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.

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.

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.

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

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Narrator  00:00

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

Dr. Dawn Buse  00:10

It’s pretty important that the provider say, “I’m still here with you. I’m not going anywhere.” If someone gets a message that, “Hey, I’m just sending you to a shrink. And you’re out of here because I don’t want to deal with your pain or your migraine.” And that’s a really dismissive stigmatizing thing to say.

Joe Coe  00:28

Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m here today with a really amazing person, Dr. Dawn Buse. She’s the Clinical Professor of Neurology at Albert Einstein College of Medicine in New York City, an Assistant Professor in Clinical Health Psychology, the doctoral program at Ferkauf Graduate School of Psychology, and was the Director of Behavioral Medicine at Montefiore Headache Center. She’s a licensed psychologist, former board member of the American Headache Society, and a current fellow of the American Headache Society. I’m really excited to jump into this conversation with Dr. Buse. So let’s start Dr. Buse. Tell me about what drew you to becoming a clinician and researcher in the field of migraine pain and stress.

Dr. Dawn Buse  01:20

Well, hi, Joe, thank you so much for having me on. I am a fan of your work and a fan of your podcast. So I feel like I’m talking with an amazing person today. So the feelings are mutual. Now, this is a really fun question. Thanks for asking me this. So back when I was a graduate student and an intern Jon Kabat-Zinn had published some work on mindfulness based stress reduction for people with back pain. And I was really excited about that. And as I started to look into mindfulness for pain, I also found Herbert Benson’s work looking at mindfulness and relaxation therapies. And he had actually done some Transcendental Meditation, since the 1970s, for people with cardiac conditions that I started to get really excited about the idea of mind body medicine. So when I was looking for my internships, and my fellowships, focused on pain programs, I got, you know, really fortunate to have training in the Boston area at some amazing hospitals. And I was at Spaulding Rehabilitation Hospital and had two amazing mentors, Elizabeth Loader and Dr. Loader is a former American Headache Society President and Dr. David Biondi. And they just kind of opened up this whole world to me. And then once I got my first job, it was with Dr. Richard Lipton, and that was about 17 years ago now. And I still feel like I’m learning every day. So I’ve been really blessed with amazing mentors, great opportunities, and I just love working with people with migraine and chronic pain. I’ve learned so much from people living with these diseases, and I continue to learn from them every day. It’s an exciting field. And a lot of great things have been going on in the past couple decades. So it’s a great field to be in.

Joe Coe  03:02

I totally agree. And that segues nicely into the topic that I wanted to dive deep into with you today. We know that therapies like Cognitive Behavioral Therapy, or CBT, biofeedback, and relaxation therapies are listed in the American Headache Society’s consensus statement of data supported therapies for migraine prevention. Yet I know and you know, Dr. Buse, that many patients might feel dismissed when offered these modalities that we know could be beneficial. How do practitioners and researchers talk about CBT and similar interventions in a way that affirms and uplifts people that live with chronic disease like migraine?

Dr. Dawn Buse  03:43

Oh, that’s such an important question. I think the way that it’s introduced to someone living with migraine or chronic pain is really important. First, the way you said it was perfect. You said these are therapies with data. And they’re listed in the American Headache Society consensus statement. They’re endorsed by the American Academy of Neurology. They’re endorsed by the American Pain Society. And so I think if if healthcare professionals presented these as data driven therapies, these are therapies that are guideline approved that have evidence for prevention, that might be helpful. Also, if they talked a little bit more about the evidence. So when you go back to the traditional oral preventives for migraine, those would be like the topiramate, the amitriptyline. The rates of the efficacy of those types of therapies are quite similar to the rates of the efficacy of biofeedback or relaxation therapy for prevention and also both about 50%. And also when you combine them, you get this even better outcome. When you combine a medication preventive and behavioral preventive you get even better results, more like a 75% result and it lasts longer. It lasts beyond the time that the medication stops. So I think if they said things like these can be combined, there’s a lot of ways to get to these therapies today. Be it in person, in a group, via an app online, telehealth and that we have evidence that they’re helpful. I think all those things would help. I think also, these are not as easy as taking a medication may be in that they require a lot of time. They require oftentimes, you know, about three months, if you went once a week to about 12 sessions, have maybe 45 minutes to an hour session. Plus they require time in between of practicing, be it practicing CBT exercises, practicing mindfulness, whatever the relaxation practice, whatever practice is given as homework, so they’re a bit labor intensive. And I think that it’d be helpful for healthcare professionals to say,  “This is this is not easy, it’s going to take some time, but you’ve got to work it into your schedule, you’ve got to have some discipline,” just like any of the other lifestyle factors that we know play a role in migraine management, like regular exercise and healthy diet and maintaining a healthy weight. These sounds so easy to say, they are very inexpensive. There’s not side effects. And yet, these are some of the hardest things for any human being to do. You’re human, I’m human, our listeners are human, the doctors are human, believe me, they don’t have an easy time either with sticking to an exercise routine, or practicing mindfulness every other day for three months. These are not easy asks, so they are kind of a big challenge. But the benefits may make them worth it.

Joe Coe  06:20

And what about the emotional aspect that patients might have? I know if I’m in a lot of pain as a migraine patient, and my doctor said, maybe you need to talk to someone, I might get offended, I might think that they’re trying to not give me medication that I might need. How do you balance the emotional impact for those that might not be driven by the data and the evidence that we all know is there?

Dr. Dawn Buse  06:45

Absolutely. So hopefully, knowing that these are in the wheelhouse of the kind of data proven therapies might help someone if they do hear their provider say, “I want you to try biofeedback,” for example. But also, it’s pretty important that the provider say, “I’m adding this into your treatment regimen. I’m still here with you, I’m not going anywhere, we’re going to figure out a treatment plan that incorporates multiple modalities, we’re going to do it together, I’m here for you.” Certainly, Joe, if someone gets the message that, “Hey, I’m just sending you to a shrink. And you’re out of here, because I don’t want to deal with your pain or your migraine.” It implies this, it’s all in your head. And that’s a really dismissive stigmatizing thing to say. And honestly, we know that people with migraine and chronic pain, all sorts of chronic pain conditions, fibromyalgia, and Crohn’s have been stigmatized and dismissed by their health care professionals for the past many centuries. And that may happen today. So people feeling stigmatized and dismissed has a real basis to go on. These have been diseases that have been treated that way. And in some cases, I think, possibly when a healthcare professional didn’t feel like they knew what to do, they didn’t feel like they had treatments to offer, they may be dismissive. So a lot of listeners may have had that happen one or many times already in their treatment journey, and they know exactly what you’re talking about. So a health care professional can kind of bring in different people onto the team, they could stay as the quarterback, but they bring in some new people, you probably know the different players better than I do. But you bring in some new people to your team. And you’re really adding on as opposed to this idea that I’m firing you, I’m letting you go, I’m passing you off to a shrink because I don’t believe you. That’s a very different message. You know, Joe, and if someone feels disrespected or not listened to or stigmatized for their health care professional, I would say move on and find a different health care professional. Ultimately, that’s a relationship. You are both the customer as well as someone in that relationship and you deserve to be respected and listened to.

Joe Coe  07:19

It’s really important. I’m glad that you highlighted that. It’s super impactful for patients to hear clinicians and providers and professionals talk in that way because sometimes we don’t have the luxury of meeting folks like you that get it. And in terms of football, I know what a quarterback is and a kicker because we have a former kicker from college football at GHLF. So I know about kicking and quarterbacking so we probably have the same football knowledge. I want to switch gears a little bit and talk about wellness and migraine. Dr. Buse, when we talked before the recording, we spoke a little bit about my wellness journey as a migraine patient, how it’s impacted my migraine disease for the better. I currently exercise daily either through walking, sometimes a little jogging if I’m feeling a little adventurous or strength training. I got into a healthy range of weight for myself, and I eat a much more balanced and nutrient dense diet. It can seem really overwhelming to make these changes at first and it was for me and I didn’t do them all at the same time. What are some tips that you can provide to people to make these big life shifts easier?

Dr. Dawn Buse  10:00

Well, Joe, congratulations. And that’s not easy. So really well done. That’s wonderful. And you actually already included several different tips in what you just said, you didn’t do it all at the same time. So choose one, maybe maybe two, but choose one kind of life modification to start with, start where you are, it’s really easy to compare ourselves to people who are already running a marathon, and they’re on our Facebook friend list, and we see what they’re doing. And we might feel judgmental, that what we’re doing is not enough. Any place you start is valuable, and is enough. So be gentle with yourself, start where you are, make a small goal. And I like to set goals once a week, and just keep building on him. If you make that goal set a small doable goal, we actually talked about smart goals. So they’re specific, they are measurable, they are acceptable, they’re realistic, and they’re time limited. So let’s talk about exercise. So let’s say someone doesn’t move a lot yet, and has a lot of pain with movement, and maybe is carrying more weight than they want to. And maybe they have joint pain and a whole bunch of reasons that they have kind of stopped moving. And that lessening of movement or exercise in their life didn’t happen overnight. That probably took years. And the moving that around turning that around, it’s also not gonna happen overnight, that’s gonna take some time. So for the first week, it might be something, which may sound simple to some people of walking down to their end of the driveway and picking up their mail and walking back to their house. And some people may say, “Oh, that’s not even worth a goal.” It is, that may be your first goal, whatever it is, and then you’d reassess the end of the week. And either you’d kind of stay with that. If that was too hard, maybe it bring it down a little bit. If you accomplish that, we’re going to bring it up a little bit. So you’re going to adjust it every week. But I don’t want you to judge yourself. Any step you’re making towards a healthier you is absolutely valuable. And I don’t want other people to judge you either. We want to surround ourselves with people who uplift us and support us be they virtual, be they in a podcast, be they in a support group, be they IRL in real life friends and family. We can’t always choose who we’re related to. But we can choose who we kind of share things with and who we spend time with. So you need a group of cheerleaders around you who are gonna say, you know, “Go and you’ve got this,” and maybe even someone to do it with. So having a buddy in these life changes can be really valuable. Someone you trust, it may be a friend, it may be a family worker may be a co worker, or it may be your dog, your dog may be your walking buddy, your dog may be your personal trainer. So maybe your first step towards movement is that every night after dinner, you tell your your partner, your spouse that he or she’s going to do the dishes, because you know Dr. Dawn and Dr. Joe said, “You’ve got to walk with your dog around the block”. And that’s your next step. So in addition to that, you got to make it work in your schedule, it sounds so simple. But if we don’t make time for it, the day flies by every day, and we wonder where did the day go and we don’t have enough hours. So it really needs to be into the schedule. And that’s why I said you know, every night after dinner, or maybe you’re a morning person, so maybe you carve out a little bit of time. And to do that maybe you have to rearrange your family responsibilities, or your childcare or your spouse or your job and say out loud to people, “I am starting to walk. And so I need help with you getting the kids ready to school in the morning, because I’m going to take a walk around the block.” So you started to get more of your family, your co workers, your team on board, make them part of this journey. Give them a high five when you reach your goal, because they helped by taking off your plate whenever you needed. You get a high five, and I just want you to be gentle for yourself. So start where you are. Start low and go slow, build up, surround yourself with supportive people, bring someone in as your partner, and then kind of just keep reassessing as you go. But whatever you do, it’s a value. So just be proud of yourself for everything that you do to move towards that journey. And you should be so proud, Joe. Wow, you accomplished quite a few hard, hard things. Weight loss and exercise are some of the hardest things that humans ever have to do.

Joe Coe  14:16

Yeah, it’s really it’s been a wild trip and two things Dr. Buse that you brought up that I think is so important. Early on, I was working with a friend who was starting a health coaching practice. And the first couple of weeks, she had me just focus on water. And I thought it was kind of silly, I’m like I drink enough water or why do we have to just focus on what I want to do the quote unquote, real work. And we focused on water and one thing that she told me to do, which I thought was so silly in the moment, and now I tell people this all the time was when I drink water to cheers myself, to say cheers you’re doing something good for you by just drinking that water. And I drink a lot more water now and we moved on to different things once we tackled water. And it was a very slow and steady process, like you said, and I increased it as we’ve gone on.

Dr. Dawn Buse  15:07

I love that. So you took that moment to stop, acknowledge and celebrate, I made a good change. Whether you’re high fiving, yourself, or your dog, or your your personal trainer, that you took a moment to say, “Wow, we did this, this is good. On to the next step.” I love that. I think it’s so easy for us to just kind of write off and brush off everything we’re doing that’s going well and everything we accomplished that was hard and focus on the things that aren’t going so well. So yes, focus on what you did what you accomplished and celebrated a little bit.

Joe Coe  15:38

And then the blocking of time to make ourselves a priority. I you know, and I have to acknowledge that I’m very privileged in the sense that I have a workplace that is super accommodating. And I can block out segments of my calendar and say this is what I’m working out. And I treat it like I would a doctor’s appointment. It’s blocked out, I don’t take phone calls, I don’t multitask. I was doing a lot of that at first when I was going on walks. And I was taking conference calls. And someone said you might want to be more in the moment when you’re doing this. And I said that makes sense. So I made it like you said Dr. Buse, a team effort. People on my team, people at GHLF know that when that is blocked out private, that could be a doctor’s appointment, that could be Joe going to the gym, that could be a walk, that could be all of these things. And it makes me such a happier and more productive person to have that flexibility and ability to do that for me.

Dr. Dawn Buse  16:36

I love that you said two more important things in there. You talked about the importance of time management. But you also started with a caveat, you said, “I am privileged that,” and I’m going to say I am privileged that even though I have two young children, they’re in school, and I have childcare help. And I have my parents, their grandparents who live nearby, and I have a supportive partner and duh, duh duh, my list goes on of privilege. All of those things can make these actions easier. And there’s gonna be people listening who don’t have any support, who don’t have be it childcare or eldercare or senior care, who don’t have the privilege right now financially, who may be struggling financially, whose health isn’t at a place where it’s easy to start any of these, who don’t have the social support all those things. So while these things sounds so simple to say, “Yeah, start exercising drink a lot of water,” there are challenges that everyone faces, and we’re not in the same boat. We’re in different boats, some people are in yachts, and some people are in a rowboat with two oars, and some people are in a rowboat with one ore and some people are in a row boat with no oars, we’re in very different places. So we always need to recognize that some of us are privileged to have a bit more support and opportunities that other people may not have. Nonetheless, you and I are still going to try to encourage everyone to figure out ways to make it work in their life the way their life is.

Joe Coe  18:01

And that’s really key. I want to also let the audience know that as I started to get healthy, as society would define health, I was having more attacks. I was getting off of one treatment that was lowering my heart rate a lot, which was making exercise interesting and difficult. I was passing out a lot. And that was also increasing my attacks. I also suspect, and there might be some science behind this, that the even positive things like exercising and doing things that your body isn’t used to when you have a hyper excitable brain and migraine might have been a little funky for me. So I started to get angry and frustrated that like I’m doing all the right things. It’s been for months. Why am I still having all these attacks? Why am I not loving working out? I hear everyone’s like, “Oh, my God, you work out. You feel so good.” I didn’t for a very long time, I do now and I understand that. But it took me a long time to get there. And I really needed to trust my neurologist, my cardiologist, and the fitness coach that I was working with to guide me in that process. Why do you think Dr. Buse, it’s important to view wellness and health as a dynamic journey and not a linear one?

Dr. Dawn Buse  19:15

Wow, Joe, that is a great insight. And I’m so glad you’re sharing this because if you didn’t share this, a listener might go through the same experience and think, “Oh, I’ve totally failed,” or “This is terrible. I shouldn’t even continue this I shouldn’t even started this.” So sharing this experience is really important. Your experience is more common than than just going smoothly in fact, so we can start because many of our listeners may have migraine or other chronic pain conditions or may love somebody with migraine or chronic pain conditions. As you said the nervous system of someone with migraine just loves consistency, everything being the same. So even if it’s not the healthiest of patterns, it’s going to want to stay with that pattern. It’s the pattern it’s used to and any change in any direction seem to be something that can increase migraine activity. So interestingly, when it comes to stress, not only anrise in stress for a prolonged period of time, but a drop in stress may trigger increased activity, less caffeine, more caffeine, less sleep, more sleep, all of these changes, even though we can say, “Okay, well, less stress and less caffeine and more sleep, those are good, those are good, we want to do those things.” Well, the nervous system at first may revolt a little bit and say this is a change. And you may see a little bit more migraine activity. But I and Joe, when it kind of encouraged you to push through that phase and know that in fact, these kind of half a dozen healthy habits that matter really do make a difference in migraine management, they affect the hypothalamus, which is part of the place where migraine attacks get started and get regulated, these do matter. But you’re gonna get a little bit of that hump. And it may feel like two steps forward and one step back, or just maybe like steps back. It sounds like for you, it just was like, “Oh, this is just worse.” So please have faith that scientifically, we know this is the right direction, and kind of move past that. And really the trick in kind of healthy habits, they’re they’re a long game. This is a marathon, this is a lifetime change. So just because we slip up one day or one week, in fact, I feel like we deserve a break one day of the week or one week or the month. You know, for example, say we’re trying to eat healthy and we end up being you know, one cookie out of the box. Well, we just want to say okay, we ate a cookie. And back on track. Nothing is wrong with eating one cookie. But we don’t want to say I’ve totally messed up here, I’m just getting the whole box and add another box and, and type of ice cream because it doesn’t matter. We just want to kind of recognize when those step back happen and just stay on track. And that’s the definition of resilience. Resilience isn’t smooth sailing. Resilience is when you get knocked down, you get back up, and you just have to get up more times than you get knocked down. And people with migraine are good at this. They get knocked down all the time. They had these relentless waves of migraine attacks that never stopped coming migraine unfortunately, is not a curable condition, but it’s much more of a manageable condition than it ever was before. We know more we have better treatments, pharmacologic and non medication treatments, we can manage it better than ever before. But people with migraine are pretty used to this like the challenges keep coming. The waves keep coming. And that’s where I like the the quote by Jon Kabat-Zinn who says you know, “We can’t stop the waves from coming but we can learn how to surf.” So a lot of life with migraine or other chronic illnesses is learning what what how do we make our surfboard, what kind of keeps us going, what is our purpose, our meaning our happiness, our joy, our healthy habits that keep us going. And those are what we need to identify.

Joe Coe  22:47

I love that on so many levels. I had four cookies today, and I feel great about it. Because it’s about like what you make more choices than not. So today, I chose to have four cookies. Most days, I’m not having four cookies. And I had some setbacks recently that really made me think about these breaks. I had COVID in June, so I couldn’t exercise for a little bit. Then I had an appendicitis attack and had surgery and really couldn’t exercise for a bit. And I was like, so nervous that this was going to throw me back to where I was two plus years ago. And the same could be true if we start having really bad migraine attacks, again, that we think that that moment that we have to stop is going to change all of the positive change that we’ve had. And I learned that it’s really a shift and like you said, a marathon and I had to slow down. And it was a really good opportunity for me to explore what it meant to slow down, what it meant to think about this as a long, long game as opposed to, “Okay, well, this is a month,” but you’re right, I didn’t become inactive in one month. I became inactive in 10 years. And I didn’t become active in one month I became active in two plus years. So one month is a big chunk of time, but it’s also not a big chunk of time. So we can we can sit with that and provide space for those feelings. And I think that’s so important to be gentle as you said Dr. Buse, with ourselves. So thank you. Are there any other evidence based wellness practices that you think our audience should know about?

Dr. Dawn Buse  24:22

Yes, so fortunately, they only fall into about half a dozen categories. It’s not a laundry list. We’ve talked quite a bit about Exercise and Movement. Wherever that is, wherever you start just that it’s regular. About every other day, maybe more days than not it is is important to have some movement if you can do everyday some movement that’s great. When it comes to diet and nutrition, you talked about drinking water. That was actually a good place to start. Staying hydrated with healthy hydration is important. We need more hydration than we realize. And for some people dehydration can be a trigger for migraine activity. It might increase more attacks, or it might increase kind of the severity of the attack. So staying hydrated is pretty important as well as a healthy balanced diet. And we’ve heard so much information conflicting about what people with migraine should eat, should avoid. Well, scientifically, it’s looking like it kind of comes down to a low inflammation diet, which means a balance of healthy fats, just lots of natural fruits, veggies unprocessed food. So thinking about a diet that’s a little bit more back to nature and balanced. And it does not have to be difficult or specific, we just kind of stay in the healthier zone, you know, in the grocery store, stay in that outside area where the fruits and vegetables and the unprocessed proteins are and get more of those, then we get to the treats. I mean, I had my pumpkin spice latte this morning. So I’m with you on a little bit of treat makes you happy. That’s okay. But just the balance, you talked about the balance, Joe, and it all comes down to balance and portions. Social support is really important to getting through with any chronic disease or any challenge in life. And as I said, we can’t always pick who we’re related to. But we can pick kind of who we share with who we spend more time with. And we can create family support and friends support out of our communities. And you’ve created an amazing migraine community and other really supportive migraine committees exist around the world, across the country, there’s a lot of places to reach out and find people who are like minded and supportive, or it may not be in a migraine group, it may be another group of people who want to start moving and exercising or other kinds of stress management approaches, or kind of connect to your passion. What is your passion that has nothing to do with any of this? What brings you joy? What do you care about? Do you have a hobby? Do you have a devotional activity you care about? Do you have a volunteer activity you care about? Getting outside of ourselves and focusing on others, even when we’re having a rough go of it actually can be really therapeutic. So that support and kind of focus on what brings you joy, and then stress management. And that can come in so many shapes and forms. And unfortunately, we can’t control what happens to us a lot of the times we can only control how we react to it. But it’s that how we react to it that’s what gets our physiology going. It’s what it means to us it gets our fight or flight response. And how quickly do we counteract that be it breathing, be it refocusing, be it exercise, be it biofeedback, meditation and taking a walk with our dog, cooking in the kitchen spending time with friends, looking at the ocean, whatever it is for you, that kind of calms your nervous system brings it back down. That’s important. So these are the areas to think about that the nervous system really does well with; consistency and those basic healthy habits, which it sounds so easy, they’re not so easy. And you’ve shared some really good strategies, Joe, for kind of navigating that path. But those things do matter. And even if you are taking medication, a daily medication or an as needed medication or using neurostimulation, these will actually get a better result from all of those when we’ve got these things lined up.

Joe Coe  28:15

I think it’s so important for people, people to hear that. I don’t think people hear that enough that your medication might or probably will work better if you’re doing these other things. That is, it makes sense. But we don’t hear it a lot. I take a medication when I have an attack prescription and I’m on a prevention medication. I’m still on those while I’m like super healthy, because I need them. Like you said, it’s not you’re not cured from migraine, because you’re doing all these things. Some people might be, not cured but in remission, for lack of a better word. Something that we both talked about in different ways that I want to highlight as a concept was habit bundling. So you talked about how you would recommend or give a tip to someone to go for a walk after dinner, something that you’re already doing and bundling like one of these positive activities is a way that I have found to be really helpful. It’s one of the ways that I increased water initially. I would wake up and I would drink I would keep water right by my bed. And I would wake up and I would have 30 ounces of water and then I would go brush my teeth. So brushing my teeth was the habit that you had, and drinking the water was wasn’t the habit but I connected the two and now it’s like before I go to bed if I’m like I need my bottle of water next to my bed. It’s like I can’t I don’t feel settled if I don’t have my bottle of water next to my bed. And now I wake up and I have 30 Something ounces of water a day, which is like a great way to kickstart start it so I think that those things I tell people like figure out what works for you. What works within your life. We all are doing things on a repetitive motion. We’re all eating dinner at some point we’re all brushing our teeth are all going to work if we’re able to work if we’re, you know, not on disability or retired. There are things that we can do that connect to other things that make these lifestyle shifts a little bit easier.

Dr. Dawn Buse  30:13

I love that those are really good suggestions. Those are really, really good ideas. And thank you again for highlighting the fact that these healthy habits are not only going to help you kind of generally feel better help your body function better is you may get better results from any treatment when you’ve got these underway, and I actually didn’t mention sleep, and sleep. Getting regular restorative sleep is really really important to all functioning. Again, this may not be easy for so many reasons you may wake with pain, you may have small children at home, you may work a different shift, you may live in an area with noise and light outside. There’s so many reasons this is not easy. But think about where you are, think about what you can do, any tweaks you can do to prioritize getting restorative sleep and trying to stay on a schedule as much as you can. Given all the aspects of your life is also valuable.

Joe Coe  31:11

There’s so much we could talk about. But this is our last question thinking about future research, what are you most excited about?

Dr. Dawn Buse  31:19

This has been an amazing decade in our understanding and treatment of migraine. So if we go back to the Egyptian hieroglyphs which have migraine in them and aura and the idea of treating people with an electric eel to the head, which has really come full circle with neurostimulation, we have come so far in what we know in just the past 10 years. This is a really, really good time to feel optimistic for people living with migraine, or people who care about people living with migraine, you may have children with migraine, you may have a partner with migraine, you may just worry for the good of humanity with 1 billion people with migraine around the world. So we’re learning a lot about kind of the scientific aspect, like what neurotransmitters are involved in genes. And we’re learning a lot about the social aspect. We have recently done some really big studies of stigma. In fact, in our overcome study, we surveyed 60,000 people with migraine and 100,000 people without migraine, to find out how they felt about people with migraine. And we have some amazing new stigma data that we should talk about sometime soon. So we’re coming at it from every angle. And for people who have not gotten benefit from the newest treatments, because there are people who have tried everything new and still didn’t work for them, and my heart aches for them, no one has given up on you. So scientifically, we’re still working on new targets for treatments. So going beyond CGRP to the next neurotransmitter the next molecule. We are still working on treatment matching, like looking at genetics, looking at comorbidities, looking at all sorts of factors of the individual to create this what we call a phenotype, meaning we put together a bunch of these variables and we say okay, this person may benefit from this. So no one has given up. Everyone working in migraine is really excited from the doctors to the scientist to the patient advocates. And we’re going to see more and more understandings, treatments and better outcomes coming down the pike. So it’s just a good time for people with migraine. And there are so many reasons to be optimistic and hopeful and excited about the future right now.

Joe Coe  33:29

I so agree. And I’m definitely hopeful. And this conversation also provides a lot of hope. And I really appreciate your caring, compassionate approach to talking about research, which can feel very cold and not connected to people. Often as a patient research can seem scary. So you really demystified a lot of that, and it was a really robust discussion. Thank you so much for joining me today.

Dr. Dawn Buse  33:58

Thank you, Joe. And I think what you do sharing your experience with listeners is really, really important because a big part of stigma is feeling alone or that you’re the only one or that you’re a loser. “Why don’t I ever, why does it never work for me?” And by saying, “Oh, this is what happened to me when I started my wellness journey,” or,  “this is what I experienced.” People realize they’re not alone and there’s great comfort in that. It gives you a roadmap and a path to feel confident that you’re kind of on the right path. So thank you for all the important work that you do.

Joe Coe  34:32

Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe and I will see you next time.

Narrator  34:48

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

Narrator  00:00

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

Beth Morton  00:09

Friends and family, co-workers can have the best intentions and think they get it but it’s very different talking to someone else who has migraine and getting that sense of support and understanding.

Joe Coe  00:20

Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m here today with Beth Morton. She’s a researcher, an activist, a migraine advocate, and the person who started Migraine Chat. I’m really excited to talk to Beth to learn about her journey and why she got involved in all these fun things. Hey, Beth, how are you doing today?

Beth Morton  00:52

Hey Joe, thank you for having me on. I’m doing all right. How are you?

Joe Coe  00:55

I’m great. So let’s just jump in. There’s something that I like to ask all of our guests. Can you describe for the audience what your worst migraine attack was like? What went through your head? What did you feel and think?

01:07

Probably my worst attack happened about two to three summers ago. I live with symptoms every day, they tend to become sort of what I would call full blown migraine attacks about two to three times a week. And then occasionally, I just get these ones that sideline me. And this one I very much remember because, you know, they tell you if you’re having the worst head pain of your life that’s a sign to go to the ER, and I was like this close. But I remember it sort of hit at night. And I don’t recall at this point, if it was because of you know, sort of triggers stacking up or if it was just one of those ones where there’s just no good explanation, and they just come out of nowhere and you’ve done what you can and still get hit hard. The reason I remember it is because when I when I know it’s going to be a bad migraine attack when I start to get allodynia, that’s not a common symptom for me, it is for others. But for me, if I start to get allodynia on my scalp, or if I get this, if the head pain moves to the back of my head, and it feels like every time I moved my head, there’s this intense throbbing or laying down on a pillow is excruciating. that’s those are my warning signs. And this one, this one ticked all those boxes, and I just remember I spent most of the night sitting on my couch kind of just rocking back and forth in tears or near tears. And I’m lucky that my doctor has prescribed me some of the same treatments that you would get if you would go to the ER and I can can use at home to keep me from going to the ER so you know I took this was one where it took a couple of rounds before it finally kicked in died down. I could sleep, I could lay on the pillow. I could sleep that sort of sleep is an escape for me. I can I usually can sleep even with with pain and it finally broke. But yeah, it is memorable. For that reason I remember just you know, the the question of you know, is this something different? This is really bad, what should I do, but you’re also in that really panicky state of, of high pain. And I remember, or at least I was I remember sitting and just rocking and just trying to distract myself in any way I could giveen almost everything hurt or to do anything hurt.

Joe Coe  03:22

That panic feeling is something that I think a lot of us have faced, hearing your story made me remember a strange attack that I had while I was on a walk. And I got super disoriented, and confused. And that wasn’t a normal symptom for me. I ended up taking a Lyft to an emergency room because I was nervous and obviously couldn’t drive. It ended up being nothing, which was great. But you know, it’s disturbing when you have this new symptom. Can you explain what allodynia is for folks that might not know that?

03:57

Yeah, so that’s kind of a fairly a technical term. And to describe it, it’s when when touch is painful and it’s touched that shouldn’t be painful. So most people tend to get it on their head, face, sort of above their neck. But it’s not unheard of to get allodynia on other parts of your body. And I think that’s something that that’s something that comes up when I talk with others to get that validation of, “Oh, it hurts when I touch you know other parts of my body too.” So either they don’t know that allodynia is a thing that’s connected to migraine. You know, it hurts when you brush it when you brush my hair, hurts when I lay on the pillow, or they’ve only heard about it being affecting the head, face. And so when they’re like, “Oh it hurts when I wear a scratchy t-shirt,” you know they’re getting that validation that yeah, that’s maybe not the most common presentation but it happens and it is still part of migraine. You know, it’s it reduces that kind of panicky feeling of is this something else, is this something new? So, yeah, giving it a name having people understand it’s part of migraine because, a lot of times it’s a lightbulb moment for people I think.

Joe Coe  05:03

Agree, that happened to me once and I remember it very vividly, the water from a shower hurt my scalp. Just the gentle pressure of the water. It was so intense. I couldn’t take a shower. And I let the neurologists know and they’re like, this is something that happens to people with migraine. Fortunately, it’s only happened once, knock on wood. But it’s a really strange feeling. You get shocked, like, water can hurt. And who would think that the pressure of water drops on your head could could cause pain. So when I think of migraine advocacy, Beth Morton is one of the people I think of. What drew you to migraine advocacy, Beth?

05:45

You know, I think it was sort of accidental, sort of the quick backstory of, of Beth is I have had migraine for 20 plus years like you as well. About six, seven years ago now, I was finishing my PhD and my attacks started. I sort of had this perfect storm of everything they warn you about being risk factors for migraine turning from, you know, episodic a few times a month to chronic, you know, more than half of the month. I had a lot of the risk factors pile up on me at once. I was finishing my PhD, was in the last year of school. And despite having some of the best doctors available to me, nothing really slowed the progression. And to this day, I’m still kind of struggling to find the right treatment mix. So I ended up, I finished school, but I could not keep my full time job and I couldn’t stay living in the city I was living in. So I moved back to Vermont and I kind of floundered for a year. So I spent a lot of that time setting up new doctors, new health care team, frantically still trying to explore treatments I hadn’t tried getting access to them. And I guess the reason I say sort of accidentally fell into advocacy was, it was first a lot of self advocacy. I think that’s probably how a lot of us start. And I think a lot of us also start in these periods where things are getting worse. And we suddenly realize like migraine is having a disabling impact on our lives. And that’s probably why so many of the migraine advocates are like us who have, you know, high episodic migraine, or chronic migraine. And what I learned, I guess was that it takes a lot of effort to even be a self advocate. And so as I was learning things, I was drawing on some of the skills I had learned, as a student, some of my research background was coming in really handy in understanding new treatment, research on new treatments and, and even trying to figure out what was reliable information. You get hit from with information from all directions. And so trying to kind of screen that and make sure you’re only or you’re paying most attention to the reliable information. I learned that it takes a lot of time, it takes some skill. Other people for various reasons may not have that. And so have that time, have that energy. And I wanted to not let all the self advocacy I was doing go to waste, basically to get your answer. And so I started a blog, I started spending a lot of time on Twitter, too much time on Twitter, and I was trying to share the information that I was learning with others, because it kind of going back to the thing of like, what is allodynia. As I was learning these things, and learning these things are part of migraine, I realized, maybe other people don’t know either. And so if I can kind of make the learning curve, shorter for people or easier for people of how to find treatments. That was kind of how I started doing advocacy outside of things I needed to kind of do for myself. And I also kind of got connected with a lot of the organizations in the migraine nonprofit space, and eventually realized I could still use some of my skills to do more formal work. So trying to help some of the migraine organizations with their research needs. So it was it was sort of advocacy for just spreading information and advocacy in a more formal way of getting involved with some of these organizations.

Joe Coe  09:04

So Beth, speaking of advocacy, you started this amazing social media space called  #MigraineChat that happens on Twitter, but I also see that it’s on Instagram and likely other platforms that I don’t even know about. What have you learned hosting that and doing that and what have been some of the special things that have come from that chat?

09:26

Yeah, well, I have to I have to give credit, there was a Migrant Chat years ago, and the person who was who had been running it just when I went when I landed on Twitter and start spending all the time there, it wasn’t active and I saw other chats like CreakyChats and Spoonie Chat and I checked with the person who had been running it and she was happy for me to take it over because I felt like it was, it would be a good way to for people to connect over questions or needs for support that they might have around migraine. Yeah, I guess so. It’s been maybe three years, I don’t even know,  I’ve lost track of how long my Migraine Chat has been going on Twitter, but it has grown. So, Migraine Chat is a monthly chat on Twitter, I post questions and and people can just join in live or after and answer the questions. And we’ve spun off a more private Discord space for Migraine Chat. So if people aren’t comfortable or don’t spend as much time on Twitter, or don’t want to ask questions that are so public, they can join the Discord group. And I think what I learned most from doing it is that validation piece, and ironically, we just had a chat on validation and why it’s so important, because I think it’s that it’s like we’ve talked about, it’s understanding that things that you may, you may have this idea of what migraine is in your head, and then and then experience it differently than that and just need validation of yes, this is still normal this, this still happens to people. I think it is just recognizing or having that reassurance that something, even if it feels wrong, it’s still part of you know, it’s still part of migraine. So it’s not an abnormal thing. It’s not anything to worry about. For the people who have questions about things like symptoms, or medications or side effects. There’s also just the validation of just needing support, just needing to vent, just needing to say like, this is really crappy. And does anyone else go through this and just getting the like, sort of virtual hugs back kind of thing. So I think the validation is really important, the connecting with others, you know, I’ve made friends through through Twitter through Migraine Chat that I talk with now offline and have met in person. So these are real connections people are making. And I think, given some of what’s come out recently about proposing some of the people on social media are doing it for attention or doing it for the monetary gain, you know, that’s just so wrong. And to hear that is so and that that is invalidating. We do it to make connections, we do it to advocate for ourselves, we do it to, you know, Migraine Chat is for that spreading of information and hopefully spreading reliable information, because there’s so much out there to sift through.

Beth Morton  09:31

What I love about Migraine Chat, in addition to everything that you said, Beth is, is that it’s a space that’s ongoing. So you have the monthly discussions, but I see that people engage with that support, with that structure of Migraine Chat throughout the month. What like, as you said, when they have a question, or there’s a new symptom, or they’re trying to medication or they’re trying to explain their disease to someone that doesn’t get it, it’s just really, really nice to witness that. And I kind of lurk, I don’t engage often, I do sometimes. But it’s it’s really beautiful to see that space happening and what you and others have cultivated. So I thank you as a part of this community for doing that. This leads into our next question, which is an important one, we hear a lot that social media is bad, that it’s toxic, that it creates a lot of issues for folks, all of those things are true. There’s also a really good side to social media. How have you use social media for good to help people living with migraine? I hope I’m using it for good. I mean, that’s a it’s hard for me to judge. I mean hearing I thank you for the kind words, I think giving that space to others with migraine just to connect and to share information and ask questions and get support from people who really get it because, you know, friends and family co workers can have the best intentions and think they get it but they really unless they live with migraine, it’s really hard to understand it’s really hard even for some you know, it’s it’s very different talking to someone else who has migraine and getting that sense of support and understanding. So I think that is my main goal. And I try to use it for good and making those connections. And I do because of sort of my background in research. I do try to also use Migraine Chat as a way to counter some of the misinformation that’s out there about migraine. Sometimes I will just sort of search the just the migraine hashtag on Twitter and it’s amazing what you come across of just bad information out there or people who are targeting people with migraine in bad faith because they say they have a cure. So you know, there is no cure for migraine. We can there are some treatments that work better than others and people may go into remission, but it’s I try to help people not get swept up in ease. If it’s if it’s too good to be true. It probably is kind of thing. So sharing information that I feel is reliable from reliable sources, I think that’s sort of the other angle I take in using social media for good.

Joe Coe  15:05

I’m sure doing this work on social, you’ve come across some really inspiring messages and tweets and Instagram DMs. And I’m also sure on the flip side, you’ve probably have gotten a lot of negative and nasty and troublesome ones. What are some of the most powerful tweets that you’ve received? And what are some of the most troublesome?

Beth Morton  15:28

I’m gonna blame migraine brain fog, because thinking of really specific ones, now they come and they go, like in disappears. I just My memory is a siv. So that’s it. I think in general, some of the most inspiring or, or ones that make me feel good about what I’m doing with Migraine Chat are the ones where people have those lightbulb moments. And they and they take something they’ve they just sort of upfront state that they’ve learned something from Migraine Chat, they they talk to their doctor about a new treatment, or they realize they could even see a headache specialist that those exist or made some other type of connection through Migraine Chats. So those tend to be kind of the most affirming that I am doing something good. But also just seeing Migraine Chat, the hashtag used in the wild, where I haven’t I didn’t tweet something or somebody didn’t ask a specific question. They just tagged it because they came across it. They maybe don’t even follow me. It’s that’s like, oh, okay, so it’s it is getting out there. So those kinds of things are affirming. Most troublesome? There’s are two camps of troublesome. There’s the people who are very much like me, where they’ve, they have high frequency symptoms, they’ve tried everything, you know, you talk to them as much as you can through Twitter and kind of learn they’ve really tried as much as I, you know, I’ve tried, I feel like I’ve tried everything I can pretty much and I try things as soon as they come out. And I see a headache specialist and I’m doing all of the non pharma things, and I still have high frequency migraine attacks. So when I talk to someone else like me, and they’re reaching out for help, I think what’s troublesome about it is I feel like I can’t help them. The best I can do is just give them a space and bring them into the community if possible, if that’s if that’s helpful to them. So I think it can be hard when it’s, and it’s the same as when we go to a doctor’s, when you get that sense of you’re running out of things to try. And there’s always more to try. But it’s harder when somebody’s is sort of in a similar situation as me. The other troublesome ones are just ones that are just when I see, and these not they aren’t always directed to me, but but tweets that just get migraine wrong, or are stigmatizing or invalidating or, and it’s hard enough when it comes from outside the community. Or, or people who are trying to sort of take advantage of people other people with migraine but thinking of sort of a recent occurrence, when even within the disability chronic illness community when there’s when migraine is used as like an excuse or an example or it feels like people with migraine are thrown under the bus as a sort of a quick fix to what are some really big systemic issues around disability and chronic illness and accommodations and stigma and it’s really hard when you see other people who should should know better not taking migraine as seriously as it should be, I guess to put it nicely.

Joe Coe  18:47

So in other words, when someone would say that you should fake having a migraine attack to get a accommodation that you should get for other reasons.

Beth Morton  18:57

Right.

Joe Coe  18:59

And what is due to the community.

Beth Morton  19:01

On one level, I understand that type of example you know, when when your backs up against a wall and you need to protect yourself or your family, I understand wanting to kind of circumvent the system that is stacked against us. But when it when I see migraine used as you know, you know fake a migraine and get around the system, that does a disservice to those of us with migraine who are legitimately trying to get accommodations or disability benefits and that is extremely hard. Those types of accommodations or benefits are really hard to get with migraine because of the stigma, the historical stigma, the misunderstanding, the belief, it’s just a headache, that it’s not serious, or just this underlying idea that you know, it’s easy to fake or for any of us who have tried to work with with migraine with frequent migraine especially.You learn pretty quickly that it’s it’s there are multiple steps to getting accommodations or getting disability getting doctors to be on your side, getting your employer or the government to believe that it’s as disabling as it truly is. And so there are organizations that are doing enormous amounts of work to try and counteract these barriers. And, and it’s hard to see others in the, in the community undermining that, I guess.

Joe Coe  20:30

And even those of us and I would be in this camp that wouldn’t have been as open in the past to even ask for an accommodation or at previous places that I’ve worked, or use things that could help me like, I have a pair of glasses that work really well, for me, and but they have a very funky to me looking tint. So when you wear them, you can’t like I’ve gotten, “Oh, are you trying to be like Bono?” You know, out in the world not at work. But I think about like, do I internalize some of this stigma and portrayed or perceived weakness. And that’s why I’m not using these assistive devices that might help more, because I should use them more. They work really well for me. But it doesn’t make it easier when we hear that it’s just so easy to get these accommodations. I know through Talking Head Pain and the work that we do at GHLF how challenging it is, for patients to be heard by their employers, for people to get disability. I spoke to someone on Talking Head Pain that talked about that whole process and how it was like really demoralizing and challenging. And I think because of the way our disease is. You don’t see a broken bone, there is no definitive test that could say you have migraine. So it’s very complicated. And I think you’re doing amazing work, demystifying some of these really complicated and charged topics, and always in such a caring, and empathetic way, which is why I appreciate the work that you do, Beth, and that you took the time today to use some of your energy that I know is a limited resource with us all to talk with me in our and our audience. So thank you so much, Beth.

Beth Morton  22:26

Thank you. Thanks, Joe. Thanks for having me.

Joe Coe  22:29

Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.

Narrator  22:45

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

Narrator  00:00

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

Yuri Cárdenas  00:10

The day I knew things were different with my migraine and my career was over when I was laying on the office bathroom floor.

Joe Coe  00:20

Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m really excited to be joined today by my friend, Yuri. They are the founder of Migraine Talk, an Instagram account that helps provide support for people living with migraine. They’ve had a really interesting career in educational design and interactive media. So we’re gonna get into all of that too. But before we start, Yuri, how are you feeling today?

Yuri Cárdenas  00:52

Thank you. I’m excited to be on here. I am, surprisingly, not in an attack at the moment. But I do feel it coming. So maybe a little brain fuzz.

Joe Coe  01:04

Well, that’s good. We hope that this will help abort the attack. Talking about migraine attacks, what is your worst migraine attack like? Can you explain it to our audience what you felt and what went through your head?

Yuri Cárdenas  01:17

Well, I’d have to introduce you to Suzanne, she is the aunt no one wants around. She is my high pain, extreme attacks, absolutely impossible to ignore. If I don’t find medication to manage Suzanne, she gets worse and louder. I’m basically in cold sweats, searing pain, vomiting, each moment stretches out horrendously to the next one. If I don’t find medication to manage Suzanne, it’s like the world feels like it’s never going to end. I employ everything. I can think of; calming breaths, assistive devices, mindfulness, but it’s agony. I don’t know if this is too much for our audience, but I’m usually stripped down naked in the bathroom, thanks to hot and cold flashes. And I just repeat to myself over and over, “This too shall pass.”

Joe Coe  02:10

So you, Yuri, when you started talking, I was like, “Who is Suzanne? And what did she do to her?” But now I know Suzanne is is your migraine. And that’s a really interesting way to put it that that person that just won’t go away. Comes unannounced to the dinner party.

Yuri Cárdenas  02:28

Exactly. Actually, Hal is my typical attack. He’s lurking all the time. He’s super needy. He’s with me 24/7. And if I don’t pay attention to Hal, then he likes to put on his outfit, and he becomes Suzanne, and Suzanne, I just won’t tolerate.

Joe Coe  02:49

Yes, Suzanne needs to go, Hal it needs to go. They both need to just leave. That’s so interesting. I had let me not even say I share too much sometimes on Talking Head Pain. We’ll talk after. I like to tease that I have an interesting life. So you had a really interesting career and migraine journey. And your migraine attacks and migraine disease has really impacted your career. You worked as a producer of interactive media. Can you talk about your former employment and how migraine took that away from you?

Yuri Cárdenas  03:27

Absolutely. Yeah, I had a career as a producer for 15 years. So I was really passionate about it. I worked on started in websites in the 90s and then moved on to interactive toys for children of all ages, and then adults and then interactive installations.  Unfortunately, the last job I had I started transforming into chronic migraine from lifelong episodic migraine. And it was honestly really hard. I was in a high stress career coupled by working for a typical corporation that doesn’t look out for their employees, unfortunately. I was also finally creating my first interactive art installation on the side. But what I didn’t know was that I was transforming to chronic at that point. So I had like the CEO using me as an example, chastising me for trying to work from home which was probably one of the worst things for my migraine disease. This was way before the pandemic. And I didn’t know a lot about migraine at that point, but I knew light affected me and they wouldn’t change the lighting. When Suzanne came around, my worst attack, I tried taking breaks and lying down in a dark office but my over the counter meds stopped working. The day I knew things were different with my migraine and my career was over when I was laying on the office bathroom floor. I was humiliated having people walk in and out see me like that, but I was just in too much pain to move. I’m sure most listeners know every micro move when you’re In the worst attacks bring on brings on more pain. And that trip home, walking down the street to public transit, barely able to see is something I will never forget.

Joe Coe  05:09

Do you remember what the next day was like, for you?

Yuri Cárdenas  05:14

I don’t this was nine years ago. But I imagine I was super out of it. And just like I said, humiliated and scared for my future, not really knowing. I didn’t have a headache specialist than. I didn’t know what was happening, or how it was gonna get better.

Joe Coe  05:33

From that attack until you had to stop working, what was the timeframe?

Yuri Cárdenas  05:38

It was probably a couple of months, I would say. It stretched out a little bit. But HR was pretty quick to be like, “You know what, you should go on family medical leave,” which was like a year, I believe, a year of medical leave, and really get this checked out. And I was losing it for lack of a better word at that point, too. I mean, I was just so stressed and unsure of what was happening in my body that I was like, “Okay, let’s do that.”

Joe Coe  06:07

How long did it take you to find a neurologist or headache specialists that was able to begin to help you?

Yuri Cárdenas  06:14

That was another journey, I knew enough to go to a doctor right away. I knew right away when over the counter medication wasn’t working anymore. But I went through several doctors before I was referred to a neurologist, that neurologist should have retired. And it took me I think, another year before I got a headache specialist, so all up probably a year and a half, including like a lot of proactive doctor’s appointments and trying treatments throughout that time.

Joe Coe  06:49

So Yuri, do you think that if you had quicker access to providers that understood migraine disease better, you might still be working today?

Yuri Cárdenas  06:58

I wonder about that a lot, especially now nine years out, I really look back at that time when I transformed and knowing how stress affects potential transformation and not having like abortive options, prescription abortive options specifically for migraine. I think having the knowledge, yeah, I think absolutely having the knowledge of a doctor who could really speak to me and give me the treatments that might have helped. Yeah, I think there is a chance that it wouldn’t have gotten as bad as it has.

Joe Coe  07:31

I think that’s important for our audience to hear. Because I think a lot of people and I was episodic for a very long time. And I didn’t think about this either that you’re if you’re not treating your episodic attacks correctly, or as aggressively as you might be able to, it could lead research indicates to a chronification of migraine, which has a greater disease burden, and all the things that you’re discussing, Yuri, so hopefully someone can get advice from, from your story now that we have newer treatments, and we have a little bit more awareness to not settle.

Yuri Cárdenas  08:06

I hope so too. I think it’s a huge point. I’m so glad you brought it up.

Joe Coe  08:11

So we started to talk about your current life and what that looks like. You’re currently on disability, what has that been like, navigating disability in this day and age as a relatively young person?

Yuri Cárdenas  08:27

I’d love to say it was easy, no problem. It’s the best! But couldn’t be further from that, unfortunately. I thought not having to work would help me heal. But the reality of disability income is that I never know when my income is going to be taken away. And this takes away from a basic sense of safety. Migraine is not on Social Security Disabilities list of disabling conditions, which is wild and must change. I had to stand in front of a federal judge twice. It took five years to get SSDI and I have heard of people getting it right away. But I think it is because of my quote unquote young age when I became chronic, maybe maybe it was the state I live in. I don’t know but no one should have to go through this.

Joe Coe  09:20

We agree. Did you do it on your own or with help from attorneys or other folks?

Yuri Cárdenas  09:26

I did get an attorney to help. I like to complete paperwork. It’s weird, but I like to fill in the boxes. I feel, you know, I am educated. I did work professionally. But when I realized how long it was taking, I definitely employed help. I had to spend a year without any income waiting to see if I would get approved. I ended up in really bad housing situations. I had to crash on people’s floors at one point. And then another year, they stopped my income entirely so I have had to pay for lawyers. And something I want to point out sorry, I, I get passionate about this, but just want everyone to understand like they surveillance you, I’ve seen records of people sitting outside of my home, you lose any sense of privacy. My therapy notes are read by who knows how many people, and I can’t be myself fully in the world without risking my income. My lawyers have told me writing about migraine or having a public social media account is risky. Even being on this podcast could jeopardize my income.

Joe Coe  10:31

Oh, I knew it was bad. I didn’t realize it was that bad. That’s really intense. And all those things that you’re talking about from pre disability to getting disability, it sounds like none of those things really help us feel better, crashing on people’s floors and couches and having housing insecurity and income insecurity. I would imagine, we don’t need research to tell us that that can contribute to migraine.

Yuri Cárdenas  11:01

I also wonder, you know, if if that period when I went chronic had gone differently, but also as I was, in the early years of being chronic having to deal with this really serious anxiety and depression producing issues that also didn’t help my migraine, if that has made everything worse.

Joe Coe  11:20

So you have taken this really horrible experience in multiple ways living with migraine, having to navigate a system that’s unfair, and you’re doing something positive with it, which is really nice. You don’t have to do that with your limited energy. We appreciate it, or I know our listeners do, I do you run an Instagram account called Migraine Talk, can you share what inspired you to do that and why you feel it’s important to have a platform like that?

Yuri Cárdenas  11:53

Of course. Thank you for saying that, you know, I never know if it is actually helpful. I hope so. And I think for me, the whole time I’ve been struggling through migraine disease and the US health care system, I think about all the other people who don’t have the education or language skills, or the ability to persist to fight for their care, and it breaks my heart. And what’s really helped me move forward over these years has been thinking that what I’m going through can help someone else to not have to go through it. I felt moved to, I’d spent years on Facebook groups kind of offering support and getting support. And I thought why not on Instagram. And another thing that happened when I looked on Instagram for migraine accounts is that I didn’t really see people that looked like me or reflected my struggles. So it inspired me even more to be a voice for everyone like me in the community.

Joe Coe  12:51

So why is community important, Yuri, for people that live with migraine, especially those that are part of the BIPOC community?

Yuri Cárdenas  13:00

I truly believe we can’t get through any of this alone. Humans are herd animals, we rely on other people for survival. But beyond survival, social support is like an irreplaceable piece of the treatment pie for mental health, and for migraine health. I think we really need especially with this highly stigmatized and confusing disease, having other people and it’s an isolating disease. So having other people who get it, or who can help you figure out how to communicate about it, I think is huge. And then if you add on top of that, all of the systemic racism that people of the global majority have to endure in the US and the lack of representation by various migraine organizations. I mean, I just think it comes back to community, I think we’re all in this together. And I think trying to imagine us as an individualistic society is part of what makes us sick. So I think the only way to heal is with each other.

Joe Coe  14:06

Is there anything that I didn’t ask that you would like me to ask?

Yuri Cárdenas  14:11

I guess talking about being queer, but I don’t know it all rolled in together. There’s not really more to say other than like, yeah, just dealing with like, otherism. You know, we need community to handle that.

Joe Coe  14:23

Yeah, I felt like, I was always an activist in the LGBT community. And I never felt connected to the migraine community, was something that I lived with since I was a kid, but it was just always there. And it wasn’t I didn’t see it as part of my identity. And I didn’t see how it was like inter weaving. And now there’s research about how trauma impacts migraine and all this when when you’re queer and part of the LGBT community. And I didn’t I wouldn’t have seeked out information. Because it wasn’t for me. It wasn’t marketed to me it wasn’t made for me. And that’s something that we try to do on this podcast and at GHLF, is like think about where the resources aren’t being directed and who isn’t being reached and we look to cast that wide net, which is really special and it really makes me feel good about the work that we do. Yuri, thank you so much for taking time out of your day, as a disabled person with migraine, I know that that is a lot of energy and I value your your time spent with me today. So thank you so much.

Yuri Cárdenas  15:40

Thank you so much for having me. It’s been really fun. Thank you.

Joe Coe  15:45

Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.

Narrator  16:01

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

Narrator  00:00

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

Matthew Kloiber  00:09

So I started this plant based diet it wasn’t the healthiest, but it was still considered plant based. I think I went maybe six months without a migraine.

Joe Coe  00:19

Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe,  Director of Education and Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. Today, I’m joined with Matt Kloiber. I came across Matt in an online migraine support group. Whenever I see men in those groups, I pay close attention because I rarely see guys post. So when Matt did, and it was about diet, and generated hundreds of comments, I said to myself, “I really want to learn more about this guy and his story,” and be open to perspective that I may not have considered. I hope you’ll listen to his perspective and story with an open mind and heart. And know that he shared and is sharing his story because he wants to help others. Please note that Matt is speaking from his personal experience and his own opinion, nothing we discussed here today should be considered medical advice. Please make sure that you discuss all diets and medications with your healthcare provider. Hi, Matt, welcome to Talking head Pain. Can you tell us a little bit about yourself?

01:23

Yeah, so my name is Matt Kloiber. I am 34. And I am married, have two kids, work full time, go to school at Oklahoma State online, and dealt with migraines my entire life, as far as I can remember at least, and had been taking prescription medication for them practically my entire life. And just kind of recently, I think is one of the reasons why you you asked me to be on the show was I had some success, just with a diet change that was able to I don’t want to say cure it. But I mean, it definitely reduced the amount that I’ve had, so.

Joe Coe  01:59

Can you tell us what your worst migraine attack was like, Matt?

02:03

So there’s actually one just kind of recently. So I just got back from vacation, I was off my diet just a little bit. Me and my wife were spending some time in Florida on the beach. And so, you know, I had some things that I hadn’t had in months. Last week, I probably had the worst headache, one of the worst ones I’ve ever had. Where I’m usually I don’t, you know, end up throwing up. But this time, it actually made me vomit. And typically the only the really bad ones for me, that’s the only time that happens. But there have been times a lot you know where I’ll be at work and you can feel a migraine coming on, then you just have to leave because you know, you’re gonna be almost useless if you stay if you stay at work.

Joe Coe  02:42

As a man with migraine, we aren’t often seen or portrayed on commercials or we think about migraine education. Did you get diagnosed quickly? And how has it been living with migraine as a dude?

02:56

So I was a kid when I was diagnosed and living with them, I you know, I don’t remember what I was given as a kid, I just know as a red some red pill that they would give me and I remember as a kid, I’d have to go kind of just go sit in a dark room, be quiet, no light, a lot of things that people deal with. I think anybody with a migraine kind of has similar reaction to it. And then growing up, I mean, really, I mean, I probably have had 8 to 12 migraines a month, or at least where I would need to use medication to prevent a migraine from coming on, I’d say since I was probably eight or nine or so. And it’s been tough. I mean, with school, you know, going through school, grade school, trying to concentrate trying to sit in class when your head is just pounding, and you kind of want to just leave and go go home and go to sleep. As far as being you know, a man, I you know, I never noticed that it was predominantly women that had migraines. And because, you know, my reality was always just me, you know,  I’m the one that had the severe headaches. And I think for the most part, people have been sympathetic about it. I haven’t had anybody. Well, there’s been some people like, you know, when you tell them you have a headache, and they kind of roll your eyes, but you’re like, it’s worse than what you think it is. It’s a lot worse. So but I think just growing up, you know, I’ve had a pretty good, I’d say pretty good, I’ve had an experience with migraines that’s been probably similar to a lot of people.

Joe Coe  04:17

As an adult, did you feel like migraine, before you got into a place where you had them under control, was that impacting your life in a meaningful way?

Matthew Kloiber  04:27

Yeah, you know, as an adult, you start to have kind of your group of friends or people that you hang out with, or you go out with and, you know, kind of limits you on some of that kind of stuff. And so you kind of no one’s kind of hanging around you, you just know, it might it might just, at any moment just become really bad. And so there’s times where, you know, we would try to do things or plan things and I would just have to plan around the potential of having a migraine.

Joe Coe  04:50

Yeah, I think that’s something a lot of people don’t understand is even when you’re not having an attack, the fear of having an attack really controls your life, And it’s there, as you talked about, Matt, it’s great that you had people growing up and in your adult life that understand that. That goes a long way in helping people continue to live happier lives. So that’s really good that we hear that. I often don’t hear that.

05:17

Well, I think it’s what you said is, you know, the idea that that you might get a headache, and you have to kind of bring that along with wherever you go. So I’m also asthmatic. And so I have an inhaler with me 24/7. And if I don’t have my medication, if I don’t have my inhaler, it’s almost like that almost gives me an asthma attack. And so it’s almost the same with with my migraine medication. When I was taking it, we’re going on trips, I know there have been times where we were packing up going to the lake. So my parents live out the lake, and two hours away. And so if I didn’t pack my migraine medication, I was freaking out, because I knew I would just end up having a migraine no matter what. And so I think sometimes that fear or that pressure anxiety kind of builds up and I don’t know, I think it might even lead to some migraines.

Joe Coe  06:01

Oh, definitely. That worrying doesn’t help.

Matthew Kloiber  06:05

No, not at all.

Joe Coe  06:06

What drew me to you, Matt was in a Facebook group. And I don’t remember the name of it, it was a migraine support group. And I saw that you posted about how diet had improved your migraine attacks. And that’s a very controversial statement, it could be very energized. People get really passionate on both sides. “It’s not related to diet, it’s related to diet, it’s dismissive of you talk about diet, you have to talk about diet,” there’s like a very charged energy around diet, and likely because it’s very personal. And it’s something that is a struggle for people and sometimes diet does trigger, sometimes it doesn’t. So I was really impressed with how caring you were in sharing that experience and non judgmental. What has the process and journey for you been like to get to a place where your migraines are under control?

07:04

The diet part of that was kind of a byproduct of something else. And so I was actually having some chest pains. And so I had my cholesterol checked out. This was you know, several years ago and the cholesterol was just high, so high. And so we were able to take medication, thankfully to get it, get it under control, but I was starting to get chest pains and I went in and saw a cardiologist, you know, I’m only 34. You know, definitely wanted to get something checked out. And so he came in, told me he wanted to do like a heart and lung scan. You know, even though the numbers are okay, now they were just so high, we wanted to double check and see if see if there was something plaque or calcium buildup or or whatever. You know, we got that scheduled and I called a call my uncle. He was a retired firefighter here in Oklahoma City. And he had arthritis, severe arthritis in his hands, as you can imagine what that profession. So he had went plant based or he went he went vegan. And within two weeks, he was off all of his medication for for his arthritis. And it has been this way for years. And so I was talking to him about this and I knew, you know, plant based diet and and researched that and I knew that it had a lot of healthy benefits for cholesterol, you know, with your exercise and your diet. I started talking to him about that. And I thought, “Well, my cholesterol is really high. So I need to do something.” So I started this plant based diet, it wasn’t the healthiest, but it was still considered plant based. You can still eat plant based or vegan and not be healthy. But there are a lot of good options.

Joe Coe  08:36

Fries are plant based.

Matthew Kloiber  08:39

I heard Oreos are too so yeah, so a lot of a lot of good stuff that’s technically plant based. So so I decided to kind of ease into it. And so we started doing it. My wife had been super supportive, like she kind of jumped in with me, she’s awesome. She didn’t necessarily need to be plant based or vegan. But she stepped into that with me, which I really appreciate, which made it a lot easier. And so I started doing this. And mind you, I’ve had 8 to 12 migraines a month. And I knew that because that’s what my my refills on my prescriptions were, you know, I’d get some, I think I got 12. I got 12 of the triptan pills. And every month I was trying to refill those. And so I started to start this journey on plant base to lower my cholesterol, better my health. And I mean, I’m not kidding, maybe a week or two into that and I’m like, I haven’t had to take a migraine pill yet. And I’m like, well maybe that there’s something to that and then so I continue to do that. And I think I went maybe six months without a migraine until I started to be a little lacks on my on my diet and started to realize something was triggering them. And so I think after the six months I started having like maybe I had like a cheeseburger or something with some cheese and I started to pinpoint that It was dairy. I think the dairy is what was triggering my migraines. And mind you, I love milk. I love cheese. I’ve been eating that since I was a kid, which would explain a lot of my progression as an adult having migraines. And so yeah, I think that’s kind of just came to a head that I realized it’s definitely tied to a diet. And so you know, I got back on the diet, they’d go away, and then I try something dairy and it come back.

Joe Coe  10:24

So what did health care providers say to you?

Matthew Kloiber  10:27

I want to say I love my entire medical team. I don’t want to give them credit, because they have, they have walked with me, my physicians, you know, I’ve got a brother in law who’s an optometrist who has done some really great things for me, massage therapists, neurologist. Look, the prescription medication worked. And I was thankful for that. Because without that, I would have had a lot of suffering from migraines, but nobody ever offered or even suggested, and this might be unusual, this might be common, I don’t know, but no one ever recommended treating the cause and not just the symptom. And so you know, a lot of the prescriptions will treat, you know, your headache pain, but I could never get any thing to treat the cause of the symptom. They’re all really great. And then I think my physician, my family physician is the only one that I’ve talked to since then. And he’s, he’s happy because he was about to take me off of my triptans anyway, because I was taking too many of them. They had good things to say.

Joe Coe  11:22

Yeah, I think what we can learn from the story is is that we have to try all different things. And for you plant based worked, for me it might not for Susan, in Oklahoma as well. I don’t know why I went to Susan in Oklakoma. But Susan, Oklahoma-

Matthew Kloiber  11:42

I know a Susan.

Joe Coe  11:43

She called me before the podcast was like, make sure you take care of Matt. It’s like our, this neurological condition called migraine is so complicated, there’s so much still to be learned about it. We’ve seen great innovation in terms of medication. We’re also evolving our research and knowledge around how to reduce triggers, and can exercise help, can diets help. And, you know, what I want our audience to hear is that, you know, there’s risk and reward for everything that we do. And, you know, for Matt, this really worked. For you, it might, it might not. And what I really liked about Matt and Matt’s story is, is that he’s out there sharing, “This worked for me still listen to your health providers. Don’t buck the system, but know that there are other things that you may try. And this was one that worked for me.”

12:40

Yeah. And so going back to that post, it got a lot of attention. And I like what you said, some people liked it, some people kind of fought against it. But I wanted to be clear, like, you know, I know there’s there’s people out there that you know, they can’t try this, you know, medically there’s reasons why they can’t. But I also think it’s important that if you can try it why, you know, why not? If eating better, eating plant based, eating vegan cures your migraines, I mean, I’m an example. It just it didn’t just, you know, clear my or clean up my migraine problem. It actually helped with cholesterol, it helped with my allergies, seasonal allergies are better. Asthma is better. A lot of people that have asthma and allergies, get eczema, my eczema has been a lot better and I’ve had more energy to and so if there’s a way that you can try just changing your diet.

Joe Coe  13:32

Do you feel I think some people might have a problem that you’re using the word cure. Do you feel like you’re truly cured from asthma, migraine, eczema, all of those things?

13:45

I’m glad you mentioned that. Because as far as migraines go, I can only tell you what I’ve experienced. And that was six months without migraine and that is the longest I went in my entire life at least my early childhood to now especially after I had kids, migraines increased quite a bit. Probably sleep deprivation, you know, all sorts of things, but from what I know is that it I’m gonna- Yeah, I would say that it cured my migraines. Now as far as the other things my asthma I still had. It was just a lot less severe and eczema. I haven’t noticed any eczema. Seasonal allergies are less severe but I still have some.

Joe Coe  14:27

Talk to me a little bit about asthma. were you diagnosed with asthma and migraine around the same time what came first?

14:33

You know, I don’t, I never I never thought about that before but I believe I was diagnosed with asthma before I was diagnosed with migraines but it wasn’t very, very long after that till I was diagnosed with with migraines as well.

Joe Coe  14:48

And living with those invisible diseases, is there anything that you want people to know about them?

14:54

Asthma, people can hear when you can’t breathe or if you’re visibly distressed because you can’t breathe, I mean, that’s a significant problem to have if you’re not able to get oxygen to your body. And something I’ve tried to tell people, it’s like, you know, whenever you get a flare up, it’s kind of like you’re out of breath and you’re trying to get breathe through a straw, trying to get all the oxygen you can and that’s basically what your lungs do your lungs, you know, tighten up and it’s hard to breathe. So I think a lot of people could be sympathetic to that because it’s probably, maybe not as visible but, you know, they can definitely hear you struggling to breathe. Migraines, that one’s a tough one because usually when I get a migraine if I can, I’m at home, in bed with a cold compress on my head or something that you know the lights off.

Joe Coe  15:45

Thank you, Matt, for sharing your story and talking with me on Talking Head Pain today. I hope that our audience gets a lot out of it.

Matthew Kloiber  15:52

Yeah, absolutely. Thank you, Joe.

Joe Coe  15:56

Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.

Narrator  16:12

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

Narrator  00:00

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

Hannah Frost  00:06

I kind of one day I came across some paraclimbers on social media actually and suddenly realized that maybe I could start climbing again. And just being part of that community really helps motivate me and helps me feel kind of welcome at the wall.

Joe Coe  00:27

Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. Today, I’m joined by Hannah Frost. She lives with chronic migraine in the UK, she’s a paraclimber, and she created a website called Climbing Through Migraine. Today, we’re going to talk about climbing, her worst migraine attack, and what she’s learned doing the sport. We’re gonna dive right in. How are you feeling today, Hannah?

Hannah Frost  01:01

Yeah, no, I’m feeling good today, actually.

Joe Coe  01:04

That’s great. So am I, it’s a little gloomy here in New York, but got a nice little walk in before this recording. And I’m feeling good as well. So we’ll feel good together. Walk us through your worst migraine attack. How did it feel and what was it like?

Hannah Frost  01:20

My worst migraine attack was probably a few months ago. I went through this really bad patch where I had five days of straight intense, agonizing migraine. I was just, yea, stuck in a dark room, praying for it to end, not being able to do anything to help with the pain because it lasted for five days. And I’m a chronic migraine patient, and that means I can only take three of my acute medications a week. So I like I might have got that relief for like one day or two days. But then it just came straight back just as strong. And it was agonizing, and made me generally want something to happen to make it stop or like want to go to the emergency room. But also knowing that I couldn’t get myself to emergency room. And the emergency room was like the last place I wanted to be. But I wanted that relief. I didn’t go, I just waited it out. And eventually it calmed. But it was rough just because it was so long.

Joe Coe  02:35

I can relate to the migraine attacks that could last multiple days. And it’s like you just it’s still here. And why is it here? I’m glad that it broke for you. How is this disease impacted your life?

Hannah Frost  02:47

I was training to be a lawyer and then my chronic migraine got worse for some reason. And so yeah, now I’m no longer working. I’m hoping to like start doing some part time work at some point soon. But yeah, right now, not working.

Joe Coe  03:05

How did that make you feel delaying your career?

Hannah Frost  03:09

I think the fact that I knew it was coming, helped a lot. Like I knew I’d been on sick leave a lot. So I knew that at some point, it was going to come to an end, it was just a matter of when so I kind of went through the motions of feeling that grief and loss of my career before it happened, which probably sounds really weird. But I think by the time I actually lost my career, and like I don’t know if I’m ever going to go back to law. I might do if I get better enough to. It kind of strangely felt like a relief, because I was fighting so hard to try and be at work every day and pushing myself through so much agony. But I was like, “Okay, this is over now. You don’t have to fight anymore.” But there are still times where I’m like, “Well, I want a normal life.” I’d love to be able to earn my own money, have a normal life, get on with my career like everyone else my age.

Joe Coe  04:04

I think that makes a lot of sense about preemptively mourning, knowing that something’s coming. So I don’t think that’s strange. I also read and saw on social media that you’ve turned a lot of this negative experience into a positive through paraclimbing, can you let us know what power climbing is and why that brings you joy?

Hannah Frost  04:28

Yeah, so I’m a climber and I’m disabled. I have a few other health conditions. I have Ehlers-Danlos Syndrome, a functional neurological disorder. So I identify as a paraclimber. I started climbing years ago, and it instantly brought me so much joy. I kind of fell out of love with it a bit and had some health issues that meant I had to stop for a few years. But I kind of one day I came across some paraclimbers on social media actually, and suddenly realized, that maybe I could stop climbing again, and just being part of that community, even though I don’t get to like, see and climb with other paraclimbers much, knowing that there’s other people like me climbing really helps motivate me and helps me feel kind of welcome at the wall. And it just generally brings me so much joy and passion to be able to climb and work out problems and to focus on nothing else but the wall.

Joe Coe  05:25

Climbing was something that you did before your chronic diseases were diagnosed, and you found that it helps you process and maintain some level of connection to your past. Is that fair to say?

Hannah Frost  05:38

Yeah, that definitely is fair to say, just generally, I do love a sport. And it’s nice to be able to do it again.

Joe Coe  05:45

And you said you against the wall, that is an interesting visual. How does that relate to chronic disease climbing a wall, that one on one battle?

Hannah Frost  05:55

When you’re climbing the wall, so you’ll have different problems and they’re graded. And they can often be like, quite difficult to work out like you don’t get to the top just instantly. And if you do get to the top instantly, that’s not the most satisfying problem. I feel like it kind of relates to chronic illness because it shows kind of like that there’s hard parts, there’s times where you have to like slow down or say no, or times where like it actually is going well. And you do get to the top easily. And I think generally it just kind of reflects on kind of being able to get to the top of a wall that was really hard is really satisfying. But equally being able to like do something that you didn’t think you could do because of your chronic illness that is also pretty satisfying.

Joe Coe  06:45

That visual, Hannah, of climbing and I’ve never climbed before, but I’ve seen people do it. And that thought the shifting the “Oh, this isn’t the right grip, the length, I have to go this way,” and thinking about how our journey with chronic disease is not linear. Although we’re going forward most of the time, sometimes you have to go back. And that’s okay. I see people have to go back when they’re climbing. So I think it’s a really cool visual, we’re talking about chronic disease that I haven’t thought of prior to speaking with you. So thank you for painting that picture. You also created a bunch of accountants and website called Climbing Through Migraine. Can you talk about what inspired you to start that and what you’ve learned being on Tik Tok, Climbing Through Migraine, your blog, and how you’ve connected with other patients?

Hannah Frost  07:40

Yeah, so with Climbing Through Migraine, I came up with the idea after my migraine got worse at the beginning of this year, and kind of wanting to continue climbing through it. Because it’s amazing physical therapy to me, I kind of had to learn how to navigate climbing with a migraine, climbing without a migraine but not wanting to trigger a migraine. And also, I had to kind of figure out how to navigate safety issues. So I’m primarily a boulder so I don’t have to worry about like feeling someone else. But at the time, I was rope climbing quite a lot. So I had to kind of consider Is it safe for me to belay because I get quite busy with my migraines, and how to kind of make that safer. And I think all of that combined with the general environment of a wall, they’re generally like loud and bright, made me kind of want to create some guides to help people manage climbing with migraine and also review some walls. So right now it’s mostly walls. Well, it’s only walls in UK. But I feel like I felt like I wanted to do that because then if someone comes across it, it gives them time to kind of prepare and bring what they might need to manage a situation.

Joe Coe  09:03

Amazing, and if people have never climbed a wall before and live with migraine, what are some of the top tips that you would give, the top three that you would tell a new climber that lives in migraine?

Hannah Frost  09:13

I think I would say, definitely remember to make sure you’re hydrated. Make sure you have food in your stomach before you go and bring water with you to avoid kind of dehydration and blood sugar drops as a trigger. And then a second tip would be to just take it easy for your first few sessions. See how you feel because you don’t want to push too hard and trigger a migraine and it’s better to kind of go too slow, then go too hard and suffer for it. And then the third tip I would give would be to find a group of friends or a group of climbers who understand and will support you and won’t treat you in a way that you don’t want to be treated. Finding that group people who will support your highs and respect you when you don’t want to give something another go or when you feel like you just need to lie down on the mats and like, take a break is really important.

Joe Coe  10:15

How  does someone trained to climb? Do you do things not on the wall to prepare yourself mentally and physically?

Hannah Frost  10:21

So I personally right now, don’t do things not on the wall, probably should. But as a beginner, the easiest way to learn how to climb is to climb more, because so much of it is movement and technique and understanding the foundations of how to move more efficiently on the  wall and make use of your strength. But once you’re getting a bit better, you can buy fingerboards or hang boards, which might be known in your country. And basically, you’ll put them on your doorframe, and they have little slots in through your fingers and you hang off them you can do pull ups on them. And that’s the way people train quite a lot for climbing to kind of help them prove that finger strength.

Joe Coe  11:04

Very interesting. I’m thinking about you also living with Ehlers-Danlos Syndrome, and that for those that don’t know, that could cause hyper flexibility or mobility. How have you adapted your practice based on that condition?

Hannah Frost  11:19

Very much with Ehlers-Danlos Syndrome, it does depend on the day, sometimes I won’t need to adapt my practice too much. There are moves that I can’t do. So if things start with like a high foot, I just don’t have the power through my leg and the stability for my hips to do very high feet. I can get my foot up there, but I can’t use it. And I’ve just kind of adapted to knowing that that’s something I struggle with, and kind of practicing it but not so much that I get hurt. And then on like an average day to day, I’ll normally put KT tape on something if it’s hurting, be it my ankle, my wrist or like my shoulder normally, and I’ll just listen to my body and I try to stop doing something if a move is causing too much pain. I’m not very good at that because I do get very stubborn when it comes to wanting to complete climbs. But if I’m not completely fixated on something, I will just decide it’s not worth it if it’s causing too much pain, and I really should do that more. I think everyone with EDS should just listen to the pain signals that the body has given them because it is a strenuous sport, and it is easy to kind of pull something too much and get injured.

Joe Coe  12:37

I’ve learned so much about that disease by watching and listening to a colleague in Australia. His name is Joey, he does a bunch of Tik Tok videos for us on the Global Healthy Living Foundation’s Tik Tok and I didn’t know much about the disease prior to watching these Tik Roks. So really interesting that you also have that and he shared a lot of the tips that you share. So Hannah, I really really appreciate you joining Talking Head Pain, and for those you can’t see us but my cat just came on camera cause he’s like, “You haven’t given me enough attention today. So it’s gonna rub against the computer and make things shake”. So sorry, Hannah. But thank you so much for joining me today.

Hannah Frost  13:20

Yeah, it was a pleasure to be able to join you today, and your cat is adorable!

Joe Coe  13:25

Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe to so you never miss another one. I’m Joe Coe and I will see you next time.

Narrator  13:42

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

Narrator  00:00

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

Dr. Alan Rapoport  00:10

Whether we like the term medication overuse headache, or we like the old term, we can see it, we can smell it, and we need to diagnose it.

Joe Coe  00:22

Hello and welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. This is the second part of a two part interview with Dr. Alan Rapoport. He is the Clinical Professor of Neurology at UCLA, past president of the International Headache Society, and the co-founder and CEO of BonTriage, a healthcare company that helps people better understand their chronic disease. In this episode, we will be discussing a very important topic that concerns many patients, medication overuse headache. The topic that I want to talk about now with you is medication overuse headache. Can you explain that term and why patients should know about it?

Dr. Alan Rapoport  01:06

Well, one of the biggest problems that we have with our headache patients is those that have chronic headaches, and are always in pain and are trying to feel better, end up taking sometimes more acute care medication than they should. Whether it’s over the counter medicine, whether it’s a triptan, whether it’s some of the newer medicines that work on CGRP, or even in some cases a Butalbital containing medicine, like fiorinal or fioricet, which I don’t use anymore, or in some cases, even opiates, which I definitely don’t use anymore. And it turns out that if a patient takes that too frequently, and that is hard to know exactly where but we’re thinking more than two to three days a week on a regular basis, that it actually makes headaches more frequent, more severe, and more disabling. And that’s a very hard concept for the patients to understand, even if it’s explained appropriately to them. And sometimes they just don’t want to accept that. But once the doctor understands that, and the patient understands that, even though they’re trying to make themselves feel better, they’re actually doing something that may make them worse. And there’s a plan put forward to improve upon that and get rid of what we currently call medication overuse headache. Once that happens, we’ve got a good chance of making the patient better. Without accepting the fact that it occurs and doing something about it, we have not a very good chance of helping the patient.

Joe Coe  03:05

So in other words, if someone’s using medication too much, you would work with them to find a different treatment protocol to make sure that they don’t need to use the medication that much.

Dr. Alan Rapoport  03:19

Exactly. And it could be as simple as I only want you to use it two days a week. And on the other two days, if you need something, were going to get relaxation techniques for you, or we’re going to get you a device that works in a different way. Or, and this is what we do much of the time, we’re going to put you on a preventive medicine that you take either every day or every other day or an injection once a month or every three months. And that preventive medicine will decrease the number of headaches you’re having. And then you won’t need to take the acute care medicine so frequently, but whatever the answer is, we will work with the patient to figure it out so they can get out of this medication overuse headache. Because if we can’t get them out of that, it’s very hard to make them better. I’ll give you one example of a very good patient of mine who was almost 70. When I first saw her was using sumatriptan 26 days a month. And I said to her when I first met her, “Do you know why you have so many headaches?” And she said, “Well, I know you’re going to tell me I have medication overuse headache. So have three other doctors but they couldn’t help me.” I said, “Well, did you ever decrease the number of sumatriptan days that you had in a month?” As she said, “No I couldn’t because if I don’t take it when I need it, my headache gets unbelievably severe and may stay that way for two weeks, so I can’t do that.” And I said, “Well, I’m going to try everything I know, to get you better. But I’m going to warn you right now, I may fail only because a big part of the problem is the number of days you take sumatriptian.” And bottom line was, I did fail until some new drugs came along, preventive drugs. And once she started to take them, headaches went down in number. And she said, “I didn’t need to take them.” Great. But not everybody is as lucky as she is.

Joe Coe  05:44

And I think what is important to underscore here is that it’s a really hard cycle to break. And you need to work with the right physician. And the experience that you just shared is a powerful example of that. People, patients, people like me need to know that we have a partner in our care, that we’re not being judged for using the medication that this woman in this case felt that she needed to not have a two week long migraine. But that in reality, there are probably ways to optimize our care, that could reduce that frequency. And like you said, prevention medication sounded like the right way for her to go. So I think that’s really important to understand that when we’re talking about concepts like medication overuse headache, that it’s not about blaming the patient, it’s about really figuring out as a patient, as a provider using shared decision making to understand what our goals are, the lives that we want to live, and how we can optimize our care. And I think that’s a great example.

Dr. Alan Rapoport  06:45

You’re absolutely right. And the average doctor, if that doctor was smart enough to know about medication overuse headache might say to the patient, “You come back in a month on no sumatriptan. And let’s see how you’re doing.” That’s not adequate care. The patient is going to leave and never come back because they can’t do that. And at least if the doctor said, “Okay, do this, instead,” it would be helpful. So you’re right. Without a partnership, there’s no chance you can help a patient like that.

Joe Coe  07:21

I really appreciated a simple thing that you said, “And I may fail.” As the provider, you being upfront with the patient, that you’re not failing the patient, the medication is failing the patient, and that you guys working together might fail and you’re taking ownership and responsibility of that, I think is a really powerful shift that we don’t hear a lot from providers. So I appreciate that you said that.

Dr. Alan Rapoport  07:47

You know, it’s difficult to go into headache medicine as a physician, because patients are in a lot of pain and a lot of disability. And we can’t always help them immediately. And it’s very tough on doctors and nurses dealing with headache patients a lot. And it takes a certain type of person and personality to go into that field. And for whatever reason. I love it. And I love helping patients and I struggle with the patient. And I say to them, I will stick with you. And I might say not, I might fail, maybe it’s more appropriate, we might not get to where we want to get right away, it might take us several months of trial and error and changing doses and medicine. But we’ll work together. Most doctors don’t want to do that to be honest about it. They don’t have the time. They don’t feel they’re being compensated enough anyway. And these patients might call too much. So a lot of doctors just don’t want to deal with any patients. So you’re right. Patients need to find the right doctor for them.

Joe Coe  08:58

Totally agree and that is a good shift for my next question. We’ve been talking a lot about patients, what would you want your colleagues in neurology to know and even primary care physicians or nurse practitioners about medication overuse headache?

Dr. Alan Rapoport  09:14

Great question, hard to answer in less than the two hours that we have. But I will take a stab at it. First and foremost, we have to make the diagnosis. Whether we liked the term MOH, medication overuse headache, or we like the old term, rebound headache, or there’s a better term out there that we haven’t quite settled on yet. Whatever it is, we know what it is. We can see it, we can smell it. And we need to diagnose it. And that takes education. Because believe it or not, there are a lot of doctors and nurses that don’t know what that is. They’ve never heard the term. They don’t understand it, let alone know how to treat it. So we have to make the diagnosis better. And you talking about it a lot, writing about it a lot, me writing about it a lot, talking about that. We’re just about to submit a paper on medication overuse headache to a prominent journal and talk about how to diagnose it and some ways to treat it. And more research, clinical research has to be done because we believe that the newer drugs that work on CGRP, and blocking it in some way, are so powerful, that it really helps to treat medication overuse headache, but it hasn’t been proven yet. We see signs of that in the trials that were done just to get them approved for treating migraine. And we see that patients had come into these trials with medication overuse headache, when their migraine is successfully treated, the medication overuse headache tends to go away. But it wasn’t a trial for treatment of medication overuse headache. So it’s not good enough yet. So we need more trials, we need to convince the companies that have these very good drugs that they need to study it. And then we really need to educate the doctors about how to treat it. So it’s simple. Everyone needs to make the diagnosis, doctor and patient. And both of them need to work together to use the right drugs or the right techniques. It’s not just drugs, to get the patient better. And I will say this, for all those years that I’ve been practicing as a headache specialist, I struggled tremendously because I didn’t have the right preventive drugs. I had some preventive drugs, but they didn’t always work in medication overuse headache. So my job was to convince the patient to use fewer Acute Care Medicine pills in the month and take these preventives, some of which had side effects. Very, very, very hard to do. Now, I have a reasonable chance of saying to a patient, “I’m going to give you this pill once a day or once every other day, I’m going to give you this shot once a month, or once every three months. And you will probably have fewer headaches, and then you should use fewer of these acute care medicine.” It’s like a whole new world for me. What I used to struggle with has gotten easier for me and better for my patients. Now not everybody knows what I do about it. So that’s the problem. We need to educate the doctors and the patients.

Joe Coe  13:00

That’s really interesting. This is a separate topic. But I think there’s an inverse of this as well. And I’m thinking about my experience as a patient, the older medications before the CGRPs came out would make me feel so bad that I wouldn’t take them and treat my migraine attacks as often as I should. And I was under treating. And I think this people have this problem as well, that you under treat migraine attacks because of the side effects and all these things. So there’s an inverse of that with some of these medications that it was that it made people feel worse, I certainly did. It was hit or miss sometimes it worked well to stop the attack. Other times it made me feel worse than the attack. So I would sit there with the the medication, the nasal spray or the injection and think, “Is this worth it the risk of feeling worse, because I might feel better.” And now that there’s all these other options, I’m in a much better place, which is just amazing that science is there.

Dr. Alan Rapoport  14:02

A couple of statistics that are pretty shocking. In the old days, if I put somebody on a triptan, I would have a higher percentage than what I’m going to tell you because I stuck very close to my patients and they could get in touch with me all the time and so on. But if the average doctor put a patient on a triptan, the number of people still taking that trip in that six months is 20-25%. It’s unbelievable. And worse than that, in the old days, you put somebody on an epilepsy medicine as a preventive, a beta blocker as a preventive, an antidepressant as a preventive, the chance that the drug I put them on that they’ll still be taking it in a year, something like 16% of them. So patients aren’t stupid. They know that they feel terrible on these drugs, they’re not even sure that working, so they don’t take them. The only way a headache specialist can do better is if they really interact with their patients on a regular basis. And if they if somebody called me and says, “I’m getting these side effects,” I know either to lower the drug, or to change to another one. When you can’t get your doctor, you stop the drug. And by the way, I have that experience, I can’t get my doctor on the phone either. I don’t have migraine, but I can’t get my general doctor on the phone. I have to go on my chart. And if I’m lucky, somebody will answer me. You know, it’s difficult today.

Joe Coe  15:45

It really is and general practitioners are doing the best that they can. And I know that I was that my primary care doctor managed my migraine for probably 15 plus years, and I was on a medication that I ultimately shouldn’t have been on. And it was causing things that I didn’t even realize until I was passing out and people were like, “Why are you passing out?” and, “Oh, your heart rates of 35-40, that’s not normal.”

Dr. Alan Rapoport  16:17

I know what medicine you were on.

Joe Coe  16:18

I know you do. And it’s it’s mind blowing how much that impacted my life. And I didn’t realize how much it was impacting my life until we work to getting off of that. And on two different types of treatments. And many of us and this is not a unique experience, have cycled through all of those drugs. And unfortunately, we have to and you know, this because of the way the insurance companies operate, that they force us into step therapy and utilization management techniques that really harm us. And we have to take medication that wasn’t developed for our disease before they approved the medications that were developed for our disease. It really is mind blowing, if you take a step back and look at it that way. But it’s why we have great providers and physicians like you that are pushing that and talking about these issues.

Dr. Alan Rapoport  17:10

Well, I think we should remind physicians and nurses we shouldn’t give in to those insurance companies. It’s because we do that that situation you just described exists. I know it’s difficult to fight them. But if we all fought them as doctors, nurses and patients, they have to give in and we don’t. And we accept horrible treatment dictated by inexperienced people in front of a computer for an insurance company just so their bosses could make a lot of money. That’s really what it amounts to. And it’s wrong.

Joe Coe  17:54

It really- tell us how you really feel about that. It is wrong. It’s horrible.

Dr. Alan Rapoport  17:59

I don’t think it’s legal for me to say that on the air. If we’re on it’s, it’s, it’s horrible. It’s horrible. And I fight it but you know what it takes. My blood pressure goes up, I have to call a doctor on the phone. When I call, they say he’s busy right now. When they call me back, I got a patient on the exam table. So I have to say to the patient, “Excuse me, I need to speak to this insurance company for five minutes. And I would do the same for you.” I talked to them. And I start by saying “Well, Doctor, so and so what is your specialty?” And they say, “I’m a retired gynecologist.” And I say, “Well, I am a professor of neurology and my field is headache. And let me tell you why I need this drug.” And nine times out of ten, and I’m not mad at them I just I’m just explaining, nine times out of ten that go along with me. But most doctors won’t pick up the phone, of course they lose money when they pick up the phone. It aggravates us. You know I once made one of those calls from the hospital from my office in the hospital at Greenwich Hospital in Connecticut. And the nurses came running in, “Dr. Rapoport, you okay?” I said, “Why?” They said, “You’ve been screaming for the last five minutes.” So you know, it’s it’s horrible what happens, but it is that way and we have to fight it. That’s all I can say. And I’ve been fighting it for years and it probably hasn’t been helpful, except to my patients.  That really matters to that person. So that work is super important. People are getting the treatment that they need if they’re seeing you which is which is really amazing and it should be the standard across the board. The last thing I’ll say about it is the last time I did it because I don’t do it that much anymore. The last time I did it was about three months ago and I set a stopwatch. 40 minutes, some doctors see three patients in 40 minutes, you know, so it’s really horrible what’s happening.

Joe Coe  20:10

And they do it because it works. It wears down, the physiciansm wears down the patient. We’re tired.

Dr. Alan Rapoport  20:17

And they’re making a lot of money on this.

Joe Coe  20:20

One last question. We talked about this a little before we got on air, I know that there’s some evolving language around the term medication overuse headache. And you mentioned, it used to be called rebound headache. Now, it’s medication overuse headache. And that’s how researchers and many clinicians are using and defining it. And I’m hearing in some of the patient community a term called medication adaptation headache. And the logic behind that from my understanding is that we want to make sure that patients don’t feel blamed for using medication that we feel we need to use. So have you bumped into that term? And what do you feel about the spirit of these language shifts?

Dr. Alan Rapoport  21:01

The answer is I haven’t bumped into it too much. I guess my patients haven’t been informing me, although I do go to meetings where I hear what’s happening with patients, but I haven’t run into it too much. I agree completely with the reason for coming up with another name. You know, I always say to my patient, you’re taking more medicine that I would like you to take. And I know you’re doing it because you’re hurting, and you’re trying to make yourself feel better. But I want you to understand that you’re actually possibly making yourself feel worse. So whatever you want to call it is fine with me, but I have to use that term, because of insurance again, and the companies and when we do research on an international basis, we need everybody kind of talking about the same thing. So that’s the term that we’re all using. I was very involved in the International Headache Society. But I was not on that particular committee that picked that term. I don’t particularly like the term, but it’s there. And until it gets changed, we have to deal with it, I’m fine with a patient asking me, “Can we use a different term?” I’m fine with it. And I just explained to them, I need to use the correct term when I want to make a diagnosis. And somebody may look over all the charts one day and do some research and I want to use the correct terminology. But I completely agree with the reason for wanting to change the name and anything is acceptable to me and I hope some patient will come up with the perfect name for it and I will adopt it immediately.

Joe Coe  22:54

Amazing. That’s a really good way to look at it. You know, the disease is personal. There’s large discussions over migraine versus migraines and migraineur and person living migraine. And it we can get really bogged down by it. And that’s really important discussions, but also it’s like how do we get the treatment and the care that we need? And how do we cut through the noise to get it. And I just wanted to make sure that for those of us that, you know, prefer one term or another that we addressed it, and I think that you addressed it really well. Was there anything that I didn’t ask that you would want me to?

Dr. Alan Rapoport  23:31

We do need really good research. And then we need the companies to say, “Okay, now I have that now we have the data so we can apply to the FDA to get approval for treatment of medication overuse headache,” because it’s a big problem. And about headache in general, there’s so many things I could say I would simply say, we’re in a good spot right now. And it’s very important that patients find the right doctor or institute to be treated at. And that’s very difficult to do. So patients should keep looking for online stuff and podcasts and the kind of work that you do to spread the word. And I’m glad to help with any of it because until we have patients that can really control their headaches, we haven’t done a good enough job.

Joe Coe  24:29

Thank you so much for joining me today. I know that you’re busy and your expertise is really valued for both me personally and our community at large. So thank you so much for joining me on Talking Head Pain.

Dr. Alan Rapoport  24:45

Well, I’m very happy to have been here and to help spread the word a little bit and thank you for being so insightful about asking the right questions.

Joe Coe  24:57

Thank you for listening to the second part of our two part Interview with Dr. Rapoport. If you haven’t yet check out the first part where we discuss Dr. Rapoport’s career as a headache specialist and take a look at how far migraine treatment has come.

Narrator  25:10

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

Narrator  00:00

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

Joe Coe  00:09

Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, and I’m here today for a special episode of Talking Head Pain. Many of us in the chronic disease community have been discussing an article that was recently published in The Daily Mail, a media source that I consider to be a tabloid or tabloid light, I don’t take very seriously but it has generated a lot of really raw responses, and feelings in our community. The title is “Addicted to being sad: Teenage girls with invisible illnesses known as ‘Spoonies,’ post Tik Toks of themselves crying or in the hospital to generate thousands of likes – as experts raise concerns over internet induced wave of mass anxiety.” So as you could see, the title itself is very clickbaity, pulling at our emotions, and trying to generate probably revenue for this, this publication’s online ads. And in doing so it has really impacted our community. I’m joined here by two of my colleagues that live with chronic disease, that are tremendous advocates that are doing amazing work to raise awareness to dispel stigma, and to make sure that people that read articles like this, don’t feel alone. Because the reality is, is that if you’re marginalized, if you live with chronic disease, you’re going to face a constant attack by people who want us to feel disempowered. For this important discussion, I’m joined with GHLF colleagues who also live with chronic disease. Meet Sarah Shaw, the Senior Manager, BIPOC Community Outreach, and JP Summers, our Patient Advocate and Community Outreach Manager.

JP Summers  01:55

It really angered me, like I had to step away, because I thought I was gonna drop my iPad. I thought I was gonna slam it down. Because again, here’s another barrier we have to overcome on top of what we already have to overcome.

Joe Coe  02:12

What made you angry about it, particularly?

JP Summers  02:15

Well, again, they were they’re taking a jab at teenagers. I feel like when they were mentioning about, “Oh, they’re doing it for likes,” I never, ever posted any of my material, my content for likes. I posted it because I wanted to raise awareness and say, “This is what’s happening to me. This is what I’m going through.” I was not doing it for likes, I was doing it because I wanted to raise awareness. And the fact that this article, all the aspects that article that they’re saying, “Well, you know, they’re they’re seeking empathy. There’s, they’re they’re trying to diagnose themselves, and it’s like, psychologically damaging,” it’s like no. And for them to also say that they’re acting worse than they really are, that is what angered me. When I’m in pain, and the amount of whether I cry, or however I handle it, it there’s no level. There is no level and it’s almost it just really upset me, again, I had to put my I put my iPad down because I thought I was gonna drop it. I thought I was gonna throw it to be honest. Because it’s just one more thing that we have to fight even harder against, that stigma. We’re not seeking attention, we are telling our truth.

Joe Coe  03:35

And that’s JP Summers that you just heard from, who is a Community Outreach Manager at the Global Healthy Living Foundation. And we actually hit record because in our warm up, JP was was so passionate about this issue that we just dived right in, and really important to hear what JP is saying. I’m also here with Sarah Shaw, who is a colleague too at GHLF. Sarah, when you read the article, how did that make you feel?

Sarah Shaw  04:02

I was furious. I was and also unfortunately not surprised as well. I feel like time and time again the chronic illness community, teenagers, women are constantly being told that it’s all in their head, that we’re making things up, that you know, we’re doing things for attention. Like I’m sorry, I have never once like tried to be an attention seeker for a living with my migraine, endometriosis or anxiety. Like that is not like that is not something that I’m gonna you know, want to post on social media and just get for the likes or you know, to the one of the parts in the article that was talking about like to convince their doctor to get them a diagnosis. Do you know how hard it is when you live with an invisible illness to get an accurate diagnosis? Not only as being like a young person, not only being a woman, not only being a part of the queer community, not only being a member of the BIPOC community, it is difficult to get doctors to believe you and this article is actually making that 10 times worse when they’re seeing and reading articles like this, that their patients are just making things up or doing things for light or content. Do you actually think that somebody’s going to admit themselves, to get in a hospital bed to get attention? Like it was just, it blew, it blew my mind. And that article was extremely ableist, and a bunch of other things targeting young young women in general, like, if anything, the women that are speaking out and sharing their truth are very brave, because I remember what it was like, being a young, a younger person not having a diagnosis yet and trying them to go through all of the noise,  trying to figure out what was going on. And it was a very scary time. And so putting yourself out there on social media is very brave, especially when you have a chronic illness.

Joe Coe  05:51

So I’m hearing a lot of anger, which is rightfully placed. What would you tell someone, JP, that has anger, what they do with this anger around this article?

JP Summers  06:06

The way I would go about it is keep going, keep speaking your truth. Don’t let anyone define your illness. Don’t let anyone make you feel less of a person. I always take my frustration and anger, and I turn it into something positive. And after reading that article, I did cool down. Because again, it just, I, I felt personally attacked, not only as a female, but as a caregiver to a son who has a chronic illness. And I actually wish that it wasn’t one sided. It’s like they put they put all these females, it’s like, what about the males? My son, as a teen, I’m sorry, I’m getting upset right now. But my son as a teen faces, so much. Just people were always telling him toughen up, you know, it can’t be that bad. And as his mother, I’m like, you have no idea. He is not faking, he physically cannot sit up because he is in so much pain, from chronic migraine. And, again, the anger I felt the frustration just made me realize why I do what I do as an advocate. But also, I’m not going to stop, I’m gonna keep going this article just fueled my desire in my, everything that I do has a purpose. And I’m just not gonna let it stop me from sharing my truth, from sharing what I’m experiencing. Because you know, what I’ve heard from several people, just from one thing I talked about openly has helped them to realize for one, they’re not alone, and that it’s okay. It’s okay to, to express yourself, whether it’s on social media, or in writing, it doesn’t matter. Don’t stop, just keep going. And let the haters hate.

Joe Coe  08:01

Wow, JP, this is bringing up a lot of stuff. And it’s interesting, when I read this article, I didn’t realize the first time I read it that it was exclusively targeting young woman even though it was in the title, I went directly to the chronic disease and it was, you know, attacking people with chronic disease. It’s so multi layered. And I think the point that you bring up shows how sexism and homophobia and racism are all connected. There was a book, “Homophobia: Weapon of Sexism.” And it talked about how sexism impacts men in a way because like what you’re saying about your son, that he needs to toughen up he needs to be a man those gender roles that quote unquote masculine identity of being tough hurts young men and boys and it delays diagnosis for chronic diseases and all those things and I know it’s something that we’ve we’ve spoken about on Talking Head Pain, so it was really interesting that you brought up that area. I want to turn to Sarah now. Sarah, what are you hearing and feeling from the community that you talk to on a regular basis on social media through your professional network at GHLF?

Sarah Shaw  09:24

I think everyone is tipped off about like the whole the whole situation if that trying to say the say that nicely. I think they feel disrespected. They feel that the article paints people living with chronic illness in a very very bad light especially people that live with invisible illnesses. I think that that’s something else that is an important factor here. You know, something like migraine or MS or other diseases that you can’t or not outwardly being shown is like if you walk into, I know there was someone on Talking Head Pain when you walk into an emergency room with your hand cut off, you’re immediately going to be seen and you know, your pain is going to be treated and address this so. But for these people who live with invisible illnesses, people who are young, people who are women, non binary, you know, they’re not treated with the same respect. And a lot of different people are just just as angry as JP are. And if anything, I think it’s fueled the fire more to, at least for me, to encourage people to post more about what they’re going through because you never know what you sharing your truth, you sharing your story, you sharing your experiences, how that’s going to affect and help somebody else. I know for me, when I first started off on my journey, I came across a chronic migraine, a young chronic migraineurs blog. And that for me, I was like, oh, my gosh, she’s young, she’s just starting off in her career. And she’s also got hit with this long term illness. And that’s what we’re doing here on Talking Head Pain as well. I feel like telling our stories, like, I wish I had had this podcast when I first started off on my journey, because it would have made me feel so much more less alone, and that it wasn’t all my head, like my doctors had once told me. I was told that, you know, it’s just anxiety. And like, while I do have anxiety, like my migraines are not anxiety. That is, you know, it wasn’t just stress, it wasn’t just anxiety, there was an underlying issue. And I think that that’s what we need to keep telling people is, and that’s what brought me to advocacy, because I wasn’t getting heard. And you know, this article just drags people living with chronic illness through the mud terribly. And I think that if the person writing the article had taken a step outside and actually spoken to the people living with chronic illness and learned about their experience a little bit more, the article would not have gotten published. The fact that they say that people are doing it for clout is ridiculous.

Joe Coe  11:46

Really struck a chord. It really people really Sarah and JP, it really has hit people. And it’s really interesting. And this could be a little controversial of me. And I think this article personally clickbait horrible. We’re going to be publishing some more stuff on GHLF on it. You could check out an article that our colleague Zoe Rothblatt, published yesterday about how social media does good on CreakyJoints. There’s one area in this that I think hasn’t really been spoken about. And it’s the part where she says. “Experts raised concerns over internet induced wave of mass anxiety.” Now, that is like a horrible way of phrasing it. But I really wanted to think about what the like, if we were taking any negative intention out what they’re trying to say. And I think if I was to be devil’s advocate, that there that this part of the article was trying to say that constantly posting negative will make us feel bad. How do we balance the negative and the positive of chronic disease because that’s what I grappled with, as I was thinking about this article, as someone who has shared a lot of negative and a lot of positive. Do you think that there’s something there that needs to be explored with the chronic disease community that we’ve missed, because of how just horrible this article was in being exploitative of young people and people that are invisiblized?

Sarah Shaw  13:23

I think there was a balance, I really do think that there’s a true balance and whereas maybe the person looking at these chronic illness accounts aren’t really listening and seeing because I feel like with every account or at least that I follow, it’s a rollercoaster ride, right? Living with a chronic illness, you have your highs and you have your lows, but you always have like your community there to support you. And like, I think that there’s some really creative content creators out there that are like having, I don’t want to say fun with their chronic illness, but like showing the positives, of you know, which is one for me like the community that comes out of living with a chronic illness, and then some of you have to show the reality. So just like insurance barriers and doctors not believing you and you know, difficulty affording your medications or access issues and stuff like that. And I feel like there’s a balance that we all have to strike in in doing it whereas some some people for a certain period, they’re gonna go through a really really rough patch. And then there are people who are able to swoop in and help and support them. And I think that it really really really depends but I haven’t come across any accounts that it’s all just negative. I feel like if anything them sharing their story is a positive.

Joe Coe  14:38

That’s a really good way to look at it that these are snapshots in a person’s history and story. JP final words?

JP Summers  14:47

So I’ll tell you something, the person that wrote this article and anyone that has a negative opinion about people seeking attention needs to follow CreakyChats because every single Creaky Chats we do there’s so many people, so many. Either it’s people that have that illness or have know someone that has that condition. Even providers, you know, caregivers, they weigh in. And those conversations are true to form, they are so in depth, and they share every single thing from how they’re having obstacles to obtaining, you know, medications, but also how are they feeling. How are they doing. You know, this is just again, for show, this is what we are dealing with. What we’re experiencing. And when you see what’s going on, with each CreakyChats, you’re hearing again, perspective. And that’s true to form. That is authentic, there is no faking on what we’re saying, because we are on the same page, we need community to thrive. We need our community to feel stronger and build us up. Because we have people tearing us down like that article. And when that happens, we just have to band together and be even stronger, and fight back. Because we are not going to allow someone to define us because this is something we live with. And we’re trying to cope with it. And the last thing we need is someone to diminish, you know how we are as a person. And I for one refuse to let someone make me feel less of a person because I already have to deal with the disability part of it. The physical part. The things I can’t physically do from time to time. And I don’t need the burden of someone telling me, you know, “Oh, you’re doing it for you’re posting pictures for empathy and likes.” No, I’m doing this raise awareness. Thank you, JP. And for those that don’t know CreakyChats is our Twitter discussion that’s hosted by CreakyJoints, the online community for people with arthritis and related conditions. You can find that by going to Twitter and putting in the #CreakyChats. And thank you so much JP, for your words and passion and just energy that you’re giving to educate people and to be supportive and a role model. Sarah, any last words from you?

Sarah Shaw  17:04

As hard as it is, the person that wrote this article probably didn’t, has not had to deal with a chronic illness. And I say this because I don’t fake being sick. Half the time I’m faking being well. And so does a lot of people in our in our chronic illness community. And I think if you took time to actually get to know us, you would see that it’s too much work to fake being being sick. It’s, it’s, you know, I think that all of these people will repeat, again, are some of the bravest and strongest people out there that I know people within the CreakyJoints communitym in the GHLF community. I think people living with chronic illness are just trying to just trying to live their lives. And stuff like this doesn’t help not only them trying to live their lives, but also get access to diagnosis and access to resources and stuff like this, like, like the articles like these have kind of detrimental effects. And I just want journalists to think about that the next time that they’re, they’re writing articles without actually getting to like speak to people living with these illnesses. And I want to encourage everyone to keep sharing their stories to keep sharing their content, you know, to keep writing, to keep posting on social media, because you are not alone. And you are most likely affecting somebody in a really positive way by doing that.

Joe Coe  18:27

I could not agree more. And I think just to wrap this up what I’m hearing from both of you the range of emotions, from anger to empowerment, to not giving up to encouraging folks to continue to share their story. And also how important it is not to take shortcuts. It was made very apparent listening to you both reflecting on this tabloids piece that this writer took a lot of shortcuts. They took shortcuts in how they presented the information. They took shortcuts in how they talked about complex information. They took shortcuts in the clickbatey title, “Addicted to being sad.” They used words that were very charged, that they knew were going to generate a reaction from a segment of the world. And in some respects, they’re getting what they wanted. We’re talking about it right now. And another what we have to do is deflate the energy that these folks have. We have to deflate their ability to make us so hurt because this woman can’t doesn’t control us that wrote this article. I hear it from the work that both of you are doing, that we’re doing together at GHLF. So this woman has no power over us. Unfortunately, she has a platform, but we do too. Which is why we thought we would do this special episode of Talking Head Pain to really just allow us to have space to talk about the rawness of of this experience and this article. So thank you, Sarah and JP for being amazing colleagues at GHLF and partners in this work.

Sarah Shaw  20:16

Thank you, Joe. As always.

JP Summers  20:17

Yes, thank you, Joe.

Narrator  20:21

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

Narrator  00:00

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

Dr. Alan Rapoport  00:09

We had one medicine, as I mentioned. I have so many medicines I can use now for acute care or prevention of migraine.

Joe Coe  00:19

Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation. And as many of you know, a migraine patient for over 20 years. This is the first part of a two part series with Dr. Alan Rapoport, who is the Clinical Professor of Neurology at UCLA, the past president of the International Headache Society, and the Co-Founder and CEO of BonTriage, a healthcare company that helps people better understand their chronic disease. On this part, we discuss his career, why he became a headache specialist, and how much innovation and change has happened during the time he’s practice medicine. Hi, Dr. Rapoport, how are you?

Dr. Alan Rapoport  01:02

Hey Joe, I’m doing well today. How are you?

Joe Coe  01:06

I’m great. It’s a good day. It felt like fall this morning. I know it’s quite different in California for you, but it warmed up as the day went on. But we got to taste of fall for about two hours. I want to jump right in. And you have a long history of being a leader in headache medicine. How long have you practiced and why did you initially decide to get into headache medicine?

Dr. Alan Rapoport  01:29

I first opened an office in 1972 before you were born, and that was in Stamford and Greenwich, Connecticut. And I practice there for over 30 years. I did general neurology, I covered three hospitals. Over those first seven years, I treated everything. Neurologists treat some pretty nasty diseases like multiple sclerosis, brain tumors, epilepsy, Parkinson’s disease, neck and back pain, and headache. And over those first seven years, I was fascinated more by headache patients than by any of the others. Some of the others had more interesting brain problems or other ways of presenting. But what always got me excited was to be in front of a headache patient who’s smart, working, maybe had a family. And for two, three days or longer every month, they were in bed, throwing up non functional. And then two days later, you’re back doing fine, but worrying about when the next attack is going to come. We had only one medication back in those days, we still have it but we don’t use it much. It’s an ergot. And it was called ergotamine tartrate. That was it. And that was a good medicine. It wasn’t a good medicine. It was an OK medicine, but it caused nausea. And people with migraine already have nausea, so it wasn’t a great medicine. And I decided in those seven years to get more involved in headache, to help develop new drugs, and to figure out what’s causing this very complex and unusual problem, which on the surface, nobody can see anything. And all the tests end up being normal. And I said I gotta figure this out, because that’s who was coming into my office, along with the other people who are often even sicker in terms of chronic disease. And of course, many people with migraine have chronic migraines. That’s how I got into headache, and why in 1979, I decided to open a Headache Center and really concentrate headache diagnosis and treatment.

Joe Coe  04:08

Let’s go into the present. So this was the 70s. And we’re now in the 20s which sounds really bizarre.

Dr. Alan Rapoport  04:16

It’s a long time ago.

Joe Coe  04:18

It is a long time ago. What are some interesting trends that you can encapsulate quickly that you’re seeing in research now?

Dr. Alan Rapoport  04:25

Well, the most exciting thing and people always can’t believe it when I say it. When I started practice, we had no CAT scan, and no MRI scans. Can you imagine a world without scans? We had to do angiograms and milograms and mano cephalogram and spinal taps. And even then we didn’t always know exactly what was wrong with the patient. So, diagnostically if there’s something wrong with your brain that will show up on a scan, things are much easier. And then when it comes to treatments, we had one medicine, as I mentioned. I have so many medicines I can use now for acute care or prevention of migraine. And I will include some devices that are pretty helpful. I don’t know which one to choose first. I have a rough idea what might work the best with a particular patient, but I don’t always know. And then finally, the research on what causes a migraine has been just incredible. When I started out, we kind of thought, inflammation in the meninges, the covering in the brain was important, and we still think it’s important. And we thought blood vessels were involved. And now we think much more it’s the brain and blood vessels, which is a tremendous leap forward. And we didn’t know anything about serotonin at the time. I mean, we knew about it. And we knew it was involved. But we didn’t know about the receptors. And we didn’t have medicine that affects those receptors. So today, we’re in the light. And back 50 years ago, we were in the dark, like the patients are in the midst of a migraine.

Joe Coe  06:19

That’s so amazing. And I know I’ve benefited from a lot of that research as a migraine patient and knowing that there’s so many different options that are available if my current treatments don’t work, just reduces anxiety. I think for a lot of us knowing that there are multiple things that we could try and do working with a provider to feel better. So that’s exciting.

Dr. Alan Rapoport  06:41

You know, I just add one thing, you know, everybody who’s listening has probably tried a triptan and maybe tried three of them. And sometimes they work well. Sometimes they don’t. Sometimes they cause side effects. There are seven of them by tablet, and some of them are nasal sprays as well. And some of them are injections, and some of them are inhalers. We did loads of research back in the 90s and after 2000. We, in our Headache Center in Stamford, Connecticut, we were doing approximately 14 trials at one time. And we were involved in all of that research. And all of that was critically important because everybody has tried triptans. But today, people are looking back and saying yeah, they’re great. And some of them say, “I don’t want to move, I’m fine.” And that’s okay. And some of them are saying they never worked that well. And they cause side effects and they constrict blood vessels. But look at the six or eight new drugs we’ve had, in the last less than 10 years that have moved us way ahead. I think our patients, they’re unlucky that they have migraine, but they’re really lucky that they’re living today. And that’s 50 years ago.

Joe Coe  08:01

Especially if they are connected with the right provider that is able to educate them on their options. I think a lot of us, and I didn’t realize this until doing this work professionally, that the living with a headache every day isn’t normal. I thought it was. I thought that everyone had a minor headache every day. And until I realized that that counts towards your headache counts when it comes to what types of treatments you can access, I would have still been on some older medications because I didn’t know that information. So we need to get that information out to our community to let them know that you don’t have to live in this pain. You could try different options and hopefully they’ll work well for you. And if not, you can continue to work with a provider to find different things.

Dr. Alan Rapoport  08:54

Extremely important concept and I think you will move the needle ahead better than a lot of us have been able to do in the past. I mean, we’ve been working on this for years. And not only do you have to get to the patient, you have to get to the primary care physician.

Joe Coe  09:12

Thank you for listening to this first part of my conversation with Dr. Rapoport. Join us next week as we continue our conversation and tackle the topic of medication overuse headache. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.

Narrator  09:32

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

Narrator  00:00

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

Julienne Verdi  00:10

Living with Ankylosing Spondylitis and living with migraine just has me so empathetic for those who have other types of invisible diseases and illnesses. Think you look at me, you think I’m young I’m, you know, I must be fine and you know, it’s just a headache or it’s just, you know, just a little back pain.

Joe Coe  00:27

Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m here today with Julienne Verdi, who is the Executive Director of the Alliance for Headache Disorders Advocacy, the organization that many of us in the migraine community know that runs Headache on the Hill. Outside of that she’s an attorney and a nonprofit leader. And for those who don’t know, we’ve known each other since our early 20s. The world is in fact small. Julienne, how are you feeling today?

Julienne Verdi  01:00

I’m doing okay, Joe, thanks for asking. I hope you’re feeling well as well.

Joe Coe  01:05

I’m a little tired, but that’s life. So you live with migraine, how do you explain your worst migraine attack? What was that like for you?

Julienne Verdi  01:13

I do experience migraine and I would say my worst migraine attack probably happened in the middle of the pandemic. I remember being home with my three kids at the time. And just feeling it starting and not having, I hadn’t had migraine medication at that point. I have had migraine attacks throughout my life, had been treated throughout my life. But I was in this period of time, especially during the pandemic, where I think so many of us were where our health care just was neglected. And I didn’t have rescue medication. I felt it coming and there was nothing I could really do besides take ibuprofen and it didn’t do anything. And I ended up on my bathroom floor because the cold tile was the only thing that felt good and I was vomiting and experiencing just such severe pain that I was, you know, contemplating going to the hospital but again, it was during the pandemic. I was scared to do that as well. And I just remember finally, you know, my husband having to literally carry me off the bathroom floor, get me into bed, and tying one of his neck ties around my head because the counterpressure on my temple was like the only thing that was giving me at least a tiny bit of relief and just sobbing for hours and hours until I finally could fall asleep and sleep the rest of it off. I mean, it was horrendous.

Joe Coe  02:35

Sound like it. You’re not the first person, unfortunately, that has said on this show being on the cold floor and in a bathroom. Actually, someone else talked about being an airport bathroom. And we do what we need to do during those those horrible attacks. I can I can totally relate. Put my head in the freezer before, tried that. I don’t advise that to people. You also Julienne, live with ankylosing spondylitis, which is a disease that a lot of people probably don’t know about. It’s an inflammatory condition. What did you learn living with both chronic diseases and how has that changed the way you view chronic disease?

Julienne Verdi  03:15

Absolutely, so you know, my experiences with ankylosing spondylitis and migraine are just so intertwined for me. My first migraine attack probably happened when I was being diagnosed for ankylosing spondylitis. So ankylosing spondylitis, like you said, is a chronic inflammatory disease. I have, you know, lots of pain and inflammation, my sacroiliac joints, my spine, as well as other joints. And so when my inflammation is high in my body, it can absolutely trigger a migraine attack. And so, you know, more often than not, I experienced both types of pain at the same time. You know, it has been a challenge. It’s something that you know, it impacts everything that I do. You know, I can, there’ll be days where it’s hard to get out of bed physically and I need to and that stress of the physical pain can trigger a migraine attack as well. So they’re just so intertwined in my life. And it’s, it’s it’s definitely a challenge, but it’s something that, you know, living with ankylosing spondylitis and living with migraine just has me so empathetic for those who have other types of invisible diseases and illnesses because I think you look at me you think I’m young, I’m, you know, I must be fine. And, you know, it’s just a headache or it’s just, you know, just a little back pain and you know, people really downplay that, I think, especially when you supposedly look healthy.

Joe Coe  04:33

No, that’s so true. And I know with both diseases, getting a diagnosis can be rough. Did you experience delays in getting diagnosed with both ankylosing spondylitis and/or migraine?

Julienne Verdi  04:44

Absolutely. For both illnesses. Both, I started having symptoms in my teenage years, probably like 15 or 16 years old. And I did seek treatment for ankylosing spondylitis. I was going to doctors, and it took almost 10 years to get a diagnosis to figure out what was what was going on with me. You know, first they thought it was Lyme disease. And they thought, you know, it was rheumatoid arthritis or, you know, whatever, growing pains, was really what I got in the beginning, you know, must just be growing pains. And it was the same thing with migraine. And I think with migraine, especially what I think, really hindered me getting a diagnosis was that my family experienced migraine. My father does. And to this day, he still calls it a sinus headache, you know, and so there’s just so much misinformation out there. And so for years, I thought what I was experiencing, unless it was one of those really bad attacks, where I’m on the bathroom floor, I thought all those other headaches that I was experiencing, were just sinus headaches, you know. And so I was taking a lot of over the counter medication. And because of that, I actually ended up giving myself ulcers, multiple stomach ulcers from self treating, because my providers weren’t taking my pain seriously, and helping me figure out what was going on and find safer medication to take.

Joe Coe  06:01

So I want to switch gears and talk about balance. How do you balance living with migraine and being a mother?

Julienne Verdi  06:09

I think that’s one of the biggest challenges of my life. So I’m a mom of four. I have four young children; a seven year old, a four year old, a two year old, and a one month old. We have a full house here, it’s so much it’s so it was bring so much joy to my life. But it’s a challenge because there are absolutely those days where I just don’t feel well. And the kids want me to play and mommy has to say, No, I’m sorry, but Mommy’s not feeling well.” And that is something that, you know, breaks my heart every single time. There’s become times where my son, you know, will just start asking, like, “Are you feeling okay, today? Mommy, can you play with me today.” You know, so they know that I have so many of these days that aren’t so good. And one of the things as a mother that I’m grappling with right now is that my son who’s seven is starting to show some signs of having head pain himself. So you know, I started noticing over the last couple of months and some instances where he’s having, you know, sort of an emotional outburst. And you know, then he kind of retreats to his room. And it’s only later on, you know, because I’ll go in and check on him. And he doesn’t want to talk. And it’s only later on where he’s telling me he didn’t want to talk because his head was hurting. And he’s literally under the blanket covering his head because of the light sensitivity. And he’s experiencing head pain. And what a heartbreaking thing to watch as a mother to know that I know what that pain is like, and now seeing my kid going through that same thing. But I think that the one thing about that is what a motivator because now I feel like I have to go mama bear on migraine and headache policy because it’s not just me impacted, now it’s my kid.

Joe Coe  06:25

Love that. And I was I got pumped up at the end. What you were just saying. Let’s go! So we know each other from New York politics back in the day, what did you learn working and volunteering in Staten Island that you apply to your current work?

Julienne Verdi  08:03

Yeah, so Staten Island is an interesting place. New York politics is a very interesting place. You know, it is a very close community. There’s just so much stigma, I think, also just with being from Staten Island that I think it kind of, I bring into this work now that there’s so much stigma with having a headache disorder. But I think the other thing about this community as is it is a little tight knit, you know, the headache community is a little tight knit. And so breaking in and being an outsider kind of coming into this work. Because I haven’t been in this field for a long time. Although I’ve been experiencing migraine for a long time I haven’t been in in this world. It could be a little insular. And I think that that’s one of the things that I’m trying to work on within the organization is making sure we’re not just using acronyms without explaining what they are, right. And making things a little bit more approachable for those who aren’t in this field.

Joe Coe  08:59

We have a joke at GHLF that we don’t use acronyms at GHLF, Global Healthy Living Foundation. And that’s the joke. In talking about your work, Julienne, what are you most proud of as an organization? And what are some continual struggles and fights that we’re looking at as the years go on?

Julienne Verdi  09:18

It’s a great question. You know, we’ve accomplished some real wins over the years, such as the establishment and expansion of headache disorder centers of excellence, within the Veterans Administration, the VA hospitals. And that’s to treat veterans experiencing migraine and headache disorders. That’s a community that’s really impacted by headache and migraine disorders because of you know, various issues. Their exposure to toxic burn pits, which we’ve heard a lot about in the news lately. It’s also because of they have a higher rate of concussions and other head injuries. And so these centers of excellence are treating these veterans who have made sort of the ultimate sacrifice and service to this country, we’re finally treating them in an in a way that is acknowledging the, the immense impact of these disorders on their lives. So that’s something that I’m really proud of. And I’m so proud that it’s continuing to expand. And that work is something that we think is a model for that we hope that everybody would have access to really. We want everybody to have access to the same quality care that we’ve been able to secure for our veterans. And then in terms of areas where we think we need to continue to work, I think funding within the National Institute of Health, the NIH, so funding for migraine has been really low compared to the disease burden. It’s actually the least funded research area related to disease burden within the NIH. And we believe that’s unacceptable, and it’s holding back progress for new and exciting research and treatments for headache disorders. And it also holds back providers from going into this field because there’s less research money available to them. So we need to make it you know, exciting and well funded for more doctors to get into this space.

Joe Coe  11:10

Last question for you. Can you tell me what you’re most excited looking into the new year and the rest of this year with the Alliance for Deadache Disorders Advocacy?

Julienne Verdi  11:18

Absolutely. So, you know, the Alliance for Headache Disorders Advocacy, we are a 15 year old organization and have done so much work in that 15 years. We’ve experienced some real growth, I think over the last year, there’s been some rapid change and growth. And I really see that continuing in the future. I’m really trying to come in with kind of fresh ideas and and think about how do we move this work forward. How do we do really targeted outreach and bring people in from underserved and underrepresented communities and, and we really thank GHLF for being a partner in that work and helping us to to better do outreach to the BIPOC community and LGBTQ communities. Because I think it’s so important. I think what what excites me about this work is, is that I really believe that the best spokespersons for making change are those who are impacted by the work. So those who actually experience headache disorders, and that’s what’s so great about our work, we bring together patients, providers, caregivers from all around the country, and bring them to Washington DC, whether virtually or in person to our Headache on the Hill event, where they advocate for change. They speak to their legislators, maybe for the first time ever, they’re ever experiencing, you know, an advocacy or a lobbying meeting. That’s really empowering to go into a meeting to tell your story to an elected official or their staff and impact change. And we’re doing it. We’ve done it and our our advocates are doing. Just in our last year, we brought 200 advocates from 48 states to our Headache on the Hill and think that that made a difference. And it’s continuing to make a difference. And I’m really excited. We’re working on our asks already for this year, I think they’re going to be great. And I think, you know, I’m really hoping we’ll bring even more folks. I would love to get to 50 states so that that’s a little bit of a goal for me over the next couple of years.

Joe Coe  13:08

I personally can say it’s a great event, I’ve been able to attend it in person. And I know that dhlf folks have supported it virtually and in person for many years. And it is truly empowering to be able to take pain and change it into purpose, which is something we talk about a lot here at GHLF. And really appreciate your energy and time and passion and commitment to this work. And I truly look forward to continuing to work and grow with you, Julienne. So thank you for joining me today.

Julienne Verdi  13:41

Thank you so much for having me and for the important work that you’re doing to break down stigma. I think that the work that you’re doing with this podcast, it’s storytelling and it’s an incredibly powerful tool for impacting change. And, you know, by speaking truth to power telling our stories, we can break down stigma, change hearts and minds and truly make a difference to the millions impacted by migraine and headache disorders in this country and you’re doing that work and I’m so glad to call you a friend and partner in that.

Joe Coe  14:10

Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.

Narrator  14:26

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

Narrator  00:00

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

Pascal Derrien  00:09

Men in Ireland are not willing to go to the doctor for anything, but there’s a lot of, I suppose, inhibition from men when it comes to migraine.

Joe Coe  00:19

Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation, and a migraine patient for over 20 years. I’m delighted to speak with someone internationally today, Pascal Derrien, who is the Executive Director of Migraine Ireland. He’s been doing some really amazing work leading that organization over in Ireland and I thought it would be a good opportunity to connect with him and hear and learn from him about his perspective. Hi, Pascal, how are you doing today?

Pascal Derrien  00:53

Hi Joe, I’m good, I’m always good. Thanks for having me.

Joe Coe  00:56

I’m so happy that you’re on. Let’s start by finding out your connection to migraine and chronic disease. What brought you to this work, Pascal?

Pascal Derrien  01:05

I came across the Migraine Association of Ireland 25 years a go, on a different path and you know, they were somewhere and they were giving a talk. But 25, I was actually pretty surprised that 25 years on actually they would come near me and we, migraine was slightly more than I was expecting. So I still like most people had, I suppose, preconception or perception of migraine. And I went and ended up having some chat with the board’s during the recruiting process, I realized that actually that was way bigger than I thought, starting with being neurologic disorder and all these type of things and not just a headache, which is obviously one of our taglines. Also, because the fact that was a chronic conditions really interested me, while I’m not a migraineur myself, I’m diabetic. And I think the overarching principle of chronic conditions around the spectrum, you know, you live with a Sword of Damocles above your head, or some have been medicalized more heavily than others. The anxiety attacks, the up and downs, or going to the doctors and all that jazz, medications. So what I found actually most similarities with my own condition, or at least from an understanding perspective, or than really a lack of knowledge. So I found a relatively at ease. However, I had to learn quite a lot, no pun intended, but my brain was blown away when I two, three months in, I learned so much about it. And I and also how prevalent was the condition in the society, how highly it was ranked from the WHO perspective and all these things. Yet, there’s a lot of trivialization and stigma in our society at large, but also in workplaces in particular. So that really interested me in terms of you know, how we can push the narrative in a different way, at least from an Irish perspective.

Joe Coe  03:01

That’s a really good segue to my next question, Pascal. I want to know what the mission of Migraine Ireland is and how it is being an Irish person living with migraine?

Pascal Derrien  03:12

So Migraine Ireland, for us, our primary mission is really to educate. And that’s really at the core of what we do day in, day out. And we do this through various channels. So we have what we call a Patient Channel where we run 20 to 30 events open to the public. We facilitate them, we invite doctors, professors, nurses. We also have another program which is called Workplace, where we educate people who may not know too much about migraine; HR practitioners, DNI champions, HR or business unit managers and so on. We have started to work with some private insurers and wellbeing companies as well. Our which is really people, education, and outreach. We also have self management courses for migraineurs. And we also have an info line, where we do signpost people towards either neurologists or we try to demystify a few of the myth as well. However, we are not clinically qualified. So we really only a signposting. We never really get involved in terms of you know, prescription medication and so on. So we leave that to the healthcare professional. We are tiptoeing a bit in research, and by that I mean we are supporting some startups, pre-startups, and also people who are doing PhDs in terms of research from a survey perspective because we have access to migraineurs. From a migraineur’s perspective, we also have a closed digital platform which is a peer to peer social media for migraineurs. It’s only for migraineurs, we have excluded health care professional, and anybody who wants to sell products, so it’s just really migraineurs who are sharing tips, experiences. It could be anything to how do you travel overseas when you’re a migraineur or to I have that product, I’m trying this it doesn’t work so what’s your experience and so on. So in a nutshell that’s what we do.

Joe Coe  05:02

That’s really fascinating. Pascal, what is the access environment like around treatments? Here in America, we have access to  CGRPs and neurotoxins and neurostimulation devices and all these different things. Is it like that in Ireland? What are some of the unique challenges?

Pascal Derrien  05:22

I suppose in absolute terms, yes. In reality, I probably need to provide you a bit of context about Ireland. So Ireland is a small country. 5 million, or 5.1, depending who you talk to. 600,000 people suffer from migraine in Ireland. So it’s roughly a ratio of 10 to 15%. Ireland is a country, from a structure perspective ,is highly fragmented, so you have Dublin and then smaller cities or towns. There’s a huge deficit. And it’s not only in Ireland, but we know in Ireland, we feel very accurately, there’s a huge deficit of knowledge in our health care practitioner population. We don’t have many neurologists who specialize in migraine we have or a huge interest in migraine. The number of GPs is actually are not high either. And the training around migraine is actually almost non existent. And then clinical nurses who would be specialized in neurology is a huge, huge deficit of them. In Ireland, we probably need around probably 120. And there’s a gap of 60. So may not sound a lot by American standards. But for such a small country, it’s actually pretty, pretty big. In terms of high technology product. Yes. However, at pharma level, from the day of submissions to, let’s say, go to market, I think the rest of Europe, you could say roughly, on average, it’s 200 days, you know, providing there the economics are favorable, obviously, the clinical trials and so on. In Ireland, you’re talking about 600 days, so we are lagging behind big time. So it’s, it’s not overly structured, if you happen to have private insurance. That’s okay. If you don’t, it’s a different story altogether. Already from the public system, there’s always a lot of waiting lists on various pathology. So migraine not being lethal, or fatal in terms of outcome, I can let you imagine where we are, in terms of waiting list. However, there’s also some, I suppose, hope, where for example, the HSE, which is the equivalent of the National Hospital System here, Healthcare Service Executive, have also kicked off some pilots around pathway to care for headache. And Migraine Ireland has been playing a pivotal role in terms of steering committee, but you know, the pilots have been very conclusive. Migraine Ireland has been there, I suppose we’ve heard that one of the reference organizations for non medical care. However, it has not properly been launched within the country has the pilot in terms of execution, we are still, I suppose a couple of years away from having the structure in place. So yes, we have access to most of the medicine available worldwide. However, the execution is a bit more problematic, and it’s a bit more fragmented. Also, we have a huge deficit in terms of technology when it comes to health in Ireland. So we still do things on donkeys with papers and stuff like that. So not necessarily want to add some paddywhackary to the leprechaun image of the Ireland. However, the reality is, we are not there yet. So there are some programs and pilots, but they’re not really fully execution day in, day out.

Joe Coe  08:57

Yeah, and I think you guys are doing amazing work to help address some of the stigma, to raise the profile of migraine, to really explain how it is a disease that deserves and warrants the attention from health systems. To that end, I noticed in looking at the work that Migraine Ireland does, you developed a workplace program to educate workplaces about migraine. Can you talk about what you’re doing there and why that’s important?

Pascal Derrien  09:24

Yeah, absolutely. So I took the organization over roughly 14 months, and I think we had a very strong muscle geared up to a patient or general public. You know, if you bark at the same tree, you always get the same results. So we decided that it would actually, in order to have an impact, it would be good if we were to develop a narrative geared up to people who may not know too much about migraine because that’s where the stigma happen, especially in the workplace. When you think that 11% of the people who are migraineurs who are working either lose their job, have to go part time, or to repurpose the carrier. It’s pretty important. Also, it’s one of the few neurologic disorder where people are still in employment by and large, so we thought it was critically important to educate. So eight months ago, we, we decided to have a kind of a programmatic approach and the programmatic approach would be in three fold. The first point would be to get migraine awareness, kind of a one on one around migraine, what it is and what it is not. And at this stage, it does, you know, it’s 90% of our work. We also aspirationally, once we have had the first talk, we can come back with a second talk, which would be a bit more tailored, that will be more scientifically geared up towards a specific population within the employer. And certainly, we’ve been working on it for 12-14 months. We are looking at potentially having an online accreditation, which would sit primarily in cooperation for starter and being part of either web program, or, I suppose, or training participation from employees. And with an accreditation in the end and a certificate. We’re not necessarily where we want today, because we’re working with some organizations who are working on a larger scale. And we’re a small country. So whether it’s adjustable or not, what we know as well is we are touching corporate at this stage, which is the tip of the iceberg because 95% of the companies in Ireland are actually very small. So the second stage with us would be to reach out to SMEs where they may not have a DNI or an HR practitioner and you know, but you still have migraineurs working there. And we don’t want people to be stuck in a corner, or be victimized and so on. Also, we are pushing the narrative to have migraine included in the DNI narrative. And it’s really important around whole chronic conditions, non visible disabilities, and so on. I think DNI has had a lot of big growth the last 10 years, LGBTQ+, gender, and ethnicity, all this type of thing absolutely needed to happen. Now it’s time to pass to a second phase. Really, there’s a lot of diversity in a workforce, which is not necessarily linked to what I was outlining earlier. So wellbeing is important one. Also, while migraine tends to impact ladies in their prime, it’s not only ladies, it’s also gentleman and some people carry the flame of migraine way past the 50s and 55, as well, and it needs to be addressed. Now people are working longer. So in companies, it’s also important. So what do you do with people who have chronic conditions? And not only migraine, it could be diabetes, it could be anything else. So what do you do with those people? Are you writing them off, or you accommodate them? So we have the Reasonable Accommodation Act in Ireland, which is geared up towards disability, we are really doing a lot of lobbying just to try to get migraine included that but not only migraine, could be epilepsy, and so on and so on. So the workplace environment is a huge and untapped opportunity for us. And so far, the response is actually pretty good. Also, when you add that the economics are pretty telling, 260 million euros impact on the Irish economy. For such a small country that’s pretty staggering. And lastly, millions of days of work loss. Then you start to get traction for the CFOs there’s always a Ah Ha moment. Oh, that’s not just a headache.

Joe Coe  13:36

Yeah, show them the numbers. What I really appreciated about the Migraine Ireland site was that you had a section for men. I often don’t see that as a man with migraine. I thought that was that was really cool.

Pascal Derrien  13:48

Yeah, I actually just want to reel on that. That’s it’s an interesting one. Obviously, it’s a 70-30% ratio. So 30%. There’s a lot of man who aren’t diagnosed and men in Ireland are not willing to go to the doctor for anything. It’s not only Ireland. But you know, it’s always very hard to get traction on that front. We have done a couple of things. We’re not there yet, by any stretch of the imagination. We have a on a monthly basis, something called Afternoon Tea, where people just dropped by, exchange and very recently we starting to see it was only ladies for whatever reason unless I was there. And the last few months, we started to get gentleman showing up on our, it’s interesting, not necessarily a huge number, but though they’re there. We also organized a talk or a public talk geared up only to men. What was interesting, a lot of people did sign up, but not a lot of people did show up. So we’re going to continue on doing it because it’s super important job. But there’s a lot of, suppose, an inhibition from men when it comes to migraine. It’s seen as a weak condition and so on. So we probably need more people like you Joe, to do what you do and talk about it and say it’s perfectly okay to talk about it because it’s actually it goes in tandem with trivialization, it’s just you know, it’s, “it’s a lady’s condition or just go go to the pharmacy and and get some paracetamol. And it’s just a bad hangover,” all these type of things. There’s a huge misunderstanding. So while women are a bit more forthcoming, when it comes to describe the symptoms and go to healthcare practitioner, we know that’s not the case in Ireland. So I’m glad you, you have noticed. In terms of impact, you know, it’s one of our priority to, I suppose, magnify the impact, to scale up our impact in that domain there. And also for children. It’s a journey, the famous journey, as people would say, but you know, we’re working on it on. Anecdotally, we have some good response.

Joe Coe  15:52

Yeah, it’s definitely true. I remember, I was switching treatments and adjusting to a new one. And I was working with a personal trainer and weightlifting and doing all these very what people would consider masculine, broy things here in the States and loving it. I lift weights a lot now. And I think it’s great, and it helps me manage, also can trigger some folks, works for me. And I noticed that on your website to that you talk a lot about exercise and how to work with people to find what’s right for you. But I think the process of sharing that I have migraine, I’m getting dizzy, you know, we have to scale back on some of these activities before we ramp it up in the future for me to get my disease under control. I think as men, many of us wouldn’t feel comfortable having a discussion because you want to continue to push and like you said, Pascal, we don’t want to be seen as being weak. But I think that the more that we are real about our pain, and that this is a real disease, people will be impressed with how strong we are. Because we’re dealing with this disease that can be very debilitating. And we’re figuring out ways to manage it and, and do it in ways that are healthy that listen to our bodies. And so I love that you’re doing this work with Migraine Ireland.

Pascal Derrien  17:06

Thank you.

Joe Coe  17:07

My last question, or one of my last questions for you, I noticed it you guys just did a big cycle fundraiser?

Pascal Derrien  17:15

Yeah, so it was an interesting one. So I’m a cyclist, I do endurance sport. I do marathons and stuff like that. We know that sports, or especially endurance sport, is obviously a double edged sword for migraineurs. And we were debating as a team, you know, is it the right thing to do? Are we going to exclude some people on so on and so on. So, so we spoke to a few, kind of a focus group almost to a certain degree. We spoke to a few migraineurs and we came up with the idea that you know, first we need to spread the message further afield, maybe towards the community who may not know too much about migraine. So again, an opportunity to spread the message into different channels. The second way was a fundraiser because like a non for profit organization, you know, we are tight, budgets are tight. We’d love to do more, but you know, we don’t necessarily as much as we would like to. And certainly, we realized that the format would try to be inclusive, and so far that we would propose a 50 kilometers at moderate pace and 100 kilometers with more experience. We found out actually there was far more migraineurs that were willing to take on the challenge, albeit, some would tell us, “I will be only able to confirm I’m showing up probably on a morning or the day before depending on how my chronic migraine does evil that week,” and that was okay by us. But we had a cyclist which is very well known in Ireland, was very well known, probably more 20-30 years ago, Sean Kelly. And came to us so that that was quite a lot of attention. We had quite a few press releases, some interviews on the radio and stuff like that tagging along with the cycle. On the day we had some migraineurs, actually some Irish migraineurs who actually flew over from France, where they based and brought some other migraineurs with them, but took on the challenge. And I think it was it was brilliant, because there was a big smile at the end of the challenge for those who took the 50k. And I think there’s a couple of migraineurs who took on their 100k and just a sense of accomplishment and being a part of it. Because very often in those events, people either drop, they’re, you know, looked over. All these type of things. On the day, each group was staying together. So you may not know more about cycling, some supportive, some people tend to take off and disappear. And it’s like, it’s not a race but people think it’s always. Purposely the two groups we had to stay together actually we merge at the end the last 10k together. We worked out something that everybody finished together. And it was a great day. We’re planning the second one already. We also planning some other events, maybe a jog, walk 5k, where actually far more, I suppose feasible for migraineurs to walk and whether they walk, 2k, 3k, or 5k’s, we’ll see. So we really want to make sure that people understand that, while it’s a chronic condition, you can still do things. You may do need to adjust. You may not be Usain Bolt. Having said that, you could. And I think it’s really for me to try to empower migraineurs as well, because sometimes chronic, people who suffer from chronic condition, there’s a lack of self belief, you know, you almost writing yourself off. No, I think you need to adjust. I think you need to embrace to certain degree. But I think you need to be accountable as well. I think you can go towards the healthcare professionals. But I think you need to do some work. Obviously, the diary and the patterns and the triggers for migraine are key to the diagnosis. But for any other condition, chronic conditions as well, I think you need to embrace and accept, there’s an acceptance somewhere, that you actually are experiencing your chronic condition. And I think it makes things easier. But when it goes back to exercise, and sport, I think if you adjust, you know, I think that’s important. You were mentioning weight and so on and some weeks you made more, some weeks you may do less, and that’s okay. And the importan is consistency. And routine is important in any way, whether it’s migraine or any other type of chronic condition. Exercise is key, I think there sometimes there the gray area for migraineurs is is you know, it’s a double edged sword, and you’re not too sure whether it’s going to trigger it, or whether it’s actually going to help you prevent it. I guess it’s trial and error, you get to know yourself better. Now, it was great. And we’ll do it. And the interesting bit is we had a few people coming to us just you know, having a five minute conversation. I said, “You know what, I know more about migraine so next time I hear migraine, I’m not going to laugh. And I’m not going to dismiss it.” I think it’s far more important that how we were speculating about so if we can change the mind of individual one at a time. That’s pretty much what we’re trying to do. And the cycling was one channel for us.

Joe Coe  22:06

I loved it in your materials promoting the cycling event that I think you ended it with, “We do it for those who can’t.” I think that that is a really important message that’s many of us as advocates feel. You know, we do that because we can. I appreciate all the work that you’re doing, Pascal, that Migraine Ireland is doing, that we’re going to be able to do together as a global migraine community to ensure that everyone gets the support, care, and love that they deserve when they live with a disease. So thank you. Thank you so much for listening to this episode of Talking Head Pain, the podcast to confront head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.

Narrator  23:02

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

Narrator  00:00

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

Samuel Kelokates  00:09

Being with a visible disability, you know, people can look at me and know that I have a disability and understanding like, oh, I might need help. For people with migraine, they don’t really have that luxury.

Joe Coe  00:18

Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m here with Sam Kelokates. He’s the founder of Kelos Physical Therapy. He specializes in the treatment of headache and migraine in his patients. Outside of his professional work, Sam is a congenital amputee and athlete and his unique life experiences help him relate to migraine headache patients. I’m really delighted to have Sam on the show today. So Sam, how are you feeling today?

Samuel Kelokates  00:55

I’m doing great. Joe. Happy to be here. Thanks for having me.

Joe Coe  00:59

Amazing. So I learned that you live with tension headaches, can you describe what a tension headache feels like for you?

Samuel Kelokates  01:05

Yeah, for me, at the time when I was struggling with tension headaches was right out, like right at the end of PT school and for the first couple of years afterwards. For me, the tension headaches would usually start kind of somewhere in the morning with like upper shoulder and neck pain, and gradually progressed throughout the like morning into the afternoon, like right up over the ear into the eye and just kind of be like a very dull ache. And like a lot of pain was like mild, sometimes moderate if I let it go too long before like taking any NSAIDs or laying down for a few minutes. So but at one point it was getting so it was happening enough to where like it was like four or five times a week for me.

Joe Coe  01:46

What made you specialize as a PT in headache and migraine?

01:49

In 2021, I decided that I wanted to open my own practice. And I just started seeing a couple of people on the side while I worked a home health job. And then I started seeing a couple of friends for headaches varying from tension headache to cervicogenic headache and a couple of migraine people. And I started using those treatments on myself and other family and friends. And it just spiraled into me seeing that there was a need for this. And that there wasn’t really a clinic that they felt that they could go to that said like, “Oh, we work with people that have you know, headache, or other oral facial pain disorders.” And that there was an opportunity here in the community that people really needed help with.

Joe Coe  02:28

I was drawn to interviewing you based on a tweet that I saw that you put out, and I’m going to read it and ask you to explain what you meant by it. So you tweeted, “Migraine has been described as a sensory processing disorder. Another reason I strongly encourage exercise for those with migraine, as it has been shown to improve sensory processing. This can result in less frequent attacks by decreasing sensitivity to certain stimuli.” Can you explain that, Sam? I think that’s super interesting.

02:57

Yeah. So with one of the theories with migraine is that there is so many sensory stimuli involved from visual, auditory processing, vestibular and touch. So in our somatosensory system that there’s so much going on, we’re having difficulty with processing and integration of these sensory stimuli. And that’s been shown in both children and in adults with migraine. So there tends to be this hypersensitivity to the various stimuli that are present both during and between attacks for people with migraine. So the way in that I said, exercise, it doesn’t necessarily have to be exercise, it can be multiple forms of movement from walking to running and biking to yoga, or doing housework. But physical activity is really good for helping our body process these sensory stimuli better. And over time, especially with exercise and the way it can be dosed, can help our body create new pathways to make these connections stronger to decrease how frequently they make you trigger into a migraine attack.

Joe Coe  04:02

That’s really helpful. And I appreciate that you define exercise a little more broadly, because a lot of folks when they hear exercise, they think of like intense aerobic activity and walking is a form of exercise.

04:15

Yeah, and I think, so when I say exercise, I mean, it’s kind of it’s kind of like medication, where there’s a specific dose. There’s how much time, there’s a specific intensity that we work at. And we’re really working on controlling the volume that somebody is doing, one to not trigger an attack, but also to modify their disease so that it occurs less often. It can be varying for different people depending on what their needs are at the time, and also what they enjoy. So not when I say exercise, I don’t want people to think like, “Oh, you have to be running down the street during you know, high intensity CrossFit style workouts.” That’s not what people need all the time. For some people, if that’s what they want to get to, I can help them get there. But that’s not necessarily what people need to make sure that their disease is improving.

Joe Coe  05:00

And how do you talk about exercise with people that are in pain? Whether they’re living with migraine, that’s one of the last things that we want to do when we have a migraine attack or dealing with the ongoing implications of migraine.

05:16

That’s a really good question. So for, it really varies on the person, how they perceive exercise and movement and what the purpose of it is. So if they have kinesiophobia, so they’re fearful of any type of physical activity will trigger an attack, I really work with them on finding something they enjoy and working towards that so they’re less fearful of that movement, and can feel more empowered living with a chronic pain condition. Now, sometimes being in pain, exercise can actually really help that because it does modulate our pain perception. So it can actually decrease how much pain you’re feeling at one time. So making you feel less intense pain, but it also helps us increase our thresholds of pain. So it requires more stimulation to induce an attack or high levels of pain. So I really work with trying to teach people that, you know, how does exercise and movement affect pain, and how does that, in turn make your life more functional or give you more abilities, despite your chronic pain condition.

Joe Coe  06:13

I think it’s such an important topic. It’s something that we touched on a little bit with a previous guest, Dr. Lindsay Weitzel, who talked about when she has a migraine attack that she tries to distract her brain by watching a movie or even listening to a movie if you couldn’t watch it, to get rid of the in your head dwelling on the pain, which is really hard to do. And exercise is another way that I’m hearing you say that we can do that

06:39

There isn’t really much research on using exercise to treat an acute migraine attack. There’s really just very small case studies. But I’ve had several clients over the past that were there like, “If I feel migraine coming on and I go for a light walk, you know, 20 minutes,” just easy not even an intensity where we create like a physiological demand to improve cardiovascular fitness, but just to be a little bit active, helps to decrease their migraine get it to go away quicker, or to abort it before it really sets in with the head pain phase.

Joe Coe  07:10

Yeah, super interesting, and definitely more research needs to be done. I want to switch gears a little bit. Can you talk about some non pharmacological approaches to migraine management that you discuss with patients?

07:21

Yeah, so there’s a wide array of, you know, non pharmacological interventions that we can do with people, exercise being one of them. Other things you can look into with patients would be like nutraceuticals, using like vitamins and minerals to treat the disorder. And there’s some evidence to show that, you know, things like riboflavin, CoQ1, And  magnesium are really important for migraine. Those substrates are kind of used in our metabolic pathways. And we know that with people with migraine that there shows to be mitochondrial dysfunction during and after migraine attacks. So because of this energy deficit, that that might be one of the reasons people have problems with sensory processing. Senesory processing requires a lot of energy from the brain. Other things we can do for non pharmacological treatments would be to really look at the diet outside of the micronutrients. But are they eating enough? Regular enough? Are they consuming enough water often enough? Sometimes they don’t even really have to get to like clinical levels of dehydration, but to be lower on the side for them might be able to trigger an attack. And we can also look at sleep patterns and stress management. And stress management doesn’t always mean that like, somebody is in emotional distress, and we need to address that with a mental health professional. Sometimes stress management is like, “Oh, I have you know, multiple meetings today. I gotta run the kids around. I have you know, this PTA meeting, after school I got so much going on.” That actually creates a higher level of stress. Well, how do we manage that to get you back down and more grounded, so you can feel more in control?

Joe Coe  08:53

I want to really drill down on on some stuff that you’re saying. Because a lot of that has been used against migraine patients, and you’re a super caring man, and are very empathetic, how do you cut through the dismissiveness that, “Oh, if you just drank more water your migraine would go away.” Which actually was told to me in a medical setting when I was in a horrible attack, and I’m like the water’s not might help it’s not going to help now. How do you get through to people that have been harmed by saying just exercise justice, if that’s a small thing, or just drink more water and these things that we know can be helpful?

09:35

When I really talk with my clients about like these, these nonpharmacological treatments, I don’t want them feeling like oh, they’re to blame for their condition. There’s things you can do to help influence the disease and have migraine attacks occur less often. But that doesn’t still mean that you still don’t have migraine disease and that you haven’t built up sensitivity to these deficits where I can be dehydrated and not get a migraine, but you do so we just need to recognize that that’s a symptom for you. And how do we prevent you from getting to a level of dehydration before an attack occurs, because drinking water during the attack isn’t going to help you abort it any faster, then you take any medication that you go to the laying down. Yes, we need to rehydrate. So those symptoms go away, and you know, help you feel better. But it’s not really your fault all the time. I mean, there’s so many different things going on, you can be you know, busy at work, distracting the meeting, you can’t always drink water constantly at times, but it’s about creating a management solution to help you avoid that trigger in itself.

Joe Coe  10:35

And that’s really helpful. And I think that you living with a visible disability, being an amputee, has really helped you create empathy, and a connection with people with invisible disabilities. Can you talk about how that has informed your practice?

10:50

Being with a visible disability, you know, people can look me and know that I have a disability and understand like, oh, I might need help. But on the other side, they might also try to help me when I don’t really need help. For migraine people, or people with migraine, they don’t really have that luxury of saying like, “Oh, clearly this person needs help, or they need some type of accommodation or change in their life to where I can facilitate, know their disease and make life less stressful on them.” So some of the ways I kind of can talk with people that is like I have a physical disability people know when I need help. For you, people might not know when you need help, and you might have to ask for it or set clear boundaries on when you might be having an attack on what is okay for people to do and what is not okay for people to do. Some people are clearly triggered by smells from perfumes. And if you’re working in an office or working with somebody that’s always having a strong perfume around them, and you’re constantly and trigger, it might be appropriate for you to really have that conversation with them. It’s like, “Look, I know you really liked that smell. But for me, it’s really causing my disease to worsen around you. Either we need to modify what we’re doing and how we’re interacting, or can you please stop wearing that for when we’re going to be working together?”

Samuel Kelokates  11:30

Yeah, that’s super helpful. What are some practical physical therapy tips that most people, I know it’s very individualized, could benefit from hearing?

12:10

I think for people with migraines, and it’s a little bit different when you get into tension headache and cervicogenic headache. For migraines, I think a lot of people over stretch their necks. I don’t actually think stretching is necessary for a lot of people that have that neck pain or shoulder pain and they feel that migraine coming on. And they spend a lot of time trying to stretch that neck pain away. But what they’re probably actually doing is actually irritating the tissue there and sensitizing the area even more. And then they’re making it easier to trigger that migraine from a musculoskeletal trigger. What I really find is more effective is low intensity cervical strengthening exercises, enough to not stimulate, you know, intense muscle contraction that might make the migraine or headache worse. But would end up making the muscles stronger and feeling more stable with the neck.

Joe Coe  12:57

Listening to speak, Sam, it’s so important to for our listeners to understand that there are so many different tools in the toolkit, to overuse a metaphor, that we have when living with a chronic disease. And I just it’s so fascinating to look at it from your perspective, which is one that many of us don’t, for many reasons. And I think it’s important that we are open to hearing different approaches to managing what is for many of us a lifelong condition.

13:30

With those kind of strategies in the toolbox you’re saying, there’s so many different types of interventions from manual therapy to exercise both specific to the neck and head to just generalized fitness improving your overall wellness, to the use of non pharmacological treatments like sleep and stress management. All these are tools and the tools we want to use are very unique to each person. I can’t just throw out different treatments that are, “Oh, that’ll work for all migraine people.” That’s not how that really works. I need to you know, really sit down, talk with that person, hear what their story is. So I know how to modify the treatment plan that’s optimized for that individual.

Joe Coe  14:07

How do you work with other health care providers that are managing the medication aspect of migraine disease?

14:15

So one of the ways I work with some, some patients on figuring out how to best manage their condition, medications are very important for preventative and acute treatments of migraines, especially the attacks and trying to reduce them and make sure that they can come back to live in real life within that same day. What I’m working on is helping make sure that those those medications that they’re taking one, they don’t have to take them as often. And they’re more effective because you’re able to get out of those sensitized states much quicker. So by using exercise, improving sleep, hygiene and improving stress management, they’re decreasing their sensitivities to a lot of the sensory stimuli we talked about earlier, that will help their medications work more efficiently. So there’s actually a decent enough studies, mostly in the aerobic category, not so much the strength training literature right now, but with the aerobic programs that people that are in those programs that are taking medications, end up taking less medication than their control subjects in those studies. So that’s really how I view the role of physical therapy or exercise is to augment the pharmalogic side and make that side more powerful.

Joe Coe  15:26

Yeah, that’s, that’s an important message for people to hear. What do you want the world to know about migraine and your work in PT?

15:34

So the one thing I think, you know, people the general population should know is that when people have migraine, they’re not making that up. It’s a real pain disorder. And just because they don’t show it in their face, doesn’t mean that they’re not really suffering behind that wall, this invisible disease. It’s not like some other chronic pain issues where where you can see the injury that is going on, and that those people need to be empathized with. We need to understand that they’re going through something that you can’t help with all the time. For physical like, for a physical therapy standpoint, like the majority of physical therapists don’t understand what migraine is, or cervicogenic headache or even tension headache, they don’t really understand the pathophysiology. And I’m not just like assuming that. Like there was a study that took a survey of like 350 orthopedic physical therapists across the country. And like, I think like 52% were able to, like appropriately diagnose cervicogenic headache. And it was even less for tension headache and even less for migraine. So we get into these professionals that just aren’t properly trained for the most common pain disorder in the world, or one of the most common pain.

Joe Coe  16:40

Can you define those types of headache, because our audience might not know?

16:45

Cervicogenic headache would just be defined as your headache is due to a cervicogenic trigger, where you clearly have neck pain, and that’s clearly leading to the headache attack. That’s gonna be absent of your other migraine symptoms, right. So it’s just neck pain, just headache. But then there’s a lot of overlap between that same symptomology and tension headache. So when I see people with cervicogenic headache, or tension headache, it’s kind of like, the way I treat them is basically the same. I try to identify this musculoskeletal impairment that’s present, and then make the treatment that addresses those impairments while I’m trying to control for pain that’s initiating the cause of the headache. Now with migraine, when they have that neck pain, that neck pain is a referral from the trigeminal nerve. And then it’s kind of, I kind of equate it to like how people have heart attacks and will have jaw pain, or shoulder pain or arm pain with that, that there’s this peripheral pain pattern where there is this over sensitization and stimulation of the trigeminal surgical nucleus, and that is referring pain outwards. And so that’s where you’re having this pain or this change in the brain. But it’s referring pain to the head, and the face and the neck. And that’s where they’re like, oh, I don’t have a place in my head or face that hurts. It’s just generalized, it’s not very specific. When I’m evaluating someone with cervicogenic headache, it’s very easy to touch a specific area and generate that same exact headache pain.

Joe Coe  18:13

It made me think of something you said earlier, which is going to be I think, a lightning rod statement, that we’re over stretching our necks.

18:22

There’s a difference between like actively moving, like, “Oh, it feels so tight, I can’t move it,” and do like active range of motion to kind of restore your ability to move the neck, because that’s more of a perception issue. You feel like you can’t move it, right? So you might be like stuck and can’t move it. And then I go and rotate your neck myself and I can get to full n range of motion. No problem. That’s more due to your proprioception and how you feel that you can move and stabilize your neck. And we can work on that by just actively moving the neck and slowly pushing into those ranges of motion. With somebody with an actual impairment, you won’t be able to move your neck and then when I go to try to move it and see how far you can get, I might be able to get a little bit further but I’m gonna hit a stopping point or point where you’re really in a whole lot of pain because I moved your neck in that direction. That shows me that there’s probably more likely that you have a musculoskeletal impairment that we need to address.

Joe Coe  19:21

Just fascinating. Thank you, Sam, for joining me on Talking Head Pain. I’m sure that our audience will learn a lot from the conversation.

Samuel Kelokates  19:30

Thanks for having me, Joe

Joe Coe  19:31

Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.

Narrator  19:48

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

Narrator  00:00

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

Dr. Elizabeth Leroux  00:10

It’s just crazy that after 12 years of training, I’m still asked, you know, to justify my medical recommendations to an insurance company.

Joe Coe  00:19

Bonjour, and welcome to a special Canadian edition of Talking Head Pain. I’m delighted to be here today with Dr. Leroux. She is the past president of the Canadian Headache Society and founder of both Migraine Quebec and Migraine Canada. How are you doing today, Dr. Leroux?

Dr. Elizabeth Leroux  00:33

I’m doing very well. I’m recovering from COVID. So you get a nice, rusty voice.

Joe Coe  00:39

And how are you feeling from that?

Dr. Elizabeth Leroux  00:41

I’m feeling actually very well. I’m very fortunate to have mild symptoms.

Joe Coe  00:46

And you had the vaccine and the booster?

Dr. Elizabeth Leroux  00:48

I did, the whole the whole thing. So it looks like we’re not completely done with this damned virus yet.

Joe Coe  00:55

But it’s good that your case is mild. So we’ll continue to go in that direction. I want to start this by asking you, Dr. Leroux, if you’ve ever had a migraine attack and what was the worst one like if you did?

01:08

So I do have migraine, since I’m in my 20s. I’m very fortunate to have very few at present time. But I can, for me most of my migraine episodes, I can remember them because they actually had repercussions on that day. So I remember one, I had to I was giving a talk about migraine, which was funny. And I had to I could not drive back home that night. I was an hour and a half drive and I had to pick a like take a room in a hotel. I remembered it was funny because I, my in my car I had like a lot of Maxalt samples, and I did not I was not using triptans at the time. I didn’t even treat and I just lay on my bed miserable. And then I slept on it and the next day it was okay. So another one I remember was my birthday party and I could not attend it for like four hours. So my friends said, “Okay, we’re gonna stay there until you’re better,” and I was better after sleeping. Then I started using triptans. And it really changed my life. So now I have my trusted triptans. But I experienced my first vestibular migraine two years ago in Calgary. And that was very scary. I knew what it was because, you know, I’m a headache specialist. But I just experienced a very severe vertigo, things were shaking in front of me, I couldn’t stand, I threw up in my sink. And then it stayed like that for an hour. And I was like, “Is this is this going to stop at some point?” And I just had like two auras for the very first time last year. Which also I knew I knew what they were obviously but it was in the middle of my clinic and I was about to inject a patient with Botox and I wondered you know, the aura is supposed to be 20 minutes, so I should be okay. So I’ve seen, I’ve seen different types of attacks myself and I’m, I’m actually grateful because I can understand what my patients go through without having too many of it so that- there’s no, I tell my patients there’s no need to convince me that migraine exists like I, I have it as well.

Joe Coe  03:09

You talked about vestibular migraine, can you explain what that is? A lot of people in our audience might not know that subset of migraine.

03:16

Yes, vestibular migraine is a work in progress. It’s not the fully scientifically accepted term yet, but it is migraine with symptoms such as dizziness and vertigo and instability. So it’s when the zone of the brain that is taking care of balance and staying stable, is impaired. We don’t know exactly how or why. But that’s a kind of migraine that is under a lot of scrutiny at present time. And it can be extremely disabling, if you can imagine having the migraine and being dizzy, and nauseated and unstable at the same time.

Joe Coe  03:51

Definitely, and thank you for sharing that with us so people can be better educated. I want to know, after reading your bio, what drew you to neurology and migraine in particular, and why did you create and devote so much energy into building migraine foundations and being part of the Canadian Headache Society?

04:13

Yeah, one could wonder. I chose neurology because I was, and I’m still fascinated by, let’s say the humanities of neurology, so language, memory, communication, art, that kind of thing. So for me, the brain was fascinating. So that was an easy choice. But then I thought I would go into dementia research and cognitive sciences because that’s, that’s what drew me there first. But one day I remember it was my first migraine clinic. And I met with people with migraine for the very first time. And I heard the stories and I saw many patients and they all told me how grateful they were to the physician that treated them, how miserable their lives had been, and also how better they were with proper care. And even those who were not doing that much better were so relieved to know that, you know, they we’re not alone in this, that they were not crazy. It was a very new experience for me in neurology. I also saw patients of all ages living with migraine. And so I decided to pursue that path. I will say it’s not an easy path because migraine is stigmatized and stigmatized for patients, but also for doctors who take care of it. Like it’s not a very glamorous specialty, I think things are changing. But when I did my choice, like 12 years ago, even more now, I can tell you, a lot of my attendings tried to discourage me from choosing this specialty. But I’m glad I persisted. And so from that very first feeling of seeing the suffering and wanting to help came the work for the associations I started, because I just realized how many people were suffering. And they had no associations. They were still in the closet if you want, I mean, all suffering alone. And so I said, “Well, you don’t have to be alone.” But who’s going to, you know, how, how is it in Canada, we have Epilepsy Association, and Multiple Sclerosis Association, Parkinson Association, and migraine, which is the most common of it all, and if you put all headache together, it’s a huge number of people, there is no association. So for me, it was like someone has to do it. So let’s, let’s do it. And I’ve, I’ve been very fortunate to work with great teams and meet incredible people along the way. And now both associations are charitable and growing. So I’m very happy to see the progress that we’ve made.

Joe Coe  06:35

We’re happy too, and the world is better that you went in this direction. You’re helping a lot of people. As a provider. Dr. Leroux, what are some of the challenges that you see with patients accessing treatments? And how much time do you spend advocating for your patients?

06:51

I will say that migraine is so common that the vast majority of people are seen in what we call primary care. So that’s like family medicine, not neurology. And I still hear a lot of the stories, I don’t want to hear those stories anymore. I mean, those stories are like I lived for 15 years without proper care, because I didn’t know that was better, because my family doctor didn’t know better. So I think we need to, one of my passion is to educate the health care providers so they can help their patients. So access to care. First, you have to find a doctor who knows about migraine and will take the time to work with you. Then you have to have access to treatments. And that’s treatments that can be medication that you cannot necessarily afford or that are not covered. Or it can be also behavioral therapy, like psychotherapy, or diet or nutrition. I’m a strong proponent of exercise as well. So there’s a lot of, there’s a global approach for migraine that takes a lot of money and takes a lot of support. And not everybody can have access to that. And then in the end, well I advocate in many ways. With Migraine Canada, we are fortunate to be able to interact with Canadian institutions that regulate medications, that’s a very important part of our work. On a more of a bread and butter, what is my day like thing, I can tell you I fill hours and hours of forms for our dear insurance companies. And if I knew, you know, when when you go to medicine, you never think about that. But then you wake up on Saturday morning with a pile of forms to fill. And this is, you know, this is part of our work and but it’s just crazy that after 12 years of training, I’m still asked, you know, to justify my medical recommendations to an insurance company. So I wish that that coverage gets easier. So more patients can actually have access. Because I fill the forms, but a lot of doctors will just not prescribe because they don’t want to spend the time filling the forms, which I can understand. But, but I hope that will evolve over time with less forms to fill. So we can, I can see more patients and help more of them.

Joe Coe  08:58

That’s a similar problem that we have here. I know personally, for a treatment that I was getting. My neurologist didn’t check the right box on a form. And they kept kicking it back. And I finally said, “Well, what do you need from this man to do like he’s busy? Tell me what you need him to do. And I’ll talk to his office.” And he was like, “I can’t believe that they kept kicking it back,” and he check the right box and then I got the treatment that I needed. But it delayed treatment by two to three months. Because you’re back and forth with the insurance companies office.

09:35

This is a circus. I mean, it’s a circus where there’s a doctor but not not only our time, it’s the time of our admin staff as well you know. If you can believe we’re still using a lot of faxes, so there’s like printing, faxing like filling this, filling that. The companies that produce the treatments have what we call patient support programs and they do help us a lot so I think I want to thank them. I mean it’s they’re making money of the drugs of course, but I think that’s a very useful service they are providing. And at the end of the day, the I’ve seen so many ridiculous questions, the worst of the worst, I think is, “Oh your patient is doing so well now that the treatment should be stopped.” And I’m like, “Would you ever see say that to someone with epilepsy, or hypertension or diabetes.” Like all the parameters are perfect, let’s just stop everything. But we have to fight that with education and information and letters, I write a lot of letters with references, scientific references, and I say, “Okay, here’s the argument. And as the president of the Canadian Headache Society,” I’ve done this with more power, because then we have an endorsed letter, for example, to combine Botox and a CGRP antibody. So we created the four page letter fully referenced, and we share it so that that brings more weight, I think, to the table than you know, a solo clinician having to write something. It’s already there for, for anybody to use. So you have to fight that kind of thing with proper information and try to organize and share resources as much as possible.

Joe Coe  11:07

Definitely, and two things you brought up really resonated with me. And I know with the migraine community, one, when we are on stable treatment, we’re scared that our insurance company is going to take us off of it. We hear about that happening all the time. And it’s as absurd as what you said, “You’re doing well. So stop one or more of the treatments that you’re on.” It really doesn’t make sense. And I’m glad that you are raising awareness on that issue. What would you be able to do, I know what I would be able to do as a patient without having to advocate for myself to access treatments. How would you be able to practice more medicine, if you didn’t have to do all this bureaucratic paperwork to get patients the medication that you as a, as an expert in this field are already prescribing?

11:51

I think I could probably see a bit more patients. But I think the big difference is for the clinicians, for whom the difference is I’m prescribing, or I’m not going through the trouble. And the insurance companies are probably very aware of this. And they know that if they put barriers, well, you know, some doctors might say, “I don’t have the time to do this.” And I think that’s where really the opportunity to treat more people is lost, I’ll give you an example. CGRP antibodies are, you know, can help people and they are quite well tolerated. So in theory, they could be prescribed in primary care. But the primary care doctors are so busy, that they will refer to neurology. And then when you refer to neurology, you have to wait in Canada, in some places more than a year, to be seen by a neurologist. And then you have to hope that you meet a neurologist who is versed into prescribing CGRP antibodies. I think it’s getting more and more of us, but not everybody. And if the neurologist is not versed into them, then they will refer to the headache specialist, which might be another. So it makes no sense to me to have to wait that long. You know, if you have multiple sclerosis, or if you have diabetes, I mean, you’re not going to wait three years to get proper care. So I understand headache does not kill anybody. But at some point, now that we have treatments that really can change lives, I hope that those delays can be shortened. And if there were less forms or easier to fill forms, that would allow more doctor to prescribe. And so more people to be treated.

Joe Coe  13:30

That’s my hope and our hope at the Global Healthy Living Foundation as well. I want to switch gears a little bit and talk about your work with Migraine Canada, an organization that we are very much aligned with. What are you most excited about that’s coming out of Migraine Canada? And what should our audience know about this amazing organization in Canada?

13:49

Well, I’m glad that we are aligned. And I’m actually very glad to do this podcast with you. So, thank you. Well, we want to allow people to live better lives. So to access knowledge and care and to be empowered. And I think that’s in every chronic disease, migraine is a chronic disease, it’s a neurological disease, you have to have all the information you need to make your own decisions because migraine is so diverse, that there is no one size fits all. So one of our big mojo is no one size fits all. Everybody has to find their own path with the help and guidance of providers or it can be really anybody you have to find your path. So I’m super excited to provide websites and resources and webinars and podcasts so people can learn. We also work very hard on a list of headache clinics across Canada. This is something we really get a lot. You know, where can I see a headache specialist in my area, that’s a demand that we see a lot. And then we also did our last or first “Move for Migraine Canada” campaign this year. So in every June it will happen again where people commit to do any way of moving or physical activity to raise money, so it was our first time. And finally, as I mentioned, we as a patient association, we can interact with all the authorities of the Canadian government that manage access to care and coverage. So for example, Canada for PCPA, and we work with those. So we can explain what migraine is and how important it is to have public coverage and coverage for medications. So, employers also programs are in our radar. So there’s, there’s so much we’re doing. And there’s so many people who are, are coming to us with ideas and a will to help. So I’m all excited, you can see there’s no end to, to what I would I would tell but just start by coming to our website or social media. And if you have ideas, or if you need anything, just send us a note and we’ll try to get to it.

Joe Coe  15:53

That’s wonderful. And for those listening you could find Migraine Canada at migrainecanada.org. And the the organization that Dr. Leroux mentioned, CADATH is the Canadian Agency for Drugs and Technologies and Health. Basically, it’s a body that helps regulate and approve medicines, as Dr. Leroux said. Something that we’re learning a lot about the Canadian Landscape as we’re working with groups such as yours to help amplify the voice of patients in this process. As a global organization, we’d like to hear from others around the world. So from your perspective, what would you want people in the world to know about migraine and related diseases?

16:38

Migraine is more than a headache, and it’s a neurological disease. I think those sentences are hammered down by many of us. And I think they are appropriate. I always tell also that it is diverse. And I think that’s so important. Because as a patient you cannot take for granted that someone’s story will be your story. That’s that’s extremely important. And also for providers, you know that they don’t expect to have quick tricks or quick fixes for patients. And it can be extremely disabling. Something, sometimes people see migraine as a benign headache or something that has no bearing on life. But as we know, some people’s lives are destroyed by migraine. So it’s a full spectrum of disability. But my key message to anybody’s listening here is that it can be controlled, it can be improved, and keep trying and seek relief. So there’s no there’s no point just losing hope and saying, “Okay, that’s the end.” So we can do something about migraine. So I think that it’s enough now of saying it doesn’t exist, I think we’re past that. But now we need to really bring the full gamut, the full list of treatments to people. So I would say frequent, diverse, disabling and can be controlled.

Joe Coe  17:49

I love that. And that last part really resonates with me because I have lived with migraine since my teens. And I thought for a very long time that I was well managed. And when I really took a step back and thought about the frequency of headache days, as opposed to migraine attacks, and the way that that was interfering in my life, in little and not so little ways, but mostly little ways. I was still working. I wasn’t pulling back on that. But it was impacting me in other ways. I wasn’t as active as I could be. I wasn’t living the life that I really had envisioned for myself, but I didn’t know that until I started to do advocacy work and work with the Global Healthy Living Foundation and really look at, is this okay for me? And why am I not trying these newer medications, when I’ve been on all these other medications for you know, two decades, and it’s something that we’re passionate about educating that it’s not okay to be just okay. That we can do better with all this innovation that’s out there. And with providers such as yourself, and organizations like Migraine Canada, and Global Healthy Living Foundation, groups that are pushing to increase access. You don’t have to settle. So I really, really appreciate that that was one of the things that you highlighted, that the world should know.

19:07

Yeah, that really, that really resonates. If I may add, I hear the story a lot. Because migraine often start when you’re young, and sometimes your parents lived with it, or one parent lived with it. So you learn to live with it. And then you you adapt and because there’s not a lot of support or recognition from the community, well, you understand that it’s there’s no point you know, like asking for help or talking about it. So I’ve seen a lot of people just managing the best they could. But now that we have like those treatments that work, some people say, “Oh my god, I had forgotten what it was, you know, not to have to think, because then I can do a bicycle ride. I can go to the restaurant. I can study like I want to study. I want to play with my kids.” So I think there’s a lot of underestimation of the migraine burden, what we call the migraine burden, and even what we call the interectile burden, which is in between attacks, all those decisions, all this mental load that people have to constantly watch, constantly monitor, constantly avoid. So I agree, I’ve seen quite a bit of patients now that thought they were okay or not that bad because you know, they were better than before. And when you do the headache diary and you look at all the headache days, even the milder ones or the ones that you think are not migraine, but they are, then you have kind of an epiphany. And they say, “Well, why don’t we try something?” And if you respond, well you know, that people come back, and they have those smiles on their faces, and that’s priceless. Did you just did- they tell, they tell you that you just gave back their life. And that’s exactly why I went to medicine. So yeah, I mean, it’s, that’s something that changed in my practice over the last few years that I realized that myself, even being an advocate, even being a specialist, even being super aware, I was under estimating my patients burden.

Joe Coe  21:06

Amazing, I get shocked to this day. And I know this is reality that people don’t have never experienced a migraine let alone a headache. Because I lived with a headache every day. And I just thought everyone had like it was a normal experience. And there are now I don’t live with a headache every day. And this past weekend, I was able to and I posted this on my Twitter, I woke up with a bad attack, which really hasn’t happened in a while. And in the past, that bad attack would mean I would be out for a day or two. And I took medication, and was able to go for a walk and jog about four hours later. And after that, I was like, wow, this is amazing. And then I really thought about it. And I was like this is amazing, but I’m also angry, because there are so many people that don’t have access to that medication for many, many reasons. And they wouldn’t be able to go on that walk and experience nature and get that stress relief, and do all the things that I was able to do that day on my weekend and get my weekend back. Because we are involved in broken systems, healthcare systems in Canada, in America, pretty much everywhere. We’re not working toward getting people their life back. And your work is so important in doing that. And we really appreciate that you’re a friend and that your organizations are doing this important work. And we look forward to continuing and strengthening the relationship and building and growing together.

22:37

Well, I’m glad to hear it. And I wish that everybody can can treat their migraine attacks just like you described. Because that’s what you describe is also a benefit on intensity and response to acute therapy that we see with appropriate prevention. So absolutely. You know, Migraine Canada is there. We’re really young. I mean, we’re still growing and we have lots to learn. But I think we’re on the right path. And I’m excited for what’s going to happen over the next few years.

Joe Coe  23:06

Amazing. Well thank you so much for your time and energy and we really appreciate it. And we hope that you continue to feel better while battling COVID.

Dr. Elizabeth Leroux  23:17

I will and then I’ll be back in the clinic to treat my patients with happiness.

Joe Coe  23:22

Thank you so much for listening to this episode of Talking Head Pain, the podcast confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.

Narrator  23:38

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

Narrator  00:00

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

Dr. Nicole Rosendale  00:10

There’s been some studies looking at how childhood experiences of trauma affect migraine later in life. But that hasn’t really been looked at within LGBTQ individuals. And so this was a step towards understanding that connection a little bit more clearly.

Joe Coe  00:25

Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m here today with Dr. Rosendale, who is the principal investigator of a study called Migraine, Migraine Disability, Trauma and Discrimination in Sexual and Gender Minority Individuals. I know that’s a mouthful, but we’ll break it down so you understand why it is important to you. It’s important to note that this research was conducted through the Pride Study, which is a large scale long term national health study of people who identify as lesbian, gay, bisexual, transgender, queer, or other sexual or gender minority. So Dr. Rosendale, thank you so much for being on Talking Head Pain. I’m so looking forward to this discussion.

01:15

Thank you for having me. I’m delighted to be here.

Joe Coe  01:18

I don’t want to bury the lead. What do you think is the most important thing that people should know from this research that you just conducted?

01:25

So the great thing about this study is it’s really one of the first investigations looking exclusively at migraine and the experiences of LGBTQ+ individuals who have migraine headache. And so we’ve found that not surprisingly, migraine is common as it is in in other individuals as well. And we’ve identified some really interesting differences in kind of care experiences and potential barriers to accessing care for migraine headache, in the community that I think are good for all of us to know about.

Joe Coe  01:59

I so agree when I saw this study, and it was actually passed along to me from my Pride Center that knows that I do this podcast, that I live with migraine, that I’m an activist in our community and said, “You should know this.” And I said, we might have a connection to this study network. And here we are today, it’s really important issue. I want to know what you think migraine patients and/or the LGBT community should know about this research in particular? How does it impact our lives?

02:31

Well, I think there’s a couple of aspects of this research that really highlighted and kind of emphasized things that we may have peripherally known, but now we kind of know it with with more insecurity or or more, we know it a little bit more definitively, if you will. One of the things is that social stressors and experiences of discrimination as folks navigate their life affect migraine severity, and disability and frequency. And so that is something that has been looked at in other communities, particularly predominantly cisgender women. There’s been some studies looking at how childhood experiences of trauma affect migraine later in life. But that hasn’t really been looked at within LGBTQ individuals. And so this was a step towards understanding that connection a little bit more clearly. The other piece of this that I think is really important is that an aspect of this study that we looked at was really access to care and kind of what kind of care folks with migraine were receiving. And one thing that arose out of that was there are certain barriers that people access. And there are, you know, not everyone who had migraine headache who was interested in seeing a neurologist for their headache had access to that, right. And when we looked at specifically what medications people were using for migraine, there were some interesting trends that we saw. And a lot of people using kind of over the counter medications or using more of the natural remedies like riboflavin and magnesium rather than using more pharmaceutical treatments. And so I think that that’s just a piece for folks who are experiencing migraine to really understand, whether you’re LGBTQ or not, is really how to advocate for yourself and how to advocate and ensure that you’re getting access to specialist care if that’s what you would like and if that’s what you need. And also that within that there are opportunities for access to newer medications or potentially more efficacious medications to help reduce the impact that migraine has on day to day life because migraine is quite disabling. And it can be a big component of how people live and change how people function.

Joe Coe  04:44

And did you see a difference between, or did you even get to look at the difference between episodic and chronic migraine patients?

04:51

So interestingly, when we looked at the distinction between episodic and chronic and really that breakdown is you know, 15 Headache days per month i the barrier or the kind of a definition of chronic migraine, we didn’t actually see a significant difference between folks who were experiencing episodic versus chronic migraine. When we looked again, at that kind of intersection between experiences of trauma and discrimination, we didn’t break down the sample into or kind of the participants into folks who are experiencing episodic migraine versus chronic migraine. We really just kind of looked at all comers with migraine. And part of that was just statistically in terms of the grouping and making sure that we had enough people in the different groups that we could kind of look at overall trends. I certainly think that this is just a start to the research. There’s more that needs to be done in this question, and in this community. So hopefully, this will just start generating more and more questions for folks to research later.

Joe Coe  05:48

It’s so exciting to me. I’ve been asking for stuff like this for about six or seven years. I go to medical conferences and am like, “Where are the LGBTQ neurologists and practitioners? And where is this happening?” And when I saw this, my eyes lit up, and I had to speak to you. I’m curious about how you and your fellow researchers define trauma, because that’s kind of a very loaded word. And it means something different to so many different people. So it might be helpful to understand how you define trauma.

06:26

Absolutely. So for this particular study, it was a very broad definition. And we somewhat arbitrarily I kind of acknowledged, dichotomize between what we labeled as trauma in the study itself, which was experiences of essentially physical violence, sexual assault, experiences similar to that. And we looked also at experiences of discrimination. So unequal treatment in accessing services, harassment in public, barriers to accessing education, employment, etc. And I will fully acknowledge that this is, again, just the start to this conversation. I think there’s more work definitely to be done and diving into this a little bit more. And some of were this broad definition and kind of how inclusive we were, in terms of what we looked at came from, is really what what had been used in the Pride Study, and what’s continuing to be used kind of within the cohort, that’s also undergoing refinement. So we actually collected our data in 2018 for this study that just got published. And so the since that time, there has been kind of other other iterations of this definition and how this is being discussed and looked at within the Pride Study. So as with everything in medicine, there is kind of ongoing understanding and more nuancing. But I will say that, I think, to some extent, there was a benefit in keeping it broad, because there is a difference in experience. But that doesn’t necessarily mean that just because folks don’t experience a more violent type of trauma, that that’s not affecting their health, and that that’s not affecting them, their migraine and vice versa. So I do actually think that it was useful in some way, particularly because this is kind of the first step into understanding this question and this interaction between these experiences in migraine, that really keeping it brought allowed us to kind of open up the field for other questions and other researchers, hopefully to kind of step into this space. And really drill down a little bit more on what’s driving that how we can help and you know, other kind of mechanistic connections between these experiences and then migraine disability.

Joe Coe  08:37

I totally agree. And I am not a researcher. So I could say this as a non researcher, as a member of the community, and as a migraine patient. Trauma and how we define it macro micro aggressions, however want to look at it, we really don’t know how it really impacts us on a deep level. And I think studies like this are so important, because it brings it into the public discourse. It brings this this idea that, you know, adverse childhood events, which we know are studied in many different ways in many different areas, impact our community and I always had a personal theory that it increased my migraine intensity and sped up my my predisposition to having migraine. But of course, I’m an n of one and there hasn’t been much formalized studies around that. So seeing this is so exciting. And it leads me to my next question, that it’s so important that leaders in the field such as yourself, push this type of research and engage in it. Why did you become a neurologist and why is this your passion?

09:46

Such a good question. So for me, I was amazed by neurology as a field and then also just so grateful for the experiences that I had in my training and working with my patients with neurologic illnesses that that it just drew me in. So I was actually a literature major in undergrad, and so I feel like I’ve always kind of had this sense of questioning who we are and how society shapes us and influences us. And so within that neurology just just drew me in, right. It’s the study of such a large component of what makes us human, and what makes us who we are as people. So, so, so interesting to me. And then I think the this research in particular, you know, as a member of the community myself, I felt like it was very important to infuse activism and social justice and health equity for the community into my work. When I entered the field, there wasn’t a lot of kind of understanding of why it was important in neurology, and there wasn’t a lot of neurologists kind of working in this space. And so really, I’ve had the privilege to start blazing that trail of kind of arguing for why this is important, and why this community needs to be on the radar for neurologists. And as part of that, I think, doing research is really important so that we can add some of this objective data, right, some of the numbers that might convince people who may not see that connection, and helping them to make that connection in their clinical practice. So I think for me, the the research piece of things is really important, again, from that advocacy standpoint, to give us the information of what our patients are experiencing, what the needs of the community are, so that we can really be thoughtful and scientific as we go forward in in how to improve neurologic health for LGBTQ individuals.

Joe Coe  11:37

Would it be fair to say that patient reported outcome research, like this, is important part of activism in both the chronic disease community and the LGBTQ plus community?

11:52

I absolutely think that’s, that’s very reasonable to say. You know, many times within our work as clinicians, our goal is to help the person live as healthy of a life as they can. And one of the really important pieces of that, particularly within neurology, is really looking at function. How does what the person is experiencing, how does that affect their day to day function, their ability to work, their relationships, their interactions. And so we’re not going to get that from different types of research, other than kind of having the patient reported outcomes, right. Like, that’s a very important piece of what needs to be focused on and kind of reasonable outcome to look at. And then also, I think, within the LGBTQ community, you know, it gives folks a voice in what is important to them, how this is affecting their life. And that’s often not been something that the LGBTQ community has been empowered to do or had the opportunity to do within the healthcare system. That is certainly changing. And that’s fantastic that it’s changing. And so I’m really honored to be part of that movement to really focus on what the needs of the community are, and then tailoring how we can provide care to try to meet those needs.

Joe Coe  13:05

Amazing. And I so agree and commend that work. And it’s super important. So we touched a lot on how this impacts patients and what it means for patients, both that are LGBTQ and have migraine and obviously, the intersection of both of those identities. How can this research help your peers, your other health care providers and/or researchers better address health disparities?

13:31

Such an important question, I think one of the big pieces of that is really just highlighting that the LGBTQ community is a community in need of further research and is in need of, you know, attention within this space, but that there are experiences that may be different from other communities that folks are caring for. And so just to practice, kind of open minded inclusive questions, really kind of asking about someone’s life experience and what what they have experienced, what they’re currently experiencing, and understanding how that interplays with their migraine, I think is very important. The other piece that I think is is important for my fellow neurologists, is really just thinking about the importance of mental health, which I think many folks who are caring for people with migraine also understand on a larger context, but this just helps to emphasize that connection. It’s definitely something that came through powerfully in this study as being an important component of migraine related disability. And I think as challenging as it can sometimes be to connect folks to mental health services, it is very important. And so I think that that’s another piece of this study that that came through.

Joe Coe  14:45

Definitely and there’s so much to be done on mental health and really, particularly with the LGBT community, getting people that aren’t going to be damaging when you when you do go to a clinician and that clinician patient relationship and match is really hard and is an art. It leads me to one of my last questions. What’s next? What other questions arose from this research? What are you thinking about after doing it?

15:15

Such a good question, and there are so many, so one of the directions to go. I think one of the pieces that really deserves a bit more of attention in and of itself is really this question of access to care and quality of care within migraine treatment for LGBTQ individuals. That was a piece that we had included in this study. But unfortunately, we couldn’t dive as deeply into it just because of the nature of the questionnaire was already quite long. And, you know, the more questions we asked, the longer someone would would need to take to take studies. And we wanted to be mindful of that. So I think that there are a number of questions in terms of that access to care piece that really deserves its own study and its own kind of separate attention, whether that is through more qualitative methods. So kind of interviewing folks who are part of the community and have migraine, about what their care experiences are like, any barriers or facilitators of care, because I think that those are equally important to identify. Or whether it’s more kind of mixed methods and looking at kind of a combination of more of those qualitative experiences, and you know, those kinds of responses in addition to more validated scales that can be compared to other groups and other communities. So that I think is a an important piece. And then, as we talked about earlier, in the, in the interview, really driving down on this, the question of trauma and discrimination. One of the kind of questions that we played with a little bit in this study was really thinking about more of this idea of cumulative effect of these experiences over someone’s life. We weren’t able to address that specifically in our study, it just wasn’t designed for this way or to answer that question, but that I think, is really intriguing to me. And again, kind of harking back to the research that’s already been done in other communities, thinking about adverse childhood experiences, thinking about, you know, how our early life or even our prior experiences, or experiencing discrimination over a longer period of time, how that manifests in the body, and in particular, migraine, I think, is a really interesting question. And so there was a signal towards that being something that would be important to look at in our study, we actually, as a, what we call it, sensitivity analysis. So just kind of exploring a question, if you will, we did look at kind of the number of different experiences that someone reported, so how many different types of trauma and discrimination they reported and looked at that association with migraine disability, and there did seem to be a signal that the more number or the higher the number, the higher the association with or that there was in association with migraine disability. And so I think that that’s kind of an intriguing direction going forward is looking at that more cumulative effect, and seeing how that actually plays out in LGBTQ individuals with migraine.

Joe Coe  18:14

Now, I’m people can’t see, but I actually got chills listening to you say that, because it’s such for those of us that have lived have this lived experience, it’s so validating, to hear that there is a connection, that it’s not in our head, and that there are folks like you that are pushing the boundary here in really smart ways to advance health and wellness. I so appreciate your work, we at GHLF appreciate your work, and hope to support it and amplify it in the ways that we can.

Dr. Nicole Rosendale  18:49

Absolutely thank you so much.

Joe Coe  18:51

Is there anything that I didn’t ask that you wanted me to ask?

18:53

You know, I think we we’ve talked a lot about some of the most important pieces of of though the work and kind of directions forward. I think the other aspect of a kind of another direction forward that would be really intriguing to is, again, kind of thinking of this intersectional approach, right? You were just mentioning how there’s a lot of different silos of this research happening. And I think the next frontier is really trying to understand how an individual comes to the healthcare system or comes into and kind of lives their life, holding all of the various identities that they have, right? So not only just focusing on sexual orientation, gender identity, gender expression, but also how their race, their socioeconomic status, their you know, access to housing or not and how all of those kind of piece together I think is going to be another vanguard of of research that hopefully we can get to very shortly.

Joe Coe  19:52

This was lovely. I really appreciate your time. Great interview. We got a lot done and covered and I think that our community is better for it.

Dr. Nicole Rosendale  20:01

Thank you so much for the opportunity.

Joe Coe  20:04

Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe and I will see you next time.

Narrator  20:20

Be inspired, supported, and empowered. This is the Flobal Healthy Living Foundation Podcast Network.

Narrator  00:00

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

Joe Coe  00:10

Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. Navigating life with migraine can be tough. There are so many elements of our lives that are simply out of our control; from the stressors in our daily life to the weather forecasts in a given day, even to the rooms we’re in. Today’s guest on Talking Head Pain focuses on the space that we are able to take control of. Danielle Fujii is a migraine patient, environmental designer, and creator of ZDen, a sleep tent specifically designed for people with migraine to help get a better night’s sleep. Danielle, how are you today?

Danielle Fujii  00:51

I’m doing great. Thank you.

Joe Coe  00:53

And how are you feeling?

Danielle Fujii  00:54

Today is a good day. I’m feeling great, actually. It’s not too hot. It’s not too bright out. So it’s a good day. How about yourself?

Joe Coe  01:02

I’m good. I’m living the dream, as they say.

Danielle Fujii  01:06

Nice.

Joe Coe  01:07

So let’s jump right into my first question. Can you describe your worst migraine attack?

Danielle Fujii  01:12

I think my worst migraine experience, although at the time, I did not know that it was a migraine because I hadn’t been officially diagnosed was when we were on vacation in Hawaii. And I didn’t realize at the time though, that light and nausea and vomiting, unfortunately, are my auras. And I thought that I had eaten something bad in Hawaii. But in reality it was it’s extremely bright in Hawaii. It’s gorgeous. But it’s bright outside. And so I was while everybody else was out, I was sick probably for about three days in the room with the blackout curtains that they did have at the hotel that wouldn’t close in the middle. So there was still light in the room. But I was I just curled up in a ball and curled up in the bathroom worshipping the Porcelain God for three days, until I finally said, “I think I have to go see a doctor on the on the island.” And they gave me a pain and an anti-nausea injection. And I walked out feeling like an a new person. I mean, I felt so much better. And it was at the time, like I said, I didn’t even know that it was a migraine, but probably about a year not even a year later, when I was officially diagnosed and every time since I’ve had to go in to the emergency room or to urgent care, it’s always the same thing that I need. It’s an anti-nausea and pain medication. So I would say it was the worst only because I was out to have a wonderful time with my family. And it was ruined because of a migraine.

Joe Coe  02:52

Thank you for sharing that experience with us. It’s so important for people to know that we can plan these dream vacations and trips and a migraine attack can really mess it all up. And it’s not our choice. I really am intrigued by your background as an environmental designer and a person living with migraine. Can you share with our audience what environmental design is and how are you have used that expertise and information to help people that live with migraine related disorders?

Danielle Fujii  03:26

I would say that environmental design is designing and creating the space that surrounds all of us. Actually, when I went to school back in the late 80s, environmental design was all encompassing whether it was architecture, visual merchandising, so how stores fronts and interiors of stores are set up, interior design. It was even fashion, it was kind of a broad mix of everything. And so I’ve kind of taken the environmental design side and use that to be a design consultant now where I do a lot of graphics. So everything that you see that’s around your environment, such as billboards, PowerPoint presentations, ads in newspapers, logos, etc. Also designing interiors, so interiors, more along the lines of how the space is in which you live. So the colors, the windows locations, the skylights, how much light that you like to have, and I’ve kind of morphed that into learning more about the environment I guess that I’m in personally for when I started getting migraines and being a lot more conscious of the way the light comes into the room, the way that it might reflect off the neighbor’s wall that’s next to you. Or making sure that skylights have integrated, built in shade so that you can close them so you can have as much light as you want when you’re having an amazing, great day, and you’re not having a light sensitivity event. But you can also close those so that you can still be able to enjoy and be able to tolerate the day without feeling sick or triggering a major migraine. And when I say major, I mean one where you’re going to have to feel like you’re gonna crawl into a hole and spend the rest of the day doing absolutely nothing but being in the complete dark.

Joe Coe  05:25

I thought it was so interesting when we spoke before this interview, about how environmental design can be used to help migraine patients. We often hear about environmental triggers and all the ways in which stimulation can impact us when we live with migraine, and there are things that we can control and things that we can’t control. And it sounds like environmental design is something that we can control. So it’s really interesting to bridge those worlds. I would love to know what your biggest design, environmental design faux pas is or what what greats that you if you see in the world from an environmental design perspective?

Danielle Fujii  06:05

Near us right now there’s a new mall was- I shouldn’t say a new mall was built. A mall was completely redone, it’s a Westfield Valley Fair Mall. And what they did is they took out all of the overhead walkways, it’s an interior mall, it’s an inside mall, and they put in all windows, and skylights, which are gorgeous, which are amazing looking. But unfortunately, when you walk through, and if you’re, you feel like you have to have sunglasses on when you’re on the inside of the mall, which I don’t like. Obviously, if I’m feeling fine it for me, if it’s a it’s a it’s a beautiful blue sky day, no problem. If it’s a hazy day, that’s a big problem, because there’s so much white and glare. And when you enter into some of these malls, and you see that, it’s it’s almost overwhelming. And I know that it’s you know, it’s not just going to affect people who have migraines, it’s also going to affect people who even just maybe just have like a regular headache. If you have ADHD, if you have a brain injury. Or if you have epilepsy, there’s these certain things that where there’s too much light is not a good thing. And in these malls, there’s nothing they can ever do about it, it’s not like you can cover these gorgeous skylights and make it any darker. And I’m not saying that, of course, it’s beautiful. It’s absolutely gorgeous. But it’s different than before when it was an enclosed environment and you had artificial lighting. And I know that artificial lighting is also an issue for some people, especially the new LED lights. If you, LED lights, although you can’t see it with your naked eye, the Refresh is different than like an incandescent bulb. And I mean, obviously, we know that fluorescents are also bad because those flicker. But LED lights, if you were to take your cell phone and to look at an LED light and do a slow mo, a slow motion recording of an LED light, and then you replayed it, you would see that it actually flickers almost, you know, almost like a like a an old movie where it’s flickering. And you could actually see that and I think that that is a reason why there’s people who have or in the migraine community who complain about LED lights, because they seem to be more triggering. And I don’t know if that has anything to do with our migraines the ones that I get because we did switch during you know, it was environmentally friendly. We switched out all of our lights to be LED lights when they first came out probably about, I want to say maybe eight to 10 years ago, we switched them all out. And around that time is when I was officially diagnosed with having migraines. Whether or not there really is a correlation or it’s age related or hormone related, who really knows. But I do know that those are some of the things like in environmentally that just aren’t great.

Joe Coe  09:09

Oh, I love that that was so important for our listeners to hear that things that are seemingly beautiful and well intended, like these gorgeous windows and this revamped indoor space that’s beautiful to the naked eye, can impact people with invisible diseases that we wouldn’t necessarily know unless we live with it. It really speaks to how we have to be intentional when we’re creating spaces in the world that are accessible and accommodating to people with multiple and various different types of abilities and disabilities etc. So it really is a beautiful example because it from how you describe it Danielle, a really stunning place that can really be impactful in a negative way for folks that like us that live with migraine. So I am really excited to talk about you leveraging these tactics and techniques and expertise. You develop this product called ZDen, can you talk to us about what ZDen is and why you created it?

Danielle Fujii  10:22

Okay, let’s I’ll start with the why I created it first. So I have really bad migraines, as you know. And my aura, so what triggers my migraines are light. So if it’s very, very bright and glaring, and it’s, I should say that that’s not on an everyday basis. So it has to be if I’m not feeling maybe my best, then a migraine can be triggered by light. So it can be triggered while I’m driving. And the feeling that I get is an overwhelming sense of car sickness, that’s the best way I could describe it. Like, it’s instantaneous, like I just stepped off the teacup ride at the amusement park where I just feel completely nauseous immediately. When I’m at home, I have blackout roll down shades. And I also have shutters. But light can still show through the cracks and the seams of both of those including blackout curtains, which I don’t have. But I also know that that’s the case. So when I was having a really bad migraine, it felt like the tiny little bits of light that were coming through the curtains were like a laser being shined in my eyes. So think of going to the eye doctor, and they’re doing an eye exam, and they want to look into your eye and they shine the little beam or the I’m not exactly sure what type of light it is, but they shine it into your eye. And you can really feel it like it doesn’t hurt. But it’s definitely sensitive, you could feel it, it’s very sensitive to your eyes. That’s what it feels like accompanied by nausea and pain that feels like your head is being squeezed into a vise. If I could, if that’s the best way to describe it. When I was having a particularly bad episode, the extra light in the room, as small as it was the light on the fan, the light on my phone charging the light on the alarm system, all of those lights were really bothersome. So my husband and son came in and they hung up black plastic around the room and, not to sound inconsiderate, but while they were taking the time to hang up the black plastic, because my vision was affected, and my head was hurting, my ears and my the audio sound was extra sensitive. So even them just setting that up was it felt like it was making my migraine worse. But when they got it all set up, and it was very, very dark, a tiny bit of light here and there, but so subtle. It was like it was suddenly this perfect environment. And I laid there and as I was finally being able to fall asleep because it was dark enough, and I felt like I could just relax, I came up with the idea for ZDen. And that is was to be able to create a space that was completely dark, pitch dark. But that you could set up on a whim and not have to say like, “Hey, can you come up and hang in this plastic? Or can we come in and put electrical tape on all the little lights in the room?” Things that were inside that couldn’t be changed. Originally I thought like, “Oh, can I create this box that you could sleep in,” but I didn’t want to- a box obviously if you put your whole body in, it’s not something you can just pack up and then put away and have your room looking as gorgeous as it was before. And then also, it’s not something that I felt that you could set up instantaneously as you’re feeling horrible, and you just want to lay down and relax. So ZDen is a it’s portable, it’s pop up just like you know, there’s beach tents that are like this. There’s camping tents that are like this, but the main difference is is that it’s completely black out. It blocks out up to 99% of light. The differentiator I guess from black out curtains is that it blocks light within your sleep space without having to have the light bleeds from your curtains and but it also blocks outside light. So if you didn’t have blackout curtains and you had a skylight in your room or you lived in a gorgeous loft, and you had no curtains, no shades whatsoever, and you didn’t know you were gonna get migraines, but now you have migraines and it’s not like you’re gonna say, “Well, I’m going to move. I can’t there’s no window coverings I can put on my beautiful loft windows.” This is kind of an alternative for that where you can pop it open. You can crawl inside it’s your upper body and your head and you can close the curtains and you can kind of have that quiet sleep space. It’s not soundproof, but it kind of gives you this kind of it, for myself personally like, and you’re crawling into a space where it’s peaceful, and it’s private, and you can just finally relax. And in conjunction with your migraine medication or your regular regiment, you can go to sleep, so that you can recover.

Joe Coe  15:26

What I loved when I was looking at your website and reading about the product was that it felt like it was like a little mini camping experience in your bed. It just had the same feel that I could imagine people that like weighted blankets could feel like they’re secure, and in a good space. And I just thought it was so interesting and, and cool that you took this pain and this issue that you are experiencing, and you said, You know what, I’m going to do something about it. And I’m going to use the what I have, in my head, the skills that I have to try to make my life better and ultimately other people’s lives better. And I think that we all can find ways that we could do that. And you used environmental design, I use my voice in a podcast. So it’s, um, all different ways that as advocates we can, you know, make the world better. So I love your story. And just that you’re using your talents to try to help folks.

Danielle Fujii  16:28

Thank you.

Joe Coe  16:29

So is there anything about your story or ZDen that I didn’t cover that you think that we should?

Danielle Fujii  16:36

Here’s another comparison, just to throw that out, throw it out there. A lot of people say, “Well, an eye mask is similar.” But I don’t know, and this is me personally, but for me personally, when I’m having a migraine event, putting anything on my face, that or anything around my head is not comfortable. It doesn’t mean that it it, an eye mask won’t work for somebody, but an eye mask won’t work for me personally. So I don’t have to worry about having that pressure on my face. Although I get the dark environment, I can still blink my eyes so I don’t have to worry about dry eyes. I don’t have to worry about the pressure on my face. So I don’t have to worry about my migraine getting aggravated even more. I can actually just be comfortable. I feel like I’m sleeping in my bed at night in a pitch dark room. It’s because it’s you know, it’s very similar to that experience.

Joe Coe  17:35

What I think is so common among those of us that live with migraine is that we do all these things at home to relieve our pain. I don’t advise people doing what I did. I put my head in the freezer for like moments to try to like just relieve some pain. People have used bag clips on pressure points to help relieve pain. And it’s just really we’re very resilient and ingenious population because we try to really find ways to relieve it and we’re not actually vampires like some people might think we are. We do like sunlight. It just hurts us. Danielle, thank you for joining me on Talking Head Pain and sharing your passion for creating better spaces for people with migraine.

Danielle Fujii  18:27

I appreciate it, thanks for having me.

Joe Coe  18:30

My pleasure. And thank you our listeners for listening to Talking Head Pain, the podcast that always confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.

Narrator  18:46

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

Narrator  00:00

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

Joe Coe  00:10

Welcome to Talking Head Pain, the podcast that confronts head pain, head on. I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation and a migraine patient myself for over 20 years. On today’s episode, I’m joined by Dr. Sara Crystal, who is also a migraine patient, a headache specialist, and Medical Director at Cove, a telemedicine service providing care to patients with migraine. Dr. Crystal, thank you for joining us on Talking Head Pain today.

Dr. Sara Crystal  00:37

Thank you so much for having me today. I’m so excited to speak with you.

Joe Coe  00:41

My pleasure. So can you give us a little bit of information about your background, what brought you to headache and migraine medicine,

00:48

I started out my career as a physical therapist. And that’s how I became interested in neurology, really, working with patients with stroke and brain injury. But I became interested in migraines, specifically, as a resident seeing how much patients could improve in just a short while. Just watching patients walk out, you know better than they walked in. And really my own experience with migraine too, is what drew me to it. I’ve experienced migraines since I was 12 or 13. And interestingly, although I had a bunch of diagnostic tests as a child, I don’t remember getting any specific treatment to help me. So it was really, probably 15 years later, as a medical student actually doing a rotation with a family doc, and I mentioned my migraines. And he said, “Why don’t you try a triptan,” and he gave me a sample of something. And that was that was actually, you know, pretty, pretty life changing to know that there was a migraine specific treatment, but I had to wait that long for for relief.

Joe Coe  01:52

And have you found that being a physician has helped you better advocate for yourself?

01:58

Yeah, I think so. I mean, in some ways, doctors are really are the worst patients because sometimes symptoms that we take seriously in patients we try to, you know, tend to minimize in ourselves. Also, I mean, I know, you know, when I experienced something I know, okay, this is this is within the range, you know, range of normal, not not too worrisome, but but it does help. So, you know, and obviously not everybody has that advantage. So it’s really important for for people to to be armed with knowledge how, however they can get it so they can, you know, get appropriate treatment for their migraine condition.

Joe Coe  02:34

Something I like to ask all of my guests that live with migraine, what was your worst migraine attack like? What did it feel like? What was the experience?

02:43

I experienced my worst migraine attacks during pregnancy. And to this day, I’m not sure if these attacks were what every migraine would end up without medication because that’s I was really trying to avoid medication or they were just something extra. And I remember calling my doctor I was I was just flat out in bed and just vomiting like crazy and and then the advice that I got was, “Go drive yourself to Dunkin Donuts and get a coffee.” And I was just I didn’t know what to do with that. I was just- almost it was almost laughable. The idea that I could even get out of bed and get in a car and get myself a coffee and that that was all I would needed to help me it was it was just unreal,

Joe Coe  03:29

R2eally insane. Reminds me of an experience I had last month in an urgent care setting. I was having an attack, but also thought I might have had COVID. And I went in and I said, “Here’s the medications I’m on. I have migraine, I’m having a really bad attack, but I think something else is happening.” And they were like, “Well, your medications aren’t working. If you’re having a migraine,” I was like it doesn’t really work that way. But give me my COVID test and let me go home. I ended up having COVID. I got, I was tested positive the next day, not in the clinic, at home. So that was an interesting experience. People that don’t really get it, I think is the common theme that like, this isn’t really happening or it’s not that bad or your treatments not working. This person knew nothing about migraine treatment or how it worked and was quite dismissive.

Dr. Sara Crystal  04:24

It’s awful.

Joe Coe  04:25

I understand that feeling. And I hope they at least recommended an iced coffee and not a hot coffee because I couldn’t imagine having a hot coffee. So I think it’s super interesting, Dr. Crystal, that you have this physical therapy background and you’re also a neurologist, do you have any practical tips for migraine patients that you think folks should know?

04:49

Yeah, so I think that background does help me think a lot about ergonomics and you know the role they may be playing in, you know, potentially triggering attacks. I remember doing, you know, telemedicine at the beginning of COVID. And obviously there were many reasons you know for for people to report worsening headaches but that was you know, abrupt change to work from home and people didn’t have the right setup. And so, you know, I think addressing at least that piece of it was helpful you know, thinking about your, your setup, your computer, how is your neck position when you’re when you’re working. So I like bringing that background and then just in general, because the you know, the cervical spine is so important in, you know, there’s so many there’s so much crosstalk between the trigeminal nucleus where you know, migraine comes from and the cervical spine that migraine can manifest itself as neck pain, and conversely, neck pathology can trigger migraines. So having that background, being able to address that with patients, I think helps.

Joe Coe  05:55

It’s so important, particularly as you said, as we have adapted and our spaces have changed and we think about how we engage in the world. That ties into my next question. Last year, you co-authored a paper on telehealth and telemedicine platforms like Cove, how they can increase access to specialist care. Are you still seeing that same access issue as the pandemic might be ending or becoming more of the norm as opposed to this on a one time incident? And can you talk a little bit more about telehealth and its role in migraine?

06:36

I think really there, even prior to COVID, there were and there still are, you know, large areas of the country where people don’t have access to specialty level care for headaches. So, you know, we know that, you know, on the east coast, on the West Coast, there’s, you know, a number of specialists, but, you know, there’s large, large parts of the country where patients just don’t have access to specialty level care. So, you know, that’s where Cove and telemedicine can can really help bridge that gap to access. During COVID, patients that normally had access, you know,  couldn’t get in to see their doctors but I think you know, there was a role before and, and will continue to be a role for patients really everywhere.

Joe Coe  07:22

And we have both providers and patients listen to Talking Head Pain, what’s some advice you would give a patient and a provider to make the most of telehealth appointments? So first, what you would tell patients how to prep for them and then to your fellow providers, what you would share with them to get the most out of a visit via telehealth.

07:45

So from the patient perspective, really just having as much data when you come into the appointment. So a migraine diary, not everybody loves to keep them but they really I think are very helpful to look at triggers, look at you know, medications, taken acute medications, taken whether or not they helped. So look at you know, if you started a preventive medication comparing before and after to see if we’re, you know, going in the right direction in terms of reduction in frequency, look at timing with menstrual periods for women. Bringing in that data when you when you come in to the appointment. From the provider standpoint, really having that information is is key, if possible, reviewing that information, even before the appointment if it’s available, so that you can target your, your visit your your questions appropriately,

Joe Coe  08:37

Definetely, and have you found either through your own experience or hearing from colleagues how to create that trust and bond via this digital mechanism of telehealth? Because it’s such an intimate experience going to a provider especially when you’re in pain.

08:55

Yeah, it’s it’s so interesting. First of all, I think that actually people in some ways are more comfortable via telemedicine because they’re in their own space. So they have that that comfort level. And Cove is actually an asynchronous telemedicine practice. In other words, patients it’s sort of text based. Patients fill out a complete a very complete questionnaire about their headache and general medical history. And then there’s messaging back and forth between the provider and the patient to follow up on you know, on information and you know, to talk about the treatment plan and the patient has the opportunity to ask any questions and it’s so fascinating to me. And it’s so rewarding when I see comment after comment that patients say this is the first time they feel heard and it’s so interesting because this is a you know there’s there’s no face to face encounter even but to have that knowledge that that this doctor is focused on your headaches specifically and they’re here to help you with with that condition, it really is so, so reassuring to patients.

Joe Coe  10:06

What does it feel like when you see a patient or hear that a patient has gotten relief because of how you’ve helped them?

10:15

That that is just the best feeling. It really, it just makes any any difficulties any just it makes those go away. Whether I hear it in clinic, you know, where I practice or from our telemedicine patients, it just makes everything so worthwhile. You just feel so great. A couple people I saw yesterday, you know, one person said, “You got me through such a difficult year,” it just makes you feel so good. I mean, knowing that you’re helping them function that you turn things around for them, it’s the best.

Joe Coe  10:48

Really good reminder for me to share those experiences with my provider. I’m thinking I was at the hospital, my grandmother was passing and I brought my migraine medication with me. And after she passed, I remember taking it and looking at it in the garbage and the wrapper was in the garbage. And without that medication, I would I think I would have been sidelined for a couple of days because it was you know, a big trigger. And I wasn’t, which really surprised me and my family. It’s important. I haven’t always been in that place where I’ve, you know, been on the right treatments. And it’s so hard as you know, as a provider for patients to advocate and providers with no prior authorization and step therapy and all those fun things to get on these right treatments that make it so you can function during these like really difficult and or positive life experiences like weddings and, and big events. So I had that visual image of of that hospital moment and taking migraine medication and thinking back looking at it like oh, right now I should tell my neurologist that his proactiveness and we’ve had to fight with our insurance company with prior authorization to get on that treatment. Thank you for that reminder, that’s a really a good one.

12:09

Yeah, that is so frustrating. But I you know, and I’m sorry for your loss. And I’m glad that you you were able at least to get through, like you said, get get through it. You know, what could have potentially been, you know, a really bad trigger when you when you had to be you absolutely had to be present.

Joe Coe  12:25

And I’m happy that I remembered to run back to my house to grab it as I ran out to my car, I’m like, let me get my migraine medication. So a reminder, not only to take your medication, but to remember to bring it with you when you might need it, which is a big problem with me, since I don’t carry a bag, and it’s just not there. So that’s a tip to take and bring your medication with you. For those of us that haven’t found the right treatment, like I have, how do you advise folks to manage their triggers?

12:57

That is a great question. So some, some triggers are avoidable, and some are not right. So we can’t change the weather. You know, so and then the stressful situation like you described with your family that that nothing to do about it. But I think you know, realizing that triggers are additive. So trying to address the ones that you can help so if you know that you know you’re you’re going to be traveling you know maybe minimize alcohol if that’s a trigger for you that may be normally your you can you know cheat a little bit with that, you know, that’s when you have to be careful. Try to get as much sleep as you can, try to stay well hydrated. You may not be able to change the stress part of it, but those triggers that you can manage do try to avoid.

Joe Coe  13:43

Definitely, I have a follow up to that around travel. Staying hydrated is so important for me and many people, but it makes me have to use the bathroom so much. So I was talking to my doctor and he said, “Just make sure you get an aisle seat. Stay hydrated, but get the aisle seat.” So now I really just really pushed for the aisle seat, even though I’m a short guy and normally taller people want that for the legroom. I’m all about the aisle seat so I can get up and stretch and use the bathroom because I am maintaining that level of hydration while flying particularly. I have noticed that that has helped. Is there anything that you wished society as a whole knew about migraine that, you know, we know because we live it and we work in this field? But what would an average person need to know about migraine?

14:35

To realize that it’s not just a headache, you know, it’s not just the pain. It’s everything else that goes with it. There’s you know, there’s the prodrome, the the postdrome, that you know that migraine hangover. That you know your friends or family with migraine, you know, even though you can’t see it, they really are suffering and to be understanding. Employers too, right? You know, understanding that just because you can’t see it, does not mean it’s not there and to be accommodating and understanding.

Joe Coe  15:08

Dr. Crystal, how has platforms like Cove helped folks get access to care?

15:15

We have demonstrated through a couple of posters that we presented in the past and recently, the American Headache Society and with American Academy of Neurology conferences that we we are improving access so to patients, for patients that lack access, whether due to geographic location, and also due to other barriers. Recently at the American Headache Society, we presented a poster that showed that we are providing equitable care to patients that are part of underrepresented populations.

Joe Coe  16:03

Thank you for joining me on Talking Head Pain, Dr. Crystal, and for the valuable advice you’ve shared with our listeners.

Dr. Sara Crystal  16:09

Thank you so much for having me.

Joe Coe  16:12

And thank you, our listeners for listening to Talking Head Pain, the podcast that always confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.

Narrator  16:28

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

Narrator  00:00

Be inspired, supported and empowered. This is the global Healthy Living Foundation Podcast Network.

Joe Coe  00:09

Welcome to Talking Head Pain, the podcast that confronts head pain, head on. I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation. And I’ve been a migraine patient for over 20 years. As the COVID-19 pandemic continues, we’re still learning the long lasting effects the virus has on the body. Today’s guest has dealt firsthand with the effects of long COVID while also navigating life with migraine. Namira Islam Anani is a graphic designer and lawyer who specializes in human rights education and training. Namira, really, really happy to have you on the show today.

Namira Islam Anani  00:40

Thank you for having me, I’m really excited. It’s interesting because it’s, it’s like I’m excited, but also a little bit sad to be here in the sense of the fact that all of us are dealing with migraines. And just that reality is, you know, it’s a sad but good club to be in.

Joe Coe  00:57

It’s a special club. So for those that don’t know, Namira is a human rights education lawyer and graphic designer, and a social justice specialist who’s living with long COVID and migraine. So we’re going to talk a little bit about long COVID. And that’s where we’ll start. So what is the journey for you been like getting migraines and getting a migraine diagnosis in regards to long COVID?

Namira Islam Anani  01:21

So before I had COVID, I’ve been dealing with fibromyalgia for about 11 years now. So I was already used to brain fog and some of the physical fatigue and certain other symptoms around chronic illness. That was something I’ve been navigating for a while. I had COVID back in March of 2020. So I was one of the first ones that I knew to have COVID. At the time, we weren’t really even masking, there weren’t really treatments. I know for me, my temperature wasn’t high enough for me to come in and actually get a test or anything like that. So it’s very much this journey around getting diagnosed in the first place. So I often say that I was clinically diagnosed with COVID by like three different doctors but never had a positive test because tests were in such short supply at the time. So at the beginning with COVID, I was sick for about six weeks, couldn’t really get out of bed. I wasn’t sick enough to be hospitalized, but it was it was getting there. And then once I started recovering, I just noticed this for me at the time, I thought it was an increase in fibromyalgia symptoms. I was like, “Oh, it’s the pain, it’s the fatigue, it’s the brain fog.” But the biggest thing I noticed was word finding difficulty and other cognitive kind of impacts. And at the time, I had this referral for a neurologist and trying to get in to see them. But by the time, long story short, it took about a year and a half before I was able to actually go get an MRI. And at that point, the neurologists that I was seeing had said, “Are you getting headaches?” And when I thought about it was like “Oh, my head hurts right now as I’m sitting in this doctor’s office,” just didn’t really register it because I’m so used to dealing with pain on an everyday basis. So once the migraine kind of diagnosis came in, I realized that this has been something that was, that really had shown up after COVID. So before that, just the journey of really exploring what symptoms I was having because of COVID, what is long COVID, what is the long hauler kind of journey look like? All that stuff was was happening beforehand.

Joe Coe  03:11

Before you got COVID did you have headaches and migraines and you just didn’t connect them to a specific headache or migraine disorder?

Namira Islam Anani  03:20

It’s a good question. Because I know at the time I was dealing with a lot of brain fog. I also grind my teeth a lot at night. So I know that if I didn’t put my mouth guard in I would have headaches. I don’t think it was the same. So I’m not sure if it’s just the severity of it increased or if I already had migraines, but I never identified, “Oh, I’m having migraines,” before COVID.

Joe Coe  03:41

What does a migraine attack feel like for you and what’s your worst attack like?

Namira Islam Anani  03:45

So a couple things that I’ve noticed I usually have, which I realized recently that not everybody has this, but I usually have that little voice in my head that’s kind of like running commentary, thinking through things before I speak. Just that little voice. And I think the biggest thing I noticed around migraines is that it’s hard to track that voice. I also get a lot of light sensitivity. So turning off lights, trying to avoid screens. It feels like a lot of pressure, definitely feels like a headache. Like a really severe just like pounding in the skull kind of feeling. Pain behind the eyes, sensitivity to sound, just loss of appetite. I think the worst one that I had at the time I was facilitating over Zoom, I facilitated a workshop. And it was a three hour workshop. It was just me. So I was handling the tech and then I was also trying to focus on the participant experience, engaging them, and then sharing slides, doing the lecture component. All these things. I remember afterward, I probably had a migraine that was happening beforehand I just didn’t have the language or even the self awareness to be able to flag that it was a migraine, because I went in and I remember with a headache and thinking about how, “This ring light is really hurting my eyes right now.” And then after the workshop ended, I remember just sitting there completely mute. It felt like I couldn’t speak or string together any sentences. I couldn’t really think. It just felt like I was just sitting there very catatonic almost. And at the time I realized I was like, “I need to turn these lights off, I need to lie down,” but it felt very frozen like I felt really trapped inside my own head essentially.

Joe Coe  05:17

You just mentioned self awareness of migraine, what does that mean to you? And how have you adapted after you receive that self awareness?

Namira Islam Anani  05:25

When I first got that question from the neurologist who’s like, “Do you have headaches?” To sit for a little bit and just think about it, and I realized that I was having a headache right then and there. I think it’s that level of self awareness, I, you know, my background as an attorney, especially, there’s always, for me, been this division. It’s like the body versus mind kind of approach or the mind over matter kind of approach. And so that’s been something that I’ve been unlearning. But I think one thing that I really had put myself into that was a really toxic pattern was around the lack of self awareness. It’s even more than that. It’s like suppressing a lot of the physical sensations or suppressing a lot of information that my body is giving me so that I can focus on whatever task is in front of me. And so oftentimes, if there’s pain, if there’s fatigue, if I have a blinding headache, I just try to push it away, or don’t even realize that it’s happening. It’s happening on a subconscious level in some ways. And so I think once I really realized that question around, “Oh, do you have a headache,” and I started thinking about that more. And then I’ve had to slow down. I really just had to sit when I’m sitting in front of a computer or switching tasks, or just having that check in with myself. It’s okay, like, how am I feeling? How is my head feeling? How are my eyes feeling? What am I noticing? It’s interesting, because with COVID, and with long COVID, especially, I would, I would notice things around like shortness of breath, or, you know, just physical sensations that were not tied to the head. And so there were like, moments where I’d be like, “Oh, I’m sure breath right now, or I’m really thirsty,” or something like that. But there have been moments where I know like, my partner, we were out for a walk. And he’s like, “Hey, you’re breathing really funny. Do you need to use your inhaler?” And I just hadn’t even registered, I was like, “Oh, I am short of breath right now.” And it’s very similar for migraines where had not having that self awareness, not checking in with myself, I wasn’t being kind to what I needed, or even paying attention to what I needed at the moment.

Joe Coe  07:17

That’s really powerful. I’m curious to learn a little bit about how the intersection of your professional life is with migraine and chronic disease. So what is the intersection between human rights and health care and disability rights?

Namira Islam Anani  07:33

There’s so much there. It’s such a great question. I know it’s, on the one hand from being in the profession. I remember even for the bar exam, like when you sit down to get approved, even to sit for the bar exam, there are these questions around your fitness, right? Whether or not you are capable, or somebody who is able to practice law. And that was one of the first times that I really started hearing people talk about disability, and especially ableism, even within the field around, hey, if you disclose that you’ve dealt with depression, or you disclosed that you’ve dealt with a certain health condition, does that then affect your ability to practice law? And so people were talking, you know, we’re all like, have gone through this journey of law school where we’ve invested so much time and effort, resources into getting to this point to even sit for the bar exam. And then people are like, “Hmm, should I hide or not disclose certain things? Because what if that jeopardizes my ability to practice law?” And at the time, it was so interesting, because I was working in human rights education and training, specifically focusing in on racism and education around racism throughout society. And so ableism in particular, wasn’t something that I was thinking about. But the more I’ve gone through this and longer I’ve lived with chronic illness and disability, the more I’m recognizing the ways that ableism is just everywhere, right? And throughout the profession, you know, your lawyers, the people that you’re going to, the people that you seem, that you see as capable as somebody who’s going to support you or help you or, you know, open up access to resources for you. There’s so many unstated norms around how that looks. You want to be standing up when you’re in a courtroom, you want to be showing up without rescheduling a hearing, you want to be coming into a space where you are larger than life. And any sign of weakness is automatically tied to the idea that you’re incompetent at what you’re doing. And just the rigidness of the space. So just coming into that space from being a lawyer, but then also looking at something like human rights education and training, there’s been so much unlearning that I’ve had to do of how to show up and what is acceptable and really detaching that aspect of ableism really around competency and professional competency. And I think for myself, especially in human rights, I’m just recognizing the ways of like nonprofit culture or just like the NGO kind of space or social sector work, you know, some people of the nonprofit industrial complex, the way we sometimes talk about these spaces is just that narrative around sacrifice and martyrdom and push through it. “If you are passionate about this work, then you will push through the pain, that’s, you know, you can care for yourself later, you know, once the world is more healed and better, that’s when we can take care of each other.” And that narrative is just really hard to unpack. And so for myself, going through this journey of really recognizing with migraines, like there are times where I have to reschedule, there are times where I have to be off camera, there are times where I need to sit down and not be able to speak, you know, the front of a space or things like that. Just really unpacking that for myself and for other people as well around like, this is what we’re talking about. We can’t wait until we get to a place where the world is different to start taking care of each other and start taking care of ourselves.

Joe Coe  10:48

That’s so important. What would you tell a younger version of yourself or an aspiring attorney or activist that lives with a condition like migraine?

Namira Islam Anani  10:59

Yeah, it’s think about this a lot. Because I get where I was at back then. I also recognize the ability to even get into law school, to be able to do the work that I did during law school, to come out of it, to become a licensed attorney, and then do the work that I’ve done around, you know, nonprofit founding an organization doing anti-racism education, I know it needed a certain level of hustle and also just acclimating, right, or adjusting or navigating some of these spaces where I didn’t have as much agency to change some of the norms. And so that’s something that I think about a lot now where it’s like that almost a hazing process, right, when you get into certain spaces, where they’re like, “Oh, you need to put in the time, or you need to put in the effort, you need to go through this really difficult thing, or to make it to a place where there’s more flexibility or ability to adjust.” I think what I would tell myself especially is that it wasn’t that something was wrong with me, when these spaces were not designed to accommodate. Something is really wrong with the way society is structured when accessibility and inclusion and really making sure that people have what they need is seen as a burden or seen as inconvenient. That’s not something that, I had definitely internalized that when I was when I was younger, that it was just me, and something was wrong with me. And so I think there’s that self compassion, that grace that, you know, I really hope people who are coming up through these really rigid spaces that they are give themselves. And especially that piece around needing to do certain things in order to survive in a space, just having compassion for yourself based on that. Because there are things that we would want to do differently. But we don’t always have the power to change. I’d also really advocate for taking the time, taking the time to really focus on yourself to think about just because if people are pressuring you to do things a certain way, do you have to do it that way? Are there ways to also advocate within? Like a setting like law school setting for accommodations, to even ask for those things, I don’t think I felt that I had the agency to ask for these things. So I would have told myself like if the issue is with society and the structures, we’re living in, like ask, advocate for yourself, make sure that you are getting the benefits of the work that people before you put in to make sure these spaces were more accessible.

Joe Coe  13:21

So important, particularly I love the concept of compassion to yourself, which then extends to others because we don’t know what people are living with or dealing with often with these invisible conditions and chronic diseases that we’ll never see unless we provide that space for people to feel comfortable enough to tell us. And I also really appreciate you talking about that internal dichotomy that we have around what do we do, can we change the system, and what is what spheres of influence do we have in our own institutions to shift things. And I think that that’s a really smart thing. But also I’ve grappled with that too. It’s really easy in hindsight to say what we should have done so I think that leading with compassion highlights that so much and I appreciate that.

Namira Islam Anani  14:17

Yeah, no, because I think otherwise it’s hard to feel guilty about almost like complying, right, with the way things are structured, but the reality is, some of these things are bigger than just any one individual so while that also gives us space to like agitate and and push right for like change, but it also means that sometimes our inner critic is so strong around like, “Why are you going along with us?” Well, because there’s an aspect of survival here. Aspect of being able to even get through it to get to somewhere else.

Joe Coe  14:46

Oh, totally. So has migraine impacted your personal life in any way?

Namira Islam Anani  14:52

Absolutely. 100%. I think the biggest difference is around the personal actually. I think in many ways, because I want to show up a certain way in, in work and in the community kind of advocacy space and leadership development, especially, I think for myself, there’s kind of the spectrum of certain things are more fixed in my calendar, which usually is work and certain community efforts and things that are happening oftentimes with other people in my network. And then because of that, some of the flexibility comes in around my personal life. And that’s where I’ll take that space of, okay, “I can feel a migraine coming on or dealing with a flare up of different conditions. I’m really exhausted, can we reschedule?” And I think the nice thing about it, though, is that my family, especially before I had COVID, I was working a lot. Like I was in this journey around trying to have more personal ecology, right? So thinking about your ecosystem in your own life, rather than just work life balance, but like, what is the ecosystem around work and around your life, and I was getting there, but COVID completely interrupted it. I mean, I transitioned to the board for my nonprofit after serving in leadership there for seven years, and with the migraines especially, just recognizing the impact of certain things really shifting my life. And so the great thing about it is, because of the way COVID and the pandemic was playing out, my family were really the ones that were there for me during that time. It wasn’t the network, it wasn’t the community, they were there, but they were on the outskirts. And so them kind of witnessing what my COVID experience was like, them knowing what symptoms I was trying to navigate. I just have so much grace and flexibility from my family around, “Oh, this isn’t doable today. Or, you know, let’s adjust this, what do you need? Can we do something?” And so I’m also been working on unpacking the difference between like, yes or no. So moving out of that either or binary, towards like, “Oh, maybe I feel a migraine coming on, it doesn’t mean that I don’t see my family, or I don’t engage with them. Maybe we change what we’re doing or how we’re doing it.” And so that way, there’s still a way to have time together without necessarily staring at a TV screen, or making sure that we’re doing things a little bit differently so we can still see each other. But the personal life has been where it’s things have been getting rescheduled, or, you know, just on the fly kind of making changes with what I’m doing on a day to day basis.

Joe Coe  17:21

I love the concept of getting rid of the yes/no binary. And it’s something that I practiced yesterday, which I didn’t even realize I was practicing. I went to an event that I normally would have said no to because it was really hot out and heat is a trigger for me. But I said, you know, I’m feeling good. Let me do this. And I left middle of it like right when the event was getting poppin. But I said to people, I was like, “Listen, I’m feeling fine, but I think if I push it, I am not going to feel fine. And I have had a really busy week and I am not going to do this.” And people were really understanding. It was a little tiring when folks like when I asked you questions and about your disease, but I figured I was being open. So um, that’s what I invited. But it was, um, it was definitely not a yes or no, I went and I decided to leave early before I gave myself the opportunity to to have an attack from the heat. It was like 90 something degrees.

Namira Islam Anani  18:21

Yes. Here as well. And I love that, kind of, I really admire that because so far, it’s been easier for me to do this with family than it has been with large groups. And I don’t know exactly what is bleeding into that. If it’s a combination of who I was before COVID, before migraines, and kind of responsibility to be in the space. I’m not sure. But that was something that I was thinking about with some of these larger events. Like, you know, I’ve been erring on the side of saying no, because I don’t know if I fully trust myself to have the good boundaries of being able to say when I’m there like actually, “How am I feeling? I need to either sit down or I need to leave.” So I really appreciate you sharing that because I know that’s something I want to work on for myself.

Joe Coe  19:03

I did miss the group picture but you know, worse things have happened.

Namira Islam Anani  19:09

Yes.

Joe Coe  19:11

My, my one of my last questions for you. I want to talk about diversity in migraine and in COVID. Do you see a lot of diversity in the migraine community or space as well as, as you got the diagnosis for long COVID and migraine, did you find that you were seeing and hearing stories that resembled yours?

Namira Islam Anani  19:32

It’s a great question because in the process of the pandemic, I moved from the suburbs, here in Metro Detroit to Detroit, and a lot of my work has been here in Detroit the last seven, eight years. So I think because of that, the stories I was hearing around COVID especially, we’re a lot around black and brown folks here in Metro Detroit, but I will say that especially with migraines before kind of being in the space and really getting to meet more people and talk more, and learn more from like the community around kind of migraine treatment and moving through it. I think my only real stories about it were like the widespread, mainstream stories that really saw it as like a white woman’s kind of issue, right? Where it was like, “Oh, that’s who gets migraines.” And so just the gender, the race aspect of it. I think the other story, though, that I grew up, with my parents came from Bangladesh in the 1980s to the United States, and I feel like growing up there were so many you know, community aunties, Bengali women, who were like, “Oh, we have migraines.” But I think the story that I would hear from that was that when they had a migraine, it was just, “Hey, shut everything down, I’m gonna go into a closed dark room, and just ride it out.” So there wasn’t much around the treatment aspect. I feel like growing up, I just, migraines seemed like this mysterious thing that it just hits you, and then you’re done. And you just have to wait. And there’s not really much else you can do other than go lie down in a closed, you know, dark, quiet room. And so through the long COVID journey, though, even though I was seeing stuff on the ground around who was being impacted, and especially in Detroit, where we’ve had water shut offs, we’ve had all kinds of issues with access to health care. It’s like the country’s telling you to wash your hands for 20 seconds, and yet we have people who don’t have water in their homes because of a couple hundred dollars in unpaid bills. And just seeing the difference between that versus like the national narrative, I’ve found myself really wanting to seek out stories from people of color around COVID, because it was a different experience getting diagnosed, or just really thinking about the layering as well of other conditions with COVID. And then some of the messages around,”Oh, it’s your fault,” or like, “Your cultures are a certain way,” just some of the microaggressions that were happening. So one thing that I really found myself leaning toward was, who are the other people of color who have been dealing with long COVID, because the stories that we tell ourselves and each other around, you know, even the impact on like family life, or how we’re showing up in our community, and then also the distrust of doctors, because of the histories of racism in medicine. I know I was navigating all of that. And so right now there’s like a Slack group that is for long haulers. And there is a specific BIPOC channel in that Slack group. And that was a space that I was really finding supportive, more so than some of the other spaces. It’s just a different kind of relationship, you know, thinking about vaccines, thinking about all of these, whether or not you trust doctors. Are they’re just telling you to like, “Oh, yeah, the pain, you just have to go through it.” Are they treating me, as a Muslim woman wearing a headscarf, that I am going to be really meek or somehow need to be relying on somebody else to make decisions for me. There’s just so much around like race, religion, gender that I’ve encountered over the last 12 years in a medical kind of space dealing with doctors, that I think that did help me with the COVID diagnosis. Because there was a lot that I was doing around self advocacy. The first neurologist that I went to go see, I walked out, which I’ve never done before, because I’d been sitting there for an hour in the waiting room waiting for them to come in, after months of waiting for an appointment. And I remember thinking like, wow, well, you know, the old me would have never done this. The me that hadn’t talked to other people of color that hadn’t really been thinking about how race and medicine and religion and all this stuff play out. I wouldn’t have walked out I would have just sat here. But I knew that I was just fed up. I was like I can’t. I need somebody who will see me, who will be able to be reasonable about wait times, who will spend time with me, and I just can’t do this. And so I left. And that was partly why it took longer to get in to see a different neurologist. But I do think it was worth it. Because the team that I’m working with now is so much more supportive.

Joe Coe  23:54

One follow up question, what’s the biggest takeaway or learning that you have from being part of that Slack group or that community around COVID and long COVID, and being part of the BIPOC community?

Namira Islam Anani  24:10

The crowdsourcing element, I don’t think I would have called it crowdsourcing before I would’ve called it like communal wisdom, which it still is, but I think technology has enabled you to connect with people in in such a different way. And that has been such a huge relief to know that other people are dealing with the same things you’re dealing with. Even if they’re not they’re holding space for you to be able to talk it through. There is that crowdsource element of what did their doctor tell them or what did somebody else in their life tell them as to how to navigate these, these conditions. And I think from that space, I’ve been really thinking about okay, what are some of the things around drinking water or even grounding. I know I was looking up some practices around grounding in Zoom space right around breathing and just grounding in the space before we start doing a training or talking about some tough things. But you know, I came across and indigenous teaching around just Earthing and putting your feet barefoot on the ground in the grass outside. And so I’m just thinking about all the ancestral kind of wisdom too, thinking about different families. And I think the beauty of the BIPOC space, especially in the United States, is that you are getting a global perspective of approaches to wellness and well being. And some of those things, it’s like, the holistic approach to where it’s, it’s medicine, and it’s a different kind of healing that is happening in a different way. So thinking about the prescriptions versus, you know, the ways to drink more water, the ways to be able to connect more with nature, and get in some of the effectiveness through the sun and other ways of just managing. I think there’s a wisdom there that we’re tapping into generations of experience. And that space is where we are able to bring that in and talk without being judged or without having people, just that gaze on us as we’re having these conversations and sharing sometimes very personal, familial kind of histories and stories with each other.

Joe Coe  26:10

That’s so amazing. You would love a podcast that my colleagues, Angel and Danielle host called Wellness Evolution. And I encourage folks on Talking Head Pain to check that out. There’s breathing exercises that can help ground and do some of the things that you were talking about, which is really important. One last question. Things keep bubbling up as we’re talking, you’re sharing such such amazing things. Can you explain what holding space means for you?

Namira Islam Anani  26:39

Wow, it’s such a beautiful question. There’s something about presence when it comes to holding space. It’s not just, it reminds me almost of the difference between like quality time versus just being with each other in a room. Holding space is like creating this container or creating this opportunity for people to really show up and be fully present with each other. There’s something about also, this, I often call it like an artificial construct. So when we talk about like community agreements, or community norms, or how we’re agreeing to be with each other, that’s about holding space. It’s getting to really be with each other in a very intentional mindful way where people can feel heard and seen and just embraced for for being there. There’s a serendipity that comes from you are holding space with someone. And the fact of all the things that had to align for you to be together in that moment, there’s an intentionality and appreciation for the space that you are creating, co-creating really with each other.

Joe Coe  27:42

That’s amazing. I know a lot of people probably don’t know what that is, or haven’t experienced that. So I wanted to make sure that we put an underline on that concept, because it’s a really important one doing work around chronic disease, social justice work, it’s about building trust, and how we build community with each other in ways that we define for ourselves that help us and give us what we need to navigate, as you said earlier, a world that is created to not support or uplift people that look a certain way, love a certain way, practice a religion in a certain way, or live with certain diseases that people don’t understand or think are serious. So really appreciate all of the wisdom that you shared and insights. This was a really awesome discussion. Before we wrap up, is there anything that I missed that you wanted me to ask or that you want to share?

Namira Islam Anani  28:38

No, I wanted to thank you for holding space and for that question. I’m so grateful, especially being somebody who, you know, is new to the migraine kind of space for all the people, that you all are in this space, are holding space with each other, you’re showing up for each other. It just really makes me feel held in a very different way. And I’m so grateful to have this.

Joe Coe  29:00

Thank you for your time. I know that it is a lot of effort to do these things. And we all have limited time and energy. So I appreciate the energy that you gave to us at Talking Head Pain. Thank you so much.

Namira Islam Anani  29:13

Thank you.

Joe Coe  29:16

Thank you so much for listening to this episode of Talking Head Pain, the podcast to confront that head pain, head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.

Narrator  29:32

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

Narrator  00:00

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

Joe Coe  00:09

Welcome to Talking Head Pain, the podcast that confronts head pain, head on. Hi, I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation. And as you know, I’ve been living with migraine for over 20 years, and I’ve learned that no matter how long you’ve been on your personal journey, we all can agree that living with migraine can lead to profound changes in our lives. These are changes that today’s guest JP Summers has experienced firsthand. JP is an author, journalist, and fellow at the Global Healthy Living Foundation. Hi, JP, how are you today?

JP Summers  00:43

I’m doing great, Joe. And you?

Joe Coe  00:45

I can’t complain. It’s a good day when I get to do Talking Head Pain and talk to wonderful people like you. So we’ll jump right in JP, can you explain to the audience what your worst migraine experience was like?

JP Summers  00:59

Sure. So my worst migraine experience was when I was in the eighth grade. I was actually in the middle of taking a test and all the sudden on my left eye I was having what they would consider floaters. And so all of a sudden, my left eye had all these little floaters. It kind of looked like little butterflies, like sparkly butterflies. And then within a matter of seconds, I couldn’t see out of my left eye. So my reaction was to just head out to the nurse’s clinic because that’s what I was, you know, that’s my norm. And as I was walking down the hallway, which typically wasn’t that far, but I started losing vision in my other eye. So I was walking and holding on to the wall, which basically were all lockers and I was trying to feel my way to the nurse’s clinic whose door was always open. And as I was walking, it’s like tunnel vision and like even the sounds, I could barely hear anything like my hearing almost went, like I was almost deaf. And by the time I made it, which seemed like an eternity into the nurses clinic, she looked right at me and I could barely see her. And all I said was, “Migraine.” And from that time and again, I don’t recall anything what people have told me my parents, the nurse, the physician. So apparently my parents picked me up from school, drove me to the physician’s office. They then administered what would be a migraine cocktail, which is a mixture of different kinds of meds that they they tend to use, a combination of usually three, to kind of help alleviate the the migraine symptoms. And that was done. Apparently I was there for two hours from what I was told. Then I was driven back home. I did not wake up, so around the timeframe I was told, it was like about maybe like one o’clock in the afternoon at school. So by the time I woke up, it was 10 o’clock at night. When I woke up I had no idea where I was at. I didn’t even know what day we were on. I mean, absolutely. Like I don’t remember anything. And again, I was just told the story of what happened. And for someone who never experienced a migraine attack that severe, that debilitating, I was shocked that I’m like thinking, “How could I have lost those many hours of time?” And it’s scary, because that did happen several times. I would say at least 10 times from that the eighth grade, it happened to me several times over the years. And yeah, again, that was probably the most terrifying migraine attack I ever experienced.

Joe Coe  03:46

Yeah, that sounds really intense, particularly the loss of time. That leads me to my next question, JP, what are some of the things that you’ve lost by living with migraine?

JP Summers  03:58

Oh, gosh, the the top two that always stick out the most when I’m advocating, when I’m sharing my story, is the first one would be loss of driving. I actually my neurologists, when I started to have debilitating symptoms with my motor skills, I had a weakness in my hands, of movement. I had difficulties walking, I actually had to have help to get around. And that led my neurologist to suspend my driving privileges for two whole years. That is how debilitating, that’s how severe that all of actually my symptoms were. So for two whole years, I had to have people drive me to doctor’s appointments, drive me to the store. I mean, just the simple things that you take for granted, people had to pitch in. My daughter who just got her license was driving me just down the road just to run an errand. And to lose that part, you know, something that you that you just normally don’t think that would happen. That was very difficult for me to accept. And because of my not not being able to drive that then led to a loss of a career. At the time, I was seeking medical advice. I was trying to get treatment, trying to figure out what was going on. Why was my neurological state so bad? And of course, I had a banking career at 13 years at that point. After the you know, the use of FMLA I was let go. So I lost a 13 year career, which is something I never ever imagined migraine would take away from me, because most people lose lots of lose days, you know, they’ll maybe miss maybe some hours, a few days, but never did I ever imagine losing the ability to drive and a career would be the result of having the migraine disease.

Joe Coe  06:03

How did that realization that you couldn’t work anymore, or losing your career impact you emotionally, physically?

JP Summers  06:12

Oh my gosh. So I know that it wasn’t that I was- I wasn’t fired. I know that but mentally, and emotionally, I felt that I felt like a failure. I felt that I failed myself as a person. Everything I worked hard for, all the years that I that I put 13 years I put in for training, I took classes, you know, I built those customer relationships, you know, just all of everything that I worked hard for and was gone. And that emotionally drained me. It put me into I mean, I wasn’t diagnosed with depression. But personally, I felt that I did go through depression because I, I was in pain for one. I had all these symptoms going on, if it wasn’t, you know, visual disturbances or sensitivity to light or, again, the decreased motor skills of not being able to walk  unassisted. Just the things that symptoms that you get, you know, with having a migraine disease, but I mean, mentally, I felt like a failure. I felt like, I can’t believe that, that I allowed this to happen. How could I have come to this point? So it does affect you. And I think for me personally, just knowing that, hey, you know what, I know that this happened. But I have to get better. I have to, you know, find a way to get back at least part of what I lost. So yeah, it definitely does take a toll on you a lot more than what people realize.

Joe Coe  07:55

So JP, how did you find purpose and reclaim that sense of self?

JP Summers  08:00

It took a good year for me to kind of put a positive spin on what was going on with me. And I found online community where I was able to join online support groups for people living with migraine and other headache disorders. And through that someone reached out to me and said, “Hey, we have this, you know, we have ways that you can share your story.” And when I was told that my story could help others, I just couldn’t not think about the positive things that could come from it. And that gave me so much purpose. That gave me a reason to want to keep going, to keep pushing for a better quality of life.

Joe Coe  08:44

I know you personally from working with you at the Global Healthy Living Foundation and through your advocacy. And I know that you’re a mom, and you have a child, or multiple children with migraine, I’m actually not sure. But when you learn that your 10 year old was diagnosed with migraine, what went through your head?

JP Summers  09:02

So the moment we found out that he did in fact have migraine, the first thought that went through my mind is, “I cannot believe one of my one of my children has to go through this.” And the next thing was, “Okay, we have to be aggressive, we have to find a treatment,” because I do not want my 10 year old who was actually going through the same symptoms, very similar to what I was going through, at that time. We both were hit with chronic migraine at the same time. And it was just I just felt like I had to do everything in anything possible so that he can still have his youth, you know. He was only 10. I was, yeah, I mean, I had migraine for three decades, you know, 35 years, but here’s my child who hasn’t even experienced middle school, high school, none of the things that I got to experience. And I, and I just already saw him in just this debilitating state that he he needed some kind of treatment plan regimen in place so that we could give him the best chance of having a scholastic career. And yeah, so it was just one of those moments where you, you feel like you’ve got to do anything and everything as a parent. But also as someone who has migraine to help them live a better quality of life.

Joe Coe  10:33

So important, your child is lucky to have such a fierce advocate for him in his treatment, because I know that you’re fierce, and you know how to advocate. So it’s unfortunate that you have to use those skills for your own family. But it’s something I can relate to; helping people that I know live with migraine, get better treatment. I want to talk more about your upbringing and being part of the Latina or Latino community? How has that shaped your migraine/headache experience? And what would you want people to know about that?

JP Summers  11:09

Growing up in Hispanic culture, it’s, you know, it’s, it’s one of those things that there are a lot of relatives, believe it or not, that have migraine in my family. And the odd thing is that no one really talked about it. And, you know, I have aunts and great aunts. Believe it or not, there’s there’s no males, my son is the only one that we know of at this point that has migrate. But I have so many cousins. And again, no one talked about it, I was the only one that was constantly, even as a kid, you know, when I was diagnosed at 10, I was constantly talking about it so I should have known I was going to be bald and advocacy at some point because I wouldn’t not talk about it. It was the realization that when I did start advocating, a lot of them were not educated. They didn’t know where to look for resources. Half of my family speak Spanish only, where would they go to find those resources, because, again, they need help translating. So I again see that, you know, difference in bringing forth the resources they need. But also it’s not just them. It’s I also have friends, you know, that, again, Latino, Latina, and they too have the same situation where half of their family only speak Spanish. Even the ones that are bilingual, still struggle to explain certain terminologies. So there is that need to bring more education, more resources, to the Hispanic community. Anything that I’m able to do to help, that is part of not just something I do as an advocate, but also someone who lives with migraine that I want my family, I want my friends to be able to share, to be able to give information that can help others in our community. And again, it’s very important to reach out to people with those different backgrounds, again, whether they’re only Spanish speaking, or they’re bilingual, again, to just kind of bring the information that they need to help them get the most effective treatment for them.

Joe Coe  13:27

So important. I remember we did a video campaign at GHLF called 86 Migraine and my colleague, Dr. Daniel Hernandez translated them into Spanish. We felt it was really important to at least start doing that because it’s it’s so missing in the migraine advocacy community and education, reaching Spanish speaking folks. Definitely a lot more to be done, and a lot more that we can do. So it’s important to listen to that experience that you’re sharing. I want to close this out by thinking about what brings you joy and happiness. And I know that one of those things is reporting and going to Comic Con and events like that. So what about Comic Con brings you joy? How do you get energized by that and how do you manage like these really loud, colorful, vibrant events while living with migraine?

JP Summers  14:28

Yes, so back in 2018 because of my experience as a freelance writer and blogger, I got to do media coverage at my very first Comic Con which a lot of people don’t know this or maybe they do, I call myself a big Geek Mom. I love anything and everything comic book related, Marvel, DC, Star Wars, yeah, you name it. I just love it. And so to be able to go to these events was just like amazing to see these celebrities, see people dressed by cosplay. I mean, I felt like this is amazing. Why would, why did I never do this before? So one of my biggest obstacles was, you know, knowing that I live with migraine disease, how can I attend these events, like you mentioned, that have these bright lights, just different things going on. So I always prepare ahead of time. I scan out the venue, because each event takes place either a convention center or a stadium. So I’m always constantly looking to see what their policies are because one thing that someone that’s chronically ill, we have to have meds on us at all time, medications. So I like to see what is your policy about bringing in liquids or checking out where their food stands or water stations because then they allow you bringing in a water bottle because you always have to have liquids on you or you know, something to drink when you take your medication. But also finding out where their first aid stations are. Because when you have migraine attack, sometimes you need extra help. And when I say extra help, you may need to have someone again, if you lose your sight, even if it’s partial, you may need to have someone help you. And when you’re at this big event, you know, you need to know basically your exit strategy. But when you’re also going into doing- so my favorite part is the celebrity panels. And let me tell you, I never want to miss one of those because that’s where you hear all the good stuff. You hear things you wouldn’t typically hear a celebrity talk about in a regular interview. So I’m like, I’m not going to miss those. And so again, just figuring out, okay, so when you go in there, try to sit in the area where you know, you need if you need to make a quick exit, you’re able to leave but also carrying around my bag of necessities. I carry earplugs, I have my sunglasses, you know, I have just all kinds of things I typically would use during the migraine attack. And a lot of times, I will sit on the floor. I mean, I have I’ve you know, I carry a sweatshirt or like a jacket or something. But I’ll sit it down on the floor because I need to sit that moment. I need to sit down if there’s not any benches or anything, and take my meds, and even I just need to rest. I need to rest to see what the next steps would be if I’m able to go back in or do I have to get an Uber to head out because again, even though I drove myself there, something that will again, I still have the difficulties of driving when I have a migraine attack. So again, making sure that all areas of of self care but also my own care are taken care of because like I said, you don’t when you go to these events, you want to be there all day. You want to take in everything. You want to be able to experience it. And it’s one of those things where yes, it brings me joy because I just love to see all these families dressed in cosplay, but also again, meeting celebrities getting to talk to celebrities. I mean that right there in itself. I mean, it’s so rewarding. So the fact that I’m able to do that, despite living with migraine disease for me, that brings me joy. It really does, so.

Joe Coe  18:04

Amazing. Before I do a follow up question about Comic Con and Marvel vs DC, I want to plug that we have a podcast at the GHLF Podcast Network called Dungeons and Diagnosis if people are interested you could find it at ghlf.org/listen, and it’s chronic disease characters playing Dungeons and Dragons. So a really cool concept for those people that are into gaming and Comic Con and cosplay and all that fun stuff. So I need to know JP, Marvel or DC, favorite characters, where do you land here?

JP Summers  18:42

So I have to say, and this is a tough this is a tough question, Joe. It really is because I was more DC up until I got to meet Mark Ruffalo in person and actually interview him. So my loyalty is now to Marvel and I love I love the Avengers so of course you know that’s just I’m a Marvel Girl, so I definitely if you look at my T shirt collection it’s more Marvel, Captain Marvel, Avengers so things like that.

Joe Coe  19:27

Edward or Jacob?

JP Summers  19:28

Oh my Gosh, Team Jacob all the way.

Joe Coe  19:31

That’s an interesting twist.

JP Summers  19:33

I actually, yeah, and you know what to this day I actually have Team Jacob stuff. I’m not even embarrassed to admit it. But Team Jacob all the way. Team Jacob I will never not be Team Jacob.

Joe Coe  19:48

Well, very good, JP. This was so much fun. I feel like I’m talking to a celebrity. So this is my own Comic Con, but not a comic or a con. What is it con mean- convention? I’m like is that a fake comic? Delight always speaking with you. Your passion and energy for sharing your story is really motivating and helpful and I know that your voice and energy reaches so many people and appreciate you taking time today to speak with me for Talking Head Pain. So thank you so much.

JP Summers  20:23

Thank you for having me.

Joe Coe  20:25

Talking with JP is always so energizing. The way she has overcome her struggles living with migraine is really inspiring and is a great example of doing what you can do while you live with migraine. What is something that you love to do but requires some migraine preparedness? For me, it’s working out at the gym and I’m sure if you live with migraine, you have your way of managing to help you live your best life. Thank you so much for listening to this episode of Talking Head Pain, the podcast to confronts head pain head on. If you like this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.

Narrator  21:04

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

Narrator  00:00

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

Joe Coe  00:09

Welcome to Talking Head Pain, the podcast that confronts head pain, head on. I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation. I’ve been a migraine patient since I was a teenager and so has today’s guest, Tom Dabertin. Tom is the Executive Director and CEO of the National Headache Foundation, and through his work is advancing migraine care and bring important information to those who need it. Hey, Tom, how you doing today?

Tom Dabertin  00:36

I’m doing great job. And thanks so much for having me as a guest.

Joe Coe  00:40

And how are you feeling today, Tom?

Tom Dabertin  00:42

You know, I’m feeling pretty well. I am an individual who not only works in the area of headache and migraine, but I actually have had migraines since I was 17 years old. I still remember the very first time that I had a migraine headache. I was actually at a basketball practice in high school. And my coach told me I needed to grin and bear it. And I remember the sharp pain through my head and the the auras and the sensitivity to sound. It felt as though the basketball was literally pounding against my head. And remember that I went home and slept for hours. And that’s, that’s my first experience with migraine. I am fortunate that as I’ve gotten older, my migraines have been less severe as far as headache pain, for example. There was a time and a place where you could pile all the world’s pillows on my head and it would still be too loud and too bright in the room. And I am lucky in the fact that now, my migraines generally are kind of a low grade migraine where I have some impact to my vision. I get the auras, for example. But I don’t get the full on sharp headache. However, after I have a migraine, I still I still have some of the same symptoms. I’ll feel somewhat nauseated during it. But afterwards, I need to sleep. I feel as though I’ve run a marathon for days and just have a, you know, a huge need for sleep and just totally, totally mentally and physically worn out from the from the episode.

Joe Coe  02:27

I can certainly relate to that feeling, especially after. We don’t talk about that a lot the physical and emotional impact that we have to now address after a really intense attack. I want to circle back, you talked a little bit about being teenager developing migraine and playing sports. Did that impact the rest of your high school and college life in any significant way?

Tom Dabertin  02:55

It did. I remember having migraines when I was in college, and you know, remembering trying to study for exams and how difficult it could be. The fact is, is that you know, I’m I’m going to be 62 years old this summer. So, back in the night, late 1970s when you told someone you had migraine, and especially if you were a male, I can remember one professor saying to me, “Nice try. My wife gets migraines, men don’t get migraines.” And so so they just didn’t understand. But you know, times have changed. And I think there’s a more widespread understanding that migraine exists. There is still a lot of misinformation and lack of knowledge on how it affects the individual and what the triggers are and the treatments and the preventative. So there’s still a lot of education that needs to occur out there. But it’s certainly better than it was 40, 50 years ago.

Joe Coe  03:57

You mentioned that you dealt with migraine while in college. Do you have any advice to give to students that are in college who might be away from family support and other safety nets?

Tom Dabertin  04:09

Sure, first and foremost, go to your student health center and seek treatment. Don’t wait. Don’t wait until you get home to see the family physician. We are working as part of the foundation’s initiatives, we have a program called Migraine University, where it’s an outreach program to both students and to practitioners at Student Health Centers throughout the nation’s college and university system to better educate those practitioners and better educate patients. Check when there is a health fair on campus, there’s probably a pretty decent chance that we’re going to have a presence or we’re at least going to have information available for you to better understand your circumstances and your situation. And remember this- migraine for example, it differs in every individual. So the symptoms that I may have may not be the same symptoms that you have. And make sure that you you talk to that health services facility to the staff there and seek some, some treatment  Don’t don’t try to. Don’t try to live with it until you get home to visit the family physician.

Joe Coe  05:25

I hope so. And that’s why we do the work that we do and that you do at the National Headache Foundation is to make it better. Did you find that it took a significant amount of time to get diagnosed or after that episode on the basketball court? Did you see a doctor and they tell you that it was migraine?

Tom Dabertin  05:42

You know, I did go see the family physician, the family physician actually just said, “Well, it’s probably stress. And you know, or it might be sinuses,” and didn’t understand that it was migraine. It wasn’t until I actually sought some treatment at at a teaching hospital in Chicago at the University of Chicago, that I actually got relief. And they were able to explain there were certain, you know, there were certain things that I could do to avoid migraine and also to be treated. And I don’t recall what the prescription was that they gave me. But it was just a, you know, it was a miracle drug because otherwise, I had these very, very sharp, sharp pains in my head. I used to liken it to if you took a hot poker and ran it through the roof of your mouth out through the top of your head. That’s how sharp the pain was. And it was really unbearable. Yeah, I remember one specific incident, my son was about five years old. And I can remember him coming into my bedroom. I was you know, trying to sleep off the migraine and had you know, terrific pain. And I remember him being upset and said to me, you know, “Daddy, you don’t want to play with me?” And I’ll never forget that, because I was close to my kids. And it was just heartbreaking. Because he, you know, here he’s five years old, and he didn’t understand. And I guess that’s a personal story that a lot of individuals with migraine can can attest to that. It’s not just the pain and the, you know, the physical the physical exhaustion, it’s the the interruption to family life. I would do anything to play with my son and to be to enjoy those those times. But in that one case, I couldn’t function, I couldn’t stand up, I was unable to, to, you know, obviously go out and play with him on a on a beautiful, sunny, sunny day. So and you know, for a five year old, he didn’t understand that.

Joe Coe  07:50

How did you reconcile those feelings of A, needing to take care of yourself and not being able to and seeing your five year old wanting you to be present?

Tom Dabertin  08:00

Well, it really was the motivation for me to go see someone and get some professional treatment. And that’s, you know, that’s one of the shortcomings associated with migraine is that not enough people go out and seek professional treatment and there’s not enough individuals who provide professional treatment. So the National Headache Foundation has two really key programs as it relates to practitioners. One is a long standing program called the Added Qualification in Headache Medicine. We provide a certification for those practitioners who focus on headache. Sadly, were one of two organizations that provide that certification. And if you add up all of these headache specialists in the United States, it’s less than 1000. And you’re looking at a population of about 40 million with migraine and another 12 million with chronic headache disorders. The ratio of practitioner versus patient is just off the charts and we’re working to we’re working to promote that specialization. At the same time, we also realize that most practitioners, most physicians, for example, if you look at physicians, nurse practitioners and physician assistants, physicians usually receive less than two hours of total classroom training as it relates to headache. And not a lot of continuing education out there. So the National Headache Foundation this past September launched a program called Primary Care Migraine, and it’s a two hour training, two credit hours for those practitioners to be able to they can download it on their computer, they can watch it on their phone. It’s downloadable both Android and iPhone, and you can watch it on your phone. You can watch it on a computer. You can start and stop, there are four modules. When you complete the training you’ll have two hours of CE. You’ll also have a terrific diagnostic tool set; the seven most common symptoms of migraine. And there’s also a full listing of all the acute and preventative therapies that are currently approved by the FDA for the treatment of migraine. Our hope is to get this out to as many people as possible. Now we’re, we’re already certified for, as I mentioned before, physicians, nurse practitioners and physician assistants. In fact, the American Academy of Physician Assistants has certified us, in addition to the certification that we already had, but we’re working with right now with a number of entities to become certified for pharmacists and pharmacy technicians. And we believe that that certification will be available sometime in late June, early July. And we think that’s important because this day and age, a lot of people use quick clinics, urgent clinics that are located in retail pharmacies, and when those clinics aren’t available, or because they are there, a lot of individuals will seek out the advice of a pharmacist or a pharmacy technician and ask them about OTCs. There are plenty of good OTCs out there, over the counter medicines. But unfortunately, there’s a lot of misinformation so, you know, over the counter pain medicines for muscle aches is not going to do much good for migraine headache. And unfortunately, again, because of the lack of training, sometimes those errors are made. So what we’re trying to do is expand the availability of that training now to pharmacists and pharmacy technicians.

Joe Coe  11:54

It’s amazing and working with primary care and pharmacists is so important because so many of us that’s the frontline of health care. And we’re likely not going to see a neurologist, let alone a headache specialist. I was treated by my general practice provider until two years ago, and relatively well but felt like I needed to step it up. Big fan here at GHLF of Walgreens. So anything that we do with pharmacists that we can raise them up we love because they do such important work. In addition to identifying different issues, but also in getting us access to our treatments, like the specialty pharmacist or the retail pharmacist will help you navigate copay assistance programs and all these other things that as a chronic disease patient, as someone living with a disease like migraine, it’s one less thing that we have to do. So I think that work that the National Headache Foundation is doing is is really great.

Tom Dabertin  12:53

Yeah. And we’ve been partnering with Village Medical, which is the operator of the urgent clinics inside Walgreens and also with Kroger, Kroger Little Clinics, which is Kroger’s urgent care facilities and with the Convenient Care Association, so that we can make sure that we’re providing the kind of education and the kind of information that those practitioners really need to serve the larger population. Again, we know that it’s going to be a long time before we can substantially increase the number of headache specialists in this nation. But if we can raise the bar for primary care, and the 650,000 primary care practitioners, including pharmacists, we can make a tremendous difference and positive difference in the treatment of migraine and headache disorders.

Joe Coe  13:50

I want to dig a little deeper about your Why. Why do you feel passionate about this work and why do you choose to lead an organization such as the National Headache Foundation?

Tom Dabertin  14:03

Well, I spent 20 years prior to coming to the National Headache Foundation as a certified management consultant. And I worked with a lot of not for profits. And so I know the not for profit industry well. I also held a very senior position at the Museum of Science and Industry previously in my career. And so I enjoy the not for profit space. I’ve worked in the private sector, I’ve worked in government, I’ve worked in, in not for profits and to me not for profit management and leadership is the most challenging because unlike the others, you just can’t go out and increase revenues. You have to be strategic in what you do. And so I find it very, very challenging and I find it extremely rewarding to be able to make a difference. The fact that I’m able to make a difference in the lives of people who are affected by migraine and having had migraines myself, I can understand firsthand of what they go through. I want to make sure that the next person that has a five year old for example, doesn’t have to doesn’t have to give up that day that they can go out and they can enjoy the day with their children and with their family and do all the things that we want to do instead of endure my another migraine attack, so, to me, it’s very rewarding to be able to know that I can make a difference.

Joe Coe  15:26

That’s really amazing. And thank you for that difference that you’re making. Let’s have a little fun now. I read in your bio that you created the Pierogi Festival in Indiana. Can you talk to me about the Pierogu Festival and what brought you to that?

Tom Dabertin  15:42

Sure. So Pierogi Fest actually is a very well known festival, draws all kinds of national attention. We just recently were named by MSN as one of the best festivals in the United States. Last year, we were named by Reader’s Digest as one of the 15 best festivals in North America. We’ve gotten similiar honors from Yahoo, from the Wall Street Journal, from TripAdvisor and from Oprah Winfrey Magazine. So we’ve gotten a lot of acclaim. It is a festival that is run exclusively, it’s run and organized by volunteers, about 600 volunteers. And it’s held in a small town called Whiting, which I grew up in and my family has lived in for over 120 some years. And it’s located just outside Chicago. And when we originally came up with the idea, we had no idea that of course Pierogi Fest would be so so popular, but it was really a way to celebrate kind of have a fun celebration of ethnic heritage. And one thing about Pierogi Fest is whether you are Polish, Slovak, Italian, Hungarian, you can be your roots can be from South America, from Africa from Asia. People enjoy the festival. It’s wacky, it’s fun, it’s entertaining. And we have one of the best food menus of any festival in North America. Saveur Magazine, which is a food cuisine magazine pointed that out some years ago that our menu is so exhaustive and the reason why is because we limit the number of duplications. So with the exception of pierogis, and maybe a few other East European dishes, we you know, we limit the number of people selling say elephant ears, there might be only one elephant ear vendor, even though we draw over 350,000 people.

Joe Coe  17:38

Now I have a couple of questions about pierogis. What’s the most unique pierogi that you’ve come across?

Tom Dabertin  17:45

So you’re asking actually, when it comes to pieorgis itself, I always say that I don’t eat them so I can save them for everybody else to savor. I have never been a huge fan of pierogis, per se. I think the most unique that I’ve seen is we had alligator stuffed pierogis at the festival. And that was up through the pandemic. I don’t know if we’ll see it. We did have we did have kind of a soft launch last year of the festival again. So I would think that we’ll have alligator stuffed, we’ve had- the ones that are probably most interesting to me, you can bake them, you can fry them, you can boil them, there are so many ways to cook them. I’ve seen them even cooked on an open grill. But there was there’s also fruit stuffed pierogis. And they’re kind of deep fried. It’s kind of almost like a deep fried donut with a jelly inside kind of like a deep fried Pączki. And so those are very popular. But the mainstays that you know, the the cheese and the meat and sauerkraut are still probably the three most popular versions.

Joe Coe  19:01

I don’t know why my head goes to potato.

Tom Dabertin  19:06

Potato is right up there. I’m sorry, I left potato out.

Joe Coe  19:10

Yeah. I hate potato. So is this scandal? Are we breaking news that you don’t really pierogis?

Tom Dabertin  19:17

Well, it’s actually documented. It’s been documented before that I don’t really pierogis. It’s kind of a fun, it’s kind of a fun twist. Again, Pierogi Fest is fun. It’s designed to be a little quirky, and a little outrageous. And so it’s kind of fun that the chairman doesn’t eat pierogi and I have been interviewed a number of times over the years and been asked why I don’t and again my answer is I’m leaving them for you and everyone else

Joe Coe  19:43

That is very noble of you, Tom. How will people find out more information about the National Headache Foundation? Amazing. And I’ll also remind folks that National Headache Foundation has a podcast called Heads Up and I had Lindsay on the show a bit ago, and I was on Heads Up and it’s, you know, if you if you’re into podcasts, and you’re listening to this one, you can go over to Spotify and Apple and all those fun places and type in Heads Up and subscribe there too.

Tom Dabertin  19:50

You can go to headaches.org. We have a great website. We have lots of materials, lots of learning opportunities. I do want to mentioned that we’re shortly going to be launching a series of both live forums and training videos for veterans and for those in the military, because we know that that those who serve this country with their lives are affected by migraine, more so than the general population. And so we’re doing some veteran centric training videos that will be hosted on our website and other social platforms. And those will launch shortly. And you can go to our website though and pull up all kinds of information. You can even pull up a list of individuals who have completed either the AQH certification or the UCNS certification, which makes them headache specialist, or at least they you can find out if they’ve completed the primary care migraine certification. Yeah, it’s really it’s been a very successful program. Lindsay does a great job. And, you know, it’s, it’s amazing. Again, thinking back to my own situation in the 1970s, there was really nowhere for me to get information. What’s great about this point in time is that we have a more educated population than ever, you can go online and you can pull up information on just about anything. If you’re, you know, if your dishwasher isn’t working correctly, you can pull up a video that will tell you what, what’s wrong with your dishwasher. Well, what we’re trying to do is provide information that people can pull up and find out what’s wrong when you have those severe headaches, when you have that nausea, when you have those auras, when you have that sensitivity to sound. We want to we want to give people information. And that’s really our key our key mission, whether the information is for certification for practitioners or information for veterans or information for general the general public.

Joe Coe  22:06

Amazing. Well, I’m all out of questions. Was there anything that I missed that you would want me to ask?

Tom Dabertin  22:12

No, you’re such a great host. You’re so thorough and do a fantastic job, but we’re very pleased to to be able to talk to listeners about the things that we can offer. And we’re looking forward to some continued success with our different programs. And, and once again, I think it’s just key for everyone to understand how many people are affected by migraine, and by chronic headache disorder. It’s not, it’s you know, it’s not just something that maybe your partner or your spouse or your child has. The fact is, is that it’s 52 million people over age 18 that are affected. It’s a huge, huge number of individuals in this nation and and it’s our goal at the National Headache Foundation, to try and educate everyone on how those how those headaches can be avoided, how they can be treated, how they impact, can be reduced and we’ve got we’ve got a pretty, pretty large encompassing mission and a lot to do but we’re proud to do it.

Joe Coe  23:22

Amazing. Thank you so much for your time.

Tom Dabertin  23:25

Thank you.

Joe Coe  23:27

Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain, head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.

Narrator  23:43

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

Narrator  00:00

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

Joe Coe  00:09

Welcome to Talking Head Pain, the podcast that confronts head pain, head on. I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation. I’m also a migraine patient, have been so for 20 years, so I know what it’s like to live with this disease. This week, I’m speaking with Alicia Torborg, a dear friend who’s also a migraine patient and the Executive Director of the Association of Migraine Disorders. It’s an amazing organization focused on migraine research, education and advocacy. I’m here with a really good friend and powerful leader in the migraine community, Alicia. Alicia, how are you feeling today?

Alicia Torborg  00:47

I am feeling well today, as a matter of fact.

Joe Coe  00:51

That’s great. And can you tell us a bit about what you do and your connection to migraine?

Alicia Torborg  00:56

So I’ve had migraine for most of my life. It started when I was about 10 years old. It has come and gone and taken different shapes over the years. And as I got older, they were no longer calling them migraines. They were calling them tension headaches, and they were debilitating. They were every single day. You know, at one point they were- I was going on about five months of chronic pain every single day and nothing was helping. I saw a bunch of different doctors, a neurologist, homeopath, chiropractors, I did yoga, changed my diet, did everything I could possibly think of and nothing was helping. So finally I said, “Let me talk to an ear, nose and throat doctor and get allergy tested, maybe there’s something I’m allergic to.” And he had asked me a ton of questions and finally had said, “They’re definitely still migraines, and we should treat them as migraine.” So, you know, we started a different regimen of medications. Everything is you try and see what works. And you know, some things helped and some didn’t. But I worked closely with him as a patient-doctor relationship over the past few years. But after about a year, I had said to him that I was going to be changing careers. My background was in finance and banking. And I was going to go out on my own and do some program management. And he was asking me more about what I did. And he said that he needed an Executive Director. So here it is seven years later. And if you had ever asked me five years ago, where do you think you’re going to be in five years, I never would have said in the nonprofit world in migraine, ever. But here I am. And it’s been such a rewarding, terrific ride. I still have migraines, though.

Joe Coe  02:38

I think many of us can relate to that. Tell us about the Association of Migraine Disorders. What’s your mission and what do you do?

Alicia Torborg  02:45

Yeah, so they were established in 2012. And like I said, he’s an ear, nose, and throat doctor. So many people say, “Why is he leading this organization? Why would an otolaryngologist be doing this?” But he was seeing so many patients that were coming in saying, “I’ve got to have sinusitis, you know, I’ve been on antibiotics, but they’re not helping. I get scans and they show I’m clear,” but they kept being treated for sinus infections, when in fact, so many of them were migraines. So he started this organization, this foundation in 2012. And our focus is to expand the understanding of migraine through research, education, and awareness. So we’ve got different programs under each one of those pillars.

Joe Coe  03:27

I am a big fan of your organization and supporter, you do amazing work. Can you talk a little bit about the comorbidity project that you recently launched?

Alicia Torborg  03:38

So, we recently hired, she’s an RN, and she’s got a background in writing and an interest for just researching. So we have found over 75 comorbid conditions that are common to have with migraine, ranging from endometriosis to anxiety and depression, even Alzheimer’s. But there are 75 of these conditions. So what we’ve done is written about the correlation between these two and then given suggestions on what type of doctor you should see when you have both of these conditions, medications you should consider and avoid. But we also align with allied partner organizations. So we realized that we may not be the expert with depression or mental illness. So we engage with these allied partners and work with them. They’re all thrilled just to be working with us that there’s a, you know, more of an interest in these conditions.

Joe Coe  04:33

Many of you may not know Alicia and I are from the same county in New York. It is the smallest county in New York. And that means that we share a special bond and I got to live that bond with Alicia and some of our colleagues at the Association of Migraine Disorders during a hike in Scottsdale, where I thought they were taking me out to kill me. It was a very intense hike. I said, “Yeah, I could do that.” It was an actual hike. In New York when I think hiking, I think like an incline, you go up a little bit, you know, in the forest. This was a pretty intense hike. Can you talk about your history doing this at the American Headache Society meeting and, and what was the hike like that you took me on? You could explain it better than I can.

Alicia Torborg  05:22

So several years ago, we started this hike with the founder of AMD, who happens to be about six foot four, very long legs and my other partner at AMD, who was also blessed with height. I am not, I’m five two on a good day if I really stand up tall. So I went for half the hike with them. But I was with another person who just wasn’t quite comfortable going to the top, which I think is equivalent to 180 stories. I would have to fact check that I’m not positive. But so I had gone halfway up once before. So then I got Joe and I said, “Joe, we have this fun day, and it’s adventure, it’s a great adventure. Come with us, you’re gonna have a blast.” So Joe did and I think you and I are probably comparable in size. We went up this hike with these other two, and I would say they would be qualified as athletes. I mean, they’re both pretty athletic. You and I are in good shape, Joe. But so we went up this hike that was perilous. I mean, it was climbing hand over hand, crawling up rocks. It was above my skill set. For sure. We did it and I did it in running shoes. Like really wrong, wrong choice for for the for the hike, I was thinking New York hike. Now I have hiking shoes for next time. Just so the audience can really feel what I felt, I get to the mountain. It’s Camelback was the name of the mountain. And there are signs that are like, “It’s not too late to turn back, you could die.” And I’m like this is really comforting. But then I said, “You know what, if this is my time, and I’m gonna go out on a hike, I’ll be with good people in a beautiful place. And it’s meant to be.” So we did it. And it was really it was really cool and a great bonding experience and something that I definitely cherish and brought me closer with your organization because I literally felt like you guys had my life in your hands. I trusted you and you did a great job with it. I had such a great time, really fond memories.

Joe Coe  07:40

What are some things that you have you learned in the past seven to eight years of doing this work professionally? You’ve been a patient, you’ve been a person living with migraine for so long, professionally, what has been some of the most rewarding moments for you in this work?

Alicia Torborg  07:58

I would say over the past few years, I joined this council, Disparities in Healthcare Advisory Council. And they would each month, they would have experts come in and really teach us about different cultures. And I was so eager to, to learn. You know, I feel like I’ve lived somewhat of a sheltered life, some would say a privileged life, that I had so much to learn. But I would also come to these meetings saying, “I can’t change the world. I’m only one person.” It’s easy to get overwhelmed, and put your hands up and say I can’t do anything. But I would go to these meetings and say, “What’s the one thing I can do? What is the one thing I can walk away tomorrow and do something personally or professionally?” And I realized there were so many things I could do professionally, you know, to help. And you think like with this little organization, this little nonprofit, what can you do? But it’s inviting scientists, you know, people of color to you need to have a seat at the table, you need to be involved in, in research. We need more scientists that are from diverse backgrounds, and less people that look like me, and you know, more color, more background. So one of the things that we had done is we created this, they’re called Health Care Provider Kits and they’re really to help clinicians diagnose and treat migraine. So I know with me, like I said,  I have good health insurance. I’ve always had good employment, I live in a nice area. It was really hard for me to find a good doctor. So imagine being indigenous and living on a reservation. You can imagine how difficult it would be to find appropriate health care. Imagine not having medical benefits or a good job or a car to drive yourself to it. I mean, there are so many people that obviously have so much less than I do, than we do. So we really made it our goal is to get these free educational tools out into the hands of clinicians, not just doctors, but nurses and psychiatrists, and dentists and people who work in clinics and emergency rooms and in on reservations, get these materials out to these people to help diagnose and treat people, which, by the way, migraine is so much more prevalent in these communities as well.

Joe Coe  10:23

I love what you said, Alicia, about the one thing that we can do. I think that’s something that we all can think about in different ways. We talk about really hard topics working in healthcare. People are feeling isolated, alone, people are struggling to get access, people are struggling once they find a good doctor to be able to afford and find the right treatments. So we often are fighting all these different battles and putting out all these fires. And as advocates, I think it’s important to take a step back like you did and said, “You know what, I could focus on one thing, and what’s the one thing that I can be impactful and do.” And I think that is a really good way to tackle these larger problems because you’re one thing adds onto my one thing, adds on to the National Headache Foundation’s one thing and the American Migraine Foundation’s one thing and it’s just a way that we all build and and do this work collaboratively. And I think that’s a really smart and sensitive way to approach it. So you didn’t talk about one of my favorite programs that you guys do, which is Shades For Migraine. Light sensitivity has always been one of my issues. Even when I’m not having an attack I’m light sensitive. You see right now I feel fine. I have all of my lights off, just natural lighting. So when I came across Shades For Migraine, doing this work at Global Healthy Living Foundation, I was like that is a cool event. You ask people to wear sunglasses to raise awareness around migraine. Can you talk a little bit more about that event, how it started, and how many people you reach?

Alicia Torborg  12:07

Sure. So and I’ll back up even a little step before that. So many of our programs, like you’ve heard me talk a little bit about research, a little bit about education, they are so important to us, they are pillars and to my core, I believe they’re just so important. They’re serious programs, so you don’t get a lot of laughs in those programs. Like it’s good, serious work. Shades For Migraine, it’s a fun program. It’s easy to participate in. The only ask is wear a pair of sunglasses, take a picture, share it on social media. And it can be anyone. It could be kids in a school, it could be your parents in an assisted living, or you know, anywhere. It could be a Headache Clinic. It’s just really raising awareness about migraine. So we have these purple sunglasses, which you’ve seen, I know you have some. They are kind of the signature symbol for it. But we say any, you know, sunglasses will do but we’ve recently unloaded 15,000 pairs of sunglasses. So now I can add manual labor to my to my resume. You’re getting ready for the hikes and all the physical activities by lifting sunglasses, it all it all ties together. Right. But it is such a fun campaign. A few years ago, prior to COVID, we all went down to Times Square and we’ve gone to the Today Show. We try to get on the Today Show every year. We’re out there in the square first thing in the morning. And you know, we’ve met Al Roker and Hoda and just have always had a great time. But we went to Times Square a few years ago and handed out 1000 pairs of sunglasses. And we brought a local newscaster with us and they were on tour buses and just interviewing people on the streets. And it was amazing. It was- people were crying. Some people we interviewed were actually crying because they could not believe that there was so much attention to a disease that really does not get a lot of attention. I love the event. It somewhat inspired a conversation I had with a fashion designer that we work with for New York Fashion Week around arthritis, Michael Kuluva and his line, Tumbler and Tipsy. Said to him last year, I was like, “You need to do something for migraine. Can you design a shirt,” and he’s like, “I’ll design a pair of sunglasses.” So he designed a pair of sunglasses for the fashion show last year that I got to wear. It was remote modeling so everyone modelled from their their locations because it was during the middle of the pandemic and Shades For Migraine inspired that. Because migraine and sun and light and sensitivity and sunglasses, that’s something that people can relate to. And you guys have done an amazing job in amplifying and creating this really fun, like you said, grassroots campaign that’s super accessible. Most people have a pair of sunglasses that they could grab and put on. There isn’t, you know, a large entry to participate, you just do it, raise awareness, and feel good and feel proud of living and thriving with a chronic disease. So I love Shades For Migraine, I’m a big fan. Is the website shadesformigraine.org?  It is.

Joe Coe  15:20

So I encourage folks to go to shadesformigraine.org and definitely support that program. It’s a really great one.

Alicia Torborg  15:37

Thank you. Yeah, it’s fun. And we have people participating internationally. So in many different countries, and people just love to be part of it.

Joe Coe  15:45

I meant to ask this earlier, I like to start the episode with, if I’m talking to someone that has migraine, if they can remember what their worst migraine attack was like. So for you, what was that like? How did you feel? What did you think?

Alicia Torborg  16:03

I can remember back to being a child. So I was about 10 years old, and they would come and they were so terrible. And they would start with an aura. And I don’t really get auras that often anymore. But they would start with an aura. And then I would get this  unbelievable pain. This was a recent realization in my life. Teachers used to ask me, “Are you being bullied?” And I would say no, because back in New York, you never told on the kids that were bullying you. But I totally was, I was being bullied and I was being chased home from school. And I wonder if that had anything to do with like, that anxiety, I wonder if it had anything to do with the actual migraines or not. But it’s funny, I never would have told on anybody either. Now as an adult, I’m thinking, gosh, if I told them them, they would have gotten in so much trouble. These were like New York City cop’s kids, like strict parents. Those kids would have gotten in so much trouble had their parents known that they were chasing this little girl home from school. Those were the worst. Like, emotionally, they were terrible times but the physical pain and the nausea and the sickness that I would endure. I can remember begging my parents to take me to the hospital, or to the doctor so they could put me to sleep. And they would give me some kind of a shot that would literally put me to sleep.

Joe Coe  17:25

Well, that’s really- well, I’m sorry that you experienced that as a young person. And we fail our young people as a society by allowing a climate that creates bullying, and it happens to this day. That concept in adverse childhood events and trauma is something that is really of interest to me. I wrote a little bit about it in a Medium piece that I published a couple months ago around language and stigma. And I too wondered, like you do, as an adult looking back, did being bullied as a gay kid in Rockland County, did that impact, did that create more stress and make me, if I was predisposed to having migraine, had me had migraine attacks earlier or more intense. And I wonder that and there needs to be a lot more research on that connection. And it’s something that I’ve publicly called for researchers to look at. I know our organization, as does yours, would would like to see some more factual as opposed to anecdotal, because this is us, you know, bring our stories here around that. Because I think that a lot of people share that experience. And if you are living in a culture that is putting you down, or if you’re being bullied or if you’re not feeling safe and secure, what impact does that have on you if you are predisposed to having migraine? That’s a really interesting research question that that should be addressed.

Alicia Torborg  18:57

I imagine there’s a connection between stress and anxiety and, and migraine or other diseases, too. Was there anything that I didn’t ask that you would like to cover? I only say, advice to people is to always be looking for something. I know with me, I always try to think like, “Why do I have migraine right now,” or, “Why am I in such a bad cycle?” Is it something I’m doing, eating, stress? Something, am I doing it? Is it environmental? I’m always looking for reason. And sometimes there’s just not a reason. Or maybe there is and we just don’t know. And we may never know what the reason is, just your luck or genetics or whatever it is. But I’m always looking for the next solution, something that works. And it’s combination therapy, it’s maybe it’s glasses, maybe it’s neuromodulation devices on top of medications and supplements. But I know it can be so easy to get frustrated and just sit in the dark and just be like, “Oh gosh, this is my life.” You know. That’s one piece of advice. My other advice, and this helps me so much is, and not everyone can do this all the time too and I totally get that if you’re vomiting, you’re not going to go out and go for a walk. You’re just not, you can’t, it’s not reasonable. But I can’t tell you how many times I’ve really felt bad, like, the pain is bad. I’m in a dark place. And I make myself go out and go for a walk. And like, you know, I could lay in bed and that’s all I think about, or I could be outside in nature with my dogs. And at least I’m enjoying that walk with my dogs or my kids or just by myself. And it takes my mind off it a little bit. And sometimes the endorphins just help. So those are the two things that really seemed to help me. Really great pieces of advice. We discussed a little bit of the second part in an episode that we did with Dr. Lindsay Weitzel on Outfoxing Your Migraine, and it surprised me that she was talking about how she or someone that she works with will listen to music, or go under their covers and watch a TV show and listen to it if they had the light sensitivity or vice versa, to distract their mind from some of the pain. And it seems so counterintuitive. But I’ve definitely tried those tactics if I’m not feeling great. And I’m able to go out for a walk or listen to music, or do something that I know makes me feel good. And if you have to stop, you stop. And I’ve certainly done that too. But it’s the your point, Alicia, is the trying. And I think what I’m hearing you say is is that we need to provide space for ourselves to give ourselves the gift of doing all that we can to make ourselves the best possible version of who we are. And that comes in all different ways.  Right. I agree.

Joe Coe  21:46

Well, this was so nice. Thank you for being so open and sharing and really appreciate your organization and all the hard work that all of you do day in and day out to support migraine patients and the people that love us. So thank you.

Alicia Torborg  22:20

Thank you, thank you. It’s important work and I’m so passionate about it. So I feel blessed that I’m able to do this. So thank you for listening. Thank you for having me.

Joe Coe  22:33

Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts  head pain, head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.

Narrator  22:49

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

Narrator  00:00

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

Joe Coe  00:10

Welcome to Talking Head Pain, the podcast that confronts head pain, head on. I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation, and I’ve lived with migraines for over 20 years. Throughout my journey, I’ve rarely seen migraine discussed on national TV. But today’s guest brought migraine awareness to one of the biggest stages in the world, Jeopardy. Nicky Smith is a patient advocate and debate coach and a recently featured contestant on Jeopardy.

Nicky Smith  00:39

For migraines, I’ve gone to witch doctors, I’ve done healers, I’ve done everything imaginable. Grand Master Danadoost. Like I’ve, I cannot s**t on any form of science or astrology or anything. I’m open to anything.

Joe Coe  00:55

Who is Grand Master Danadoost?

Nicky Smith  00:57

Grand Master Danadoost, he’s a guy that just like, does readings and is like a Master Healer, and he’ll give you his CD and he’s up in the hills in some mansion in the middle of nowhere Bay Area. You know, Murrin Napa area. And that was just very bizarre. And he’s just, you know, the, the witch doctor actually knew a lot about me that I don’t think I told them. So that was actually interesting, but she wanted to kill a good amount of animals behind me. And I don’t know if I would have really believed it. So, a lot of people said I should have done it in retrospect, but you know, she’s still there. Probably. So who knows?

Joe Coe  01:33

Well, I mean, we’re kicking off Talking Head Pain talking about animal sacrifice. This is a new area of exploration for us. So thank you. I’m really excited to talk with you, Nicky. How are you feeling today, Nicky?

Nicky Smith  01:48

You know, dizzy. But beyond that, you know, yeah, getting by, getting warmer, so not a fun migraine trigger. But in many ways, life is good. So I’m good.

Joe Coe  02:01

Some of us may have seen you on Jeopardy, which is really exciting. How was that experience being on Jeopardy and using that platform to raise awareness?

Nicky Smith  02:11

Yeah, it was definitely intense. Imagine, you know, the brightest light you can imagine right over your head right in front of you, you know, moving lights, moving cameras, all that. Pretty sure I blacked out through a good chunk of it. I don’t remember a lot of it. So it’s funny watching yourself later on TV and being like, “Oh, at least I got that answer right.” Things like that. The interesting part is I had so many people, even in the migraine community, you know, that work with migraine organizations being like, “You look so normal up there, you look like there was nothing going on.” And in my head, you know, obviously rooms spinning just, sharp like razor pick in the head and throughout the spine, you know, super dizzy, super nauseous, super fatigued, but you can just look completely normal. And so I think just people to see that, that someone can you know, you’re on live TV look like everything’s under control, but in your brain is chaos. So that was interesting. But just you know, the best part about it was being able to talk about the condition, having so many people reach out and talk about how isolating it is, how they’ve never heard dizziness, or, you know, vertigo or even like, yeah. How often you even hear the word migraine on TV or in movies? I think other than Lucille Ball and Arrested Development, the word Vertigo is, other than that Hitchcock movie, which isn’t really even about it. So just to be able to talk about a condition that’s so prevalent, that affects so many in such a horrible way, and that’s not mentioned at all was great just to have so many folks be able to connect. And you know, we’re able to, I’m planning to start a support group in the Bay Area from this, I’ve been able to just get, share and connect with so many folks with resources from this. So that was the best part about it. But Jeopardy, you know, it was a whirlwind. I can, you know, get them more into that. But it was definitely a blur, to say the least.

Joe Coe  03:48

That’s so interesting. A couple of things; one, and I won’t say what episode it was, but I recorded a whole podcast that I don’t remember doing. I can see myself, I hear myself, I’m like I was there. I did it, but it was during an attack. And you know, it’s amazing Nicky, what we can push through living with a chronic disease that we’ve lived with for so long. I definitely want to dive a little bit more into the experience about Jeopardy, but I created a little Jeopardy game for us to play which is more on the gay side than the Jeopardy side. I’m going to call it “Category Is” and if you could just answer with a sentence or a word, we can maybe dive into some of these questions a little bit more, but I thought it might be fun if you’re willing to play “Category Is” with me.

Nicky Smith  04:39

Oh yeah. Oh, I’ll play anything. Oh, all the games.

Joe Coe  04:44

Category is, the feeling you had during your worst migraine attack.

Nicky Smith  04:48

It’s when I first had my major you know, vertigo migraine attack. Geez, 11 years ago now. I was in my office. I was starting my PhD program. And it just felt like someone picked my chair up, spun it around 1000 times, and just kept smashing my head into the ground while they were spinning. It was like, you know, like Thor or something, picked up my chair and just whirled it around with such ferocity and anger and pain and chaos. And then I just remember calling the nurse hotline and being like, “Hey, I can’t really see anything. I can’t sit still or stand still. Everything hurts. My head keeps moving. My body keeps moving. It feels like they’re going in different directions. I don’t know what to do,” you know, you feel like you’re dying. You’re like, “This is this is horrible. Why won’t this stop?” And they always go, you know, “Come to the ER right away.” You get to the ER, and then they, you know, so but it’s it’s that was yeah, the first attack was the scariest because I didn’t know. You know, I knew I knew vertigo existed. I thought okay, the room spins. But it was just such a violent, chaotic, horrible. Just just the worst thing I could imagine that I wish upon no one. And then you learn that that’s, that becomes your norm. You know, as you said, you find a way to push through it and that it literally is my norm but when it first hit, it was just horrendous. Yeah.

Joe Coe  06:15

We’ll do one more. And I guess this is for Double Jeopardy. That’s the right term.

Nicky Smith  06:21

There you go.

Joe Coe  06:21

I hope I don’t get dragged for my lack of Jeopardy knowledge.

Nicky Smith  06:25

You’re good. You know, I didn’t even, I hadn’t watched the show for a year and a half when they call me. The only reason I watched it before was for the initial audition to get on the show. I can’t watch Jeopardy. It moves so quick. I told him I’m like, “This show is way too dizzying. I can’t watch it.” So I don’t blame you at all. But hey, whatever.  Yeah, go for it. Got to talk about migraine on it at least.

Joe Coe  06:48

Amazing. So category is, what it means to be a queer person navigating the medical system.

Nicky Smith  06:54

Yeah, I’m, you know, in a lot of ways I quote unquote, pass. You know, doctors just look at me and go, “Oh, how’s he going?” Or, you know, they’ll assume my partner of anything, or they’ll assume gender, they’ll assume gender of a partner, or they’ll assume this. And, you know, it can it’s that, like, million little cuts, and you just, you know, in some ways, kind of go, just give up. And for me, I you know, I navigate with a family where I don’t really, you know, care to educate them about things like pronouns and stuff. It’s just, they’re, they’re isolated, and it’s just not their, their world, they don’t really interact with it. And I would just, it’s just, I have so much, so little spoons and energy. So I really kind of control who I think I can you know, educate and, and change. And things with doctors, you only try so many times, and you go like, “Alright, just fine. Misgender me, call me what you like.” So that’s, that’s one aspect of it. I mean, the other one is just the cost and the fear of life in general with, you know, being queer and being disabled. You know, your employer can fire you for really any reason under our system, they don’t have to say it’s because you’re queer/disabled, they can say, “Oh, because you came in a minute, late that one day,” or, “Because you looked at me slightly weird,” which for someone that can’t look at screens, and does tons of Zoom meetings, I mean, I guess I’ll say this now, that’s why I look away from the screen, because I can’t really look at screens long at all. And so literally, you know, an employer or a doctor couldn’t make up any reason for not wanting to see you again, and not wanting to support you. And when so many treatments that we need aren’t covered by insurance. I mean, right now, I paid I think $6,000 out of pocket, just to see one provider, which isn’t their fault they’re not covered. They’re a great provider. But the treatments they provide that we need, insurance industry doesn’t care about dizziness and doesn’t want to treat it preventatively because it’s so subjective in their mind. And it’s, you know, a lot of people they view it as people complaining to get meds or what have you. So I think you add that with queer folks who generally disproportionately have more difficulty finding stable jobs, stable housing, stable health care. I’m, you know, privileged in infinite ways, but I think it’s especially true for fellow like queer and trans folks, especially folks of color, low income folks. You know, folks with disabilities. So I think just, you know, navigating the relationships with the doctors, hopefully finding ones that are at least kind and patient, and then just finding advocates and organizations, hopefully, that can help you. Because that’s a difficulty too, especially with our insurance, gatekeepers to our care. And just, I try my best to share resources with folks so that we can hopefully find our ways around how this system, you know, excludes us and doesn’t want us to provide the care, to get the care that’s needed. But it’s definitely exhausting. That’s that’s a good word for it. You know, they wear you out to the point where like, “Should I keep trying treatments, or is this just going to be the rest of my life?” That’s a pretty horrible position to put someone in with a chronic disability like. The system basically pushes them to the point that they go, “Should I just give up forever and accept for the rest of my life, I will see the world just through a chaos spinning, horribly, pained, fatiguing, nauseating, just forever drunk on a boat that’s spinning down a hill.” And that’s a really bad place to put humans in through a system that’s supposed to provide, you know, health care and treatment.

Joe Coe  10:32

It’s interesting about talking about gatekeepers. I was on my colleagues podcast, The Health Advocates, and I shared about my experience getting on migraine treatments, and how I was on the phone with our insurance company for like, the third or fourth time. And I finally said, after getting pushed around for over a month, “What’s the cheat code? What do I need to say?” Because it kept getting pushed back based on a doctor not checking this box or this not like it was this bureaucratic nonsense, like it was no real reason. Except they were delaying the treatment because it saves them money in the short term. So I asked what the cheat code is. And there was a really good episode on The Health Advocates around the cheat code for insurance companies and basically asked them like, “What do you need me to do exactly?” So yeah, that’s a really powerful how you describe that. We’ll stop playing this game, we’ll get back into the serious interview, standard podcast, I read a little bit about you, Nicky, and there’s a couple of areas that I thought were really interesting to explore. You are really connected to X-Men. What was it about X-Men and Marvel that drew you to that universe?

Nicky Smith  11:46

So, so two things I’ll say before I forget. One, that cheat code, you found, if you wrote that down, or you remember any of it, if you would be down to put that, you know, in my Twitter, @NickySmithBucks, Nicky, N-I-C-K-Y. I have a doc, and this is just a you know, I have a document link that anyone can add to, anyone can view, anyone can share. And I try to put any resources on there that I’ve heard about that, you know, I’ve tried and then other folks have added. And I think having like that cheat code on there, you know, for example, there’s things like when you appeal something, you can say, “Hey, this treatment that I need here isn’t close enough to me elsewhere.” And that’s like, for example, a coded language that insurance companies will go, “Well, I guess you can’t drive 50 minutes away, fine, we’ll let you go to this practitioner closer to you.” There’s like certain languages like that in the appeals that I just think, as you mentioned, you know, or, or numbers, you can press to skip the automated system. So we don’t have to hear the music. And then people talking over the music, which is, I think a big migraine trigger is having to hear two things at once. And I love that hospitals don’t realize that when you have to listen to their, “We’ve won the best hospital program in the past five years.” And they’re doing it over super loud jazz music, and it’s like, great, I have to listen to this on for an hour to make sure I can complain to your insurance company that you’re not covering me or what have you. So yeah, that’d be great to share that stuff. But yeah, in terms of the X-Men thing, I realized that a doctor, the first neurologist that I saw for vestibular migraine sent me a resource list over the UC, like, University of California San Francisco Hospital messaging system. And no one told me I had access to that messaging system. I didn’t know the messaging system existed. And then six years later, when I was looking for my medical records, they said, “Oh yeah, go to this message, this system.” I see the message, they sent every single thing that I wish I had tried right away, and I had to wait six years to see it because no one at the hospital mentioned, “Oh, we’ll be sending you a message with with what you should do post treatment to actually help yourself.” And so I went you know, “Screw this,” which I wish I did earlier on and I got every single book about migraine, vertigo, dizziness, the brain, neurology. Anything I could find, and I read probably like 150 books in a summer. You can get them all free from your library, you can request them from other libraries through the loan program. And one of the books talked about how migraineurs are considered the some of the original superheroes because when a storm was coming or the rain was coming, the person with migraines in the in the group or in the tribe would stop and kneel and just grab their head and like or point up at the sky and then rain would come, you know, a few hours later. Then and then people would know, “Oh, we have to stop and we have to set up camp because rains coming because our superhero let us know that the rain was coming.” And so I like the idea that you know, migraineurs are considered the original superheroes but also like, you know, I get that the superhero movies are dominating everything. And they’re they’re crappy a lot of ways. But when you think of X-Men, all of them have different, you know, disabilities, quote, unquote, that are viewed they’re viewed as freaks. I think X-Men just their whole, they’ve always just been kind of like the freaks. They, there’s a lot of community there. There’s the school, there’s the education of each other, the education of the young folks. And I think that’s like the best thing, like the queer community and the chronically ill community, the disabled community can do is make young, is helping young folks not feel isolated. Is to help young, like educate and advocate with young folks. Is to have our community be able to assert ourselves in the world, and advocate for ourselves. You know, we’re superheroes in that way that we’re able to survive this. Like, if you were to give, I at least say if you’d give, like my nausea, or my fatigue, or my body pain, or my head pain, or my dizziness, even my congestion, even my tinnitus, my phantom smells, my like, if you were to give any of my conditions to anyone else, they would fall on the floor, roll around, scream, cry, say, “I’m gonna die,” call 911, say, “You need to come get me now.” And just the fact that there’s so many of us that live with that constantly, for over a decade or years, is like, I don’t get you know, I’m, I’m whatever. The young people and other folks that are even, that are more screwed by our system that they need the platform that should that that should be front and center. And I’m just saying there’s so many of us that survive like this. And that’s like, you know, the fact that we can survive, that is just is a beautiful thing. It just shows how powerful the brain is. And how powerful our community is. It’s like infinite people have helped me in infinite little ways. And it made life worth living with this, you know, so, and that’s a lot of fellow queer folks, a lot of fellow disabled and chronically ill folks, you know.

Joe Coe  16:39

And that’s super interesting. I always felt connected to that story. Because as a, as a gay person in a fairly conservative area, X-Men used their their differences, and it was a strength and it was something that they drew power on. And while they were marginalized by the community, they created their own. And they were celebrated, which was really, really empowering. And I think that Nicky, you said, it’s so well, talking about the connections between the chronic disease community and the LGBTQ community and how we often build our own systems of support, because we might not have it within our homes or within the medical system. We aren’t heard, we aren’t believed, we aren’t empowered to, you know, take control of our lives. So I think that story with the X-Men is a really good one and really interested me. So I’m glad that you like that, too. Do you have a favorite character?

Nicky Smith  17:40

Yeah, you know, it’s funny, like Storm is just the hair is so great. Just the fact that your condition gives you such cool hair. And if my hair wasn’t pink, I have tons of you know, the salt and pepper. So if some day, I just get that natural, like streak silver streak through and you know, Halle Berry. Great. And I don’t know who plays the new young Storm is great, too. And, but also the dude that puts on, I think Evan Peters plays him, where he puts on the glasses and just runs around and like messes with the cops and the military. And I always forget that dude’s name that can run really quickly. That’s just how I like, see the world is I feel like and how I move in the world. I feel like there’s multiples of me every time I take a step that stay behind me because I have you know, such dizziness where the world is moving. It feels like I’m still moving behind me. And so I’m like the least cool version of that superhero. But I just love that. The idea of being able to, you know, move at the speed of light, all those things. When you know, I’m moving at the- light scares me. So yeah. But those, what about you?

Joe Coe  18:45

Storm is my favorite too.

Nicky Smith  18:46

There you go.

Joe Coe  18:47

Storm, and you’re talking, Storm is amazing. And who doesn’t want to control the weather? I mean, like.

Nicky Smith  18:51

I know for us too. Yeah.

Joe Coe  18:54

Like Storm. No, go away. And I think you were talking about Quicksilver, Magneto’s son.

Nicky Smith  19:00

Yeah, what a great name.

Joe Coe  19:02

Amazing. I love, you’re the second person that I’ve had on Talking Head Pain that we’ve talked Marvel, so I might do a spin off one day. Want to just, last couple of minutes that I have with you want to turn back to Jeopardy. And I read that you’ve received a lot of messages from fellow migraine patients after seeing you on Jeopardy. What were some of those messages and how did that make you feel? And has it given you a different purpose or outlook during your migraine journey?

Nicky Smith  19:35

I used to be really big into organizing and advocacy. And then my chronic, you know, vertigo and vestibular migraines hit me, and it was just impossible to keep organizing. And I was bedridden for months. I can’t really do you know, like protests and marches really anymore. I can’t. I used to speak in front of thousands of people. That sounds pretty horrible now. And I used to do tons of screen work, you know, emailing thousands of people and coordinating meetings and just doing endless this kind of stuff. And I just, I just can’t really anymore. But I’ve tried as best as I can to, you know, share resources and do things with folks, you know, who have had brain injuries, I’ve had a concussion, who have these conditions. You know, I only know of a couple people that have had vestibular migraine, you know, 24/7 for over a decade. And it’s just but I hear, you know, cases about, like, especially kids with this. And it’s hard to tell a kid, you know, “Hey, get out of bed, this is your new normal.” But there are kids that I know that, you know, I’ve heard of, that are just they can’t go to school, they’re bedridden with this condition, because, you know, how are they, how are they gonna want to go to school if there’s constantly dizzy? How do they think they’d be able to go to school? And just parents feeling super isolated and alone with this. And the young people in general feeling isolated, and alone with this, and scared. And so I know, when I went to Jeopardy, I think initially, they were like, “Oh, you could talk about how you walk your cat,” and things like that. And I was, like, I knew the best thing that could come out of it is just being able to say the words, “migraine and dizziness,” and you know, “chronic dizziness” on TV. And like, no exaggeration, I’ve probably gotten like 500, 600 messages. It’s only been a couple of weeks at this point. It feels like it’s been so much longer for in every way from people throughout the world. And like the number one thing is, “I’ve never heard anyone else with this condition talk about it. I feel so isolated and alone with it. This is, I can’t go to the grocery store, I can’t do this, I can’t do that. It feels so isolating.” And just be able to connect people to resources, people connected me with resources, like I’m seeing a physical therapist now that’s helped someone with their episodic dizziness. And the physical therapist is seeing me on a sliding scale. And, you know, because my case is unique, which is, you know, a gatekeeper thing like, “Hey, my case is so unique. Will you see me for less maybe,” you know. But just like seeing all those messages, being able to connect people, being able to like, I think it energizes you. And I think, you know, a lot of people talk about the fear of being an advocate, and the fear of, of reaching out and being public with stuff. And I think it, yeah, I’m in a privileged position and lucky position to be able to do that. But I think a big thing for a lot of us is how fatigued we are. And how just debilitating our condition is. And I’m shocked by you know, the messages I’ve gotten, and the support I’ve gotten. I think that’s that enlivens you and energizes you to want to keep doing this work and reaching out to people, which then makes it a stronger community so that when you do have an attack, or when you do when you aren’t able to fully be there, other people can step up because they know what you’re going through. Like from Jeopardy, I would say the greatest experience, like one of the greatest experiences in the entire history of my life, is I finally met another human face to face with vestibular migraine. And it’s because they saw the article someone wrote about me on Jeopardy, and they’re like, “Oh, my God, I live like 10 blocks from you.” And there’s someone else with episodic vestibular migraine that lives five blocks from me. And I thought that was like maybe there was someone in Palo Alto I heard about, you know that as this, but I’m able to look, I mean, I look away from people’s eyes all the time, because I’m so dizzy. But for a half a second, be able to look in the eyes of someone that knows what you’re going to like face to face, that knows what it’s like to have, like constant dizziness for years, is like really just, you know, affirming and moving and, and supportive. And just to know that exists. And we’re out there.

Joe Coe  23:43

I think it’s a good lesson that we can make an impact. We can be on Jeopardy make an impact, or we could be on our school board, or we could be at the grocery store. It doesn’t really matter where we are, we could find ways to make change. And I think that your story, Nicky, really highlights that. I would be remiss or I need to ask, is there any like juicy tea about being on Jeopardy that we don’t see? Like, any behind the scenes drama that we should know about? Anything fun?

Nicky Smith  24:16

Yeah, the first little thing I’ll say is I really appreciate what you do and your organization. In terms of Jeopardy. You know, the funny thing about award shows is there was all that controversy in, I think was the 50s and 60s, with how rigged they were. And so then they heavily monitor them now and surveil them, and there’s like, you know, kind of like Ernst and Young wandering around and making sure everything’s legit. And you’re always mic’d all the time. And people, you go to the bathroom, people are kind of there. Everything’s just really monitored. I always forgot that I was mic’d. And so I’m up there on stage. I forget I’m mic’d. And I’m like, “Oh, I wish LeVar Burton was our host,” or I keep saying things kinda sh***ing on the show a little bit being like, “Oh, I really I missed, I don’t know why they didn’t pick LeVar Burton,” or something like that. And people kept having to come up to me like, “You’re mic’d.” And it’s like, oh, yeah, you know, you go to the bathroom and forgets like, “Oh, you’re mic’d,” you’re like, always mic’d. So that’s, you know, pretty funny in my view. I mean, the stuff we were talking about to, the other genderqueer person and I on stage, we were talking about just really like, kind of radical anti-capitalist history. And then they do this kind of Overheard on Jeopardy YouTube segments, and they’re like, “What are you talking about?” And we’re like, “We’re talking about abolishing the prison industrial complex,” and they’re like, “Oh, okay, yeah, we’re looking for more lighthearted, contestant chat for our YouTube channel, basically.” So, you know, it’s pretty funny. I always say you put me in any situation and inevitably talk about destroying the system created or something. So I don’t know, it was definitely very, very bizarre and funny. Another funny thing is that you come up on on set, in Sony Studios, and you see these huge posters for what Sony Studios is promoting. And they had The Good Doctor, and I’m on the spectrum, and I looked at that I was like, “F**k that show.” But then, of course, they asked a question about The Good Doctor on Jeopardy. And you’re supposed to, like, know that stuff. You’re supposed to know Sony Studios is going to ask questions that they promote, like, at the time your episodes coming out, so whatever. So that’s, you know, just dorky stuff like that. I mean, you do your makeup and, and hair at the Wheel of Fortune studio, which is super small, and then you go to Jeopardy. So that’s kind of funny. They tape five episodes in a day, so you have to bring multiple pairs of clothes. So it’s the illusion that it’s a new day, but really, it’s just go go go hair again, put on a different shirt and run out if you win, so yeah. It’s definitely a lot of like illusions and you know, they do a lot of cuts and things people mess up it’s it’s definitely pretty funny. Yeah.

Joe Coe  26:47

I love the hot mic, Nicky. Throwing shade at the host.

Nicky Smith  26:52

I know, I you know and the nice thing about Ken is he, you know, I you know, whatever. They’re like. Hey, Ken, if you listen to this and you want to reach out and you want to donate go for it. But like a lot of the people on the show and stuff, I mean when you mention that you have dizziness or migraines, everybody knows someone with migraines. Most people know someone dizziness, it’s the number two reason people go to the ER and urgent care. Like and then they just go, “Oh you have this,” and you connect with them and you connect with everyone with it. And so I think that’s something to learn from anything as you mentioned like people on your school board, people at your work people, you know. Everyone you know knows, odds are knows someone with migraine, knows someone with dizziness, or has those symptoms. And if you talk about the symptoms, they go, “Hmm,” and for example, these Prism glasses are like a godsend. And the person I met with vestibular migraine, she’s had it for years, she has never even heard of Prisms. And these, you know, and just stuff like that. Like, you know, I constantly talk about my Prisms. For people with brain injury, like I’ve had people with learning disabilities, with migraine, with you know, dizziness, what have you. There’s so many resources out there that we don’t know about that can help us and just yeah, you know. I hate to say don’t give up but like literally there’s so much stuff out there. And the system tries to make us give up as we talked about before but there’s there’s endless stuff coming out that you’re promoting or that you’re you know, making folks aware of and stuff so yeah. Thanks for what you do.

Joe Coe  28:20

Well, thank you for joining us today. This was fun Nicky. We you know went into it. We started with animal sacrifice and we ended with building a better community together so I think we really, really run the the gamut and it’s been an amazing discussion.  Thank you for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please leave an honest five star rating and subscribe so you never miss another. I’m Joe Coe, and I’ll see you next time.

Narrator  28:57

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

Narrator  00:00

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

Joe Coe  00:10

Hi, this is Joe Coe, host of Talking Head Pain, the podcast that confronts head pain, head on. I’m here with Dr. Kaiser, and he’s going to share some really interesting research that he is come across at the American Headache Society’s annual meeting. You’ll also hear from him about some of the work that he’s doing to help address the health disparities in headache and migraine care that are related to the LGBTQ community.

Eric Kaiser  00:39

Hi, my name is Eric Kaiser. I am soon to be assistant professor at the University of Pennsylvania, where I am a headache specialist and researcher focused on studying photophobia and migraine

Joe Coe  00:53

It’s such an interesting topic, Eric, and I’m really glad that I get to talk to you today to hear what you’re hearing about the state of migraine research for patients at the American Headache Society Scientific Meeting.

Eric Kaiser  01:06

Well, thanks for having me. I’m excited to talk about some of the thrilling research that’s going on here

Joe Coe  01:13

So can you give us some examples of things that you think patients should know?

Eric Kaiser  01:17

Yeah, I think there’s a lot of exciting research that’s happening, both kind of at the preclinical, as well as the clinical stage of things. For instance, this morning, there was a really exciting talk that was using some pretty exciting technology to look at how sleep maybe, sleep disturbance particular, leading to increased aura and using rodent models to be able to be able to demonstrate that and I think it could lead to really a better understanding of how sleep and headache might be interlinked between them. And then there was another great study that was done that looked at cannabinoids. So this includes how THC and CBD may be able to decrease light sensitivity, using a rodent model, I think will have real great applications for patients as well. There was another interesting clinical trial that looked at using artificial intelligence to be able to identify patients who may have atrial fibrillation, which could increase the risk of stroke and found that people with migraine with aura have higher rates of atrial fibrillation that hasn’t been detected. And that may be a factor that leads to increased risk of stroke for those individuals. And then this afternoon, there was a really interesting kind of discussion about how we may need to adapt what outcomes we look at in clinical trials to really better represent the patient experience and how they may respond to preventive and acute medications in the real world.

Joe Coe  03:01

So it seems like there’s been a lot of ground covered in the past couple of days at the American Headache Society. How do neurologists and other health care providers prioritize how they absorb this information? How do you approach a conference like this?

Eric Kaiser  03:16

Yeah, I think it’s, I think, you know, being present and attending meetings is really where you’re getting some of the cutting edge research, sometimes things that haven’t even been published yet. And so it’s really exciting to be in that space and, and then to be able to talk with those people in real life as well.

Joe Coe  03:35

It’s amazing and so important that people are here doing that work for us, as patients. I was reading your bio, and I thought it was super interesting that you did some work and awareness around the LGBTQ community and migraine, headache, and neurology. Can you speak a little bit more about that work?

Eric Kaiser  03:54

Been working with a number of collaborators from across the country, to try and outline this kind of state of the scientific literature as it relates to individuals who identify as transgender and gender diverse. And think about how, really the lack of research that’s out there, and how this population is being underserved, and both from a research and a clinical perspective. And so having kind of initial discussions of this is what the state of the literature is, this is how we can provide a more welcoming and affirming clinical environment to increase access for gender minority patients. And then what things should we be thinking about as it relates to potential effects of headache and gender affirming hormone therapy. And where do we go from here? How can we increase research in this area? What can we do to improve our clinical practices for really the stigmatized population?

Joe Coe  05:08

If you live in the US and you want to stay in touch with Talking Head Pain, text the word HEADACHE to 1-845-285-1563. That’s HEADACHE to 1-845-285-1563 and you will receive headache and migraine related resources, giveaways, and the latest Talking Head Pain episode releases.

Narrator  05:32

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

Narrator  00:00

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

Joe Coe  00:10

Hi, I’m Joe Coe, host of Talking Head Pain, the podcast that confronts head pain head on. I’m here at the American Headache Society’s Annual Science Meeting in Denver, and I’m with the CEO of the society, Howard Rosen. We’re going to hear from Howard about what the society does and how they’re helping neurologists and patients.

Howard Rosen  00:30

Howard Rosen, I’m the CEO with the American Headache Society. And my role is really one in which it allows me to work with talented, dedicated individuals who support the society, and also physicians and other providers who are volunteers.

Joe Coe  00:53

That’s amazing, Howard. And for those that don’t know, what does the American Headache Society do, and how does it help neurologists help patients?

Howard Rosen  01:01

I’m very proud of our mission. It’s to improve the lives of people with migraine and other headache disorders. So we’re a professional society, yet our mission and core goal is to improve the lives of people with headache disorders. That, to me, is an awesome mission to work as a part of. We’re largely an organization of neurologists but I think it’s important for your listeners to know we have primary care physicians, we have nurse practitioners and physician assistants, we have those with dental degrees, we have researchers, we have clinicians. And thanks to this sort of new phase of migraine, we have more than 2000 people who call themselves members of the American Headache Society.

Joe Coe  01:51

That’s amazing. It’s such a great point to bring up the other healthcare professionals outside of neurology that treat so many of us. Really, really critical. So we’re here at the American Headache Society’s Scientific Meeting. What research, Howard, do you think our listeners would find to be most impactful or exciting?

Howard Rosen  02:12

It’s very difficult question to answer. It’s almost like of your children, which is the favorite. We have, you know, hundreds of abstracts submitted to this meeting. We have four days of content. So I think from my perspective, I’ll offer three examples that are more illustrative of the broader set of data that we’re seeing. We have a study looking at the prevalence of migraine remaining stable, yet the disability has increased in the US population. It’s really interesting, from my perspective. We also have one that looks at children in the disability of headache during the COVID period. Again, sort of what’s happening in and around headache that people are experiencing today and most recently. And then I think the third group, I would say is, your listeners should know that there is a tremendous amount of new data on new therapies, new treatments that are either currently on the market or on the near term horizon. I think, you know, while there’s never a good time to be a person with migraine or another headache disorder, this is one of the best times because there are so many tools available today.

Joe Coe  03:33

And that hope is so important for us to know that if we’re on a treatment that’s not working, that there are other options, or if we haven’t found the right treatment, that there are scientists and researchers and neurologists and others that are fighting to get that for us. Howard, is there anything else that you think our listeners should know about the American Headache Aociety, this meeting, that we didn’t cover?

Howard Rosen  03:54

I appreciate that question. And I don’t think it’s a 30 minute interview. But what I would say is our organization, I think even healthcare professionals who aren’t part of the society, is made up of clinicians who really care about patients. And there is this sense of we can do more and need to do more. Our objective here at this meeting is to not only educate people who are interested in headache, but grow the number of physicians who focus on headache as part of their practice to meet the needs that we know that are out there.

Joe Coe  04:36

If you live in the US and you want to stay in touch with Talking Head Pain, text, the word HEADACHE to 1-845-285-1563. That’s HEADACHE to 1-845-285-1563, and you’ll receive headache and migraine related resources, giveaways, and the latest Talking Head Pain episode releases.

Narrator  05:00

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

Narrator  00:00

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

Joe Coe  00:10

Hi, this is Joe Coe, host of Talking Head Pain, the podcast that confronts head pain, head on. I’m here in Denver attending the American Headache Society’s Annual Science Meeting. I got to catch up with Dr. Rob Cowan to learn from him what he’s hearing about migraine and how it impacts our patient community.

Dr. Robert Cowan  00:30

So my name is Rob Cowan, and I’m a neurologist at Stanford, doing exclusively headache medicine and headache research.

Joe Coe  00:39

That’s amazing. And we’re here in Denver at the American Headache Society. What are you finding most insightful or interesting?

00:46

Well, today is still the first day, so we’ll have to see. But I’m seeing some some very hopeful trends, hopeful for patients. In particular, I think we’re starting to see that the notion of episodic versus chronic migraine is not a black and white situation, you know, it’s not like being pregnant. You either have have you have episodic, and then suddenly, you go from 15 days to 16 days. And now you have chronic migraine. We’re starting to understand that it’s a process and we’re starting to look more carefully at the slope of that curve, if you’re increasing your headache frequency. One of the big changes we’ve, we’ve seen recently is we now have medications that have an indication for both chronic and episodic migraine, which I think is smart. You know, most of us are much more worried, and patients are much more worried if they’ve gone from four headache days a month to nine headache days a month, than if they’ve gone from 14 Headache days a month to 16 Headache days a month. So I think that’s a very positive trend. We’re also seeing increasing attention to the hoops that we all have to jump through to get new medicines. Traditionally, we’ve had to try older, more familiar medicines, which have a weaker evidence base and more side effects than newer medicines. And that’s largely because of the economics. Insurance companies don’t want to pay for expensive medicines if they can get away with cheaper medicines.

Joe Coe  02:27

So you’re talking about prior authorization and step therapy?

02:30

Yeah, exactly. Exactly. There’s a very interesting poster at this meeting by Meredith Barad, from our group. And what they did is they actually looked at the evidence base for the tried and true the, you know, propranolol and nortriptyline medications, and compare that evidence base, looking both at efficacy and side effect profiles with the newer and obviously more expensive medications that require a prior authorization and a stepped trial of these older more familiar medicines.

Joe Coe  03:10

And what did they find?

03:12

What they found and you know, you should you should talk to Dr. Barad about this because it’s her work. But what they found basically is that the evidence for the older medicines is much weaker, the side effects are much worse, and probably, and they didn’t go this far but I can because it’s not my study, probably it turns out in the long run that, not only is it worse for patients, but it ends up costing more. You spend more time with comorbid illnesses, you spend more time in the emergency room, more time visits, more experimentation with medications, rather than going to the best medication first.

Joe Coe  03:51

Amazing. Well thank you so much for your insights. I’m sure our community will appreciate them.

Dr. Robert Cowan  03:56

Absolutely.

Joe Coe  03:58

If you live in the US and you want to stay in touch with Talking Head Pain, text the word HEADACHE to 1-845-285-1563. That’s HEADACHE to 1-845-285-1563 and you will receive headache and migraine related resources, giveaways, and the latest Talking Head Pain episode releases.

Narrator  04:21

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

Narrator  00:00

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

Cat  00:10

Discipline I thought was, you know, push ups and jumping jacks and, you know, taking yourself to the gym every day. And I learned that discipline also allowed me to be able to endure living with the pain of migraine.

Joe Coe  00:24

Welcome to Talking Head Pain, a podcast that confronts head pain, head on. I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation, and a migraine patient for 20 years. One of the things I love about doing this podcast is getting to hear from people like you, our listeners. And today I wanted to start by sharing one of your comments. FloVon says, “This pod and its host have given me the resources I need to discuss my care plan with my doctor in a more direct way. Migraines can upend your world and it’s so nice to have a guide through the world of treatment, and how to get what I need to live a more normal life.” I totally agree. And thank you so much, FloVon, for that positive review. If you like what we’re doing here on Talking Head Pain, please go over to Apple Podcasts and give us an honest five star rating. And wherever you’re listening, be sure to hit that subscribe button so you never miss an episode. Like FloVon said, migraines can absolutely upend your world, and learning to live a happy and healthy life with migraine can lead someone on a deep and profound journey. This is the experience of today’s guest, Cat, the founder of Chronic Migraine Awareness Inc. Cat is one of my closest friends in the advocacy community and one of its most inspiring members. Before we get into the episode and hear directly from Cat, please be aware that throughout this episode, there are discussions surrounding suicide and mental health. If you’re struggling with suicidal thoughts and need someone to talk to, know that you’re not alone. Please call the Suicide Prevention Hotline at 1-800-273-8255. I am here with Cat from Chronic Migraine Awareness. Cat is an amazing advocate and a longtime supporter of GHLF. We love Chronic Migraine Awareness Inc., and is just a good friend and I’m really excited to talk to Cat today to learn more about her organization and her story. So Cat, how are you feeling today?

Cat  02:27

I’m doing pretty good today. It’s a rarity especially being this time of the year but so far so good.

Joe Coe  02:34

What about this time of year is rough for you?

Cat  02:37

I think it just the seasons in general I find a lot of, I have a lot of weather triggers. Whether, you know, I can feel the barometer pressure dropping or changing. And I feel that in my head. So that just aggravates the symptoms that I might be feeling already. And I typically for some reason,  this time of year, March, is where it peaks and then I’ll sometimes I’ll get a pop and it will just get better. That’s where I’m at right now. Like, so far so good. We haven’t gotten to the point where it’s horrible. And if it gets better from here, I’m golden.

Joe Coe  03:13

I’m glad that you’re having a good day today and that it’s being spent with me.

Cat  03:18

Absolutely. You are my favorite, Joe. You were the only podcast I listened to.

Joe Coe  03:23

Well, thank you. So Cat, when were you first diagnosed with migraine? How long have you lived with it?

Cat  03:28

I didn’t get diagnosed until 2003. And it was mostly because of my sensei, who I was, I was taking martial arts, Kempo martial arts. And he also has lived with migraine since he was a child and he was able to recognize the symptoms in me. But I would say the first time that I had something that I knew was a migraine was when I was about 12, 13. And I felt like this knife in my head. And then I lost vision peripherally, it was I mean complete tunnel vision. And then I couldn’t feel my left hand. And I went home and I told my dad and he said, “Take an aspirin and lay down.” So I took an aspirin and I lay down and then I threw up and I slept and you know, I felt okay, I guess. You know, whatever my normal was back then. And I didn’t have another migraine like that until the year 2000. So as far as I knew, I only had two migraine at that point. But what I have learned since then, is that I’ve had symptoms going back to maybe like seven. I remember, you know trying to learn to read and the words disappearing on me. And my mom getting so mad at me, you know because I wasn’t reading the words, I didn’t see them so I couldn’t read them and she would get so frustrated. And then you know brain fog and just you know so many like, like things that you can have. I didn’t know you could have a silent migraine and that’s probably what I was dealing with for years until by the time 2003 came around, it was just so bad that you know, I was already chronic.

Joe Coe  05:06

Two questions, follow up to that. One, what’s a silent migraine?

Cat  05:10

It’s a migraine without the pain. You have all of the other symptoms, you have the aphasia, which is like where you forget your words. You can have, you’d be very lethargic, you just, I call them my jello days. Brain fog, did I say that already? Because that’s how brain fog works. Like I said, that is pretty much all the symptoms you could have, you know, maybe even have the nausea and stuff like that. But you just, you don’t have that agonizing pain that people think of when you think of a migraine.

Joe Coe  05:41

And that’s important for the listeners to know that migraine can be more than head pain, and often is.

Cat  05:47

I mean, really a migraine, and I say this and dating myself in the phrase, that it’s a canary in the coal mine, because it really is a signal that you have something else going on that you need to pay attention to. Some other you know, underlying issues that you know, might, your body is literally screaming, you know, ding, ding, ding, you know. “Warning! Danger, Will Robinson!”

Joe Coe  06:10

How did your sensei help you?

Cat  06:13

Well, he was the one, he like, I started getting light sensitivity. I wore glasses my whole life. And in 1999, I had LASIK surgery, so I didn’t need glasses anymore. And then after that, I started noticing, “Wow, my eyes are really sensitive to light.” But they were always sensitive to light, but I never paid attention to it before. It was once, it’s sort of like you know, when you get a new car, and then all of a sudden, everybody’s driving that car everywhere, you know. So once I, once I kind of called attention to a symptom, I was like, “Wow, this is happening more and more and more.” And like I said, once I understood all of my, put it all together, I could go back to childhood. So you were having it back then too. You just didn’t know that’s what it was.

Joe Coe  06:50

Do you still practice martial arts?

Cat  06:53

I haven’t, I had to quit in 2009. I was working on my third degree black belt at the time. And it just got to be too much; the screaming, the throwing, the getting hit. All that stuff. You know, I just I couldn’t, I couldn’t do it anymore. I miss it. miss it so much.

Joe Coe  07:09

Sounds like it was a large part of your life.

Cat  07:12

I was doing I did it for eight years. It really was a lot of fun. My kids were in it, my husband was in it, you know, my husband, Chris. You know, and it was, we would we would just go there and laugh and have so much fun. And you know, every other shot is a hit to the groin. So what’s not funny about that, you know.

Joe Coe  07:30

Took me a second to register what you were saying. And I was like, “Oh, yes.” That doesn’t sound like fun to me, but to each their own. One other question about martial arts, was there anything about martial arts that helped prepare you to live with a chronic disease?

Cat  07:47

Absolutely, yeah, actually, I have a tattoo on my back of a lotus flower. And, and the Kanjis for the school, which is respect, discipline, and self control. And when I when I started, you know, I thought oh, respect is, you know, bowing, and yes, Sensei, no Sensei. And I learned, no, that the respect was about the respect that I had for myself, and that I was deserving of good health care, and that I deserved to be healthy and be able to enjoy life and do those things. Discipline, I thought was, you know, push ups and jumping jacks, and, you know, taking yourself to the gym every day. And I learned that that discipline also allowed me to be able to endure living with the pain of migraine. In 2013, I was planning my suicide because it was so bad. And, you know, there’s many times where I thought, after, you know, going through this whole series of attacks from migraine, I felt like I had ranked up. Like, you know, by now, I think I should be like, sixth degree or something if there was a black belt for migraine. And self control, you know, there’s a lot to that too. Again, I thought that maybe it was you know, not punching people in the face when they pissed me off. But, you know, it’s more about learning, when to talk and when not to talk, when to listen. And, you know, and also to it, how to use the energy that people are throwing at you to give it back to them in a positive way or a way that, you know, you don’t necessarily have to take a punch to the face, you can just divert it and change it and just change that flow of energy. So and going on again, still rambling about the flower is that the lotus flower represents the struggle that you have to do, you have to,  to become the person, the beautiful flower. It has to struggle up through the mud and the water in the muck.

Joe Coe  09:54

That whole discussion around discipline, respect, that really is applicable to, to our diseases. And it’s about respecting our bodies and ourselves and our boundaries. I think that’s a really important aspect that we don’t talk about a lot.

Cat  10:11

You know, being a woman, you know, there’s, there’s a side to that where, you know, a doctor or any man tells you this is what it is you go, “Okay, well, you know, I trust you, you know,” but we have to be able to stand up for our selves and say, “No, I don’t accept this.” The first diagnosis I had, when I went, the doctor said, “Maybe your ponytail is too tight.” You know, and if I had just listened to him, you know, where would I be right now, you know, maybe I would be dead. So you know, again, that respect is, we deserve it. You know, this. There’s no reason why we shouldn’t be living our best lives.

Joe Coe  10:46

I’m deeply glad that you’re here. And I have a really important question to ask. Have you watched the reboot of Karate Kid on Netflix?

Cat  10:54

I have tried. I’ve tried.

Joe Coe  10:58

Not a fan?

Cat  10:59

It’s really corny. Although, you know, fun fact. My Grandmaster was actually a consultant on the original Karate Kid. So the whole wax on, wax off. That’s my system. It’s the Kempo system.

Joe Coe  11:12

That’s so interesting, because I was gonna ask you, if you were like, Cobra Fang, or Cobra Kai, I don’t even know the name, Eagle Fang. And, but it was a fun, it’s a fun show. It is corny.

Cat  11:24

It’s corny. Yeah,

Joe Coe  11:25

It’s fun. You’re like, “I know that that’s not accurate cause I practiced it.” So I want to talk a little bit now about how you’ve turned all of these negative experiences of living with migraine into something positive. You founded a nonprofit, you’re going into your 10th year, right?

Cat  11:45

Yes, yes.

Joe Coe  11:47

Can you tell us about Chronic Migraine Awareness and what 10 years of doing this you’ve learned and what it means to you?

Cat  11:53

Going back, you know, like I said, almost 10 years ago, I was also you know, planning my suicide. So when people were thinking- I was suicidal at that point anyway. You know, and somebody had suggested to me, you know, like, “Oh, well, well you’re miserable, and suffering and struggling to find help, you should start a nonprofit.” And I thought that was a terrible idea. So I did it. And I found also out that I think one of the things that really struck me after I had to quit Kempo was that I was left with nothing. I wasn’t a wife, I wasn’t a mother, or a sister, or daughter or cousin or friend. Like all of those roles that I was before, all taken away from me. And I was living in my basement cave, which was also my laundry room. And I felt like “Okay, well, now I have no purpose, and I’m a burden, and what am I doing?” But within this, my search of trying to find help for myself, I found all of these other people like Dorothy going into the wizard, you know, trying to find the wizard. Everybody looking for a new brain, said, “Oh, come with me, well, we’ll just you know, we’ll see what we can find together.” And those people, they supported me. And also I found that I did some, I did have something to offer, despite being disabled and being, you know, stuck. I mean, really, it was just my computer, it was just a keyboard. And because of that I connected to so many wonderful people. And then that also, of course brought me to you, which I have my my first friend in the coalition community. It’s been fantastic. And to know that, even if I was able to help one person, and I’ve helped more than one person, I’ve helped thousands of people. We have 50,000 people in, like, you know, globally. We’re in Canada, Australia, New Zealand, UK and Ireland. I mean, plus, those are major groups that we have, but then we really literally have people all over the world. So that’s, I mean, that makes me feel good to know that despite being disabled, I still had something valuable, valuable to contribute. And now we have other people doing the same thing within the community.  If you want to hear from one of Cat’s moderators and members from Canada, Sean McAvoy, I interviewed him in season one of Talking Head Pain, about his experience in the military in Canada and being a man with migraine. And your organization, Cat, does such amazing work. I see what you do in the Facebook support groups and the community that you build and that is so important. What have you learned by doing that in 10 years? Is there a common theme that keeps coming up every year that you see? People still need the same things. They need to know they’re supported. They need, there’s a lot of caregiver burnout for the people that they’re with. So, it’s trying to live with your own disease and making sure that you’re getting what you need but also the partner that you’re with, whether it be husband, wife, whatever, you know, mother, father, brother or somebody, you know, best friend. I have, one of my best supporters is  my best friend and she did things for me like taking care of my kids when I couldn’t, you know. She went on a little trip on a vacation, she would take them with her like, those things matter.

Joe Coe  15:20

I totally agree. It’s the heart of chronic disease. It’s, you know, finding support. People feel very confused. Even with such a common disease like migraine, that there’s so many, like outliers, or differences and access issues around the treatments and finding the right doctor. I know my inbox gets flooded since I’ve done this podcast from friends and people connected to me that are like, “Oh, I need help here,” or, “I don’t, my doctor is not doing this. And I heard you talk about that.” And it’s really surprising how much information is still missing. And Chronic Migraine Awareness fills a very big void in that by being on the frontlines and being on the grassroots, talking to people that are on the internet looking for information. So I thank you for all of that work.

Cat  16:22

Thank you, Joe, I appreciate that. I appreciate that you appreciate us. I would say one, one of the other things that we have been able to do is start an advocacy group, which is ARMS. And it stands for Advocates Removing Migraine Stigma. And stigma is a huge part of why we don’t get the help we need. Because we’re ready just to like you said, it’s not just a headache, it’s, it destroys lives, it destroys, you can’t do your job, you can’t be who you want to be. And, but also too, I think that you know, people with as far as advocacy goes, that some people feel like you have to go and you know, stand on a platform and give speeches, but you can just you can be an advocate by just speaking up for a friend, you know. Going to those appointments with them, or, you know, defending them against family family is like the worst when it comes to trying to get them to understand something new. So if you are a friend of somebody who has migraine, you can stand up for them and defend them. Or if you have migraine, you can also, you know, do things, you can take it small, you can just share graphics on on Facebook, or if you want, you could do big things like join the 50 State Network. And also, we go to Headache On The Hill, with Zoe, that’s a big part of that, you know, too. There’s, there’s so many ways to advocate however you want to do it. If you want to just do a little thing. You know, like I said, just you know, share a pen, share a graphic, or something. Or if you want to be a big mouth like me, and you know, get up and tell,you know, tell people that this is stuff that’s going on, there’s a place for you to do that, too.

Joe Coe  18:05

Thank you so much for the plug for GHLF’s 50 State Network. Folks can find more information about that at 50statenetwork.org. And that’s the advocacy arm, much like ARMS, of the Global Healthy Living Foundation. So Cat, how do people find information about your nonprofit? Where would you direct folks to go?

Cat  18:26

Well, you can go to our website at chronicmigraineawareness.org. We have, you can find everything about our organization there. Also you can go onto Facebook and we have private support groups, so they’re closed. If we know that family is trying to get in, we don’t let them in. So you have a private place to vent. And we have groups for men, women, moms, we have an off topic group so people can just talk about whatever. We have our main group where people could just discuss just the facts, you know, the nitty gritty of medicines and whatever. And then we also have a craft group for those people who like to do things partly to maybe like for their own mental health but also too, they’d like to create. And then we are able to sometimes use these the crafts that people are making and they donate them to us and then we can be able to distribute them out into the community.

Joe Coe  19:21

That’s a lot. That’s amazing. I didn’t know you had a crafting group. I don’t craft so why I don’t really know about it. Oh, my craft is different.

Cat  19:31

Your craft is in the word.

Joe Coe  19:33

I have a different craft. My craft is my face for radio. It was, as always, such a delight and pleasure to speak with you. Your energy and passion, I always feel it. And the collaboration, support, and just knowing that there are people like you, for people that are listening out there that have been through really tough times and have ways to help you throw it. Thank you so much Cat, for trusting us and for sharing your story. Cat ‘s story teaches us that you can find meaning and happiness in the most fascinating of places. She found her is in a martial arts dojo. Meanwhile, I find my happiness through advocacy and this podcast. So I leave you with a question today. Where do you find your meaning and happiness? Thank you for listening to Talking Head Pain, a podcast that confronts head pain head on. If you enjoyed this discussion, please give the show an honest five star rating and subscribe so you never miss an episode. I’m Joe Coe, and I’ll see you next time.

Narrator  20:44

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

Narrator  00:00

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

Jaime Sanders  00:09

The great thing about the headache and migraine community is that they are willing to learn and listen and do better. I just wish there was more representation. And there was just more than my voice speaking on this because it will make a bigger impact.

Joe Coe  00:22

Welcome to Talking Head Pain, a podcast that confronts head pain head on. I’m Joe Coe, Director of Education and Digital Strategy at GHLF. I’ve lived with migraines for over 20 years, so I understand what it can do to your life. Today, we have The Migraine Diva, someone who I consider to be a longtime friend who has officially anointed me Migraine Diva Number 2. I wear that title with pride. So how are you doing today, Jaime?

Jaime Sanders  00:56

I’m doing okay, I’m having a bit of a rough morning. But I’m here like I always am.

Joe Coe  01:02

We’re gonna make it better, I think, I hope, after our conversation. So what is the tough morning for you?

Jaime Sanders  01:09

Well, this particular morning started with a really severe occipital neuralgia attack around three or four o’clock this morning. And it’s been ongoing ever since. So what that feels like for me is intense pressure at the back of my head. And this time it’s on the right side. Feels like somebody’s drilling into the back of my head and like stabbing at the same time. It’s really intense. There isn’t much I can do for it. But it’s flaring up because Botox is due and I get that next week. So it’s rearing its ugly head. So I’m just gonna have to deal with it until next week, I guess.

Joe Coe  01:48

I get Botox next week too. We’re Botox twins! So I want to know, Jaime, what is a Migraine Diva?

Jaime Sanders  01:57

Migraine Diva for me is a way for me to hold on to my identity. And for me, that’s someone who loves creative outlets, specifically makeup and hair and all of that stuff that I identify with that just allows me to create different personas or express the way I’m feeling on a particular day. And that’s something I’ve always loved since high school; fashion, makeup, hair, I just always loved it. And it’s not for any vanity reason. It’s just a great outlet for me. And so when I started my blog, and I was trying to think of what to call it, that kind of popped in my head, I’m like, you know, that sounds like it’s glamourizing migraine, but it’s really about my own self identity. And you know, living with chronic migraine and intractable migraine, you really lose yourself within the disease because you’re dealing with it nonstop 24/7 365. And so I really needed to start to pull back from identifying with my disease and personifying my symptoms, and really learning to recognize that I am still the same girl I was back in 1993 with the same passions and love for creative things. So that’s where that comes from. And that’s what a Migraine Diva is for me,

Joe Coe  03:23

I love it, and I want to know what is a Migraine Diva tip for someone to look good and feel good?

Jaime Sanders  03:30

It’s whatever drives you, whatever your passion is, whatever your love for something is just don’t give up on that. It could be anything. It’s just taking that time to do what makes you feel good and really pouring into yourself. I think that will make anybody a diva because you’re prioritizing your own needs, your self care, making sure your whole. That’s what is important to anybody, regardless of your race or your gender. It’s taking care of what makes you you and fulfilling your needs and making sure you’re okay by whatever means that is. Go ahead and do it.

Joe Coe  04:08

So you talked about your passion being makeup and hair and fashion. What are some of the trends that you’re loving right now in that world? And what are some that we should maybe steer clear of?

Jaime Sanders  04:21

Okay, so I’m gonna be honest, I don’t really follow any trends.

Joe Coe  04:24

You make the trends?

Jaime Sanders  04:26

Yeah, you can say that. I mean, I know what looks good on me. I think I do pretty well with making colors work with each other. Honestly, what my trend is usually is loungewear and lots of pajamas because I spend so much time in the house. But that doesn’t mean I can’t sit at my vanity and beat this face to the gods. Okay. I’m not a big follower of trends like I was back in high school. I mean, I used to love Isaac Mizrahi and then like watch all the supermodels like Naomi and Linda Evangelista, all of those icons. But I really don’t have time for that. I don’t have the budget for that. I just wear what makes me feel good, what makes me feel confident. And I really try, I think what I’m doing more now, is trying to wear more bright colors like the orange I’m wearing today. Like I usually wear darker colors, especially since I’m a bit overweight, black and dark colors are my friends. But I’m trying to brighten up my wardrobe. So that’s what I’m trying to do just trying to incorporate more colors and be more vibrant. And then that gives me an opportunity to play more with the different palettes I have and wear brighter colors on my face that I normally don’t. So that’s my trend.

Joe Coe  05:40

I love that. And for our listeners who may not know what beating your face is, it’s not actually beating your face. It means putting on really good makeup. I recently told my sister in law, I sent her to a makeup artist for a wedding that she was attending. And I said, “Tell them that you want your face beat.” And she goes to my friend, “I want you to hurt my face.” My friend was like, “Oh, sweetie, you meant beat your face.”  We don’t want our faces to hurt when we have migraine. But we like a beat sometimes, get a little color, get some freshness there. So yeah, and your makeups looking amazing today, by the way.

Jaime Sanders  06:19

Thank you. And let me tell you, it’s a struggle for me to apply a face of makeup because I have trigeminal neuralgia also. So touching my face with any of my makeup brushes, just applying makeup. Right now I have so much pain around the side of my face. And putting on eye makeup causes this eye to just run. Trying to put on liquid eyeliner and mascara is like troublesome because I have like black streaks going down my face. So it takes a while. It is a painful process for me. But I endure it because usually the end product is worth it, so.

Joe Coe  06:55

But I think it’s important that we acknowledge that, for some, putting on eyeliner is going to be a big task. For others. It’s something that people take for granted. And we need to be gentle with ourselves around what we do to make ourselves feel better. So find that inner Diva in you, like what you were saying about earlier, Jaime. Defining that for ourselves is so important when we live with chronic disease. And it’s one of the reasons why I’m drawn to you and your energy, because you impart that spirit and that wisdom in all the work that you do.

Jaime Sanders  07:28

Yeah, that’s important for me, because it keeps me in line with what I discuss and what I share. Keeps myself accountable for taking care of myself. You have to walk the walk, not just talk the talk. So it’s a great way for me to practice what I preach. And sometimes we’re not always good at taking care of ourselves and putting ourselves first and doing what we need to do to make sure that we’re in a good, safe, protected space. And specifically living with chronic diseases, so much of our time is occupied with managing that and doctor’s appointments. And that’s outside of what your life looks like whether you’re in a partnership, you have children, you’re in a career, or you’re in school, it doesn’t stop life from happening just because you have a chronic illness or disease. So it takes a lot of energy to manage and balance all of that. I try to make sure to let people know that it’s not necessarily always about the huge accomplishments that you have throughout the day. If you’re able to do something that you weren’t able to do the day before, make sure that you congratulate yourself on that because it’s the little wins that really make a difference. And really not the big victories all the time. Because personally for me, I don’t have a lot of those. So the fact that I was still able to get out of the bed today and managed to put this face of makeup on and sit here and look and sound intelligent. That’s a big win for me, because yesterday, I wasn’t this way at all. So it’s important for me to make sure that I give myself grace, and just take it one step at a time and one day at a time. I really try not to focus on what happened yesterday, or what needs to happen tomorrow. I need to reserve my energy for the 24 hours that I’m currently in. Having that mindset is not only helpful for how I paced myself, but it’s also a way for me to manage my mental health and not spiral down into that anxiety of oh my gosh, this is going to happen and I’m not prepared for it, which can then trigger the depression and I have to be very mindful of where I let my mind go. So just staying focused on the day that I’m in really helps me get through each day of the week.

Joe Coe  09:50

So true. It’s really important to celebrate the small victories like you said, and we don’t do that as a culture enough. Cheers when we drink a glass of water, like that’s an accomplishment. We’re drinking more water, which is what everyone says to do. And it’s not easy to do. So cheers when you have a cup of water or a glass of water. Jaime, something about you that’s so unique in this community is how vulnerable and real you are about, not only your struggles with migraine, but also mental health, depression. And you started to talk about that. How has being an advocate and being a visible force in this community, as a migraine patient, as a black woman, both positively and negatively impacted your mental health?

Jaime Sanders  10:37

Positively, I think what it has done for me, and I think for a lot of the community that doesn’t feel like they’re represented, say, in like support groups or advocacy groups is, it validates their experience and their journey. It was important for me specifically as a woman of color to highlight what it’s like for me, for my family, what legacies I come from, and what I’ve had to learn growing up, and how that impacts the way I interact with the healthcare system. It’s very different for marginalized groups. And that just was not being talked about. And I felt like I needed to make sure I uplifted those voices, because if I’m going to be in this space, and advocate, I have to make sure I’m true and honest about those experiences that just are not discussed. I also wanted to make sure that I use this opportunity to talk about communities that were just completely ignored. It was my responsibility to do that. And especially since growing up, I received my health care at a federally qualified health center. And I saw low income marginalized communities get great care. And that specific center made sure that everyone that worked there, from housekeeping up to the board, represented the community that they were working in. It was extremely diverse. And I was able to see physicians and dentists and nurses of all races. And that really informed the way I saw healthcare growing up from the age of 5 to 18. That’s a very impressionable part of your life. And I knew what those communities needed out of those centers and what they got from them, and how important it was to have that level of care. And I saw that was lacking in the migraine and headache community. And I wanted to make sure that these groups I was affiliated with or working with knew that it’s more than just those that you seem to target, which are those with commercial health insurance and have access to transportation and healthy grocery stores and are able to manage triggers because they have access to healthy foods. There is such a larger community out there that is so neglected, we have to make sure that we’re reaching them as well. So being able to bring that to the table has been extremely positive for me. But on the flip side, it has been extremely burdensome and exhausting, because I tend to be the only chocolate chip in the cookie a lot of the times and not having other BIPOC in the room that can speak to what I’m speaking to and support that and have the safety of that understanding is frustrating.

Joe Coe  13:37

It is important to hear that Jaime’s perspective isn’t an indictment against any individual or group. But her sharing her experience and the countless others who push against institutional racism. When we personalize these perspectives, it often decreases our opportunity to hear it. Please listen with an open heart and mind.

Jaime Sanders  13:57

Unfortunately, a lot of the time, who I’m dealing with are mostly white and female, and they’re doing great work. But I don’t always feel like it’s a safe space for me to talk about how this has impacted me as a black patient advocate and not seeing the diversity in leadership. When you look at websites, you don’t necessarily always see a history of work in marginalized communities. So when we’re trying to get BIPOC to buy in, and they go and look at these events or organizations, they’re not seeing themselves. So that’s the frustrating part for me, and it’s going to take a lot of work. But I’m not the only black person with migraine out there with a voice. And retelling my story as much as I had over the last two years, specifically the trauma of dealing with implicit bias and  overt racism, retraumatizes me. So I need to protect myself and I think that’s something my white colleagues don’t ever think about when they asked me to talk about it. I’m like, well I have to relive it again. And that’s not an experience you’ve had to deal with. But the great thing about being in the headache and migraine community is that they’re willing to learn and listen and do better. So there is safety in that, I just wish there was more representation. And there was just more than my voice speaking on this, because it will make a bigger impact.

Joe Coe  15:20

Definitely. And that leads to my follow up question. You made me think of a statement that I heard around politicians, white politicians shouldn’t be going to black churches denouncing racism, they should be speaking in their white churches denouncing racism. And I think that statement is really powerful and applicable to the migraine world. White organizations and people like me need to do the work with our colleagues to create the environment that makes it less of a burden for you to share your story. And we might not need your story all the time, we might need to work on our implicit bias without that story, because it’s not your responsibility to educate all the time and to educate us. What would your needs be from allies in this work for around health disparities? I could think of it as a gay man, but as a black woman, what would organizations need to do to be better allies to you and others?

Jaime Sanders  16:20

I think it honestly starts with leadership. There just isn’t that voice. There isn’t that culture of diversity, equity, and inclusion in executive leadership. And so without those experiences, and those voices, there’s going to be a disconnect. And I would just love to be able to see that progression. And it’s going to take time, if you’ve never done this before. But I think it’s a self education. I think, like you said, too many times our white allies go to their BIPOC colleagues or friends to help them figure things out. And like I always say, “I didn’t create this problem. I don’t know how to fix it. And I’m not here to help you fix it. I’m just here to make you aware that it exists.” But really taking those initiatives to research different organizations that are BIPOC led or focused, instead of asking me, “Well, do you know of any organizations?”  I’m like, all it takes is a Google search, and you need to start reaching out. That’s, I think, a difficult thing to get people to do. I mean, they really have to be motivated to do that. All I can do is say this is what’s helpful for us. This is what we seek in our allies. And most importantly, not to immediately get defensive when we talk about what we see and what can be better, and not use it as an opportunity to say, “Well, this is what we’re doing.” Okay, that’s wonderful. But I’m telling you, as a black woman, from a black family, from black history, there’s always more that can be done. And especially we need our white allies and our colleagues and organizations to really do better at educating the engaged patient population in this specific community, because it’s majority white and female. So when we discuss issues around race, there is a lot of white women centering their experiences on those articles, or those posts or those podcasts, which needs to be quelled. It’s not about I’m a woman. So I experienced this too. You don’t have the intersectionality daily of being a woman or man and also being from a marginalized group, or a historically disenfranchised group. So it’s not about your experience, and nobody is making it less important. But we need to be able to feel safe to talk about what we go through, and how our experience is so much different just because we walk in with this color on our skin. And people are already perceiving us a certain way. And they already made up in thei