“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 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
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 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
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, 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
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
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 w