my recovery. And that’s when things started getting better.
Joe Coe 15:47
Can you tell me a little bit about the work that you do now through Migraine World Summit? What’s the objectives? How are you helping people?
Carl Cincinnato 15:55
Yeah, so the Migraine World Summit, the goal is to reduce the global burden of migraine, it’s a pretty lofty goal. But basically, we just want to help others. And we know that information is power. There’s actually been research to suggest that even if you just tell people more about migraine, they can do better in terms of managing their condition, in terms of managing the anxiety of an attack. If you know what’s going on, if you’ve got a broad idea about what’s happening, then it just makes it like okay, this is the aura phase, this is normal, it will pass and then I’ve got the migraine attack. And you know, I should time my treatments appropriately. And I should take my treatment before I get into the full swing so that it’s more effective. And if I have gastroparesis, I should take something to address that and avoid oral medications. We know that if people have a good foundational knowledge for migraine, that it can really make a difference and, and potentially turn the tide. So that’s where the Migraine World Summmit comes in. We have each year 32 experts that feature at the event. And we cover a range of different topics that have been voted on by our community. And so it’s really just an opportunity for people to watch and attend for free. And hopefully find out, it just needs to be one thing, just one sort of idea, or one sort of lightbulb moment that can unlock something for you, that can help you turn the corner.
Joe Coe 17:17
How many years has it been around?
Carl Cincinnato 17:21
This is our seventh year. We started in 2016. And it’s grown into the largest event for migraine headache patients in the world since then.
Joe Coe 17:29
Amazing. And in those seven years, what has been the most interesting thing you’ve learned?
Carl Cincinnato 17:35
One of the things that sort of sticks with me the most was that comment from Dawn Buse, the professor and psychiatrist, about it being okay to be depressed. And when you have chronic pain, being depressed is a normal reaction. And I think that’s a personal one for me, because it was just something that I really needed to hear at that time when it wasn’t going easy for me. And I think that that’s probably the case for a lot of others who watch it. There’s probably something different for a lot of different people. But I think the nice thing is that we do cover a range of different topics and we have new topics each year. But we also have recurring topics and experts talking about things like chronic migraine. Like, chronic migraine we’ll cover every year because it’s good to hear a couple of different perspectives from some experts on how they approach it and what they do and what they look for and what chronic migraine can look like and what other things like chronic migraine that actually chronic migraine like there’s a host of conditions that present this chronic migraine but they’re not. And you might have the wrong diagnosis, for example.
Joe Coe 18:31
Is there anything that I didn’t ask you that you would like me to?
Carl Cincinnato 18:34
We haven’t really spoken about the stigma of migraine. But that’s, I think, a large part of why I kept it hidden in Johnson and Johnson because I was so vulnerable and ashamed. And I think that that’s part of our challenge. I heard a wonderful story about someone who is part of the Migraine World Summit team who took the opposite approach. And she told her employer about migraine. And her supervisor didn’t know much about it. And they reacted really well. She sort of spoke about what it felt like, what happens during an attack, and after that conversation, they made these accommodations for her. They were far more understanding when she got hit with an attack. And it just made everything like just easier. She didn’t have to hide it, she didn’t to fake. All of that takes energy. Paula Dumas, the cohost with me on the Migraine World Summit, said that lies make you sick. And I don’t think hiding migraine’s a lie. But it does take an extra energy to do. And when you’ve got a limited number of spoons, it’s nice to be able to have one that you don’t need to use it all day, every day at work. And so I think that for change to happen with stigma and with migraine, for migraine to get a proportionate amount of funding that it deserves. And right now it’s not even 10% of where it should be. For those things to happen, we all need to talk about it. And I don’t think it’s fair to ask someone who’s in a very vulnerable position that maybe has a hostile supervisor to start coming out, I think that’d be the worst thing is if you brought this up at work, and it didn’t go down well, or if you lost your job, which is not legal, by the way,
Joe Coe 20:10
Getting fired wouldn’t help with your migraine attacks.
Carl Cincinnato 20:13
No, it wouldn’t. And it’s illegal to do that. But there are people like that. And we’ve all worked for good bosses and bad bosses. And we know how it works with bad bosses. So I would say exercise judgment, but we need people to come out and talk about it. We shouldn’t hide it from family and friends, we should be prepared for the snarky comments about isn’t it just a bad headache, and come back with a correction. We need at least a vocal majority of people doing that. I don’t think until we do that will things really, really change. There’s so much great work happening with Headache on the Hill and advocacy and policy happening at the federal level. There’s things happening at state level as well that I know the Global Healthy Living Foundation have done and training advocates, which is brilliant. But we need more, we need people to sort of talk about it. And we need the stigma surrounding migraine to be dismantled. It’s not something that a quick awareness campaign and an ad or having a celebrity will dismantle. It’s talking to your peers about it, sharing the facts about it, and sharing your story about it. So I think if there’s one message that I’d like to leave people with that are listening to this, it’s to maybe have a chat to someone about it. You might be surprised, because you might hear that, “Oh, I get I get migraines too.” Well, I have migraine as well. And it may just improve your quality of life by not having to kind of hide that thing about you. You may find another opportunity, it may open a door, it may open you to something that helps you turn the corner. So I think that for change to happen, we need to kind of be part of it.
Joe Coe 21:43
So true. 100% agree. It’s one of the reasons why we started Talking Head Pain. I and my organization didn’t feel like certain voices are being heard, that I didn’t see LGBTQ people, I didn’t see a lot of men, we didn’t see BIPOC folks, we didn’t see working class people, people that don’t have a formal education that can’t access some of this like very technical information. So we really are in agreement with that perspective, that we all have to do what we can where we can.
Carl Cincinnato 22:16
Yeah.
Joe Coe 22:17
And also know that it’s not always our responsibility, someone else can do it. It’s not always, you know, our job as people living with the disease to be the advocates, we have to find allies. It’s great when we have an employer that, like the Global Healthy Living Foundation, that would let me go take naps in the middle of the day when I needed to do that, because they knew that that would ultimately make me more productive and happy and healthier, which is a radical, but shouldn’t be a concept in our society. So really, really agree with your perspective. Thank you so much for taking the time to share it. I think that the way you share your story is so powerful and unique and something that I hope fills up people’s hope-ium and that people feel better after listening to this.
Carl Cincinnato 23:07
It’s been an absolute pleasure, Joe, thank you so much for having me.
Joe Coe 23:12
Thank you for taking the time to listen to Talking Head Pain, a podcast that confronts head pain head on. If you enjoyed this episode, please give us a rating, write a review, and share it with someone who needs to hear it. I’m Joe Coe and I’ll see you next time.
Narrator 23:31
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Although it’s been framed as a “middle-aged white woman’s disease,” migraine doesn’t discriminate; it affects one in seven people across all genders and race. But the right diagnosis is often more difficult to find for people in marginalized communities.
In the second of a two-part episode, Sarah Shaw and her doctor Courtney White, MD, discuss the need to educate the medical profession, especially in Black, Brown, and low-income communities, on the many symptoms of migraine so they can better serve patients in the BIPOC and LGBTQA+ communities.
EXTRA- Part 2: TikTok Migraine Doc
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Dr. Courtney White 00:09
The biggest thing I’ve learned from patients is the medical system is not fair for anybody, but especially for low income people, for people who may not be in the medical field themselves.
Joe Coe 00:24
Hi, I’m Joe Coe, host of Talking Head Pain, a podcast that confronts head pain head on. In the last episode, you heard from my colleague Sarah and her amazing neurologist, Dr. Courtney White about the real life implications of living with migraine as a marginalized person. Let’s pick up this conversation where Sarah talks about how she first learned she had migraine, and how Dr. White is pushing the medical profession to better serve migraine patients.
Sarah Shaw 00:52
I found out that I was having a migraine attack from my pharmacist, which is amazing, I’m glad that she was able to tell me. People from Black and Brown communities, sometimes they are not able to get to see a specialist. And sometimes their only interaction is maybe they go to the primary care doctor one time a year. And for the primary care doctor to be like, I see that your symptoms you’re talking about that, sounds like it’s not just a normal headache, it sounds like that’s migraine. That would be amazing if we can get more education, and more resources in front of primary care physicians, OBGYNs, pharmacists, that the communities that we both belong to most likely frequent the most. I’m all for, like you said, a headache specialist, but sometimes transportation issues, other things like that are barriers to care. So I absolutely agree with you on that.
Dr. Courtney White 01:41
Yeah, there’s only about 700 headache specialists in the country. So getting to a headache specialist is definitely not easy. I know my particular institution, we have a bunch of different projects going. But one of them is educating emergency physicians, especially Black and Brown communities, that’s where they go when they have migraine attacks. But ER is the worst place to go when you have a migraine attack. There’s bright lights, it’s loud, there’s a lot going on and it’s not the ER doctors job to be able to diagnose you from that one attack, their goal is to treat you, make sure you’re safe, and then send you home. But we want to be able to say hey, if someone has come in their symptom seems typical of migraine, they respond to migraine treatment that’s done in the ER, here’s just a little information so you can bring it back to your primary doctor, you can bring it back to your OBGYN and just like bring it up so that maybe this can be discussed a little bit more. So that’s one project we have. We’re also trying to work with other primary care physicians GYNs and family medicine in the Greater Philadelphia area to create a network so that the doctor can talk with a headache specialist just to get some advice, and then be able to care for the patient themselves. Because again, there’s a lot more family medicine practitioners, primary care practitioners than there are headache specialists. So it allows them to be able to care for patients with this while also having access to the experts in that particular field. The third thing our institution is doing is we’ve actually created a year long course, that advanced practice practitioners, such as nurse practitioners and physician assistants, as well as physicians in other fields who don’t have a, did a year fellowship in headache medicine, can do this online certificate course so that they can now practice evidence based headache medicine in their own communities. So my institution in general is trying to take care of this issue of lack of providers having the knowledge and being able to teach them so that it’s a little bit easier to access.
Sarah Shaw 03:35
Those are all great resources and great information that that you just share with us, especially the part about Tik Tok. As I was thinking, like I remember when I first started off on my migraine journey, as weird as it was Reddit was the place where I got all of my migraine information from and now, obviously, I’m connected with GHLF and my doctor, but that’s where I first started out. So it makes sense that especially for the younger generations, they’re on social media, they’re looking for resources. So why not put the best of both worlds. I often call you the Doc that Toks, on there because if I’m thinking about it, too, that’s where people that may not have access to doctors, they may be getting their information from there first, obviously, we want them to go to the doctor, we want them to ask the questions, but you’re just a great resource out there to help, to break through the fog and at least have them start somewhere so that then when they get ready to go to their primary care physician and or they are going to see a specialist that those educational resources are out there. And I wish I had that when I had first started off on my journey six years ago. And speaking of what I’ve learned, what has been one of the most important things that you have learned from your patients.
Dr. Courtney White 04:45
So the next thing I was going to talk about, you know, social media has helped me as a provider to really hear the experiences of people with chronic illnesses and just hearing the stories that people talk about their experiences with other providers. It’s changed how I have interacted with patients. I think, not that I didn’t already have empathy, but I really have a better understanding, hearing the stories from other patients. I remember one particular patient, she had connective tissue disorder, she it was, you know, related to her migraine. You know, I said with her, I was like, oh, yeah, we’ll do this map. But I know but you know, because your connective tissue disorder, we’re not going to do that she was like, most people don’t even know about this disorder. I’m thinking, like, I follow at least four or five people on Twitter who talk about this. You know, and their experiences and why these treatments are typically, you know, obviously, everyone’s an individual, but it kind of makes me more aware. And I think the biggest thing I’ve learned from patients is, the medical system is not fair for anybody, but especially for low income people, for people who may not be in the medical field themselves. Even being in the medical field yourself can sometimes be a challenge, and being able to find those cracks in the system and try to figure out ways around them. I don’t think I as an individual could change the whole healthcare system. But for an individual patient, what can I do to make their experience better, because I too, have had experiences, poor experiences with providers. And sometimes it’s not until I disclose that I’m a physician that I sometimes get appropriate care. And it really shouldn’t be that way.
Sarah Shaw 06:13
I absolutely agree. It’s like that whole thing of me showing up to the doctor’s office with sweat pants on and getting kind of like dirty looks and rushed out. And it shouldn’t matter what kind of job you have, if you are on disability, where you come from, everyone deserves access to care. Speaking of the relationship that you have with your doctors, and the relationship I have with you, what does a good provider patient relationship look like?
Dr. Courtney White 06:37
I think it’s a partnership, more than one person telling the other person what to do. And that goes both ways. So a doctor should never tell the patient, like you’re doing this because I said so because I’m the doctor. The doctor should explain this is what I’m recommending, because of XYZ. At the same time, a patient that you know is going to get the most out of it is, one, being able to speak their concerns or if they’re not able to do something, or if they didn’t respond to something because we’re not going to know if you didn’t take a medication because you couldn’t afford it or something like that. Now it is on the part of the clinician, of the provider to be able to create an atmosphere, that a patient will be comfortable bringing up those concerns, but it is on the patient to take those recommendations, give them a try. If it doesn’t work, kind of report back why it didn’t work, things like that is a partnership where both parties are able to talk freely and clearly as two humans, and not have that hierarchy, but also have that mutual respect for each other.
Sarah Shaw 07:35
I absolutely agree with having this partnership. And before, pre-Dr. White, I didn’t feel like I could have those conversations about quote, unquote failing a medication either, like I felt ashamed, like it was something that I did wrong, that you know, was my body not reacting and so I often would not say anything to my previous doctors, because I felt like it was my fault that I would get shamed. And it’s so important, like you said, to create that safe space, to let the patient know that it’s not their fault, if something isn’t working.
Dr. Courtney White 08:10
And I will definitely say it’s not that you failed the medication, the medication failed you. Again, it is on more the part of the provider to create that space. I think another thing that is super helpful for the relationship is understanding that a lot of things are out of both the patient and the doctors hands with the healthcare system with the way insurance authorizations are so the open communication should go both ways. You know, a patient should feel comfortable being able to say, Hey, I stopped this medication because I didn’t like how it made me feel. And the physician should also say this is what I want to do. But I may not be able to because of XYZ reasons. Or this is going to take a while to get you approved for this, I have to do this extra work. Please understand that it’s not going to happen overnight, it might take a couple of weeks, it’s the system. Open communication is going to be the key to any beneficial patient doctor relationship.
Sarah Shaw 09:05
Yes, transparency is so key. And just, I’m someone who just likes to know like ahead of time, and even if it’s not ahead of time just letting me know about what’s going on. And that’s something that I know that, like has happened between the both of us. Whenever I started a medication, or if our nemesis insurance gets involved, which it has so many times like, got to do a prior authorization. That’s something that a lot of people may think is mundane, but it’s so helpful for me to know on the side that it’s not something that I’m doing wrong or there’s an evil being at play that is preventing it from moving along. So I do, and patients, appreciate that communication and transparency. And I want to know why a podcast like Talking Head Pain is important specifically for people that are part of the Black community, part of the Queer community. Why it’s so important to talk about migraine within those intersections.
Dr. Courtney White 10:01
Any kind of way of getting information out is super helpful. And people do a different ways. Some people go to Tik Tok, some people go to Twitter, some people listen to podcasts. So this is another medium in which we can educate. And we can advocate and to let people know that migraine is real. And also, this is a great opportunity to say that migraine does not discriminate, and that even though it’s been framed as a middle aged white woman’s disease, that’s not the only population. So it’s very important to talk about these disparities, because doctors get taught that not only is migraine one specific way, but only one specific type of person. And that is not true. There was a study that was done called the American Migraine Prevalence and Prevention Study, where they asked people about symptoms they had with their headache, and they kind of calculated whether they had the diagnosis for migraine based on the actual clinical diagnosis and the criteria for the diagnosis. Then, these folks were asked, has doctor ever told you had migraine? And what they found was there really was no difference in people who had the symptoms and probably had migraine. And in fact, it may have actually been a little bit higher in Black communities. However, being actually diagnosed, it was always middle aged white women or white women in their 20s and 30s. So I think it’s very important to really talk about the fact that people are not getting the diagnosis, because it’s not framed as such. There are a lot of groups, it’s been talked about from the physician level with the American Academy of Neurology, the American Headache Society, all the way to patient advocacy groups, where we’re talking about when we discuss migraine, when we show pictures in different media, who are we showing, and we want to make sure that people can see, oh, someone who looks like me can have this condition. And I think that will also empower communities as well. This disease affects men, women, non binary people, all races, there is no discrimination. This is a very, very common disease that affects one in seven people. And we need to talk about it more. And we need to really empower people to get the right diagnosis and treatment and advocate for themselves so that they can live their best life.
Sarah Shaw 12:07
I know that everyone listening could not agree more. And I’m glad that I finally figured out that migraine does not discriminate, because I’m going to tell you, I did not realize, you know, I was like, oh, this can’t be migraine because only white people get it. And that is not the case. So everything that you’re saying is so true. And I hope people out there listening, I hope that this does help them understand that, as Dr. White said, this is not your fault. This is not something that you did to yourself, and that it does not discriminate. So please make sure to follow what’s going on with your body and speak to a doctor. On that note, I just want to thank Dr. White for sitting down and having a tea hour with us. It was so great to chat and talk outside of the doctor’s office.
Dr. Courtney White 12:55
Thank you so much for having me. It was a real pleasure.
Joe Coe 12:57
And I just want to say that if people could see me nodding throughout the whole discussion, it was so powerful. And I know that you two, are people that I look up to as inspirations and real leaders in this really important discussion, particularly when we’re trying to reach people that are hard to reach. I think about my experience as a gay man. If I didn’t work in this field, I wouldn’t be on good treatments right now, I’d be on okay treatments with my primary care physician who’s a smart man, but not on great treatments, and there are great treatments out there. And there are great neurologists and there are great family practice doctors that with the right education, like you said Dr. White, can really impact our lives as migraine patients so I really appreciate the energy and the devotion that both you and Sarah share and really happy that you both were able to do this special episode of Talking Head Pain.
Dr. Courtney White 13:56
Well, thank you so much for having us, Joe. It’s, this is great. The work that you’re doing to spread the word and spread awareness is insurmountable.
Sarah Shaw 14:04
I just also want to say thank you to Joe for being a great teammate and helping, amplifying and passing the mic to the voices that really need to be heard.
Joe Coe 14:15
I am Joe Coe, host of Talking Head Pain and I will see you next time.
Narrator 14:21
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
As if migraine isn’t tough enough, imagine being a person in a marginalized community who must convince their doctor that their symptoms are real? Sarah Shaw went through six doctors before finding Courtney White, MD, who not only advocates for migraine patients but is one herself.
In the first of a two-part episode, Sarah and Dr. White discuss their migraine journeys, racial disparities in treatment, respect of the patient, and using social media to educate the BIPOC and LGBTQA+ communities.
“I am a neurologist and a headache specialist. I am also someone who does have migraine disease,” says Dr. White. “And I’ve gone through the experience of having difficulty finding a physician that would diagnose me and then treat me appropriately.”
EXTRA- Part 1: “Please Believe Me, I Have Migraine”
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Dr. Courtney White 00:09
I am a neurologist and a headache specialist. I am also someone who does have migraine disease. And I’ve gone through the experience of having difficulty finding a physician that would diagnose me and then treat me appropriately.
Joe Coe 00:23
Good day or good afternoon, depending on where you are listening from. I’m Joe Coe, host of Talking Head Pain. And I’m here with two very special people. You may have heard Sarah Shaw’s episode, Black, Queer and in Pain. We have with her today her neurologist, Dr. Courtney White, to really have a real discussion about that relationship, some of the challenges that Sarah has experienced and some of the insights that Dr. White has developed as she practices neurology. But you may also see Dr. White on Tik Tok and Twitter. So we’re really excited to have both of you here. And to have Sarah be the special host of this Talking Head Pain episode. So Sarah, I turn the mic to you.
Sarah Shaw 01:12
What an honor. Thank you, thank you, Joe and thank you Dr. White for joining me here today for my inaugural hosting episode. First thing Dr. White, what was your tea of choice today?
Dr. Courtney White 01:25
So I have a London Fog that I got from Starbucks before coming here. It’s Earl Grey tea with steamed milk and vanilla.
Sarah Shaw 01:33
Yum, I’m a huge also tea aficionado as well. My tea was a Earl Grey with a splash of cream today. It’s a, as we know, sometimes caffeine can trigger migraine, but I cannot go without my tea. So
Dr. Courtney White 01:49
I hear you. Yeah, without without at least one cup of tea, the day’s not happening.
Sarah Shaw 01:54
So, I just want to thank you for sitting down and talking with me about the intersections and a lot of just different things that, for both of us. Sitting in a room with you at my doctor’s appointments, for me, that has been one of the first times that I actually was in a room with a another Queer Black Neurologist. And that, for me was just mind blowing of just having like feeling seen, feeling heard, feeling safe. I just wanted to thank you for having that space and holding that space for me and other patients that are like me. I want to talk a little bit about the work that you do and what that means to you. Can you tell the listeners a little bit about who you are, what you do and how you’re helping Queer BICOC patients like me.
Dr. Courtney White 02:40
By training, I am a neurologist and a headache specialist. This means that I’m a physician who has undergone special training in management of neurological disorders, including, you know, migraine, other headache disorders, like cluster headache, trigeminal neuralgia. I also treat people with stroke, seizures, dementia, things like that. But I did an extra year of training specifically in headache medicine. Part of the reason was because I am also someone who does have migraine disease, and I’ve gone through the experience of having difficulty finding the diagnosis, finding a physician that would diagnose me, and then treat me appropriately. And I’ve had migraine disease for about eight years now. And actually, the first time I saw a headache specialist myself was a couple weeks ago. So part of what I want to do outside of seeing patients, a big part of my career is also in education and advocacy. And I think it’s important because you don’t get a lot of time in a doctor’s office with your provider just because of the constraints of the health care system. I want to be able to provide education to the community, and also empower them to be able to make decisions and advocate for themselves with their doctors so that they get the best treatment possible for them for their migraine and other headache disorders.
Sarah Shaw 03:57
That is so wild that you just now saw your first headache specialist just a few weeks ago. You technically were my first headache specialist. I did see one years ago but then I lost my insurance. And I just wanted to take a step back as the different barriers that we have as Black women trying to get our pain believed, trying to, for me, it took I think you’re my sixth doctor. You were the first one who spent more than 20 minutes in an office with me. And I just wanted to talk a little bit about why it’s so important to spend more than 15 minutes just checking off boxes, talking like in our appointment, we go through everything we talk about things that are changing in my life stressors, medications that have worked and why it’s so important to have those conversations and what are some ways that patients can empower themselves to talk with their doctors and feel safe, and how doctors can make those spaces safe.
Dr. Courtney White 04:54
Yeah, and that’s definitely a challenge because, one, the health care system definitely does limit a lot of physicians, particularly a primary care physician, some general neurologists. I work as a general neurologist now so I definitely see that to see as many patients as possible. One of the benefits of being a headache specialist and also had a headache specialist at an academic center is I don’t have those time constraints. So I really can spend that time. But that’s the other reason why I do a lot of online education and do things like the Tik Tok videos I do because not all providers have the luxury of being able to spend, you know a lot of time just teaching their patients about the disease. So this is sort of my way of making sure that other people can get that information, they may find, oh, this resonates with me, let me write that down and bring it up to my doctor. So even if I do have a limited time, I think as patients, we know our bodies best. And so learning about oh, for example, there is a condition called Migrainous Corpalgia, which people with migraine can get body pain as well. I posted a Tik Tok video about this and a lot of people said, wow, I’ve had these body pains I didn’t realize was related to migraine. And so it’s something they can bring to their own providers. And even if there is a limit to how much time can be spent, they now have a way to kind of direct those appointments so that they can get the most out of it.
Sarah Shaw 06:11
That is so important to us patients that we can, I know it’s something that I do all the time, I often will come into my appointments and say, Well, what about this, and I read about this, and do you think and I never feel shut down. Like you’re always trying to educate me. And we’re trying to educate each other about the things that will work and will not work for the patient. I’ve definitely been in situations before where I wasn’t treated with that respect, where I was shut down by doctors because they would look at me or or my partner, there’ll be that uncomfortability, unspoken. And what’s so important about having gender from care is so important, making sure that pronouns are on the forms. And that’s something that I have come across with your office. When I filled out my forms, I saw that and I knew that I would feel safe there. And I was wondering if you could speak a little bit about the importance of having pronouns and making sure that offices are safe for Queer patients like me, LGBTQA+ patients?
Dr. Courtney White 07:09
Yeah, I think one of the biggest things is respect for the patients, it should be standard. And I think more and more offices are starting to do that. But that definitely comes to education amongst those in the healthcare field. I’m actually doing a course even though I am Queer, and I’ve been involved a lot in the Queer community. And I also tried to advocate for disparities amongst the Queer community, I’m actually in a program to help further educate myself on the healthcare disparities within the Queer community. And some of the simplest things we can do to help solve those disparities is just the simple, respectful things by making, asking for pronouns being standard, and also changing things like the electronic medical record. For example, I had a patient who is a trans man, and it says male on his chart and his legal name, it doesn’t have his dead name. But it has a little, just to mention that he has a uterus. And that’s important to me as a medical provider, because that does affect which medications I can use and how I counsel. But it doesn’t change how I treat him. I think these are changes that can also help overall with the Queer community and being aware that just as important as someone’s name is, what they like to be called, what their age is, what their medical history is, for the most part, treatment is still the same, but there is still these small nuances that we need to be aware of, and we need to treat appropriately to help decrease those disparities.
Sarah Shaw 08:28
Absolutely. And I’m so glad to hear that your office and that you are doing the things to help bridge the gap and rebuild the bridge to help those disparities. Because something that I know personally, I would dread going to the doctor because with my partner, Tara, they would often give me looks or you know who’s this, is this your sister? And I’m like, Oh, my goodness.
Dr. Courtney White 08:51
Like, Oh, that one’s my favorite, is your sister. I’m like, No, that’s
Sarah Shaw 08:57
Having that level of respect and asking pronouns and asking what the patient is comforable with is so important. And that’s something that you have given me, every single appointment. I’ve only seen you actually I think it was our one year anniversary.
Dr. Courtney White 09:12
Yeah, it was because I was still in training when we first started working together.
Sarah Shaw 09:16
Yeah, so it’s actually I think it’s coming up either on our one year anniversary. But it’s made such a difference. I’m excited. Every single time I go, because I know I’m going to be respected. I know I’m going to be taken care of and I’ve never been called something that I was called in the past was that I was a problem patient because my case was so complicated, that my migraine attacks were not responding well to some of the older treatments that I was on. And I didn’t want to go back to see my neurologist. I didn’t want to do that. And you’ve never done that to me. You’re always like, well, let’s try this or let’s try this and that just has made such a difference in my hoping care and especially when I did my infusions that just turned a huge page of knowing that the patient is like the most important and that you were just willing to be like, let’s throw everything that we have at it. And even your colleague, Dr. Deploy was like, I remember I was so concerned about my migraine attack not breaking. And she was like, It’s okay, if that doesn’t work, we’ll try something else in our arsenal. And I think just letting patients know that there is something else to try or just giving them hope has made such a difference for somebody who for years was called a problem patient. I wasn’t taken seriously because I would show up in sweatpants, and a sweatshirt, it shouldn’t matter what you’re wearing, what your socioeconomic status is, what your race is. It should not matter. What matters is that you’re in pain, and you deserve to be treated equally, which I know that you can speak to
Dr. Courtney White 10:46
Unfortunate you’re not the only patient I’ve had who’ve said you know other doctors have dismissed me, called me a problem patient, called me too complicated. What I don’t like about it is it that it’s patient blaming. No patient caused their disease, and especially something that stigmatizes migraine. There’s nothing you’ve done that caused it. And I think that there is a culture in medicine coming from the physician standpoint, that we are expected to know everything, be perfect, be able to solve all problems. And when we cannot, there is this tendency to blame the patient for it. And I completely disagree with that belief. But I think that’s where that’s coming from. You know, I’ve definitely seen cases where I have admitted to patients, this is beyond my skill set, beyond my expertise. I’m still going to treat your symptoms, I believe your symptoms, even if I can’t give you the answers, I can’t give you a cure. Even if I’m not the expert in this, I’m going to ask others. And I think the newer generation of doctors, I think there are a lot of us who do have that same sort of idea, that mentality is that we’re doctors, but we’re also human. And it’s not the patient’s fault, if we can’t figure it out. It is our responsibility to get them to somebody who may be able to figure it out. and regardless of whether we could figure out the diagnosis, or the best treatment, even if we can’t get symptoms 100% gone, it is our duty to alleviate suffering as much as you can, whatever that treatment is. So I’m hopeful that the new generation of doctors, because we are more focused on showing our humanity with patients and also not being this kind of God complex, we’re going to solve and cure everybody, I think that’s gonna make a difference as well. Obviously, there’ll be bad apples here and there, that’s with any job. But what frustrates the most is how often I do hear your story of such such doctor dismissed me, thought I was too complicated, didn’t have anything. When was it really that the doctor themselves didn’t know what to do next? And then it became a patient blaming situation. So that was my soapbox.
Sarah Shaw 12:46
No, I appreciate your insight with that. And speaking of you know, doctors and patients in that relationship, what do you think the most pressing educational need is for the migraine community, both for providers and people who live with migraine disease?
Dr. Courtney White 13:02
For providers, there’s definitely a need for more training in medical school. In medical school training, out of the four years, there’s only four hours dedicated to migraine. And I understand that there are lots of other diseases, there’s lots of other conditions, and they all deserve respect. But a lot of our training in medical school is focused on these rare diseases that we’ll never actually see. Because those rare diseases help us figure out how the body works. But there’s such a focus on that as opposed to what we actually see as providers. So I think that there needs to be a change in medical education that is more focused on what people are actually going to see. So relative to other conditions, migraine is not taught enough. They’re also taught a very specific type of migraine where you have one sided head pain, nausea, sensitivity to light and sound. They don’t get taught that migraine can sometimes get both sides, sometimes the headache part can actually be very mild, and the Vertigo is more severe. So from the physician, and I think there definitely needs to be more on the medical education to help, especially people who are going to fields like neurology, primary care, family medicine, internal medicine, OBGYN, these are the people who are going to see people with migraine a lot. Even if you don’t go into being a headache specialist, I’m not saying I want to be headache specialist, as wonderful as it would be. To be able to do the basics before you refer to a headache specialist for someone who may have more intractable chronic migraine would actually be beneficial for a lot of patients. Now on the patient side, what things that can be done, is I’m actually one who’s for Google searching. That being said, you have to make sure it’s a reliable source. And that’s very difficult to discern. So we talked about earlier about you would come to me like Hey, I saw this device or I saw this study, what are your thoughts? I welcome that, I’ve had patients who come and they bring me these articles, and I can help them kind of interpret like, is this legitimate or is this just trying to sell something to you? Because I do have that training and be able to interpret the scientific studies, things like that. Every patient that I diagnosed with migraine now I actually give them a little bit of information. And I give them access to some of the patient advocacy groups. Groups such as Mask For Migraine, Chronic Migraine Awareness, the American Migraine Foundation, because those compile all of the latest information that is accurate evidence based and supported by headache providers. So I think those are places people can go to educate themselves. One of my biggest reasons for joining Tik Tok and starting to do videos on education was I had a patient who came to me and she said, I got all my information about migraine on Tik Tok. And when I saw some of the things that were being said, some of it was like, okay, it makes sense, some of these, it won’t hurt you to try it. But a lot of things were actually sham. And there are some people on Tik Tok who are really trying to sell products that they haven’t been shown in clinical trials to be actually beneficial. And really, while they don’t hurt, they’re gonna hurt your wallet, and you’re not going to get better. So I wanted to be able to present just the information that we have to have a more reliable source. Now I’m not the perfect source. You know, I am just a single person who has been a headache specialist for a year and a half now. However, I think it’s important for people to be able to look to reliable resources, whatever it may be, if it be a specific physician, or if it be a group, like an advocacy group. And then there’s also professional societies like the American Headache Society, the National Headache Foundation, that also provides a lot of good information. So things that we can do as patients to help with our own selfs, because we’re not going to get all this information in a 15 minute session with a doctor, is being able to find these resources. And I think as a advocate myself, one of my biggest things is education and providing the information providing those resources. The final thing I think, is really important that providers and also patients that we talk about our disease. I have had medical students where I’m educating them on migraine and then they would say, Oh, I think I might have migraine. And we go through the diagnostic criteria. And I’m like you probably do, you should see you know a doctor and try to get evaluated because you don’t have to suffer. There are treatments available. There’s so many treatments available. We don’t know what might be the perfect one for you. But that’s part of what I do as a headache providers figure out the right combination of treatments to improve your quality of life. So you don’t have to just deal with these bad headaches.
Joe Coe 17:20
This discussion was so rich and deep that we thought it would be helpful to divide it into two to give you enough time and space to consume the really important information that Dr. White and Sarah are presenting. Tune in to our next special episode of Talking Head Pain where Dr. White and Sarah confront of the emergency room head on. An area that is so important for migraine patients to understand how to navigate and in Dr. White’s case how she is educating her colleagues in ER and primary care medicine to better treat and advocate for migraine patients. I am Joe Coe, host of Talking Head Pain and I will see you next time.
Narrator 18:01
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this EXTRA episode, host Joe Coe welcomes renowned migraine specialist, author and podcast host Dr. Lindsay Weitzel. Lindsay describes her worst migraine attack, strategies for coping with migraine attacks and minimizing their severity, and how living with migraine affects family dynamics.
“You find yourself saying, ‘oh my God, I’m going to die, I’m going to die.’ You need to turn that around because your thoughts are nerve signals just like your pain,” says Dr. Lindsay Weitzel.
EXTRA- Outfoxing Your Migraine
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Lindsay Weitzel 00:00
You find yourself saying, “Oh my god, I’m gonna die. I’m gonna die.” You need to turn that around because your thoughts are nerve signals just like your pain.
Joe Coe 00:00
Welcome to Talking Head Pain, a podcast that confronts head pain head on. I’m Joe Coe, Director of Education and Digital Strategy for the Global Healthy Living Foundation. I’ve lived with migraines for 20 years so I understand how they can dramatically impact your life. Today I’m wondering if there’s a way that we can strategize and outfox a migraine. I’m speaking with a renowned migraine strategist, Dr. Lindsay Weitzel. Outside of helping others take on head pain professionally, she’s an author, host of the National Headache Foundation’s podcast Heads Up and just an overall fun and nice person. Hi, Lindsay, how are you?
Lindsay Weitzel 00:58
I am great.
Joe Coe 01:00
How long did it take for you to distinguish between what many would consider a headache and a migraine?
Lindsay Weitzel 01:07
I had chronic daily migraine from my earliest memory, which is around the age of four. And everyone told me this is the same as my father’s history. So to me, I just thought everyone was like this. And everyone told me I had sinus headaches, just like they told my father. So it wasn’t until I could read well, well enough to read a book written by the Mayo Clinic that happened to be in my family’s library. And I read the migraine section and I was thinking to myself, I must have been 10 or so, I was thinking to myself, gosh I feel like these headaches I get are actually migraine because I do all these things. I vomit like they talk about. I have all of these other symptoms. But it wasn’t until I was 17 that they actually diagnosed me with migraine because they came out with imitrex and someone gave me an imitrex injection and said “Oh, these are actually migraines that you have, essentially every day.”
Joe Coe 02:04
So for the first 17 years of her life, Lindsay was essentially in the dark about what was causing her daily chronic headaches and only discovered the real cause by accident when she picked up a book in her father’s library. I asked Lindsay to describe the type of symptoms she gets when a migraine attack hits.
Lindsay Weitzel 02:21
I get many, many different types. I used to experience everything from constant nausea and vomiting. I don’t vomit as much anymore. I do experience quite a bit of nausea, but I don’t vomit too often. I definitely experienced cognitive dysfunction when they come. I experienced dizziness. Mostly my worst symptom is pain. I have very severe pain. Because mine started when I was so young, and they were so constant I developed something called complex regional pain syndrome in the same pattern as my migraine. So it’s the right side of my head, face, neck and down my arm. So I also experienced like a raging burning fire pain down to my bone marrow along with a migraine and they sort of make each other worse.
Joe Coe 03:08
I want you to think about the worst migraine attack that you had, where you were, what you were feeling, what was going through your head, and just anything else that you think people need to know about your worst migraine attack ever.
Lindsay Weitzel 03:23
My worst one stands out very strongly in my mind. It was actually I had a migraine related seizure that stopped me from breathing and likely the only reason I’m even here today is at the time I happened to be married to an anesthesiologist who was able to induce me to breathe. And what was going through my head honestly was at first, not much because I was so used to really horrid migraines, but I had left work and I had gotten myself home and I was in bed and it just seemed like one of my worst migraines pain wise and I was having trouble even sitting up. I was just having trouble speaking. I couldn’t seem to speak correctly at all. And it was a right sided migraine, which about 98% of my migraines are. And then it very suddenly switched to a left sided migraine, which I don’t get very often and it was a severe left sided migraine which is unusual for me. And I started getting some auras that are were like Alice in Wonderland type auras where everything’s the wrong size. Like I felt like my hands were like Mickey Mouse hands giant hands, everything in the room looked wrong. And then all of a sudden, I couldn’t swallow. And then I knew I had to vomit, which was totally normal for me and I ran into the bathroom, but the reflex that allows you to vomit wasn’t working. So I couldn’t swallow my saliva and I was trying to vomit but the vomit wouldn’t come up. I tried to scream for help because I was afraid I was going to choke. And by the time my husband came in, I could see my legs kicking in the air back and forth because I had started seizing and I could see him trying to wrap my head and towels so that I didn’t hurt my head because I was convulsing so much. I couldn’t see him well, it was like I had stopped blinking. So my eyes went blurry. I could tell he thought I was dying, even though I could still see him. Eventually, I did quit breathing, and he was able to get me to breathe again. But those things are scary. I’ve never had that happen since and I hope I never do. It was such an extreme migraine, I would definitely know when it was coming. It was the strangest migraine I’ve ever had. So that one was definitely my worst one.
Joe Coe 05:35
Wow, that almost sounds like something out of a nightmare. But a lot of people with migraine have similar experiences, including my own brother, who also has epilepsy. The seizure that Lindsay described is very similar to a seizure that I witnessed him having. Fortunately, or unfortunately, he doesn’t remember much of it. But it was a horrifying thing to watch. And as I said to Lindsay, episodes, like hers, and my brothers are often misunderstood. If you have a seizure, people don’t necessarily know how traumatic that is, after what it does to you to wear you down. So these discussions are really important. And thank you for sharing in detail and graphic detail which people need to hear. They need to hear how serious migraine can be.
Lindsay Weitzel 06:20
And it’s not just that I do feel that people don’t fully understand that the longer you have it, and the longer your chronic, the more important it becomes to stop it because I do think it just gets worse and worse and worse. And some of these things that I talk about these extra symptoms, these things that happen are more likely to happen. And so I think it’s so important to stop it in its tracks.
Joe Coe 06:41
You talked about working with clients to help them better manage their migraine, can you explain a little bit of what you do with folks to help them?
Lindsay Weitzel 06:51
What I do is extremely variable, depending on the person, depending on where they are in their migraine journey. I work with people who live near me, but I’ll be honest, I mostly work with people who live across the country and I meet with them via Zoom. I find out where they are in their journey. And I do something that I call building a rock wall against migraine. If you imagine a rock wall, all the rocks are different sizes. So I say that half that rock wall is strategies that are lifestyle, half of it is medications, but the mortar of the wall that holds it all together is your mentality, or spirituality depending on how you want to look at it, and what kind of person you are. And so I talk about all those things in the rock wall and we work on a rock wall together. I mostly end up honing in on this mortar because I really believe that let’s say you find the best medication for your genetics and your migraine disorder. And a lot of times that medication works for a while. And then that rock sort of falls out of your wall and it stops working. And I really do believe that’s because we didn’t work on our mortar enough.
Joe Coe 08:00
I love that. And my father was a mason. So I know a little bit about mortar and caulking and all that stuff. Do you ever use some of those rocks to help people throw them at insurance companies?
Lindsay Weitzel 08:11
Yes!
Joe Coe 08:12
I need a bucket of rocks right now.
Lindsay Weitzel 08:14
That is one of the things we talk about. Unfortunately, it’s not as easy for me to help people with that if they don’t live here. Like if you’re local, I know all the coolest people to go straight to and be like, look, you talk to this person in billing or this person here and there and they’ve got it like this, they know what to do. If the person lives far away, I don’t always have that magical person in your area to help you. But when someone really knows your area, and the hospitals and clinics and stuff, there’s a lot of times a really magical person in your area that can help with that.
Joe Coe 08:48
Lindsay is a single parent and her migraine can often affect her interactions with her children. But she, as a strategist, has some useful tips for us to get through attacks when they occur.
Lindsay Weitzel 09:00
What I do as a parent, and I also have a seven year old son that was diagnosed with chronic migraine this year. He has not gotten what dramatically better. We’ve managed to bring it down to almost nothing very quickly. So I both am a parent of a very young child that had quite a lot of migraine for a while and then I myself obviously have migraine. I think the first thing to do when you are in the acute phase of a migraine is you need to find something distracting and empowering or if not empowering, if that’s not your thing, distracting and funny, something that’s going to keep you up and it’s going to use the part of your brain that either is going to fall down the rabbit hole of pain and misery and suffering. And instead you need to take your brain somewhere else so that you feel stronger after this migraine instead of weaker. So I do this with my kids and I do it with myself in front of my kids. So what we generally do if we’re all home, and I’m feeling terrible is my kids already know, to go pick a superhero movie that mom likes, and they turn it on and my daughter is old enough she generally makes popcorn and we all go and gather around this like empowering movie. We do the same thing with my son. If he’s not feeling well, he picks the movie, which is usually a superhero movie or maybe something that makes him laugh.
Joe Coe 10:19
And is that why you wrote the book Super Zoe the Migraine Hero?
Lindsay Weitzel 10:24
My daughter wasn’t even old enough to speak when I wrote that she was only two, maybe three. I didn’t have kids with migraine at the time or anything. I just remember feeling that kids that were like me when I was young, I needed something empowering to focus on so the book Super Zoe the Migraine Hero, it doesn’t educate much or anything. All it has in it is empowering images. I don’t want these kids feel like they have to read when they have a migraine. It just has empowering images for them to focus on. So they keep their mind in a strong place. There’s also coloring pages if there’s a particular image that they feel like it’s helping them. I can’t really fit those pages in the book. So they’re actually on my webpage and they can download it and they can color the pages. They’re free, so that they stay feeling strong and they’re a little bit distracted during a migraine and so definitely it was the whole superhero mentality. We’re stronger, not weaker because of migraine is the reason I made that book.
Joe Coe 11:21
So who were the go to superheroes in your house? Are you a Marvel, DC family? Like where does that break down?
Lindsay Weitzel 11:28
We’re definitely a Marvel Family. We love Iron Man. Right now my son’s really into Black Panther and my daughter’s into Black Widow and I love Iron Man. It sort of switches sometimes. But yeah, we definitely love Marvel here. Do you have a particular movie or distraction you go to when you’re not feeling well?
Joe Coe 11:53
I love Marvel and DC. I’m getting into Titans on HBO Max, which is a really interesting show. And I love Marvel I would say my go to for like just mindless distraction would either be Buffy the Vampire Slayer, the series from when I was in high school in middle school, and that’s I’m dating myself. It still holds up. Harry Potter, unfortunately, there’s some questionable politics with the She Who Shall Not Be Named. So I don’t celebrate that as much. But Harry Potter has done so much for so many people, right? So I go to Harry Potter, I try to listen to music that I find soothing. I could do like melodic death metal to Britney Spears. I have a very diverse range of music. And fortunately sounds don’t bother me when I have my, light does I can’t watch TV. So I don’t really watch TV during an attack. It’s more after when I’m resting. It really depends on my mood. And I think part of managing migraine is the pre post stuff that we have to deal with. So like, I might have to try to figure out how to amp myself up after I feel rundown for a couple of days. So music can sometimes help with that.
Lindsay Weitzel 13:11
I think that’s true. And I think it’s interesting. There’s certain migraines, not all of them do this to me but, there’s certain ones that will your mood, you’re like wow, why do I want to listen to that? It’s kind of weird. It will do things to your mood. So it is not that strange. I don’t think that there’s such a wide array of music that you’re attracted to, during and around the time of a migraine. I know a lot of people who can’t watch TV during a migraine, I have to, but my ears are more sensitive. The phonophobia is worse for me. So it’s harder for me to listen, I listen, I watch TV on low volume, but I know some people that will put their favorite movie on and just listen to it. They’ll like put a pillow over their face or something and they’ll just listen. So yeah, it just depends on which symptom is worse for you the photophobia or the phonophobia what you can do, but I always feel like you’ve got to find a way to get something positive into your system, whether it’s through your ears or your eyes.
Joe Coe 14:09
Lindsey is the host of a podcast called Heads Up, which is sponsored by the National Headache Foundation.
Lindsay Weitzel 14:16
Hello, everyone and welcome to Heads Up, the webcast and podcast of the National Headache Foundation. I’m Dr. Lindsay Weitzel, migraines-
Joe Coe 14:24
What is one of the most interesting things that you’ve learned while doing this?
Lindsay Weitzel 14:29
I’ve always been like reaching for the most difficult question that I know that people with migraine would love to have answered or the latest medication that I know they’re gonna want the details on that maybe they can’t find online. They’re gonna want the expert that actually worked on the clinical trial and do you know what one of our most popular episodes was? It was literally just supplements. Let’s just start with magnesium. Why is magnesium important to us if we are a person who experiences migraine, magnesium is important. There was Dr. Amelia Barrett, and she’s really into holistic treatments for migraine. And I pulled her on and she talked about magnesium, how long do you need to take it, it would be two and a few other supplements and gave the details on, you need to take it for at least this long before you would see an effect etc. and that one blew up. And I was like, you know, duh, that’s something that someone can just run to the store and do for themselves. It didn’t occur to me that some of the simplest things are what a lot of us really need and want to hear. Another really interesting one, just seeing the actual brain scans related to what meditation can do for someone with migraine and the neuroplasticity, the neuroplasticity ideas, the actual things that happen, the science behind how we can get better with meditation when we have migraine blew my mind a little bit.
Joe Coe 15:50
So you’re telling me I shouldn’t yell at my Apple Watch when it’s telling me to breathe? I’m like, why are you telling, don’t tell me to breathe.
Lindsay Weitzel 15:58
You can yell at it. But afterwards, sit down, meditate and breathe. Go ahead and yell, if that’s what you feel like you need to do. But afterwards, yeah, breathe and meditate.
Joe Coe 16:09
You talked about helping people create their mortar and their foundation. What’s a mortar tip that you would give to our audience?
Lindsay Weitzel 16:19
One of the most rudimentary mortar tips is that there’s three places to attack your pain, you attack it on the sensation level, then there is a thought level, what do you think about your pain? Do you literally think this pain is the worst thing on Earth? It’s going to kill you? It’s going to last forever? Someone who’s never had a migraine might laugh at that. But almost anyone who’s had a migraine, what’s one of the first things when it hits really bad that you find yourself saying, “Oh my god, I’m gonna die. I’m gonna die.” Most of us go through that phase. And then there’s the emotional level, how does it make you feel? Do you feel like a loser? Because you’re not at work? Do you feel like you’re going to fail? Do you feel like it’s unfair. So there’s all these things that happen on those three levels. So we all really do a good job of finding ways to attack this sensation with the various medications and strategies that we get from our doctors and online. But then stop when you notice what you’re thinking. Or you might even hear yourself say it out loud.
Joe Coe 17:22
I thought this was really interesting that Lindsay says our thoughts are like nerve signals, similar to our pain, and that your pain adapts to these thoughts. So if you’re telling yourself, this is the worst pain you’ve ever felt, those thoughts are more likely to stick around and multiply.
Lindsay Weitzel 17:38
So you need to turn that thought around, like it’s going to be okay. It’s going to go away, I’m going to be fine. I’m going to be stronger at the end of this. And you need to distract your brain with something empowering like what we talked about the music, the movie, whatever. And then the emotion. Are you stressed out? Do you have anxiety because you think your boss is ticked off at you? Do you feel ashamed, all of those things are going to bring you down again, these are nerve signals, they work in your brain, just the same way the pains working and they are going to make the pain worse, they’re going to make it more likely to stay or likely to come back worse, and you need to turn those emotions around. And it sounds so hard. But this is something you practice. Even the pediatric people that work with kids who have migraine will tell you that this is old school, don’t stick them in a dark room and just let them sit there with their negative thoughts. That’s about the worst thing you could do. Give them something in there that’s positive.
Joe Coe 18:32
I want to circle back to what you think single parents should know about parenting with migraine. What are some tips you would give them?
Lindsay Weitzel 18:41
One of the tips is, let them help you they want to help because they get so sad, especially if they’re young, when you know mom’s not feeling well. So find things they can do to help. Like I mentioned, my kids turn on the movie, they make popcorn, they love to get me a water bottle. Even if I don’t need the water. I’m like, “Oh my gosh, thank you.” They write me little notes. Another thing is I invite their friends over when I know a migraine is coming. And then I hide in the basement and let them play because then they’re distracted with something fun and they’re not as worried about me. So if they’re an age where they can play on their own and be distracted. I think that that is a great strategy.
Joe Coe 19:20
I have one last question. As a parent, how do you feel seeing your child live with migraine?
Lindsay Weitzel 19:28
It’s been hard just like you thought it would be but I do think that us mothers or fathers or parents that have been through it really bad like our whole lives and have figured out how to strategize and work with the medical community and have educated ourselves are pretty well equipped to help our children. Maybe more well equipped than some of us realize and I’m always just go at it the way you wouldn’t helping yourself. If you start early when they’re really young and it’s not like ingrained in their nervous system for 15 years before they get help.
Joe Coe 20:03
I totally agree that people that live with this disease and have children or family members that also have it can use their collective strength and wisdom that we have gained through our life experience loving to help. And I thought that that’s a really good use of that energy. Lindsay, this was an absolute delight, having you on Talking Head Pain, thank you so much for sharing your strength and your wisdom, your energy and compassion, and also your humor, it’s really important. And we forget that, that while we’re living with really difficult diseases, that we don’t have to feel bad for ourselves that we can advocate for ourselves, we can find the best treatments, we’re gonna feel crummy, but we really can find strength both within ourselves and with others. And thank you for being a source of strength in the migraine community.
Lindsay Weitzel 21:02
Thank you for having me. It’s an honor and it was so fun, and I love talking to you. It’s always so much fun chatting with you.
Joe Coe 21:11
I really appreciated that Lindsay shared practical tips for us while we are experiencing a migraine attack. I think that some of these tips were counterintuitive, but really helpful for those of us that are struggling in the moment with an attack. I’m sure as someone living with migraine you have your own tips to share. Send them to us at [email protected]. Better yet, include a short video or audio clip, and who knows what you share may be included in our listener feedback portion of future episodes. Thank you so much for listening to Talking Head Pain, a podcast that confronts head pain head on. If you liked this episode, you can help us out by giving us a rating and writing a review on Apple Podcast or wherever you listen to a podcast. It’ll help more people like you find us and we know that you want people to get help. I’m Joe Coe, host of Talking Head Pain and I look forward to speaking to you next time.
Narrator 22:10
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Dreama, a housekeeper, shares her experience of working with migraine as someone who is self-employed and often doing physical work.
S1:Ep7- "Clocked In" with Migraine
Dreama 00:00
I remember I was laying on the couch. And it was an all day thing and I couldn’t move my head without it being it feeling like I had been kicked in the head. That sound, noise was like, you know, the bells at Nortre Dame Cathedral. That’s how every noice sounded to me. It sounded like my head was up in a belfry. I finally looked at my son and told him take me to the hospital because it it lasted, I was probably 10 hours into it. So just completely obliterated not able to move. I think the pain got down to a four so I could function. But I think the only reason I didn’t consider that a 10 is because I hadn’t passed out. And I wished I would have.
Joe Coe 00:59
Ask a person living with migraine about where and when their first attack was, and I’m sure it’ll get equally powerful responses. Hi, I’m Joe Coe, host of Talking Head Pain, where we confront pain head on. In this episode, we’re exploring how migraine affects us financially, like compromising our working lives and livelihood.
Dreama 01:19
My name is Dreama, I am well still technically 50, and I clean houses for a living.
Joe Coe 01:26
Do you remember when you first started getting migraine? And how did it start for you?
Dreama 01:30
I remember being 17 years old, and I was at school. And my head was hurting so bad. I just gotten to the car and drove straight home, skipped the nurse’s office. And then from there on out, I probably got about one really massive headache per year. I didn’t get diagnosed till I was 25 though.
Joe Coe 01:56
Why did it take that long to get it diagnosed?
Dreama 01:59
Money or lack thereof. We didn’t have insurance at that point. And basically, my parents were pretty much you know, can’t afford it. So we can’t spend it sorry, deal with it. So and when I started winding up in the ER, for headaches, they decided they would treat the pain but really not the migraine until I got diagnosed. So I had to get diagnosed. And that didn’t happen until after I had baby number five.
Joe Coe 02:35
Wow, that’s a long time. Almost a decade and five children later is such a long time. But the issue of getting a late diagnosis isn’t just that Dreama lived with pain for so many years. I wondered what the long term effects are for having a delayed diagnosis. I had neurologist Dr. Peter McAllister shine a light on this.
Peter McAllister, M.D. 02:55
So like a number of medical conditions. The more migraines one has, the more one has migraine. So if you treat it early, and you decrease or eliminate this process called kindling. Kindling means if you have a migraine and another and another, there seem to be changes in the brain such that the brain gets better at giving you the next migraine and the next migraine. And pretty soon you become a well oiled migraine machine. So interrupting that process or preventing it from starting by early, aggressive, targeted and specific treatment seems to be not only good for the day in day out because your headaches are better, but it probably is good for a patient’s future as well.
Joe Coe 03:39
It’s important to not just get an early diagnosis to manage your migraine, but also to stop having such severe migraine attacks. For Dreama, managing migraine for decades and with five kids, it must have been an incredibly exhausting balancing act. And how is it with your kids? How did you explain migraine to them? And how did they react?
Dreama 04:01
When they were a lot younger it was very, very hard because when my migraines was putting me in bed, I’d have no choice but let their dad will watch after them. You know, and if they come in and they need something I’d have to send them to their dad. They’re just part of the reason I felt like such a terrible mother. Because you know, it’s like I can’t I can’t even think I can’t form a coherent thought or absorb what you’re telling me. So I would have no choice but to tell them and by the time all them were about 4, they knew don’t bug mom when she goes to her room close the door.
Joe Coe 04:39
You are not a terrible mother. I could tell that. I mean the way you talk about your children and I definitely feel the love there. Do any of your children have migraine?
Dreama 04:50
I’ve had two that have been diagnosed and two that we are 100% sure that they have migraine, but they have not been diagnosed. So, four of the five.
Joe Coe 05:05
Do you find that you’re able to relate to them now, the ones that are diagnosed and have migraine?
Dreama 05:11
Well, each one of our migraines are completely different. You know, my son, my middle son, his is more visual. Everything is just really visual with him and he gets really, really dizzy to the point where he cannot drive. He doesn’t so much get the pain, but you know, he gets the the visual. And that that’s hard. Um, my Naomi, her biggest problem is in the the nausea. You know, we put her on nausea pills now, and I don’t think they’re helping. We’ve tried the peppermint stuff. It hasn’t helped. So she bears like me pretty much just ride it out until it’s done. So and then my other two I honestly, I really don’t know. They told me one sided head pain. And that’s all I really know.
Joe Coe 06:12
How frequently do you get migraine now?
Dreama 06:15
Well, now I probably get about one a week. They’re level two and level three, I can still manage. So it’s maybe about once every two to three months and I get one that I have to call my client and say I can’t come. So because being on the road would be dangerous.
Joe Coe 06:34
So you talked about being a housekeeper and having migraine and how that impacts your livelihood and or your ability to do your work. When you’ve had to call out with your clients, do they understand or do tell them why?
Dreama 06:50
I have got the best clients on the planet. This little place I’m in right now. My client told me I could come over and spend a couple of days here and just get away from my family for vacation. So I’ve got the best clients on the planet. I love every one of my clients. They’re all so understanding. I’ve had a couple of them tell me, “Look, you’ve got to have a go home.” So yeah, I love my clients.
Joe Coe 07:18
Do you feel concerned about your future living with migraine, and like your work situation and?
Dreama 07:27
Not so much migraines as the rest of the aches and pains going in my body. So that’s, that’s more the concern for you know, cuz it’s a it’s an extremely physical job. And I’m not one to use a mop, I mop my floors by hands. So, you know, my body is suffering from, you know, the workload. So yes, I am absolutely concerned about know, what am I going to do when I can’t do this anymore? You know, I have no savings. I have no honey to take care of me. And I’m living with my kids and steal all their food.
Joe Coe 08:06
People might understand the pain that comes with migraine, but what about the financial impact? What about the life changing aspect of this disease? The financial losses people with migraine face, and the uncertainty migraine patients live with? This is another reason why we must get the right care. Where do you currently get treated for your migraine?
Dreama 08:27
I go to the downtown clinic which is for free people, I mean broke people.
Joe Coe 08:32
So you go to a clinic and how are they do they understand migraine?
Dreama 08:38
My original doctor actually suffered from migraines but I had to switch my clinic days when I went over there, so they had put me with a different doctor. So I just I don’t know how empathetic she is toward people with migraine.
Joe Coe 08:53
Do you think that people in general, who have less money get different type of treatment when it comes to diseases like migraine?
Dreama 09:01
I honestly do not know. I try and seek out the good in people. You know if if my doctors being somewhat rude if it’s not a pattern, they’re not going to blame it on her day. You know, she had a rough day and that means I have to be extra kind. You know, but in general. I don’t know my daughter got diagnosed and she has seen probably the most spectacular neurologist ever. He even knows about those white lesions on your brain from heavy migraines. So I’ve had moments of, okay, I’m going to just sit here and allow myself to feel miserable and mope and whine and cry about having migraines because I’ve had an 18 month stretch where I had a constant headache.
Joe Coe 09:52
18 months, what-
Dreama 09:54
Yeah, and then the doctor told me, “Migraines only last three days,” I said okay, how about you go tell every one of my friends who have had migraines for years.
Joe Coe 10:03
So you had a migraine for 18 months. And the doctor that you saw said, that’s not possible because migraines only last three days, how did that make you feel?
Dreama 10:12
Totally not believed. Like I was trying to blow up symptoms to get sympathy or meds, or whatever else he was thinking or I thought he was thinking, you know, because honestly, I don’t know what he was thinking. But you know, that’s how I felt.
Joe Coe 10:31
18 months is too long to be battling with something silently and then being knocked down when trying to get help and trying to get on the right medication. Dr. Peter McCollister weighs in on this.
Peter McAllister, M.D. 10:42
Unfortunately, we, that is the medical community, do not do a good enough job in putting people on preventive medications. There was a large study called the American Migraine Prevention and Prevalence Study, and they found that if you look at the criteria for who should be on a preventive, it’s about 40% of all migraine sufferers. And yet about 12% of people are actually on migraine prevention. There’s a couple of reasons for that. Certainly the doc, some of the doctors don’t know to do it. They’re much more comfortable with acute medications. Another big issue is that tolerability and perceived lack of efficacy. If you get put on a particular pill for your migraine prevention, and it caused terrible side effects, you just drop it. In fact, most of the older ones, patients don’t stay on for more than six to 12 months. So there’s a problem of actually getting on them. But when you get on them, people are lapsing because they’re either not working or they’re intolerable.
Joe Coe 11:44
It’s no secret that the healthcare system is broken. And not everyone gets the same care. Migraine is a life sucking disease. But are there any positives to living with it? Do you feel that having migraine has helped you be more empathetic and kind toward people?
Dreama 12:00
Yeah, definitely. Definitely. I try not to judge anybody because the thing is, is they can be a walking cripple like me. You know, you never know what somebody’s hiding underneath their skin. You just you don’t. So if somebody is walking with a limp and respect that, and you know, be kind. So I think it’s made me much more empathetic.
Joe Coe 12:26
And do you find that your physical church helps, the people in it having that community?
Dreama 12:33
I love my church family, they’re so sweet. They all love the Lord and it just comes through?
Joe Coe 12:38
Are they understanding and supportive? And how have they supported you during your life and with migraine?
Dreama 12:46
They’ve always given me an ear. You know, I think sometimes that’s the best thing that people in any situation needs. Sometimes it’s just someone to talk to. We don’t necessarily needed advice, we just need to talk and get it out. And there are very, very few people that I open everything up to, you know, I don’t tell everybody about my pain levels. I don’t tell everybody about all the stresses in my life. You know, but there are a few people by opened up to him, my brothers and sisters in the Lord are those.
Joe Coe 13:19
What would you want others who are in similar situations as you to know about migraine?
Dreama 13:26
For people who do not get migraines, please stop throwing every so called remedy up in front of my face. It doesn’t help. In fact, sometimes it makes it worse. For those who do get migraines, please as soon as you start feeling any migraine type symptoms, go get diagnosed because then you’re going to get the best treatment. If you’re not diagnosed, you’re going to get ignored and though of treated as a drug seeker. Because you know migraine is the ultimate I can’t see your pain. So let’s use this as a reason to go get drugs. Oh, and keep a diary of your migraines. And if you can figure out your triggers do because that’s awesome.
Joe Coe 14:16
Dreama’s story reminds us that we all have a great amount of strength and courage. We need to use this strength to help ourselves and others. I hope you are inspired by Dreama’s story too. If you need help with understanding migraine, we created free audio guides to help you step by step through your migraine journey. You can find them at talkingheadpain.org
Sean, a retired member of the Canadian Air Force, recalls how he dealt with migraine while serving in the military and now how he helps other men get support.
*Content warning, this episode contains sensitive content around suicide.
S1:Ep6 - Confronting Migraine Stereotypes
Joe Coe 00:00
Content warning. This episode contains content around suicide.
Sean McEvoy 00:05
So my worst migraine attack was just a few years ago. It was just after I started getting chronic migraines. It it came on, I woke up with with a really bad headache in the back of my neck coming up the base of my skull. I always explain it to people that imagine someone taking an icepick and just putting it against your temple and just hammering it into your head that that’s the only way I could describe it. the extremity of that one lasted about eight, nine hours and then it started to calm down but the actual migraine itself was about a three day migraine which is worst I’ve ever had. It’s so intense, so pinpoint. That’s the throbbing you can you can feel and hear your heartbeat that time I probably would have if I had had a gun in my house, I probably would have used it. The pain was so excruciating and so bad. And you know, I can say that’s probably one of the only times that that I’ve ever had a feeling like that, that that I would you know I would have taken my own life because it was it was so bad. I wanted to die like I thought I was going to but I wanted to die.
Joe Coe 01:33
Migraine pain is much more than just a bad headache. It can creep into your life and quickly take over every inch of your being. Hi, I’m Joe Coe, the host of Talking Head Pain, where we confront pain head on. We often see middle aged white women portrayed as having migraine. In this episode, we are confronting these migraine stereotypes head on.
01:54
My name is Sean McAvoy. I am 51 years old. I’m retired from the military. I was in the Air Force for 15 years and was released from there for medical reasons because of migraines and a compressed nerve in my neck and few other injuries. I’ve taken up photography in the last couple of years as kind of a side hustle.
Joe Coe 02:13
Thank you for joining us today. So do you remember when you first started to get migraine?
02:18
First time I remember getting migraines I was about eight years old. Didn’t know what it was, you know, knew it was bad headache. At the time. I mean, it was in the late 70s. So there wasn’t any, you know, couldn’t look it up on the internet. Of course, I was given some aspirin, they were more weather related, I think, if I remember correctly. And as I got older, they became more frequent and more more triggers that I get with them. And when there’s any kind of barometric pressure changes, stress, whatever, I will always get a migraine every time.
Joe Coe 02:53
I often joke, Sean, that I’m a better forecaster than the weather people. Maybe your side hustle could have been a weatherman?
03:01
Yeah, I say the same thing. Like I’m a walking, walking weather barometer, you know, I can tell people when it’s gonna rain the next day or whatever. So.
Joe Coe 03:11
It’s definitely my superpower. When were you first diagnosed with migraine?
03:16
It was in the military. I think I was about 23-24. So it would have been, like 1992-93. So I went from from age 8 to like 24 with not knowing just thinking that these are just bad headaches.
Joe Coe 03:32
How did you get diagnosed?
Sean McEvoy 03:34
I was in military and I was having to call in sick quite frequently from work with migraines and or going home early. And so I had a really bad one one day I thought I was you know, gonna die. So I went to the military hospital and you know, the doctor took all the symptoms and everything and, and stuff and he said, “Well, I think you’ve got more going on than just a headache. Right? I think you might have migraine,” so they they referred me to a neurologist and sure enough it was, I was diagnosed classic migraines and and yeah, it was so it was a military doctor that diagnosed me.
Joe Coe 04:14
Stories of people like Sean, former men in the military, aren’t usually the stories we hear and see about people with migraine. I wondered what factors might be at play that contribute to this. Do you find that it’s harder to get through through men that men aren’t looking for the mental health help or addressing their migraine symptoms?
04:35
Oh, absolutely. Absolutely. One. I mean, migraines have always been and I don’t know if you’ve experienced it, but in my lifetime. I’ve always experienced that, you know, people say, “Oh, migraine, you get migraines. You’re a man, right? You’re not a woman. It’s a woman’s disease.” And I’m like, “Well, no, it’s not.” You know, it’s more prevalent in women. And I think it’s more prevalent only because women are more, more out to seek help for it. I find men are very reluctant, you know, you have that, that tough guy mentality that you just you grin and bear, you get through it right. No pain, no gain, right. That’s, that’s what we’re taught as kids and growing up and, you know, from our fathers and you know, unfortunately, a lot of people I think are still suffering without being diagnosed because of that, that mentality and, and I, you know, when I talk to other men, they’re, they’re like, “Yeah, well, I yeah, I get migraines too, but I’ve done nothing for them or that sounds like what I’ve got, but, you know, doctors never, I’ve never spoken to the doctor about,” and that’s because they’re afraid of being looking like they’re weak, basically. And you see that a lot in the military, too. So it’s, it’s in with veterans. So I try to talk to people all the time and say, look, there’s nothing embarrassing about this. It is what it is nothing to be ashamed about. And that’s what I try and tell people all the time.
Joe Coe 06:02
Sean saying that men are less likely to seek treatment isn’t just a hunch. There does seem to be a difference between men and women when it comes to discussing migraine. To find out more, I spoke with neurologist, Dr. Peter McAllister.
Peter McAllister, M.D. 06:16
Yes, men and women talk about migraine differently. My practice is probably 75% women, and for a couple of reasons. First of all, migraine does affect women three times more than men. But beyond that, men seem more likely to not seek care compared to women, they tend to treat themselves over the counter. And they tend to get into, in my opinion, more trouble with this medication overuse. So a typical male coming in, has finally either been forced in by his spouse, or is losing time from work and has no choice but shows up. And they’re generally taking a whole lot of Excedrin, etc. So, that is one group, women tend to seek healthcare, women tend also and again, there’s a lot of overlap, this isn’t black and white. But women as a whole tend to be more responsive when I discuss with them lifestyle modification. So I think that in general, with exceptions, women are more likely to embrace biofeedback and meditation and mindfulness and adopting an exercise program and dietary changes. So you know, those things are helpful. So with some men, I have to kind of strong arm them to do the things I need to do. But as a clinician, you need to make the case and close the deal. So even in those somewhat more difficult patients, I can usually get it across if I work at it. So again, with you know, a whole lot of exceptions to this rule, men tend to come in when their disability is more significant. And so I make the case that their job performance, their careers, what they’ve thought of themselves, you know, going forward, can be very adversely affected unless they get on the right path. And the right path would be these lifestyle changes, these medications, these supplements, etc. And I need to get that sort of buy in. Sometimes with women, I find their issue is that they will put their kids in their family first to you know, and deprive themselves. And then my argument there to make the deal is look, your kids are going to be worse off if you’re lying in bed with an ice pack on your head, nauseous, and unable to care for them. So sometimes you have to make the case based on what’s going on around them because they don’t think about themselves.
Joe Coe 08:42
The idea that men might not seek help due to their careers made me wonder about Sean’s career in the military. Did getting diagnosed with migraine impact your career in the military?
08:53
No. No, not really. As long as I was still able to be deployed.
Joe Coe 09:00
What about people around you in the military? Did they understand what was happening? If you are in the barracks and having a migraine?
09:07
Oh, no, no, no, not at all. No, there was I remember this this day. In particular, it was mid August, I was on in training for my for my trades that I was and we were like going through exams and stuff and it was just stress being the trigger. I was pretty stressed out. Got a migraine. End of the day, it was three o’clock or whatever. In the afternoon. I was lying on my bunk on a pillow over my head. And there’s people like it was four to a room at the time. Three roommates and you know, their blasting music and you know, talking loud and partying up and I’m sitting there and saying guys keep it down there. They’re like, Yeah, whatever. And they did. No, they didn’t care. Right. They didn’t understand, you know, and I find people if you don’t have migraines, they really don’t understand the extreme pain that that you experienced. They don’t get it. They think, Oh, it’s just a headache and, you know, take some Tylenol, but it doesn’t work like that.
Joe Coe 10:13
Have you experienced any stigma when you have spoken out? Either from people close to you or people in the community?
10:24
Yeah, for sure. People who don’t experience it, they don’t get it. They just don’t understand. And, you know, I’ve had people like Facebook friends that, you know, I used to work with or have been friends with for years, and now all of a sudden they drop you because because they don’t like hearing about all migraines, or chronic pain or depression and mental illness, right? They think that you’re, you’re weak friends have dropped me on Facebook and social media and stuff. And I’m like, you know what, I don’t need you in my life. So that’s, I’m at the point now that I just I ignore that. That noise in the background for, for lack of better word, I just, I do my thing. And if people don’t like it, then then don’t listen.
Joe Coe 11:16
Yeah, it’s important. I think a lot of us get to that place of being really secure in ourselves, and we could let it roll off.
11:22
Yeah, so I mean, it. I grew up with that all my life. I grew up in a military family. My dad used to be in the military, Both my grandfathers, uncles, cousins, you know, the whole bit. And that that’s a mentality that that is big in the military. You know, if if you have a medical condition, then you know, they consider you sick, lame, or lazy. Anytime anyone goes to the hospital for condition or migraine attack, whatever. Oh, that guy’s sick, lame, and lazy. Right. But one of the biggest sayings that the military first time I heard it was in boot camp was was you know, some one of the guys It wasn’t me had twisted his ankle or something. And they the the, the drill instructor, he was all, “Come on, suck it up, Nancy, let’s go we got a march to do,” you know, and that kind of like, it was kind of, okay, you’re at boot camp. That’s how you treated you get that but as my career went on, you heard it more and more, just suck it up. Right.
Joe Coe 12:33
Sean definitely highlighted that men are more likely to live through their pain and are less likely to seek help. Could this cause other poor health outcomes? What’s the danger of sucking it up?
12:46
There’s a lot of it. I think there’s a lot the one is that you know sucking it up then you’re not talking about it, you’re not dealing with it you know, you’re dealing with it yourself keeping it bottled up, you go through those those mental health crisis. For me not talking about it and stuff I did go through a period of depression that was really dark for me. You know, I pushed everyone in my life away; my family my friends, you know, my wife everyone I just pushed everyone away and that was from not talking about it. That was keeping it bottled up not telling people how I felt or or even seeking any kind of treatment or talking to my doctor. It was suggested to me by my psychologist a few years ago that I needed to take up a hobby and do something to get out to get out of the house, help with my depression, help with the pain to get moving again. And I just turned to photography. Big stress relief for me because I can get out in the fresh air. I also do a lot of reading, love to read takes me in a whole different world.
Joe Coe 14:00
You talked about the feeling of of suicide and being at your the end of your rope when being in the middle of the worst migraine attack and you work with, and are an advocate for people with migraine, in fact, is that something that you help address and work with the community on?
14:19
I try to, yeah. One thing we, you know, we know as chronic pain because I have both chronic pain and the migraines is that that yeah, you know, depression and the suicide ideas are prevalent right in in anyone with with these conditions. I’m not I’m not ashamed of it. I tell people about it all the time. You know, my depression that I do have, you know, the thoughts and feelings that I’ve had in the past, I tried to bring it out and talk to people and tell them like it’s not there’s no stigma attached to this. You know, you’re you’re suffering you need help, right? You can’t just, you can’t get through by yourself. And I try and tell people that and that, you know, there’s nothing wrong with seeking professional help or talking to someone, you know.
Joe Coe 15:14
There are men that need to hear this. If you’re talking to a guy, and he has migraine, and maybe he’s not treating it, or he’s not addressing it, what do you say to him?
15:26
I would say, dude, you need to get this looked at because life is so much better having them under control, you know, you’re not gonna get rid of your migraines. But, but if you can control them, your life will will drastically improve and you’ll, you’ll enjoy the things around you. Right? And if, if they’re not willing to get help, I mean, not much, you know, I try to just keep at them, persuade them, but for the most part, and I’ll speak with like, on veterans groups, when I when I talked to veterans about and stuff for the most part, guys are, are more willing, I think nowadays than they were even two or three years ago to come forward to say, yeah, I’m suffering from this. I need help. Right. So I, you know, I’m finding that not really coming across it as much anymore of men saying or not talking about it, you know, are seeking help.
Joe Coe 16:34
As a reminder, if your pain is causing you to think about harming yourself, there is help. In the United States, you can call the National Suicide Prevention Lifeline. 1-800-273-8255. Sean’s story shines a light on the importance of men seeking medical help, whether it’s for migraine, mental health, or any type of pain that we may be enduring. Sucking it up just sucks. So speak up for yourself and get the help that you need. If you or someone you know needs more information about different types of head pain, how to get diagnosed, and how to manage, listen to our Talking Head Pain audio guides, found at talkingheadpain.org
Cara, an author, and her husband Seth, cofounder of GHLF, talk about the impact of migraine as a married couple who are raising children.
S1E5: Married with Migraine
CZ We were on a plane from Sydney to Los Angeles. It just triggered a migraine, and then on board there was like one screaming child, and it was just terrible, like I could feel it coming on. I had zero medication to take, and it was just getting worse and worse, and I threw up at least seven times. I was in so much pain, my head was just throbbing uncontrollably, I was feeling extremely nauseous, I couldn’t stop throwing up. Thankfully Seth was there to help me, our daughter was one at the time, and it was a nightmare, because obviously you can’t get off the plane, so you’re stuck there until you land, and it was just the worst experience I had ever had.
JC – For people living with migraine attacks can plague you at any moment. I know this all too well, having lived with migraine for over 20 years. Hi, I’m Joe Coe, the host of Talking Head Pain, where we confront pain, head on. Although migraine affects more men than women, all genders, all ages, and all ethnicities experience the effects the migraine can have. In this episode we are looking into how migraine creeps into a relationship, and how one couple is managing migraine and their marriage.
SG – Hi, I’m Seth Ginsberg, the co-founder and President of the Global Healthy Living Foundation, a worldwide non-profit for people with chronic diseases. I’ve had arthritis since I was 13, and co founded the organisation over 20 years ago from a college dorm room bunk bed.
CZ – Hi, my name is Cara and I am 40 years old, and I;m the found of Big World of Little Dude which is an educational platform teaching children social and emotional skills
SG – We met 12 years ago and it was love at first sight, and then we married…
CZ – 2012.
SG – Yeah, eight years ago.
JC – Cara, do you remember when you first started to get migraines? How old were you?
CZ – The first ever migraine I ever got was before the equivalent of an SAT exam when I was about 17 years old, and then I didn’t really get any until in my early 20s, and I just remember being in bed in absolute pain and not knowing what to do, and just taking whatever over the counter medication, but it just never worked. It was a long time, I just kind of suffered through them and thought this is just my life, and this is just what happens and I just deal with it as they come up, and it was only when I had a really bad episodic moment on an aeroplane from Sydney to Los Angeles, that I realised I had a real problem, and sort medical attention from a Neurologist. I’ve had migraine for 15 years, 20 years, so that was about the 15 year mark.
JC – Yeah you heard that right. 15 years. It took Cara 15 years to decided enough is enough, and seek out medical help. It pains me to think how much pain she went through in those years. But I hate to say it, this isn’t uncommon among the migraine community, a lot of us are in pain for a number of years before we speak up, and there’s many different reasons for that. Cara’s, I believe, would be very common among women.
CZ – I think because it was just around my period I thought well you know you get period pain, I get a migraine, it is what it is, it sucks for three days, and that’s just life. That’s basically it, and the medication I was on I was like, this is as good as it gets, and just not knowing that there was more involved advice and help out there, and I honestly don’t know why i grin and bare it for so many years. Maybe it is a male/female thing?
SG – I think the nature of Cara and a frankly probably a lot of folks that suffer from migraine is I’ll just grin and bare it, I’ll get through it, I’ll deal with it. Yeah it hurts, yeah it impacts my life, but yeah, I’ll deal with it.
JC – I’m so glad to hear that you went and did something about it, it’s not easy. So when you finally started that treatment journey, what did it look like for you?
CZ – I got put on a medication that did work, but then after I had my second child, it stopped being effective, and then I got put on another medication that made me feel extremely zonked out, like if i took the medication, I would not be able to function.
So what I was doing was having the headache through the day, because I had to function and go about my day and look after kids and do whatever I had to do, and my migraine was so bad by the time I took the medication in the evening I had missed that window. Because as soon as you feel that migraine, you take that medication. Now I’m on a different same group of medication but just a different one and I am finding that that is better.
JC – How did it first come up in your relationship?
SG – It came up in our relationship in a social setting because there were times when we had been invited out to be social, and Cara would decline, and this is before she really divulged the extent of it, and I truly thought it was a function of being anti social, and then at some point it was revealed that that’s what this is. To me I was happy in a sense to understand that, so it has a name, it has a diagnosis and theoretically a prognosis.
CZ – And also we come from different perspectives, I just accepted that this is what I have, like this is what happens to me, but Seth has a different viewpoint.
SG – As Cara mentioned for a long time, she would not necessarily share with me the extent of her migraines, or that they were coming and so I didn’t know, I just didn’t know.
SG – It was a real inflection point and turning point for us to manage this.
JC – I can imagine that would have been hard on the both of you, and now you’re both sort of managing migraine together, so what does an average migraine look like?
CZ – My migraines are hormonal based, so every time I get my period once a month, that’s when I get my migraines, not to say they don’t happen at other times, stress is a big trigger as well. So if I am under a lot of stress I might have more than one migraine a month, but on average I have one migraine a month. My migraines tend to last three days, so the day that it’s sort of coming on, and the next day is the worst day, adn the day after that is when the migraine slowly starts dissipating. So the first day I push through, I function, I take my medication, I get through the day, but then by the next day, that it when I tend to need to lay down and cancel things, and the next day I might, you know, it just depends each month, but generally three days. It just really depends, now I’m on this new medication as soon as I feel it coming on, I will take that medication, and I will take whatever amount I can. And I just know that in the evening once the kids go to bed, I am in bed by 6.30 – 7 o’clock, quiet and getting as much rest as I can. There’s nothing I can do to stop it basically, it’s just how bad is it going to be?
JC – This isn’t the first time Cara has mentioned linking her hormone cycle to her migraines. I don’t have a whole lot of experience in this department, so I have enlisted the help of medical director of the New England Institute for Neurology and Headache,Dr. Peter McAllister, to help us better understand the link.
PM – In women 40% have a trigger in the drop in their estrogen, so menstrual migraine is very very common and it’s related to change. The relationship between hormones and migraine was figured out more than 25 years ago and there were some studies that really documented that the drop in estrogen as the biggest trigger for most women. So the most vulnerable days are the day before or day of of period, and if that is consistent we sometimes take up that mantle and say let’s try to treat hormonally, one can go on, if it’s good for your lifestyle, a low dose continuous estrogen oral contraceptive and that sometimes eliminates or markedly decreases the period, obviously if you don’t have a period, you don’t have a menstrual migraine.
JC – It’s very interesting the changes related to estrogen levels which then affect migraine, which would explain why more women have migraine over men. However I can imagine changing contraception for migraine is a big decision, and there would be other non medical changes that other women could make. I was interested to find out if Cara had tried any lifestyle changes or holistic treatments.
CZ – Yes. I mean I don’t drink because that triggers a migraine or a headache, so I eliminated alcohol. Massage brings some relief when I’m having a migraine, it doesn’t take it away, but it just gives me that 45 minutes not focusing on the pain in my head and I find that brings me some relief. I use lavender oil, heat packs and cold packs on the points on my neck. I saw a migraine specialist here who did realignment of your neck, so I am open to trying alternative therapies.
JC – I haven’t mentioned this yet, but Seth is actually my boss, so I feel a bit awkward asking this, but we’re really trying to uncover what migraine looks like in a relationship, and in particular marriage.
Knowing how I am with migraine , and how it can wipe me out, I can imagine it would be hard managing in a marriage for the both of you. So how does migraine affect your relationship?
CZ – I feel guilty when I have a migraine, because it’s like I know when it’s going to come, I’m expecting it to arrive and then I feel guilty that I need to lay down or checkout. So there’s like, I know I need to lay down, I know I need to be in a dark space, I know I need quiet, but there’s guilt that comes around that, because it’s like, well I had ten things planned for that day, I’m now going to have to cancel it, so letting people down, letting myself down, and so there’s a lot of guilt and shame wrapped in that, but also feeling I’ve got the migraine so I have to just get through it.
SG – You know, living with someone they love who has migraine, at times very helpless, but also you know, just pissed off, really angry, not at Cara directly, but definitely indirectly at times, because it’s like why aren’t you managing this? You know, I’d be on the phone with the doctor saying this is BS this isn’t working, but that’s not how she’d approach it and so I could assign blame, but that doesn’t help, especially when someone’s got a migraine. It’s not her fault at the end of the day, but it’s her responsibility, and then by default it’s my responsibility, it’s our responsibility.
JC – Are there any positives that have come about sharing migraine and a better understanding of each other through that process?
CZ – I would prefer not to have migraine, but I guess the positive is the support and communication that has developed because of it.
SG – Now that we have a kind of an understanding between each other to be very open and candid it’s a lot more matter of fact, Cara is a lot less afraid to tell me about it, and I flip into do anything I can to help out and support so she can do everything that she can to feel better as soon as possible. A lot of times that’s just close the door put the eye mask on, lay down., cover her head with a pillow and sleep it of, so that’s how we approach it now, is just being open and candid and matter of fact. I’ve learnt to be a lot more understanding I’ve brought a lot more empathy to the table.
JC – If you were to give another couple that is dealing with migraine, some advice, what would that advice be?
CZ – Clear communication, and support, whilst you’re having the migraine, and then just supporting your partner how they want to go about solving it, you may be on different pages but just going with how the person suffering from the migraine wants to handle it, so just supporting that person.
SG – I would say to any couple out there, that migraine is a team game, and the person suffering from the migraine is one part of the team, but the person supporting that person, the partner, is also a part of the team and has to play a really active role, and that goes from household duties, which are really important, when someone has a migraine the last thing they should be thinking about is transferring the wash to the dryer or something like that, but it also moves up the ladder of importance to talking to the doctor, too often people like Cara strong independent people aren’t forthcoming about their challenges their medical issues with the very people that are in a position to help. The last area to support and something I think about is the role everyone can play in dealing with the insurance companies and coverage or an employer or any healthcare related stakeholders, we might call them. Who are really important to the equation, and with whom you can be really successful, or without whom or against you’ve got real challenges. It’s an arm and arm walk through the process, but nobody should go it alone if they don’t have to. So I would say support each other in that way, nobody should go it alone if they don’t have to.To couples out there, married or otherwise, putting yourself in someone else’s shoes is usually the best way to get the empathy they deserve. Take a moment, take a few deep breaths and you realise it’s not easy and what they’re going through is very challenging and so the definition of love and support is doing anything you can to help that person.
JC – It’s definitely not easy managing migraine when we’re in a relationship, there isn’t one clear cut way to manage or an easy answer to it, it’s about making sacrifices when we need to, and having a partner who is willing to do the same alongside us. It’s great to see that Seth and Cara, with busy lives, busy careers, and two kids, can still manage all of that with migraine in their lives as well. If you’re looking for more information on managing migraine, in your everyday life, or if you’re still trying to find out if you are suffering from migraine, listen to our Talking Head Pain audio guides.
Sarah Reneé, a patient advocate, shares her experiences of navigating migraine care as a person in various marginalized communities.
S1E4: Black, Queer, and in Pain
JC: Joe Coe
SS: Sarah Renee Shaw
PM: Dr. Peter McAllister
SS – My worst migraine attack was right before my 25th birthday, I remember it was summertime because it was hot out. I had a non stop migraine attack that lasted for about three months, and the first month I was like, okay, maybe by next month, it’ll definitely be gone. And then around month two, I started to get really depressed because I was cancelling events, I was cancelling things with friends. I was really struggling at work. And I didn’t see anybody else like me struggling the way that I was struggling you know, you hear when people have chronic diseases or chronic illnesses.
I started develop a lot of anxiety about like my performance because I was so afraid that I was going to get fired because I was having attacks at work. I had to put my head down a lot and I didn’t want them to think that I wasn’t committed and I wasn’t a reliable employee, and then around the third month it was so severe that I actually I couldn’t go to a work event it was, I had, I had a talk with my boss and I was like, I am in so much pain that I, I can’t do this event. And it was a really low point in my life. Because it was the sharp shooting pain, I was nauseous all the time I was barely eating, it was hard to keep food in my sleep, it’s hard to keep food down, every anything that I looked at, made me want to throw up lights, and I wasn’t able to go out at night or drive at night, because I could barely see, I was waking up every morning, kind of half blind in one eye. And it was really scary. Like, I know my brain has trauma from being in that much pain, my body remembers being in that much pain, and some days it’s unbearable, you go to a really dark place.
JC – Losing three months of your life to an ongoing migraine would be devastating. How can anyone live with that pain for 90 straight days? For some people living with migraine, this can be the reality. Not because there aren’t treatments out there available to us, but because of the gap in healthcare with marginalized communities. Hi, I’m Joe Coe, host of Talking Head Pain, where we confront pain head on. In this episode we speak about inequalities in healthcare that affects LGBTGI and BIPOC communities, with Sarah Shaw.
SS – My name is Sarah Shaw. I am 31 years old, and I’m a patient advocate.
JC – Can you start by talking about when you first started to get migraine attacks? How old were you?
SS – I was about 23 – 24. When I first started to realise the pain that I was experiencing wasn’t normal pain. I had headaches all throughout college, and I just assumed it was from stress, and my first migraine attack, though, was about six months after I graduated. And it was I was actually at a social event. It was around Halloween. And it was a corn maze. And it was a group of five of us and we’re standing in line. It’s kind of cold, not too cold. I just started experiences very sharp, jagged shooting pain that kind of shot through my right eye and through the back of my skull. And it kind of took my breath away. And the pounding and the the sharp pain just didn’t stop everything just felt too loud. Everything looked too bright. Everything was just too much. And I remember looking around and asking the people who I was with, like, Can you feel anything like I thought like it was something that other like I thought maybe something had been going on. But it was something we ate, maybe it was, you know, something we drank. And they were like, no, we’re fine. And I push through the night. But I remember the next three days being in excruciating pain. I didn’t want to leave my bed. I didn’t. I could barely eat. I was severely nauseated. And that was something I hadn’t really dealt with before. And I at that point, I didn’t know what I was experiencing was a migraine attack. Because all the side effects were not just pain. It was light sensitivity, sound sensitivity, extreme nausea. I thought maybe I caught like a weird bug that you know, a virus that have been going around and it was really scary. Because no one my age knew what was happening.
JC – So is that how you were able to figure out that it wasn’t, quote unquote, just a headache.
SS – It wasn’t until I had seen a few different doctors that I had figured out that it was more than just the headache, the word migraine wasn’t really even passed around until I think I had seen my second or third doctor. And by a describe the other side effects. They thought I was having a stroke, they thought that there was something else there that wasn’t just migraine, and obviously I got tested for all those things. But in media at the time, this was you know, more than five years ago. I didn’t hear that migraine was more than just head pain. I just assumed you know, you see it commercials you know, it’s a lady laying down on the couch being like, children be quiet. I have a migraine and she’s going like this and she just laying in the dark. I never put two and two together that the laying in the dark was because of light sensitivity or what? Or maybe they didn’t even think about that. Maybe in the movies. They’re just putting you know A woman in her 40s and dark room because that’s what they do. I didn’t recognise that light sensitivity was one of the side effects from migraine. And from then on, I knew that you know if it was nausea, light sensitivity and fountain sensitivity, it was for aura that I started experiencing a little bit later, the light flickers that I get with my eyes that Yep, a migraine coming.
JC – It’s interesting that Sarah was aware of what migraine was, she had seen it in the media, and on ads, but she never connected it to what she was experiencing. I wanted to dig a bit deeper to find out what exactly she couldn’t connect the two. You talked about portrayals of people with migraine? Did you see black people that look like you? And those?
SS – No, no, not at all. One of the reasons why I didn’t even snap to judgement that it was a migraine attack was because you hear the word migraine thrown around a lot, it’s sometimes very stigmatised and when it’s portrayed, it’s all middle aged white women. And to be honest with you, I didn’t know and none of this is me being naive, but I didn’t recognise that black people, this was something that black people could get, because I had never seen until much recently, black people portrayed in migraine commercials with, even for like, you know, prescription medications, in social media. In doctor’s offices, in the very beginning, all of my doctors were white too. So it wasn’t something I was like, am I one of the few black people women who get migraine? And I think deep down, I knew that that wasn’t the case. But it made me feel like that was the case because that’s what was portrayed. And it was confusing.
JC – I can imagine. Was it hard to get a diagnosis? And do you feel like it was delayed because of your multiple identities as a queer black woman?
SS – It was very difficult to get an official diagnosis in the beginning because from a young age, I’ve had multiple chronic illnesses ranging from which weren’t even still diagnosed until I was more more mature and an adult. When I was little doctors said that I was making things up and that it was all in my head, you know, you know, she’s just looking for attention. So I I avoided the doctor for a while because I didn’t want to hear those things about. I’m not making up the pain, like it’s something that’s true. And the test results kept coming back good, meaning there was nothing there. And so in the very beginning, I was like I don’t want to be gaslit by doctors anymore. I don’t want someone I know I’m in pain. I went to the doctor, I didn’t bring up the word migraine. I was just like, let’s see. And they were like, Oh, it’s stress. It’s just stressed. You know, like, it sounds like your job is really stressful. Maybe you should try quitting. I was like, quitting, like, that’s gonna make me more stressed out, because how am I going to pay my bills and pay my student loans and pay my rent. So I think it took me about a year and a half to two years to get to a specialist who won. And not even then because even the specialists that I was seeing, the one who did diagnose me with migraine, she kind of just threw might like she was like, here’s a trigger sheet, just track them, and didn’t give me any sort of programme like plan to help me navigate the disease.
It was kind of like, here’s a list of all the triggers that could treat treat migraine, there’s no cure, it’s not going away. And I don’t know if it was because I was queer because I was black. Like, you can’t come out and like sit like that it’s something that’s unspoken. When you’re treated a certain way. Oh, she’s young. She’s just looking for painkillers. She’s black. She’s you know, I don’t like to use the word drug seeker. Because I think that that is a very bad connotation. But I think that’s how doctors treated me in the beginning. I knew that I needed something that was going to help me manage the pain because what they were giving me wasn’t it and so it felt like I had to better represent myself. I had to come across more professional or I noticed that I I noticed that I was treated differently if I came to To a doctor’s appointment in sweatpants and a sweatshirt, versus if I was coming straight from work where I was wearing a professional attire, and that really messed with my head, because it shouldn’t be that way. Not you don’t you don’t you don’t get to judge somebody from where they came from, based on what financial bracket that they’re in, everybody deserves access to health care. I grew up in a household where my entire family had chronic either chronic pain issues, ah, my brother is HIV positive, my brother has cerebral palsy, we were constantly seeing doctors. But one thing that remained the same was, I’m adopted, my dad is white. So it made me realise they listened more to the white man. That’s how he got his kids the care that he needed, because he was just taken more seriously. But if I ever went alone, I had to fight, I had to fight for my care.
JC – This would be incredibly frustrating, but Sarah managed to find the right medical advice that she needed by turning to a pharmacist, and the biggest difference between the several doctors she had been to, and this one pharmacist, is that she looked like her.
SS – I think the thing that drew me to the pharmacist was she was a woman of colour. That was the first thing I think it was a rite aid pharmacy. And it was a pharmacy that I would go to frequently for other things like face washes and stuff. So with frequent digital, I think he would see me and I was like, they always have that section where it says questions or something, or consultations are something I was like, I may as well try. She’s Brown. I’m a black woman, like maybe she’ll take me seriously. Maybe we’ll have an open conversation and she knows something that can help me talk to doctors. I felt like I could talk more to them and I could be I can find more more relatable to them because they’re not going to judge me if I’m clear if I’m black, I’m just looking for a device. And that’s where the word migraine even popped up first when there was like, she was like, Oh, you know what it sounds like you’re just having a migraine.
JC – What do you think are some of the unique challenges that LGBTQ people face when accessing migraine treatment and care?
SS – I think I think the first thing is finding LGBTQ plus friendly doctors, because those are very far and few in between when I say that, I don’t mean, you know, oh, I have I have a gay specialist. I mean, people who, when you go to the office, there is gender affirming language, there’s more than just male and female on the form, there’s pronouns, or there are certain things that come up in care where, and this is different.
JC – Gender affirming language literally save lives. As a member of LGBT myself I’m happy that Sarah is raising this point. It is a simple and affirming act that we all can do. In addition not having access to specialists that understand people who are Black or LGBTQ can deter people from getting treatment. I went back to our friend Neurologist Dr. Peter McAllister for him to explain from a medical perspective how health disparities impact care.
PM – There are a lot of health disparities in this country, and that’s unfortunate. I think that with migraine, underserved communities are exactly that they’re underserved in the migraine space, they have less access to doctors who understand migraine and take care of them. They have many more barriers to get to in certain communities and doctors are virtually full, they can’t accommodate one more patient. Sometimes there is not a headache specialist available. Lower socio economic folks, people of colour etc. seem to have a difficult time traversing multiple barriers to go from getting the proper diagnosis, to getting the proper treatment to getting the proper follow up. And that’s that that’s been well shown. Even though migraine disproportionately affects communities of colour, lower socio economic, etc compared to those who aren’t in that situation. So the exact group who has more migraines is having more barriers to jump through to get access to care.
JC – Is there research that indicates why marginalised communities have a higher prevalence of migraine?
PM – Yes, and mainly it comes down to stressors. If you are on a food Island, and it takes four different bus routes to get food for your family, if you’re at risk of losing your job every other week, if you are in an unsafe community. All of this increases stress decreases, sleep increases worry. And again, migraine being a bio psycho social disorder, these stressors impact on their disease.
JC – People with chronic disease already navigate a system that is not created to help us. From having to go through step therapy and prior authorizations to the general disregarding of invisible disease barriers are no stranger to people with chronic disease. But how do people who are also part of marginalized communities get the care they need? So how did Sarah get the care she needs?
SS – It wasn’t until I started, I equipped myself with the language. And I started talking about the research and the different nerves and things in the brain, that people started to take me a little bit more seriously. And it shouldn’t be that way. It shouldn’t be just because I’m black, or just because I’m queer. I don’t deserve treatment. I don’t deserve results. I don’t deserve a diagnosis. It shouldn’t take me coming in with handfuls of knowledge and saying, Hey, here’s what I think it is. Here’s why I think it isn’t here’s some fancy schmancy words, that will make you take me more seriously, that shouldn’t be the case, and I think that that was the case a lot. I think that they didn’t want to take the time to possibly treat somebody that they thought was looking for drugs, and that was upsetting, and not everybody has access to education. I have Wi-Fi I have internet, I was able to go and do these things. I wasn’t working back to back to back jobs to provide for my family. So I had time to look up that stuff to better represent myself.
JC – Sarah is successfully managing her own healthcare now, but it’s taken a really long time to get to this point. If you can relate to Sarah’s journey, she has a bit of advice.
SS – The first thing I would say is don’t give up. I think that that’s one of the first things that people do, because being gaslit is really upsetting. And when you go to the doctor, you expect that they’re there to help you. So my first thing is, I would say keep pushing. Ask, if they’re denying you care, to make a note of that in your patient record. Three. And I hate to say that this is what I did, but I would bring my partner along, when I was dealing with a really frustrating doctor, where she could advocate for me as well. And that was kind of complicated, because a lot of doctors, you know, if you’re in a hetero relationship, if I would be with a man, and sometimes men have are respected more.
But with us, it was nice to, you know, round queer women like being like no you to give me care. And sometimes it worked. And sometimes it doesn’t. And then when all else fails, you have to find a new doctor, or switch to another doctor, possibly within that practice. I did that, that I’ve done that twice. Now where I wasn’t, I was getting gaslit, I was told, quitting, my job would relieve my migraine attacks. And I really liked the location. So I switched to a different doctor in that practice. But it’s difficult because not everybody has, has the same resources. So those are, those are my suggestions of at least first steps. The world can be made for everybody. But the focus isn’t on marginalised people, the focus isn’t on queer people, the focus isn’t on black people, it’s we have to fix the system to make sure everybody has the same access to treatment. Our health insurance should not be tied to whether you’re able to work 40 hours a week or not or not. It should be tied to everyone deserves basic human rights and health care should be one of them.
JC – Sarah fought hard to get the care she deserves. It should not be this way at all. Hearing her speak about her experiences reminded me of a lesser known statement that Dr, Martin Luther King JR said “Of all the forms of inequality, injustice in healthcare is the most shocking and inhumane.” We all have a part to play in undoing the systems of injustice that keep people in pain.
If you need more information to equip yourself in this battle. You have access to our free audio guides that breakdown what migraine is, the different treatments currently available, and other options to better manage your migraine, you can find these at talkingheadpain.org.
Lori, Executive Vice President, Human Resources at Amgen, shares her migraine journey and discusses how HR professionals can support people living with migraine. Lori’s story teaches us that no matter who you are in the migraine and headache community, we all have similar struggles, and using our voice is one way overcome them.
S1E3: Leading with Migraine
JC: Joe Coe
LJ: Lori Johnston
LJ – The new neurologist in California wanted to start me on new medication and stop the medication that I had previously, and during that time, the migraines just seemed to intensify. And it was almost as if they were on top of each other. I would finish a migraine and another migraine would start. I was an executive at Amgen at the time and I didn’t want anyone to know that I was having migraine and that I was throwing up or that I was having a difficult time reading the presentations..
So I found a bathroom in the basement of our executive building and I would get sick. And then I would sit on the floor up against the wall, leaning my head against the cold tile to see if I could at least have something subside, it became so intense that I ended up having my doctor, he suggested injecting nerve blocks, to see if the pain would subside.
I can remember sitting there on the table with my arms crossed in my head down, and receiving the injections. The injections were not were painful, but I looked up and tears were just streaming down my face because I was so desperate for anything to stop the pain, I wanted the pain to go away.
JC – That desperate attempt to do anything to alleviate pain is something all people living with head pain can relate to. Hi I’m Joe Coe, host of Talking Head Pain, where we confront pain head on. In this episode we speak to Lori, a member of the leadership team at a biotechnology company, about managing a career while living with migraine.
LJ – I’m Lori Johnston. I’m the Chief Human Resources Officer for Amgen, which is one of the largest global independent biotechnology companies. But I’m also a Mom. I’m a grandmother. I’m a sister, a friend, a wife, daughter. So I’m lots of things, but professionally, that’s what I am.
JC – That’s really important to highlight who we are outside of our professional roles, because we get defined way too much in our society. So really appreciate you highlighting that. Do you remember when you first started to get migraine? How long did it last? And how did it start?
LJ – Well Joe, I think that migraine started for me probably back in my teenage years. But when I first became diagnosed was about 14 years ago. And I was having a series of migraines that were just increasing in their intensity. And that’s when I talked with one of my doctors, and he sent me to a specialist to see if I could get some help.
JC – So you lived all those years with something that you may not have known was migraine. I think a lot of people can relate to that. What are your migraine symptoms like for you?
LJ – Well, most of my migraines tend to happen at night in the middle of the night, and I wake up with searing pain, nausea, usually I’m in, I have an aura I have, you know, you can see that it’s kind of coming down and finishing. I am unusual, I think – in the fact that I can’t really lay down during a migraine so I know I need to get up. I either stand against a wall or I sit against a wall or I sit up in a straight chair, seeing if the pain and the nausea will subside. It typically doesn’t. So you continue with a migraine for quite some time. And I do experience things like nausea and on occasion vomiting as well. So it tends to be a pretty painful and situation difficult situation for me.
JC – Can you go into a little bit more detail about how you got a diagnosis and what helped you get that diagnosis?
LJ – Certainly, I started having migraines to the point where my primary care physician when I was talking to him, at first Joe, I thought these were just headaches, very bad headaches. And then I started talking about my symptoms. And when I started throwing up and there was nausea, I just knew that something wasn’t right. And I really hadn’t heard very much about migraine at all. And my primary care physician sent me to a neurologist, and he immediately diagnosed me and started talking about migraine. And in a way, it was one of the most challenging times but in a way it was also one of the most liberating times because I finally felt I had something that I could research and I had someone who understood and I wasn’t just doing bad things that resulted in a very bad headache. To have a doctor say to me, this is a neurological disease. And it probably won’t go away on its own was just liberating.
JC – It is important to highlight this aspect of Lori’s story. For many of us it takes visits to different doctors to get a proper diagnosis. And if we lead busy lives and careers we might not want to slow down to take time to do this. You deserve to understand your disease and find ways to manage it. I also wanted to know whether she experiences something else that is very common among others in the head pain community. Have you had any trouble explaining the pain that you experienced with migraine, or what even migraine is to others?
LJ – You know, Joe, when I think about it now I really didn’t explain to many people at all what I was going through because I didn’t know how to explain it. It felt like I sounded weak, or I might be just trying to say I have a headache. And I talked to my husband, but even today, he’ll say, I’m not sure I ever really understood what you were going through. My mom and dad knew I had migraine, but not much more than that. We have four girls, we have grandkids. And it just wasn’t something I felt I should, for whatever reason, be explaining to the girls. And it just it felt like I was giving excuses. So I didn’t want to do it. I didn’t want to talk about the pain
JC – It’s very common. Has migraine impacted your interaction with your family or friends, you started to talk about this a little bit?
LJ – Well, when I was diagnosed with migraine, I was an executive. So I was an executive in human resources at the time working for, you know large companies. So I tried to be present for all of the girls activities. But what I found Joe and looking back on it now, it was almost like I was looking through a muddy glass, or I was living life through something that didn’t allow me to be as present or the memories as vivid. And often times the girls will talk about something and I’ll think was I there? Was that a migraine day was that what was happening because I don’t feel I can remember things as vividly. Now as the migraines have lessened, I realize how much I missed. By things not being as clear, I almost felt that I was walking through a fog.
JC – That’s a really powerful image. Why didn’t you want people to know that you were living with migraine? Have you felt stigma around migraine?
LJ – I thought someone would accuse me of being weak. And I grew up kind of Texas tough. We grew up as a family when you know something happened. You were just you know, you kind of suck it up Buttercup. You just sort of shake it off. And I felt that I would be labelled as weak and incompetent. And I did not want that, and the way that I worked through that is realizing that what I was going through was not just going to magically disappear, if I sucked it up, that I really had something where my body was reacting very differently than everyone else’s body.
JC – I’m not surprised that Lori felt she would be perceived as weak, I think we have all feared that, I know I have. As someone who part of the leadership team of a large company, I wondered what it was like when Lori opened up about her health journey with her colleagues.
LJ – The first time I told my patient story in front of our entire leadership team. I told them that I was scared to death. I thought I might end up being fired. You know, when my mind just ran away from itself, I would think about being fired. And I thought, How crazy is this? I’m a head of HR, what am I going to do – fire myself? You know, for having migraine. This is crazy. But a lot of times our stigmas come from the fact that we are silent. We’re silent sufferers. We don’t get to talk about our disease. And when you’re able to talk about it, and people are able to see what you go through and what you do. There’s strength in that. And I’m hoping through that, that we can break those stigmas of silence.
JC – Have you ever Lori had to ask for accommodations at work?
LJ – This may sound odd from the head of HR, but I haven’t asked for accommodations. And part of that Joe goes back to the point of I didn’t want people to know that I had migraine. In fact, when I finally told our CEO that I suffered from migraine, he was shocked. He cannot believe that I that is something I’ve been living through. But I do believe as well that my job in the way that I was able to manage things allowed me to have a bit more flexibility than what might normally exist for someone who as an example would be working on the manufacturing floor. So I was able to work at different times early in the morning, late at night, on the weekends, those things are accessible to me to be able to do.
JC – How does Amgen help employees that live with headaches and migraine?
LJ – Well, the first thing I would say Joe is creating panels and discussions where you can do exactly what we’re doing here, which is share your story here about patients. We always have meetings with patients coming in, which I think is, is just phenomenal, because it does share with you the patient journey and what people are going through. But in addition, just for our employees, it’s making sure that we have the proper benefits so that different management programmes and plans can be adhered to. We have when we were in offices, we’re not there today. But when we were in offices, we also have put in place dark rooms in many of our campuses and locations. And then just focusing on health and wellness. Because I think as you said, that’s such a big part of who we are right? allowing ourselves to self care.
JC – It’s great to hear that Amgen does this because we need more large companies really pushing this to make it normal for people to take that time to really invest like you said earlier Lori in the individual, knowing that there are a whole person and that a balanced person is happier. I think a lot of people would be interested in how you manage migraine and develop a career. So what is good management and good for lack of a better word of migraine mean for a person’s career of migraine mean for a person’s career?
LJ – Well, I’m not going to tell you it was easy. I feel like I dedicated a lot of attention to it. So what I would do is really manage my life around ensuring that I could deliver on the jobs that I had and the roles that I had. And that sometimes meant that in the evening, I needed to study my notes again for a key meeting. Or it would mean on the weekends I needed to rest, and if things were really bad. You know, I did have the flexibility where if a Saturday was better for me or a Sunday was better for me. But a Friday wasn’t so good. I might be able to take off a Friday afternoon and focus my attention on the weekend. So there was some flexibility there. But I would also tell you that it just wasn’t easy. I would certainly set my limits and not do things if I felt they were optional. I do believe that flexibility can help people who are managing their life, some are managing diseases, some are managing just their responsibilities of being a working parent or caring for the elderly. And I saw this through the pandemic that we became much more empathetic as an organization on allowing people to work the way they need to work. I also do believe that the pandemic created stress as well. And I think our focus on well-being and ensuring that you take walks and you have breaks is actually really good. And very important.
JC – It is reassuring to know that you can move up in your career or break barriers when you are also managing migraine. Hopefully, more places of employment can learn to be empathic and caring like Amgen. I thought it was important to speak to Lori about how living with a chronic disease like migraine can actually help her be better at her job. This is an area we often don’t think about.
Lori, how is your experience as a patient informed or impacted your work as an HR executive that helps other people in your work as an HR executive that helps other people?
LJ – Joe, this really came home to me with a friend of mine. So I have a really good friend who has stage four cancer. And I was meeting him for a coffee, tea for me, I don’t drink coffee, but we were meeting and sharing in a coffee and tea together. And he said, you know, Lori, before I had cancer, I thought I understood what it felt like. And he said, I realized now, I absolutely had no idea. And I feel that way, as a patient. I work in a biotechnology company that has patients at the center of what we do. But I do have to say, Joe, that until I became a patient, and when had everything happened from trying to get medications through a pharmacy to opening up and telling my story, I’m not sure I really understood what patients go through. And I think it just makes me more aware of what people are walking through. And many people, many people deal with some type of disease, either chronically or temporarily. And I think the more compassion we have for that the better we’ll be.
JC – Compassion is key. We are fortunate that Lori is using her platform to help raise awareness for all of us living with migraine. Here are Lori’s parting words to us.
LJ – There’s so many things I wish I could say about living with migraine. But I think at my core. What I want people to know is there are so many people that are suffering from migraine and what you’re missing out on as a society is that bravery courageous at the people that advocate, survivors, thrivers and not to be dismissed. I don’t think migraine pain needs to be dismissed. It’s a whole group of people that I admire. I would say is don’t give up. There are so many companies, individuals, , foundations, like yours, that are really working on behalf of patients. And the science, biology and even technology are advancing. And I just believe that we shouldn’t give up, we should hope. And we should advocate. And I think that’s what you’re doing. And I’m impressed with what you’re doing. And I’m impressed with what companies like ours are doing. Well, I do want to thank you, Joe, I want to thank you, for making it easy to talk about migraine. And also, I want to thank you, and Global Healthy Living Foundation for the work that you do for patients like me, and how you advocate for us.
JC – Talking with Lori felt like speaking with friend I’ve known for decades. From the moment the interview started her presence was calming and reassuring. Knowing that she is a leader in Human Relations gives me hope. Hope that other HR professionals will follow her lead and create the workplaces that we need be productive and thrive. Lori’s story teaches us that no matter who you are in the migraine and headache community, we all have similar struggles, and using our voice is one way to overcome them. If you need further information about migraine, whether that’s medical or non medical treatments, or how to manage in the workplace, our free audio guides can help
Joe, a retired firefighter, describes how he became the hero in his own personal headache nightmare. Joe’s life experiences and advocacy teach us that it is never weak to get help.
*Content warning, this episode contains sensitive content around the events of 9/11 and suicide.
S1E2: Cluster Nightmare
JC: Joe Coe
JM: Joe McKay
PM: Dr. Peter McAllister
JC – Content warning, this episode contains sensitive content around suicide.
JM – I felt at one time I was afraid to go to sleep. I wasn’t getting more than two hours sleep in a row and that would probably be the time it Freddy Krueger was. So it was more or less. Like I was living in a Freddy Krueger movie. For those three weeks where you know, when I laid my head and on the bed at night, I knew about an hour and a half to two hours later, Freddy Krueger would be sitting on my chest and sticking his knife right right in my eye.
JC – That visual of Freddy sends chills up my spine. I’ve always been a fan of horror movies. I remember being a kid and begging my older cousin to let me watch and then having nightmares for weeks (and if we are being honest years),
There’s something about Freddy and the Nightmare of Elm Street franchise as a whole that really hits that mark when talking about head pain. Too many of us in head pain continue to live in our personal nightmares feeling trapped and helpless in our own bodies and heads.
Hi, I’m Joe Coe, the host of Talking Head Pain, where we confront pain head on. In this episode we talk with a man who rewrote his personal horror movie script.
JM – I’m Joe McKay. I’m 53 years old and I am an avid full time advocate now, retired, FDNY firefighter. Now I’m a full time advocate.
JC – So as you know, we’re talking about head pain. When did you first start getting headaches and head pain?
JM – It was about six months after, after 911. Myself and obviously, the whole Fire Department, a lot of first responders and volunteers working on a pile. I was working in the firehouse and about one in the morning, and I had all of a sudden felt like someone had stabbed me in the eye with an ice pick.
Scared me, scared me to death ended up in the emergency room. And a few hours later, they sent me home with the diagnosis of unspecified migraine. So that was that was the beginning of it all.
JC – That could be scary, too. What was going through your head aside from the pain after the hospital visit?
JM – Ah, just a lot of confusion, I had never experienced anything that painful before, and to walk away from the hospital without really without any answers was a little unnerving.
It wasn’t wasn’t till probably almost two months later that I got a proper diagnosis. And I’m lucky that I got better that early and I attribute that to being in the New York area where there’s a lot of, you know, a lot of neurologists that would more likely come across a patient with this condition with with cluster.
JC – As Joe said he is lucky because it often takes people a much longer time to get a proper diagnosis. Getting the right diagnosis is important because it can help make sure those living with headpain get on a the right treatment. Cluster headache is not something that many may have heard of. So I asked Neurologist Dr Peter McAllister to explain it for us.
PM – So cluster headache is another primary headache disorder but very, very different from migraine. Cluster headache has been labelled about the most horrible pain on the planet, beating kidney stones and burn pain and cancer pain etc. So it’s sometimes referred to as the suicide headache for a reason distraught patients in terrible pain or don’t have access to care and treatment have taken their lives, which is devastating. So cluster is a short acting headache. It’s got a very circadian patterns such that a patient may wake up in a cluster at 2:07am. Every night, with the idea that a hot poker is being rammed into their eye, the pain is excruciating. One major difference is that when a migraine sufferer has her really bad pain, what she’d like to do is lay down very gently and quietly not have everyone touch her. It’s just the opposite with cluster, they are so in pain, that they pace, they walk around, they’re agitated, leaving banging their head against the wall. The other discerning feature is the autonomic changes. So what happens in the cluster which is a 15 minute to a few hour Pain Syndrome, they often get a drooping of the eye, tearing of the eye, nasal congestion, redness of the eye these are we call the autonomic features that roll with it, cluster is always side locked, meaning it’s 100% either right side or left side. and even general neurologists will sometimes miss it. The treatment overlaps with migraine, but it can be very different to diagnosis sometimes takes three to five years after onset of symptoms.
JC – Dr McAllister didn’t hold back explaining the intense symptoms that cluster headache patients experience. I can imagine people like Joe, who live cluster headaches are constantly dealing with people just thinking it’s just a ‘bad headache.’ I wonder if that impacts men getting treatment?
Being a guy that sure you are that reminded me did you get does anyone bust your chops about like, having cluster headache or needing to take time for yourself or to do different treatments?
JM – Yes. Yeah. busting chops is is I was in New York City fireman and firehouse. Chop busting is, is an art form in the firehouse and if they’re not busting your chops, then usually there’s something wrong so but Yeah, I did.
I got the nickname oxygen boy, and some other there was a few others, holiday headache, they would say cuz I would always you know, the headaches would always seem to come around when a holiday was coming, but there was there’s always a holiday around. If you look at the calendar, that is you know, Arbour the day would be one is Oh, yeah, all the day and your headaches back, you know, totally joking around, but they weren’t, you know, they were they were busting my chops a little bit about that, but that it’s all in good fun I you know, but they understood the pain because there were times when I would get in attack at work, you know, two or three in the morning. And they’d see me sitting up, you know, sucking oxygen down, you know, sitting on the back step of the of the fire engine or two in the morning. So they knew what was what it was about. Yeah, yeah, it was all it was all good, though. In the end. I was pretty lucky, though, to be honest with you to get to have access to that oxygen at work. City of New York graciously supplied it for me at work.
JC – Do you think that the joking and the chop busting is a way of people trying to understand something that they may not understand?
JM – It’s hard to tell, you know, who’s what, you know what their intention was? But I mean, I didn’t feel any hard feelings. You trust these guys, you trust these guys that you like when you go out the door, so it’s kind of a different kind of relationship.
JC – I know, you’re a big advocate. So you’re very open now with your story of cluster and headache and pain. Was there a time that as a man, you didn’t feel like you could be as open about what you were living with and struggling with?
JM – It was a little tough at first, and the stiff upper lip thing was kind of the mantra with a lot of people and you know, my family. So I always try to always try, it didn’t always work, but we try to keep that stiff upper lip. But when I’m having an attack, I don’t want anybody to see me because it’s not it’s not pretty. You know, in tears with the pain, it’s that bad. It’s embarrassing for me like I don’t want anybody to see me, it just brings up a lot of emotions when I’m in that position and I really don’t want anybody to see me like that. But yeah, I’ve kind of moved on past that I really I it doesn’t bother me anymore that you know at this point, I really don’t care. You know what anybody thinks about my manliness or I’m in pain you know, if I stabbed somebody in the eye with an ice pick anybody else that was standing there watching me having the pain and maybe they truly understand what it was like.
JC – I know that many people living with constant head pain look for anything that can help relieve symptoms. I asked Dr. McAllister his thoughts about two treatments that know generates a lot of discussion in the cluster headache community: “Magic Mushrooms and Marijuana”
PM – There is an emerging literature on what’s known as micro dosing. So psilocybin in which is the stuff of hallucinogenic mushrooms, when taken in non hallucinogenic doses, which is very interesting, because some patients would be afraid I don’t want to hallucinate I don’t want to have a trip. If you use a fairly small dose, such as 200 micrograms, and it’s not every day, during the cluster, it’s usually twice a week tends to decrease the number of attacks and sometimes eliminates or gets someone out of the cluster entirely. The beside being illegal in most states, so those silicides is now legal in the state of Oregon. It has no lethality. In other words, one cannot overdose from psilocybin or magic mushrooms. Marijuana, medical or otherwise has become incredibly popular, and many of my patients come in asking about that. What I tell them is sort of the pluses and minuses. There’s very, very little scientific literature to suggest good or bad, we just don’t have the data. That said, in my state, we are allowed to certify folks for medical marijuana. My experience with it has been mixed. Again like psilocybin there is no lethality of marijuana, one cannot overdose. So conceivably you can think of it as probably safer than many The pharmaceuticals we use on a day to day basis, the problem I found is that not everybody gets better with it. It’s a very mixed group. Some folks it increases anxiety or makes them lethargic.
JC – It is so important for people living with head pain to work their healthcare providers to find the right combination of treatments that work for them. Remember we are the experts in our experiences and we need to approach medical care as a partnership. Having advocates like Joe in our community make this easier for many of us.
First, I want to thank you as a New Yorker for what you did after 911. So it was something that really impacted not only the country, but you know, our area, as you know, deeply. So I know you do a tonne of work helping to raise awareness on how headache and cluster and different types of diseases came came about because of exposure to different things during 911. Can you talk a little bit about your advocacy and about the either the trauma from 911 that’s caused this, is it the chemicals?
JM – My advocacy journey started in 2015. I had just retired a few years before that. My brother Dan, who’s also a New York City, firefighter, he he had cancer from 911, him as well as another 30 something year old guy in my firehouse actually developed the same kind of cancer and there was quite a few other firemen and police officers and people that I knew that worked on a pile that had cancer or had passed, or were still battling. The effort to get the 911 bill extended was still going on. I had gotten a notification to that there were going to be a rally at seven world trade. And I just said, You know what, I’m going to go, I’m going to go down and you know, and be part of the rally I met. There, I made up a few firemen, a couple guys that I worked with. So we went we visited some congressmen and you know, the rest is history after that, the bill got passed temporarily another five year bill and the year after that I was up to two years after I went to my first cluster headache conference. There I met Dr. Bob Shapiro from the Alliance for headache disorders and he got me in there to advocate for for people with headache disorders. I said, Yeah, I can do that. I’ve done few, a few meetings. I’d love to jump in on that. So I started working with cluster busters for headache disorders to advocate headache on the hill, a once a year event in Washington, where we try to get our lawmakers to listen to us and get funding and change the laws to benefit people that are suffering from headache disorders. The problem is that science doesn’t really know exactly what causes it. I got them after working on the pile for six months. But yeah, as far as the chemicals go, and headaches that they know that there is a higher rate of migraine, and headache disorders, from people that were exposed to toxins from 911, and also from burn pit exposure. That’s something that we’re working on too, with the Alliance for headache disorders to get more, more attention on that and more research and hopefully, you know, some more help for people that are suffering.
JC – what would you tell to you know, guys right now that might not be at the point that you are, if they’re having head pain, and they’re banging their head against the wall or putting their head in the freezer, which is something I did early on during my migraines. What would you tell other guys.
JM – I would say there’s a lot of other people that have going through what you’re going through, you’re not alone. Seek help, seek help with not only through your doctors, but online and and in particular like it whether you’re a migraine or cluster headache, patient, there are seminars to go to. It’s okay to tell, you know, to tell people that you’re in pain, you know, that your pain is real, it’s okay to show that you’re in pain, you’re human, we’re all human. I understand how it crosses your mind when you know when you just want to end the pain that you actually think about ending your life but I have to stress this. There is help there is you know, there’s life that the headache is temporary and there’s so much more to live for after and you’re not alone. You’re not alone in this. And if you ever feel desperate, and I’ve come across people that do feel desperate reach out there’s plenty other people out there that would be willing to help.
I’ve met so many great people through the advocacy work. It emerged my life definitely, you know, not only from you know, relief with the from the pain but I just I made friends and connected with people. It’s priceless to sit and to talk to somebody that truly understands what you’re going through.
JC – As a reminder if your pain is causing you to think about harming yourself there is help. In the United States you can call the National Suicide Prevention Lifeline: 800-273-8255
It can be hard to share the extent of your pain with someone else, especially when as men, we are taught to not show others our pain.
If a former New York City Firefighter and September 11 first responder can ask for help, you can too. Joe’s personal and professional sacrifices, and advocacy remind us that there is always help. That we are not alone on this journey, and that it is not weak to get the care and support we deserve.
If you or someone you know needs more information about the different types of head pain, how to get diagnosed and how to manage, listen to our Talking Head Pain audio guides.
Danielle discusses the pressures of life with migraine in the age of social media, as well as difficulties of managing a career while living with this debilitating condition. Danielle makes the call for transparent, honest conversations with others and explains the value of forging connections within the migraine community.
S1E1: Migraine and Millennial Culture
JC- Joe Coe
DNF – Danielle Newport Fancher
PM – Dr Peter McAllister
DNF – I just remember laying on the floor of the bathroom in the airport, which is just so gross, just lying there on the floor unable to sit up and being so sad and frustrated with my situation, and the pain was just so strong that I couldn’t move, and I was like this is really a challenge when you’re just laying on the floor of the airport bathroom.
JC – Lying under the bright lights of the airport bathroom, I couldn’t think of many worse places to have a migraine attack, but they can come on at any moment. Hi, I’m Joe Coe, the host of Talking Head Pain, where we confront pain head on. Migraine has been a part of my life for 20 years, so I understand the far reaching effects of migraine and that it doesn’t discriminate.
In this episode we are looking into how migraine affects a group of people that I fall into, millennials.
DNF – My name is Danielle Newport Fancher, I am 33, and I live in New York and work in media.
JC – We’re talking about migraines today, do you remember when you first experienced a migraine attack. How old were you?
DNF – Yes. I actually have a very vivid memory of my first migraine. So I got my first one when I was 16, and I was driving home from school and I remember leaving the parking lot and seeing a little spot in one of my weyes, which I now know is aura, but by the time I got to like a main intersection, the aura had taken over my full field of vision, and I was sitting in the intersection and I couldn’t see the road ahead of me, and I just stopped, so I sat in my car and I remember having so much anxiety that there were other people from my high school around me in cars also leaving the school, but I couldn’t move and I felt like I had completely created a traffic jam, so up until that point I had no awareness of migraine, and I had no awareness of aura, and it was a really scary thing from me to go through that and have no idea what was happening.
JC – The first one is pretty frightening, I understand that. What do your migraines look like now?
DNF – So I have intractable migraine, it basically means that even though I’ve had chronic migraine for well over a decade, I had a migraine one day and it never stopped, it started October 2nd 2013, it was like any other day, any other migraine that I had, the next morning I woke up with a migraine, same migraine was there a week later, and now we’re on 7 and half years later I have the same migraine. I know it sounds wild to think of someone being in constant pain for that long, but there are so many so many people just like me who are experiencing pain day in and day out, and I just feel like I’m not as sharp as I want to be.
JC – As a young woman, do you feel like people don’t take your pain seriously?
DNF – Yes. I have had many experiences of feeling like my pain isn’t taken seriously, but instead of being frustrated with that, which I have obviously experienced many times, I have made it my mission to share my experience more. I’ve almost taken on the responsibility of if people don’t get it, maybe I need to be more clear about how I talk about it and I think there are small micro ways to do that, like in conversations when somebody says something and i’m like, oh they don’t understand, it’s clarifying and talking about it, and explaining, burt i also feel like on a more macro level here being able to write my articles, and share my memoir and talk and be on podcasts, and just being able to share my perspective on a broader scale also communicates that this is real this tough and there’s so many of us. So I think if we are all joining in as a community doing these things and communicating whether it’s in very small ways or large ways, at least we know we did our best to change our dialogue around migraine.
So It’s like my whole mission to hopefully make somewhat of a dent on changing someone’s perspective on it.
JC – I love the active approach that Danielle takes with her migraine journey, she doesn’t see herself as a victim to migraine at all, but instead a tool to educate and connect with others. I wanted to dig into this further, why, as people living with migraine, are we not understood? Why do we need people from out community, like Danielle writing books and educating others through social media? I spoke to Neurologist, Dr Peter McAllister to understand this.
PM – I think a lot of patients with migraine, particularly those who have not seen a headache specialist, don’t think of it as a medical condition like you would diabetes or asthma or Crohn’s disease. migraine is a medical condition. migraine is according to the World Health Organisation, the second leading cause of functional disability, missing days of work and family life and social life of any other medical condition. They didn’t ask for migraine just like one doesn’t ask for asthma or diabetes.
And the second thing is, and most migraine patients know this, on some level, there is a stigma associated with migraine. A lot of folks don’t really think migraine is legitimate among medical conditions. And why is that? Well, because we all have some background, you know, little headaches and we discussed that. Also, the word headache in the English language is pejorative, like my boss gives me a headache or writing this paper gave me a migraine or something like that. So we have a condition that has negative connotations in the lay press anyway, I sometimes wish that migraine were renamed to something fancy like Central Nervous processing disorder or something like that, and got away from the negative connotations and negative stigma. Migraineurs, people who suffer from migraine are more likely to call in sick to work and say I have a cold rather than say they have a migraine, because when you pull a bunch of bosses, they don’t think that migraine is a legitimate reason to call in sick. So that’s something that I wish we had a better handle on and we can begin to make changes.
JC – Very interesting take, I think we’ve all come across someone, or even ourselves, who describes someone or something as a headache, but never fully considered the ramifications of that for the migraine community, and I know we’ve all called in sick and said it was anything but migraine at least once in our lives, I guess it’s for the fear of what our bosses might think, or our colleagues, which leads me to my next question for Danielle.
So how do you manage migraine and your career?
DNF – As I mentioned I work in media, in New York, and I do work a lot and I work very hard, but it’s a challenge, being in constant pain, and being ready to go to build presentations, to present to clients and to always be on in that way is a huge challenge.
I feel like my migraine pain comes in bouts, so some days if I am no in as much pain, I focus so much harder and get as much done as possible, if that means working all night, I’ll work all night, if on a Saturday I’m feeling ok, I’ll get my work done, but then it’s really to me figuring out how I can get everything done and be ready to go without pushing myself too hard to trigger another migraine, and if I’m in too much pain Im not going to get too much done. So it’s figuring out that balance between everything.
JC – And how open are you with your employer? How have you navigated talking about migraine with your employer?
DNF – If I look about to about ten years ago in my career, I didn’t tell anyone about my migraine, I was nervous to bring it up. I didn’t want to be seen as less capable, and so I kept it a secret for many years. Obviously now that I’ve done so much advocacy and written a memoir and many many articles about migraine, it’s kind of out there. But I’m pretty upfront about it with my colleagues, at this stage of my career, I’ve proven my value and that I can still maintain my workload and my job, so I think a part of it is that I do feel confident that I can have chronic pain and still build my career and do a good job. To me it’s just about transparency, if there’s a morning that I can’t work, I’ll email that I can’t do it. I’m just very honest about it with them, and I’m so lucky to have a team around me that supports me and is very understanding of it. But also, I work very hard and try to balance it all out.
JC – Definitely, I can relate to that as well. A little less serious, pro or con avocado toast?
DNF – Pro. Very millennial of course
JC – In millennial culture, a lot of it is about how we portray success, what we’re showing on instagram. Was it hard seeing peers achieving goals on a different timeline, how did you push yourself or justify that you’re on your own timeline.
DNF – It’s so hard to be in pain and feeling this sense like I’m falling behind and I think social media also paints a picture for anyone who might not be in pain that you might be falling behind of life stages and careers, because it paints such a beautiful picture of everyone’s life situation. So I think as a millennial, yeah it’s definitely tough, I know in my millennial circles, we feel very driven, a lot of pressure to be the best version of ourselves, whether that’s in our careers or in our lives, and that’s a lot of pressure to put on ourselves. And I really do find that when you’re in pain and you feel stunted in some way, whether it’s your career growth or being able to date, it’s tough. I think i’ve always really tried to keep as much going as I can, so I think there were phases where it was impossible to go on dates and keep the career going at the same level, and fulfill my whole social life while in pain I think there were different moments in time where I had to choose what’s the priority for that point in time, and I dont think thats just for migraine patients, I think that’s true for everyone. Being a millennial in this high pressure world it’s tough when you feel like migraine is getting in the way of your goals. If anything I really do feel like, despite being in constant pain for almost 8 years now, I have managed to keep almost everything going.
JC – It is hard to keep it all going, and thinking ‘is this going to be how I live for the rest of my life?’ Constantly managing migraine with everything else in my life, and although we might not have migraine totally under control, I find it reassuring knowing that there are innovative treatments specifically for migraine slowly making their way to shelves.
DNF – There have been so many years that I have taken medication for blood pressure, seizure medication, for all these different types of illness because results show that they help patients with migraine, and it was always such a funny thing for me, like where are all the migraine medications? Isn’t just such a fascinating thing that for all these years we were trying all these medications for other illnesses. But finally I really do feel like things are changing and we are starting to see more medication for people with migraine. I really think it is such a hopeful feeling, I feel like things have changed. Not only in having more options for us, but there’s more dialogue around migraine, we’re talking about it more, just getting more visibility on this illness and more funding just such an important thing, and I really do have this sense of hope for all of us that there are new things to try and we can hopefully have not only more awareness around our illness, but more relief.
JC – That sense of hope is really crucial for the migraine community, but I do think there are positives to migraine, so for you, what do you think your migraine superpower would be?
DNF – I truly believe that I can handle anything, that would be the migraine superpower that I have. It’s so funny that after all of this I think I can tackle anything. If I feel behind on things or If I do have a day where I can’t;t get things done because of my pain, somehow I will always be able to get it all done. There’s something about having the confidence that I can handle it, whatever it is. I’ve been able to get my career back on track, I feel really strongly about it, I’ve got an amazing relationship, I feel great about my social circles, like the friends who understand are the best, and I really think that it is possible, with time to keep everything going and reach all of those goals. Sometimes I need to take a bit of time and recalibrate a little bit and take breaks, or prioritise but I hope I can be an example that migraine isn’t completely holding us back.
JC – Someone needs to hear this, what tips or advice would you give to a millennial that’s living with migraine that might not have gotten to the point that you’re at.
DNF – It’s so hard to be in pain and feeling this sense like I’m falling behind and I think social media also paints a picture for anyone who might not be in pain that you might be falling behind of life stages and careers, because it paints such a beautiful picture of everyone’s life situation. So I think as a millennial, yeah it’s definitely tough, I know in my millennial circles, we feel very driven, a lot of pressure to be the best version of ourselves, whether that’s in our careers or in our lives, and that’s a lot of pressure to put on ourselves, and I really do find that when you’re in pain and you feel stunted in some way, whether it’s your career growth or being able to date, it’s tough. I think i’ve always really tried to keep as much going as I can, so I think there were phases where it was impossible to go on dates and keep the career going at the same level, and fulfill my whole social life while in pain I think there were different moments in time where I had to choose what’s the priority for that point in time, and I dont think thats just for migraine patients, I think that’s true for everyone. Being a millennial in this high pressure world it’s tough when you feel like migraine is getting in the way of your goals. If anything I really do feel like, despite being in constant pain for almost 8 years now, I have kept everything going.
JC – Danielle, I know how hard it is to live with migraine, the constant threat of an attack, thinking about how our careers might be impacted, I for one am grateful that there are new drugs and treatments that are coming to the market, some of the are already out on the market, I just hope that people like us don’t have to jump through fiery hoops to get it.
DNF – There have been so many years that I have taken medication for blood pressure, seizure medication, for all these different types of illness because results show that they help patients with migraine, and it was always such a funny thing for me, like where are all the migraine medications? Isn’t just such a fascinating thing that for all these years we were trying all these medications for other illnesses. But finally I really do feel like things are changing and we are starting to see more medication for people with migraine. I really think it is such a hopeful feeling, I feel like things have changed. Not only in having more options for us, but there’s more dialogue around migraine, we’re talking about it more, just getting more visibility on this illness and more funding just such an important thing, and I really do have this sense of hope for all of us that there are new things to try and we can hopefully have not only more awareness around our illness, but more relief.
JC – That sense of hope is really crucial for the migraine community, what do you think your migraine superpower would be?
DNF – I truly believe that I can handle anything, that would be the migraine superpower that I have. It’s so funny that after all of this I think I can tackle anything. If I feel behind on things or If I do have a day where I can’t;t get things done because of my pain, somehow I will always be able to get it all done. There’s something about having the confidence that I can handle it, whatever it is. I’ve been able to get my career back on track, I feel really strongly about it, I’ve got an amazing relationship, I feel great about my social circles, like the friends who understand are the best, and I really think that it is possible, with time to keep everything going and reach all of those goals. Sometimes I need to take a bit of time and recalibrate a little bit and take breaks, or prioritise but I hope I can be an example that migraine isn’t completely holding us back.
JC – Someone needs to hear this, what tips or advice would you give to a millennial that’s living with migraine that might not have gotten to the point that you’re at.
DNF – My number one piece of advice, and this has been throughout my migraine journey, is to connect with other people in pain, bottom line, this has been the one thing that has really really helped me. I think being in pain is so hard, and feeling like you’re the only one going through it, is much much harder. But knowing there are other people in your circles that get it, that you can call at any time, or get on social media and send them a message, like just knowing that someone’s out there who’s like I’m feeling it too. Today’s a hard pain day, like that is a game changer I feel like that alone has changed my whole journey and why I’ve started talking about it more, and why I’ve built this community, it’s just a game changer.
JC – It’s difficult opening up about migraine to friends and colleagues, especially when you’re a part of a generation that has been told that we’re whiners, complainers, or need participation trophies. However, Danielle has made it her mission to advocate and has helped countless people living with migraine to better understand the complexities of this disease.
You can find her work on Twitter and Instagram by following Migraine writer. Do you need some quick information about migraine, or have someone in your life that doesn’t real understand this disease? Our free patient audio guides offer valuable information and insights from leading experts that can help you become more informed.
Migraine Audio Guides
Need some quick information about migraine? Have someone in your life that doesn’t really understand this disease?
Our free Talking Head Pain Patient Audio Guides offer valuable information and insights from leading experts that will help make you more informed.
Check them out below and be sure to subscribe for access to future audio guides.
Get advice and information on how to navigate the complexities of the work environment with a migraine condition, as well as supporting others with migraine in the workplace.
S1E1: Migraine and Millennial Culture
Narrator 00:04
Welcome to this audio guide for Talking Head Pain, produced by the Global Healthy Living Foundation. Whether you or someone you care about have migraine, or think you or they might have migraine, these audio guides are designed to help you make sense of the headache and other symptoms. Accurate information will help you work together with your healthcare professionals to hopefully have fewer and less severe episodes. Please remember that headache of any kind is a medical issue, and always talk to your healthcare team if you have a headache that bothers or worries you. In this audio guide, we’ll discuss what migraine is and what makes it more than just a headache. In every audio guide, we provide information that has been checked by medical professionals specializing in the treatment of migraine and other headaches, and people living with migraine who understand what it is like. Suggestions for care are based on guidelines from the American Academy of Neurology and the American Headache Society. Most people get a headache at least once in their lives, whether from a viral infection, allergies, a bump on the head, or a stressful day. Many people however, have headache attacks much more frequently, from a few times a year to two or three times a month, three or four times a week, or even every day. These more frequent and recurring headaches are often episodes of migraine, a medical condition that affects one out of every eight people in the United States. Not every headache that happens repeatedly results from migraine and other headache conditions exist. Although these are much less common, you can find out more about that in our diagnosis audio guide episode. What is most important to remember is that getting headaches regularly is not something to brush off or let others brush off for you. Repeat headaches from any causes; migraine, injury, or anything else or a medical problem that can be treated and anyone with regular headaches of any kind deserve relief. So who are the one out of every eight people with migraine and could one of them be you? Although migraine is more common in women, it is just as unpleasant and painful for the one out of every 16 men living with migraine. Migraine can occur at any age and is most common between the ages of 18 and 44. Anyone can develop migraine, but it is more common in people who have family members with migraine, and in people with sleep disorders, epilepsy, depression, or anxiety. When you talk to your healthcare team about diagnosing your headache condition, it is important to share information about you or other people in your family who have any of these conditions. We’ll cover that in more detail in audio guide two. How do I know if a headache is a migraine? The headache of a migraine episode is often described as a throbbing pain on one side of the head, but it can occur on both sides. Sometimes migraine attacks don’t include a headache and are just as awful as the ones that do. This is because migraine episodes are more than the headache. By definition, other symptoms occur during a migraine attack. Those other symptoms include changes in vision and being very sensitive to light, sound, and smell, or having nausea and vomiting. Many people also have fatigue, sleepiness, and mood changes or feel lightheaded, weak or numb. Difficulty thinking or concentrating, or brain fog, may also happen. Movement or physical activity usually makes the pain worse. Often, a migraine makes people, especially children and teens, seek out a quiet dark space where they can be as still as possible. Some people find sleep helpful and others find the pain and other symptoms keep them from sleeping. It is important to recognize that not everyone has the same symptoms as other people and even though most people with migraine can describe their typical attack, not every migraine episode, even in the same person is always the same. How long do migraine attacks last? Some people notice vague symptoms of fatigue, irritability, or brain fog before an attack begins. This is the prodrome. A stiff neck, nausea, and changes in appetite are also noticed by some people. Whether a person has a prodromal period or not, they may also have a noticeable pattern of symptoms, called aura, a few minutes to an hour before the painful headache and other symptoms. Usually this is changes in vision with zigzag wavy lines and halos, distorting shapes and images, changes to other senses or difficulty speaking or moving. About one out of every three people with migraine has aura with some or all migraine attacks, but most people never experience aura and only some experienced prodrome. The attack phase may last anywhere from two hours to three days and includes the headache of moderate to severe pain, sensitivity to sound, light, or smell, and nausea or vomiting. Brain fog and severe fatigue are common. This is when many want to escape to a quiet dark place where they can be still. After the attack, there might be a postdrome, during which people feel groggy or just not quite right for a while. They may have remaining sensitivity, fatigue, mood changes, and brain fog. So, what causes all this? Current research suggests that it is mostly genetic with environmental and lifestyle factors affecting severity and frequency. The biologic response of a migraine attack starts with overactivity in a part of the brain called the brainstem, which connects the brain to the spinal cord. During the overactivity, certain substances are released, and nerves and blood vessels react in ways that cause the sensory changes and pain of an attack. Some of the newest migraine medications affect those released substances directly. We discuss this more in guides three and four. You may also have heard about migraine triggers. That having a glass of red wine or eating chocolate make migraine attacks happen. The latest research shows however, that even if certain foods, drinks and environments make a migraine attack more likely, these are not the actual cause of the attack. It is also become clear that what triggers, or makes an attack more likely, for one person may not be a trigger for another person. In other words, your triggers are not necessarily my triggers. Also, what seems like a trigger for a migraine attack like craving and then eating chocolate or other sugary foods may actually have been triggered by the migraine attack and not the other way around. Migraine can make you more sensitive to things like spicy foods, so you notice the spiciness more if a migraine is coming on than you would otherwise. Unfortunately, this can lead people to blame themselves thinking, “I should not have eaten drunk or done fill in the blank.” What is useful about triggers is that if you do identify something that often happens right before an attack, or makes an attack worse, you can try to find ways to avoid it. To identify your triggers, keeping track of your migraine attacks with a headache diary can be very helpful. As we’ll discuss in audio guide two, this can also help your healthcare team find a correct diagnosis for your headache and guide treatment options for you. Keeping a migraine diary has become easier because there are apps for that. Of course, you can also use a simple notebook and pen. To keep a headache diary, the essential items to record are: The date and time it started and ended. For each day it lasted, how did you function? Many find the stoplight approach helpful. A red light for stopped functioning, a yellow light for slowed or decreased functioning, a green light for your normal functioning. It is also essential to record where the pain was, what other symptoms you had, what medicine you took and how it worked, whether you were taking any other medications. It can also be helpful to record how well you slept the night before, whether the stress you’ve been experiencing was mild, moderate or high, whether you had been drinking water staying hydrated, whether you had been eating regular meals. If you ate or drink something known to trigger migraines for some; red wine, chocolate, aged cheeses, or highly processed foods. What activities you were doing before the attack. Such as a longer than usual work day, a late night out with friends, vigorous exercise or missing regular exercise, and any other change in your usual routine. Environmental factors like bright lights, screen time, changes in the weather, noise levels, or exposure to chemicals like cleaning solutions or drying paint. For people who menstruate, where you were in your cycle and anything else that you frequently notice during an attack. Understanding any pattern to your migraine can help you avoid the things you have control over and lead to better health overall. However, it is rare that lifestyle changes alone eliminate migraine attacks. Remember that migraine is a biologic disease, not about what you do or don’t, but about how your brain chemistry is working. Now you know the difference between headache and migraine. And if you feel as though you may suffer from migraine, you can find information in our migraine diagnosis audio guide. If you have already been diagnosed and are wanting more treatment options, listen to our audio guide on migraine medication options for migraine. We also discuss lifestyle changes and medication alternatives in nonmedical migraine therapies audio guide and the common challenges of migraine on our managing migraine in the workplace audio guide. For more medical information and advice about your own migraine treatment, speak to your doctor.
The first step to proper treatment is getting a diagnosis. In this audio guide, we explore the importance of a proper diagnosis, how to get diagnosed, the causes and triggers of headache, and barriers to health care.
S1E7: Getting A Migraine Diagnosis Audio Guide
Narrator 00:10
Welcome to this audio guide for Talking Head Pain, produced by the Global Healthy Living Foundation. Whether you or someone you care about have migraine, or think you or they might have migraine, these audio guides are designed to help you make sense of the headache and other symptoms. Accurate information will help you work together with your healthcare professionals to hopefully have fewer and less severe headache episodes. Please remember that headache of any kind is a medical issue. And always talk to your healthcare team if you have a headache that bothers or worries you. In this audio guide, we discuss getting headache disorders diagnosed so they can be properly treated. In every audio guide, we provide information checked by medical professionals specializing in the treatment of migraine and other headaches and other people who have migraine and understand what it is like to live with recurring headaches. Suggestions for care are based on guidelines from the American Academy of Neurology and the American Headache Society. Almost everyone will have a headache a few times in their lives. Often these are symptoms of another illness. But when headaches keep happening in the absence of other illness, it may be a headache disorder. Getting headaches regularly is not something to brush off or let others brush off for you. Repeat headaches from any causes; migraine, injury, or anything else, are a medical problem that can be treated and anyone with regular headaches of any kind deserves relief. Why should you get a diagnosis? Getting a specific diagnosis for whatever is causing repeat headaches is an opportunity to find the best treatments for you. Different headache disorders respond to different medications, and each person responds better to some medications than others. It is also important to know that misdiagnosis of headache disorders is not uncommon. Many people with migraine, for example, are told they are having headaches from allergies or sinus conditions. If your physician is not paying attention to the more subtle signs of specific headache disorders, like eye tearing, neck and shoulder pain, scalp tingling, light sensitivity, or nausea, they may be mistaking one headache disorder for another or think the headache is caused by an unrelated problem. That’s a missed opportunity to get better, more effective treatment and to stop using and paying for treatments that are not working for you. Let’s talk about access to healthcare. Before talking about getting your headache disorder diagnosed, we want to acknowledge that for many people, this is limited by poor access to healthcare, or poor treatment within the healthcare system. In the United States, many people do not have insurance or cannot afford to see a doctor. If this is the case for you, we hope that these audio guides will provide at least some useful information that you can still use to care for yourself, because you matter. We also recognize that structural racism and discrimination occur within the healthcare system. And this can make it more difficult for black people and members of other marginalized groups to make use of the information we are sharing. We know studies have shown black people are less likely to receive appropriate diagnosis or treatment for migraine headaches in emergency rooms, and are also more likely to be perceived as the so called difficult to patient if they self advocate for proper care. Although no profession or individual is immune from bias, there are healthcare providers working to change this. We encourage you to continue educating and advocating for yourself and others. Finding a physician who welcomes this may be the first step on your journey to improving your headache condition. Many people with chronic conditions of any kind also find networking with others who have the same health condition and advocacy can help fight stigma and isolation. You may feel you do not have a lot of time or energy to do this. And that is okay. If you do want to explore this further, we have resources available at ghlf.org. If you can, how do you get started? If you have a regular healthcare provider, talking to them about your headache episodes is a great first step. Let them know as much as you can about your headache attacks. In audio guide one we talked about keeping a migraine diary that includes; when and where pain occurs, what if any other symptoms come with before, during and after, how long your symptoms last, if symptoms affect your day to day activities, what medications you have tried and whether those help, any other medications you take, and any other consistent patterns you see. Sharing your migraine diary with a healthcare professional can give them a very clear pattern that they may be able to connect to specific headache disorders. Together, you and your healthcare team may be able to identify a likely cause of your headache episodes and treatment options to try. You may also decide to consult a neurologist or headache specialist. Neurologists specialize in brain and nerve conditions including migraine and headaches. Headache specialists have completed specialized training for diagnosing and treating headache disorders. If you live in an area where neurologists or headache specialists are not available, you may be able to have a telemedicine appointment with one or may be referred to a pain management specialist. The American Migraine Foundation and the National Headache Foundation offer lists of healthcare providers who are experienced in treating migraine and other headache conditions. You can visit their websites americanmigrainefoundation.org or headaches.org. How are headache disorders diagnosed? At this time, there is no blood test, X-ray, or MRI study or procedure, such as taking a person’s blood pressure, that can objectively determine if a person has a headache disorder or what kind of headache disorder they may have. Headache disorders are diagnosed clinically, by recognizing patterns common to specific disorders and by making sure something that can be tested objectively is not the cause. Your healthcare provider, whether they are your primary care doctor, a community healthcare person, a neurologist, or a headache specialist will first want to know more about your headache episodes. As we’ve mentioned, having a headache diary to share can make this process easier, and your healthcare professional may still want to ask more questions or for more details. The first step in diagnosis is understanding your unique pattern of headaches. How does the pain feel to you? Is it a dull ache that worsens into throbbing pain or a sensation of being stabbed? How intense or difficult to tolerate is your pain, often on a 0 to 10 pain scale? Does the pain worsen with movement? Where on your head does pain occur? Behind one or both eyes, out of the front or back of the head, with neck and shoulder pain? Do other symptoms come right before, during, or after the headache? For example, changes in vision or other senses? Nausea or vomiting? Sensitivity to lights, sounds, or smells? Dizziness or feeling weak or numb? Difficulty thinking or speech changes? Balance issues? How long do your symptoms last from first signs until being able to return to normal activities? How often do you have headache episodes? Every few months, weeks, or days? How many days each week or month do you have no pain or discomfort? Do your symptoms interfere with sleep, work, household chores, exercise, leisure activities? Do your symptoms only occur in some environments, such as at your worksite and not others? Your doctor may also ask whether you’ve noticed any stressors, foods, drinks, activities, weather conditions, odors, or any other factors that seem to set off your attacks. Both to recognize patterns in your headache episodes and to determine other illnesses are not the cause, it is important to discuss you and your family’s medical history. This includes high blood pressure, heart conditions or strokes, epilepsy, depression, anxiety or panic attacks, asthma, anemia or diabetes, chronic pain, fibromyalgia, neck and shoulder pain, surgeries, injuries and other conditions. It is also important to discuss prescription and over the counter medications you use, as well as other substances including alcohol, cigarettes, and caffeinated beverages like tea, coffee, sodas, or energy drinks. All of these can cause or worsen headaches and associated symptoms. To make sure another condition is not the cause of your headaches, it is likely that your doctor will want to do a blood test to rule out thyroid problems, diabetes, infections, or exposure to toxins. Depending on your age or overall health. A CT scan or MRI on your head and neck may be ordered to check for any problems with blood vessels, or the presence of any growths or tumors, although these are rarely found. Usually imaging studies are done only if your headaches begin after age 40 or if your headache pattern has changed. Although uncommon, if you have other signs of infection or nervous system, your doctor may also want to take a sample of your spinal fluid to evaluate. Is it migraine? Migraine is by far the most common cause of recurring headaches. If other problems have been ruled out and you have had five or more headaches that were at least four hours long and came with nausea or vomiting or sensitivity to light or sound, migraine may be diagnosed. The good news is that there are more specific, effective, and safe medications to treat migraine than ever before. You can learn more about these in our migraine medication options audio guide. If you already use medication, or are not wanting to try that route just yet, you can learn more in our non-medical therapies audio guide. We also discuss more practices of everyday life in our managing migraine in the workplace audio guide. If you’re still unsure about the difference between migraine and headache, you can find out more about the differences in our what is migraine audio guide. For medical information and advice about your own migraine treatment, speak to your doctor.
Learn more on the differences between headache disorders and common headaches, as well as acute and preventative migraine treatment options.
S1E8: Medical Treatment for Migraine and Headache Audio Guide
Narrator 00:11
Welcome to this audio guide for Talking Head Pain, produced by the Global Healthy Living Foundation. Whether someone you care about or you have migraine, or think you or they might have migraine, these audio guides are designed to help you make sense of the headache and other symptoms. Accurate information will help you work together with your healthcare professionals to hopefully have fewer and less severe headache episodes. Please remember that headache of any kind is a medical issue. And always talk to your healthcare team if you have a headache that bothers or worries you. In this audio guide, we go over medication options. In every audio guide, we provide information checked by medical professionals specializing in the treatment of migraine and other headaches and other people who have migraine and understand what it is like to live with recurring headaches. Suggestions for care are based on guidelines from the American Academy of Neurology and the American Headache Society. Almost everyone will have a headache a few times in their lives that may simply be symptoms of another illness. Headache disorders, repeat headaches in the absence of other illness, are something different and not something to brush off. Repeat headaches from any causes; migraine, injury, or anything else are a medical problem that can be treated. And anyone with regular headaches of any kind deserves relief. For the most common headache disorder, migraine, there are more effective and safe medications than ever before. Many of these may be helpful for other headache disorders, but in this guide we focus specifically on migraine treatment. Remember that not every medication will work for every person, and you may need to try different treatments, or combinations of treatments, to see what works for you. Lifestyle changes such as healthy sleep, exercise, and eating well may also be needed. And we cover those in guide four. If you have other conditions or are taking any other medication, herbal or vitamin supplements, or use cigarettes, alcohol or other drugs, it is essential to include that in a conversation with your healthcare provider about what medication is appropriate for you. If you think you may be pregnant or plan to become pregnant, you should let your healthcare provider know right away because some medications that treat migraine may not be safe to use. Most treatments for migraine come in one of two basic flavors, acute and preventative. One of the newest migraine medications -Nurtec- is unique in providing both acute relief of an attack and reducing frequency of attacks. We’ll come back to that option in a moment. There is a non-medication option called neurostimulation that can be useful in both acute and preventative treatment. And we’ll come back to that option too. Acute treatments are taken during a migraine attack to reduce the length and severity of an attack. Acute treatments taken by mouth may not work that well for people with nausea and vomiting that can affect how well or if a medicine is absorbed. There are, however, acute treatments available as nasal spray, injection or suppository. Preventative treatments are used to make attacks happen less often and these may be pills, nasal sprays, injections or infusions. In 2021, there are also two medications in development that may work for acute and preventative treatment. Over the counter treatments for acute migraine treatment include anti-inflammatories and analgesics like aspirin, ibuprofen, naproxen sodium, indomethacin, and acetaminophen. These are more commonly known by brand names Advil, Aleve, Motrin, Indocin, and Tylenol. All may be helpful for milder attacks, but are usually not effective for moderate to severe migraine episodes. Combinations of these drugs are also available, and these may be somewhat more effective. Some combinations include caffeine, and although that may make them more effective, it also has a higher risk for what is called rebound headache -or medication adaptation headache- a condition in which taking a certain headache medication more than three or four times per week increases the frequency of attacks. This is also called medication overuse headache. If you find you’re taking medicine for your headache attacks more than three times a week, it is a good idea to consider preventative treatment. The most commonly prescribed acute migraine treatments are the triptans. These medications block serotonin, one of several chemical signals released by nerves during a migraine attack. Triptans also affect blood vessels and nerves in other ways that helps to reduce the pain and other symptoms of migraine attacks. Triptans are available as pills, nasal sprays or injections and are more effective when used early in a migraine attack. Injected triptans may cause a reaction at the site where the needle enters. Other side effects may include a dizziness, drowsiness, muscle weakness or nausea. Because triptans affect blood vessels and blood flow, they are not recommended for use in people with heart conditions, diabetes, high blood pressure, high cholesterol, obesity, and other conditions or for people who smoke. The newest acute migraine prescription treatments, for which there are no generics yet, are more targeted to migraine. Because these are still brand name treatments, they can be difficult to access and expensive. For reimbursement to be authorized, a person may have to show they have tried two or three other treatments without success or cannot take anything else for safety reasons. The newest acute treatments ubrogepant, branded as Ubrelvy; and lasmiditan branded as Reyvow. Ubrelvy is an a new class of drugs that block activity of calcitonin gene-related peptide, or CGRP, which is also released during migraine attack. Ubrelvy is taken by mouth and may cause nausea and sleepiness. So far, Ubrelvy seems to be safe in people with heart conditions or risk factors for heart conditions. Ubrelvy may interact with other medications, so it is important to discuss all your medicines with your doctor before starting to use it. Medication adaptation headache has not occurred in people using Ubrelvy so far. Reyvow effects serotonin without affecting blood vessels, so it can be used by people who cannot use triptans. However, Reyvow, which is taken by mouth, has other serious side effects including dizziness, fatigue, sedation, nausea and vomiting, muscle weakness, and a small potential for addiction. Reyvow should not be taken with alcohol or other drugs that are sedating and can also cause driving impairment so should not be used within eight hours of driving. There is a risk of medication adaptation headache with Reyvow. Rimegepant, branded as Nurtec, is also a CGRP inhibitor that can be taken when you’re having a migraine attack to reduce the severity and length of the attack. As a new brand name treatment, Nurtech may still be difficult to obtain depending on your insurance coverage. Nurtec is a small tablet that dissolves in your mouth. The most common side effect has been nausea, but rarely people may have a rash or shortness of breath. If shortness of breath or rash occur, you should stop taking Nurtech and contact your doctor. Nurtech may also interact with other medications. So it is again important to talk with your doctor about all medicines you take before starting to use Nurtech. People who have liver conditions should not use Nurtech. Medication adaptation headache has not been seen in people using Nurtech. In fact, for people with up to eight migraine attacks per month, taking Nurtech every other day is safe and can reduce how often attacks occur. We’ll come back to that when we talk about preventative treatments. For people who cannot take or access triptans, gepants, or lasmiditan other prescription treatments are available. These includes stronger anti-inflammatory medications like prednisone or dexamethasone. These steroid medications however, should only be used for a short time because of serious side effects that come with long term use. A combination of acetaminophen, isometheptene, and dichloralphenazone -more simply called by its brand name Midrin- may be effective but also should not be used by people with heart disease or heart disease risk factors. Ergotamine plus caffeine is available as a pill but has the same issues as over the counter medications with caffeine. Dihydroergotamine, branded as D.H.E. 45, or Migranal, is available in nasal spray or injection and may be useful when migraine is long lasting or very frequent. Neither ergotamine nor dihydroergotamine are recommended in people with heart disease risk factors. A new delivery method for dihydroergotamine, branded as Trudhesa, was approved in September 2021 for acute treatment of migraine attacks. This is a nasal spray delivered to the upper nasal category with a special device. As with all forms of dihydroergotamine, Trudhesa is not recommended for people with heart disease risk factors. Runny nose, nausea, changes in taste, dizziness, vomiting, sore throat, sleepiness, and diarrhea are unusual side effects that may occur. Medication adaptation headache is a risk with Trudhesa and it should not be used more than three times per week. Some antinausea medications can be effective for migraine, even if you do not experience nausea and may be even more helpful if you do. Anesthetics such as lidocaine nasal spray have very short lasting effects, but may be used while waiting for other medications to take effect. Opioid analgesics, such as codeine, are rarely used for acute migraine treatment when nothing else is effective or safe. Opioids carry a strong risk for dependence and addiction with strong side effects like constipation, drowsiness, and nausea. If you have 15 or more days a month with headache pain, your migraine is considered chronic and preventative treatment may make your attacks less frequent. If you have 0 to 14 days with headache each month, your migraine is considered episodic. People with episodic migraine who have attacks on a weekly basis are also very likely to benefit from preventative treatment, although unfortunately, they often do not receive it. The newest preventative treatments for migraine are also the first developed specifically for migraine. Nurtec, as mentioned above, reduces migraine frequency when it is taken every other day. Another CGRP inhibitor that can be taken by mouth for preventative treatment, to reduce how often attacks occur, is atogepant, branded as Qulipta. Side effects seen with Qulipta include nausea, constipation, and fatigue. Both Nurtec and Qulipta are approved for preventative treatment only for episodic migraine, people who have fewer than 15 migraine attacks per month. Both Nurtec and Qulipta are safe and people with risks for heart disease. Monoclonal antibodies that inhibit activity of CGRP including erenumab, branded as Aimovig; eptinezumab, branded as Vyepti; fremanezumab, branded as Ajovy; and galcanezumab, branded as Emgality can be used for prevention in anyone who needs preventative migraine treatment. Three of these, Aimovig, Ajovy, and Emgality, are injections you give yourself at home once a month, or once every three months. Vyepti is an infusion you receive in a two hour outpatient visit to a health care provider once every three months. All are considered safe for people with heart disease or heart disease risk factors. Side effects include soreness at the injection or infusion site, rash, and constipation. High blood pressure and severe constipation have been seen after treatment with Aimovig. All the new drugs developed to prevent migraine attacks by inhibiting CGRP including the two taken by mouth (Nurtec and Qulipta), the three taken as self injections (Aimovig, Ajovy, and Emgality), and the one given as an infusion (Vyepti) are brand name nongeneric drugs that can be difficult to to access. Several other prescription treatments developed for other medical conditions have been found to also be useful in reducing the frequency of migraine attacks. Botulinum toxin A, or Botox, well known for its cosmetic effects, prevents migraine. Four to six injections are given in four to six areas of the head and 16 to 13 injections every three months. It is essential to have a well trained headache or pain specialist give the injections. Improperly injected botulinum toxin can spread away from where it is needed and cause complications. Often, two or three injections cycles over six to nine months are needed for botulinum toxin to reach its full effect. Side effects include injection site reactions. Anesthetic nerve blocks are the injection of anesthesia, sometimes with anti-inflammatory drugs, around a nerve involved in the migraine process. Nerve blocks work well to provide pain relief to specific areas and reduce or eliminate migraine for people who have not had relief from other treatments. These should be given only by neurologists or anesthesiologists specializing in headache or pain treatment. Improper injection of anesthesia can result in permanent damage to a nerve. Many antidepressants and antiseizure medications affect some of the substances involved in the migraine process also prevent migraine. For people who have depression and migraine or epilepsy and migraine, these may be excellent choices. Drugs that treat heart disease or blood pressure problems, such as beta blockers. angiotensin converting enzyme inhibitors, and angiotensin receptor blockers, have also been found to prevent migraine attacks. For those with heart disease or heart disease risk factors. The pros and cons of these drugs should be weighed carefully for people who menstruate and have migraine attack frequency timed with their cycle, birth control pills or hormone replacement therapy is sometimes considered as a way of making migraine less frequent. This is advised against for people who have migraine with aura or who are in the period of and around menopause, when stroke risk is higher because these treatments increase stroke risk. All these drugs have their own side effects and a drug that works well for one person may be entirely unhelpful for another. Shared decision making with your healthcare team will allow you to make well informed choices and be prepared to change those decisions if necessary. Always ask, “Why do you think this treatment will make me feel better? How does this treatment work to improve my symptoms? What side effects should I be aware of or worried about? How soon can I expect it to feel relief of my symptoms?” Last let’s talks about neuromodulation -devices that use electric pulses- for acute and preventative migraine treatment. An advantage of this non-drug option is that there is no risk of medication adaptation headache. A disadvantage is that these devices can be expensive and may be difficult to have reimbursed by insurance companies. The Cefaly device is available over the counter and is worn on the forehead for 60 minutes during a migraine attack. For preventative treatment, the device is used for 20 minutes every day. The prescription Nerivio device delivers remote electrical stimulation (REN) device to the upper arm, typically for 45 minutes of stimulation during an attack. This is the only device approved only for acute treatment and is approved for people aged 12 years and up. The prescription gammaCore Sapphire device is held at a specific point on the neck for two pulses two minutes long as soon as an attack begins, and can be repeated twice over two and a half hours if needed. For prevention, it is used three times a day every day. The STMS mini device is held to the back of the neck to deliver three pulses of magnetic stimulation, which can be repeated every 15 minutes for up to one hour. For prevention, two pulses are used in the morning and night every day. The company that produces STMS mini, eNeura, filed for bankruptcy in December 2020, however, so it is unclear how long the device will be available. Side effects are rare and include tingling, warmth, redness, itching, muscle spasms, and mild discomfort where treatment is performed. With the STMS mini device, brief lightheadedness, dizziness, ringing in ears and nausea also occurred. If you have implanted medical devices such as pacemakers, cochlear implants, or any other device that has an electric battery or signal, you should not use these for migraine treatment. People with any metal in their skull, other than dental fillings, should consider only the Nerivio remote electrical stimulation device. There are other non medical treatment options that you can try before taking the step to any of the procedures of medications. You can find out more at our Non-medical Migraine Therapies audio guide. If migraine is affecting your career, find out how to navigate that in our Managing Migraine in the Workplace audio guide. If you’re unsure of the difference between headache and migraine, we make it simple for you in our What Is Migraine audio guide. And we also discuss the next steps of getting diagnosed in our Migraine Diagnosis audio guide. For medical information and advice about your own migraine treatment, speak to your doctor.
In this audio guide, we explore lifestyle changes and nonmedical therapies to help you live well with migraine.
Living Well With Migraine Audio Guide
Narrator 00:10
Welcome to Audio Guide four for Talking Head Pain, produced by the Global Healthy Living Foundation. Whether you or someone you care about have migraine, or think you or they might have migraine, these audio guides are designed to help you make sense of the headache and other symptoms. Accurate information will help you work together with your healthcare professionals to hopefully have fewer and less severe headache episodes. The good news is there are more effective safe treatments than ever before. There is also more evidence than ever that a combination of medicine and a healthy lifestyle are the most successful approach to managing migraine. In this audio guide, we share lifestyle changes you can make, integrative therapies you can try, and other ways of living well with migraine. In every audio guide, we provide information checked by medical professionals who specialize in migraine and other headache disorders. The guides are also reviewed by people who have migraine and understand what it is like to live with recurring headaches. Suggestions for care, including the lifestyle changes we talk about today, are based on guidelines from the American Academy of Neurology and the American Headache Society. As you try lifestyle changes and integrative treatments, you will find some work better than others, not only for your migraine, but also for you as a person. We recommend to try one change at a time for a few weeks. Keep notes, ideally in your migraine diary. That will give you a record of what does and does not work. Share the things you are trying with your healthcare team just like you share your overall health information. Not every treatment works well with another and your healthcare team may have experience and knowledge about combinations that could be unhealthy. Please remember, headache of any kind is a medical issue. Always talk to your healthcare team. If you have a headache that bothers or worries you. That goes for headache treatments too, whether medicine, exercise, or sleep habits. If something you try doesn’t feel right, work with your doctor to find out what is best for you. There is increasing evidence that a healthy lifestyle protects the brain, reduces migraine frequency and severity, and even has a role in preventing other brain diseases like Parkinson’s and Alzheimer’s. Dr. Jennifer Robblee and Dr. Amaal Starling are neurologists who specialize in headache disorders at the Mayo Clinic in Scottsdale, Arizona. They created the easy to remember acronym SEEDS for self care techniques to help reduce migraine attacks. S is for sleep. Not enough or too much makes migraine attacks more likely. The healthiest sleep habit for most people is seven to eight hours every night. You can make that more likely by developing a sleep routine. Turn off electronic devices one hour before going to bed and set a consistent bedtime and wake time for every day, even on the weekend. If consistent sleep is hard to achieve or you feel tired during the day, talk to your healthcare team, Consider specialized cognitive behavioral therapy for insomnia, which is a short term therapy proven safer and more effective than medicines to aid sleep. E is for exercise. There are almost too many benefits of regular exercise to list including reducing heart disease risks, improving brain health, maintaining a healthy weight and sleeping better. All of which also improve migraine. Exercise can also help with stress management and improve your mood. Aim for 150 minutes of moderate exercise each week. Whether that is in five minute walks twice a day, or 50 minutes of a vigorous workout three times each week. What exercise you do and how often you exercise is less important than finding something that you enjoy enough to do regularly. There is also evidence that people with chronic migraine who use preventative treatments have fewer migraine days each month when they exercise at least two and a half hours per week. The second E in SEEDS is eating and drinking. Eating regular heart healthy meals, drinking plenty of water, keeping alcohol intake moderate, avoiding caffeine, and not smoking all reduce migraine frequency. These also help you stay healthy in general. Avoid skipping meals over or overdoing it at a single meal. Drink one eight ounce cup of water eight times a day to stay hydrated. Keep alcohol intake moderate, one to two drinks per day or less. And avoid caffeinated beverages. If you do drink coffee, tea, soda or energy drinks containing caffeine, try to keep the amount small and regular. Changes in caffeine intake can cause migraine attacks. If you smoke cigarettes or cigars, your healthcare team can help you access resources to help with stopping. D is for diary. We’ve talked in earlier audio guides about the importance of keeping a diary of your migraine attacks to help you and your healthcare team know the ins and outs of your migraine and your migraine treatment as it affects you. Record the day and time an attack starts and ends, what medicine you took, if any and how well it worked, and how the attack affected your ability to keep doing your usual activities. The second S is for stress management. Stress is a big migraine trigger for many, with some people experiencing high stress just before an attack that decreases as the attack resolves. Other people are more aware of stress during the painful phase of migraine attacks, and others have stress that doesn’t change during migraine attacks. Of course, the idea of managing all the stress in your life may even make you laugh. So much of what causes us stress is outside of our control. Still, even when it is not possible to reduce your stress, you may be able to find healthy ways of coping with it. Exercise, gardening, other hobbies, meditation, yoga, tai chi, mindfulness and relaxation techniques are all known stress reduction tools you can experiment with in case one of these will work for you. In addition to sowing seeds for success with self care, integrative nonmedication treatments may help make migraines less frequent or less severe. Cognitive behavioral therapy is one of the best proven methods for improving migraine. This therapy helps people control the thoughts and reactions they have about their pain, which can reduce the stress of having to handle something so difficult. Cognitive behavioral therapy reduces stress and improves mood. If like so many people with migraine, you also experienced depression or anxiety, cognitive behavioral therapy will likely also help with these. Although there is certainly a psychologic component to how we perceive the pain we experience, the fact that therapy is helpful does not mean migraine is all in your head. Migraine is not a psychiatric disease or a psychological problem. It is a biological and chronic disease. Suggestions that it is anything else are part of the stigma we are working to change. No matter what chronic condition a person has –epilepsy, diabetes or high blood pressure– managing stress and emotions helps people manage chronic health conditions. Biofeedback is another integrative technique that can help with migraine. Although it can take a long time to become effective because it is a learning process. A trained biofeedback therapist uses small electric monitors to help you learn to recognize changes, like muscle tension, body temperature, and breathing and heart rates. As you learn to recognize those, you can address pain sooner and may be more able to address and manage it. Some people find a massage to relax muscles and the mind is helpful. The ancient technique of acupuncture is also helpful for some, although there is no clear evidence of why this is so. Devices that modify the light you were exposed to may also help. Glasses that block blue light have become more commonly used and more commonly available, but most were not designed specifically for people with the light sensitivity of migraine. Two companies that do produce glasses specifically for people with migraine, or TheraSpecs and Axon Optics. Another light related integrative treatment is the Allay Lamp, which uses a specific wavelength of green light. Some research suggests that this can decrease pain during a migraine attack. Some people say using the lamp regularly also decreases the frequency and severity of migraine attacks for them. There is limited evidence that any herbs, vitamins or supplements help with migraine. Butterbur has the best evidence but can be dangerous and harmful to your liver if it is not free of pyrrolizidine. Because this chemical can contaminate butterbur, you must have your liver function closely monitored by a doctor if you use it. Riboflavin, vitamin D, magnesium or feverfew may also help with migraine and are generally safe to try. Always tell your healthcare team about any supplements or over the counter medications you use because they may interact with migraine medications or not work at all. Vitamins, supplements, and herbs are not regulated as strictly as medication, and the quality and potency can vary widely. There is a stigma around migraine that causes many people, perhaps even your loved ones, to brush it off as nothing serious. But whether you’ve lived with migraine for years, just recognized your attacks are migraine, or just started having them you know it is so much more than just a headache. It is not uncommon for migraine to be severe enough to prevent people from working, doing household chores, or attending family and social events. Migraine can take a dramatic physical and emotional toll. Educating yourself, your support network, your coworkers and other people can be helpful in overcoming this very negative aspect of headache. You can join support groups and patient advocacy organizations that help you do this. Participating will put you in touch with people who have similar experiences, making isolation less likely because you will know that you are not alone. If you’re wanting to know more about medication, listen to our audio guide on Migraine Medication Options. If you’re wanting to know more about migraine, listen to our audio guide on What Is Migraine, and our audio guide on Migraine Diagnosis. If you are needing further guidance of managing migraine in social settings, listen to our audio guide on Managing Migraine In The Workplace. For more medical information and advice about your own migraine treatment, speak to your doctor.
Get advice and information on how to navigate the complexities of the work environment with a migraine condition, as well as supporting others with migraine in the workplace.
Migraine on the Job
Narrator 00:07
Welcome to Audio Guide Five for Talking Head Pain, produced by the Global Healthy Living Foundation. Whether you or someone you care about have migraine, or think you or they might have migraine, these audio guides are designed to help you make sense of the headache and other symptoms. Accurate information will help you work together with your healthcare professionals to hopefully have fewer and less severe episodes. In this audio guide, we address a key challenge for many people with migraine, how it is affected by and affects our work and workplaces. As in all our audio guides, we provide information checked by medical professionals who specialize in migraine and other headache disorders. The guides are also reviewed by people who have migraine and understand what it is like to live with recurring headaches. For this guide, we also use information from “Migraine In The Workplace: What Employers And Employees Need To Know,” which includes survey data about migraine from over 800 different workplaces. Our workplaces are complicated mixtures of people with different backgrounds and life experiences. There are also many different types of workplaces and work cultures. Some work teams interact and feel as close as families for better or worse. Others have a more detached approach, but still with team loyalty. Some are cutthroat competitive. But whatever type of workplace you are in and whatever workplace culture you have, if you think of six coworkers, it is likely that one of them also has migraine. Surprised? We wouldn’t blame you if you are because migraine is a chronic condition that carries stigma, negative responses of others and society. As a result, many people, perhaps you too, say nothing about their migraine attacks at work. In the migraine in the workplace survey, three of every four people with migraine said they were reluctant to share their condition with their manager or call in sick when having a migraine attack. Only one in five people with migraine said their workplace was often understanding of the condition. Some of the stigma of migraine in the workplace comes from simply misunderstanding or a lack of shared experience. The five of six people who don’t have migraine may think that migraine attacks are just a bad headache and fail to understand why some people would need to call out sick because of one. They may not understand that a migraine attack can make it so hard to do your job that you might as well not be there. Because of this if you do work through a migraine attack, which two out of three workers with migraine said they had been made to do, your coworkers may perceive your work effort and you negatively. Perhaps even as negatively as they perceive calling in sick for “just a headache.” The one in six who has migraine knows better. We know that not only the headache, but also the other symptoms of a migraine attack, are excruciating. We know that sometimes just trying to sit up when you’re having an attack can make a person vomit, that the slightest bit of light, artificial or natural, can make you feel as though your eyes were being stabbed repeatedly. And that every sound can reverberate inside your skull like an electric shock. And most of us are aware of the lower productivity that occurs while working through a migraine attack. At least that is what 93% of the people with migraine who are surveyed said. And almost one in five said they believe they had lost a job because of their migraine. No wonder people are quiet about migraine in the workplace. Even if coworkers and managers don’t react negatively to your taking sick days or being slowed down at work because of migraine, the worry that they might is real. And of course this causes stress. Ironically, the most common trigger of migraine attacks. Other environmental factors also play a role in triggering migraine attacks or making them more frequent. The lighting, sounds, and smells of your workplace can also trigger migraine attacks or make them more frequent. The workplace setup; how you sit, stand or move throughout your day can also affect migraine, which is made more frequent by neck and shoulder pain, poor posture and other conditions that affect muscles and nerves. It is important to pause here and remember that some people have migraine that is so severe and occur so often that they are not able to work. And because migraine, despite being the second most disabling disease worldwide, is not included in the Social Security Disability Benefits Blue Book, it can be very challenging, although not impossible, to get disability benefits because of migraine. For people with migraine who are able to work, there are things we can do to improve the work environment for ourselves and others in ways that will help reduce migraine triggers. The idea of migraine as just a headache and the stigma that goes along with that are as we noted, most often caused by a lack of knowledge. For example, of human resource professionals who responded to the survey, almost all, 95%, said that migraine affects the use of sick days and productivity when people are present. But almost half, 43%, also believed people can work with a migraine attack. This means sharing knowledge and educating people about the realities of migraine and migraine attacks is an important way to make things better for people with migraine in the workplace. If you have enough support and feel comfortable doing so, you can share Talking Head Pain and other Global Healthy Living Foundation resources with your managers, coworkers, and HR teams. Some of our resources, including “Migraine In The Workplace: What Employers And Employees Need To Know” can be printed and left in a break room for others to see. If there is a health and wellness group within your workplace, you can suggest that they learn about migraine and share information about it with everyone in the workplace. Hearing about migraine as a serious problem from others may make it easier for anyone in the workplace to talk about it openly. Some companies have affinity groups, and you could start one for people with migraine. If there is a Health and Wellness Fair, you could ask to be a part of it and share information with people. Raising awareness, which we understand not everyone will be able to do, can also make it easier to request accommodations, which are work modifications that may make it less likely that work will provoke migraine attack, and that you will be more able to deal with a migraine attack that does occur at work. These accommodations should be made available to you whether you can participate in education efforts or not. Why? Because it is well recognized that workers who receive what they need from their employer are more productive. Feeling cared for and appreciated by an employer leads to employees who are more engaged with their work, and employees who are highly engaged are more productive. Companies with higher levels of engagement are more profitable. Expressing care is more than a good benefits package, education to reduce stigma, health and wellness programs. It also involves managers checking in on employees personally if they know the employee has a chronic health problem. And according to the Americans with Disabilities Act, it is also the law that companies must make accommodations for workers with migraine and other chronic illnesses, provided that the employee is able to do the core requirements of the job with those accommodations in place. What are the accommodations that work well for people with migraine? Replacing bright fluorescent lights above a desk with softer lighting from a desk lamp, computer monitor screens or blue light blocking glasses can be ordered for people who spend long hours in front of a computer screen. Strong perfumes can be prohibited in a workplace. People with migraine can be seated away from kitchens and break rooms and given preference for quieter offices. Quiet dark rooms can be designated where people can go for a break if they feel a migraine attack coming or are having one. Evidence strongly suggests that the earlier a migraine attack is treated, the more quickly it goes away. If workers can get time in a quiet dark room, they may be able to return to being productive. People can be encouraged to use sick time when they have a migraine attack instead of feeling guilty about doing so. Flexible work hours can be a very important accommodation for people with migraine. When possible, the option to work from home after an attack may increase productivity. Regular breaks to eat, stay hydrated and exercise are also beneficial. Ensuring there are breaks between meetings, especially important now that meetings are often via video conferences that require screen time. Making sure people feel comfortable turning off the video camera instead of making eye contact with the screen may be helpful. Finally, because most working Americans receive our health care benefits from our employers, our employers can act when benefits don’t meet the needs of their employees. In the Migraine In The Workplace Survey, 22% of employees with migraine said that their migraine treatments prescribed by their doctor had been denied by insurance companies. Two out of three human resources professionals said that when employees were denied coverage, the employer would pay for the medicine anyway, something many employees don’t realize. Work is necessary for survival for most people. For many, it is also a source of satisfaction; the pleasure of a job well done, the camaraderie of a team. This shouldn’t be denied to people just because they have migraine. We can all work together to make the workplace better for people with migraine instead. If you need further information on migraine, listen to our audio guide “What Is Migraine” to find out the difference between headache and migraine. How to get diagnosed in our “Migraine Diagnosis” audio guide. For treatment options, refer to our audio guides on “Migraine Medical Options” and “Nonmedical Migraine Therapies.” For more medical information and advice about your own migraine treatment, speak to your doctor.
Behind the Mic
Joseph Coe, MPA
Host
Joseph Coe, the Director of Education and Digital Strategy at the Global Healthy Living Foundation, has been living with migraine since his teens.
As a migraine patient advocate, Joe knows the power of speaking up and being proactive when managing his complex neurological condition.
Through personal conversations with fellow migraine and headache patients, Joe explores the challenges, hopes and triumphs of his guests.
Tune into Talking Head Pain and hear how people like you have found ways to get relief.
Sarah R. Shaw
Co-Host
Sarah Shaw is the Senior Manager of BIPOC Community Outreach at the Global Healthy Living Foundation.
She is committed to patient advocacy and health equity efforts to support Black, Indigenous and People of Color and LGBTQIA+ patient communities.
Sarah has also been living with chronic migraine for almost ten years and is very open about navigating life with her chronic disease journey as well as her experience living with anxiety.
Peter McAllister, M.D.
Neurologist, Medical Expert
Peter McAllister, M.D. Host Neurologist, Medical Expert Dr. McAllister is a board certified neurologist and director of The New England Center for Neurology and Headache. He holds clinical appointments at both Yale University School of Medicine and The Frank H. Netter School of Medicine at Quinnipiac University.
As the former Director of the Headache Center, Concussion Center, and Clinical Research at Associated Neurologists of Southern Connecticut, Dr. McAllister is recognized as a “Top Doc’’ in Connecticut and New York, as well as a “Top Neurologist” by the U.S. News and World Report. He lectures nationally and has been the principle investigator on numerous clinical trials, as well as authored articles in the lay and scientific press.
Dr. McAllister employs a holistic approach to diagnosis and treatment as a practitioner. His area of expertise includes: headache, concussion, Multiple Sclerosis, ADHD, Lyme Disease, and complex neurological conditions.
More Resources
Living with migraine isn’t easy, there’s much to learn about symptoms, management, and treatment. As a non-profit organization dedicated to education, research, and advocacy, GHLF has plenty of free resources available to get you started.
Men with Migraine
Men get migraine too and “maning up” doesn’t make you strong it just prolongs your pain and suffering.
Blue Light and Migraine
Feeling like a vampire? Learn how blue light can trigger migraine.
What Migraine Feels Like
We asked the Chronic Migraine Awareness nonprofit community what migraine feels like. Here’s what they said.
Migraine Patient Guidelines
Vetted by medical experts and people living with migraine disease, our Migraine Patient Guidelines help you navigate your treatment choices for migraine.
Migraine in the Workplace Report
While our survey data suggests that most employers understand migraine to be a common problem, it also suggests some degree of indecision or inaction surrounding effective accommodation and treatment.
Migraine Caregiver Guidelines
Our guidelines educate caregivers about treatment options available to their loved ones to help prevent and manage migraine attacks.
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Talking Head Pain is a podcast series produced by the non-profit Global Healthy Living Foundation.
Through personal conversations with fellow patients and providers hosts Joseph Coe and Sarah Shaw explore the challenges, barriers, and disparities that exist when it comes to migraine and headache disorders.
Past sponsors of Talking Head Pain include: Amgen and AbbVie Canada.
Current sponsor: Lundbeck