Narrator  00:00

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

Joe Coe  00:10

Welcome to “Talking Head Pain,” the podcast that confronts head pain, head on. I’m your host, Joe Coe, and I’ve been a migraine patient for over 20 years. The revolution is happening in your doctor’s office. For decades, people that lived with migraine didn’t have many options. Today, that has changed. I’m here with two leading neurologists: Dr. Nicholas Saikali and Dr. Andrew Blumenfeld. And we’re going to share with you, what this revolution means for both patients and providers.

Joe Coe  00:41

How are you both doing today?

Dr. Blumenfeld  00:43

Good. Nice to be here, Joe!

Dr. Saikali  00:44

Yeah, doing great. Thanks, Joe, for having us!

Joe Coe  00:46

So, let’s start with Dr Blumenfeld. How does a visit today compare to a visit ten years ago, or even five years ago?

Dr. Blumenfeld  00:53

We’ve seen a lot of dramatic changes. What happens today is, we have very specific medications that can alter the way the patient’s lives are controlled by migraine, and the visit now works around gathering the data that we need to secure those medications for the patients through the payers, making sure that they meet all the requirements, so that we can get them started as soon as possible. So, the way we take the history, the way we educate patients, has shifted dramatically from the Triptan era, which would be five or six years ago, when we had medications that did help, but they had lots of side effects and they were hard for patients to use. And this newer class of medications, the Gepants, are much more efficacious, in terms of the fact that patients can take them and see the efficacy, because they don’t get the side effects.

Joe Coe  01:50

That’s really helpful, and I know, has been a game changer for so many people, myself included. Want to turn to Dr Saikali, what type of information should patients share with you, when they come to a visit? We might think it might not be particularly important, but or connected to migraine, but what are some key pieces of information that we should be sharing with our providers?

Dr. Saikali  02:12

Yeah, Joe. So, there’s a lot of missing parts to medicine and to science, but going to your doctors isn’t as easy, as people think, in regards to sharing information, where their shared information, with providers across, even if it’s in the same city, let alone or another state. But patients always ask me, “Did you get this information about me?”, “Did you get this doctor’s note?” or “Did you get this test result?”. And you’ll be surprised at how many times we’re unable to obtain it, or we just never receive it. And it’s a disappointment, because it’s, you know, and hinders a visit that people take time off from their jobs, from watching their kids, or whatever it is that they come to the doctor’s office wanting to get help, but yet they don’t remember all the medications that they’ve been on, the studies that were done, because they feel like the information should have been there, before you they get to the visit. So, it’s surprising to me, as a provider who’s been practicing for over a decade, that in this day and age, we still don’t have all the information when the patients come in. So, it’s very important for the patients to have, maybe, always have a list of what medications they have tried, what side effects they’ve had from them, or how long they’ve tried it for, without being efficacious. So, it’s important for them to take charge of their medical history and have copies to all providers, that they need to see, not just in the headache care world. So, information that they can bring, whatever they can, from all the visits that they’ve had, and all the medications, even if it’s as easy as they choose the same pharmacies they go to; have a list, print out a list from their pharmacy of all the medications, that they’ve tried, that helps us out a lot more and makes the visit just more productive for both parties.

Joe Coe  02:12

So, that’s a really important information that you just shared – to come to your appointment prepared. You mentioned taking a printout from your pharmacy; there are apps too, that folks can use. I know at GHLF, we have one called PatientSpot, that people can input the medications that they’re on and have it on their phone, to show their doctor. But really it’s about creating that relationship and maximizing time as patients. Our time is limited; as providers, your time is limited. So, the intersection of maximizing our time together is really important. With that same idea, I want to turn to Dr. Blumenfeld, to talk about, how we can become partners in care. How does a patient and provider join forces in this revolution to strive and work toward migraine freedom?

Dr. Blumenfeld  04:42

Yeah, so the partnership obviously starts with that first visit, and it’s like walking down a road together. And there are many different branch points in the road and obstacles, and we have to navigate those and work together, in order, to progress forward. The ultimate goal is to try and get as close as possible to migraine freedom. And what migraine freedom means is that the patient has good control over the disease. It may not be that they have zero migraine; it might mean that they don’t have to go to the emergency room, and they’re able to go to work and take care of their family. That’s sort of a lofty aspiration, and we set that expectation up front, and we focus on getting to crystal clear days. So, crystal clear day, would be a day where you have no headache, your thinking is clear, you’re not suffering with side effects from your medications. You’re feeling energetic and clear headed, and this is the ultimate goal, is to have as many crystal clear days as possible. And we need to make adjustments in medications, as we walk down this road, and we need to layer medications on top of each other, and we also need to set the stage for the treatments to work well. And setting the stage, means removing anything that might be driving the headaches. For example, let’s say you are overusing caffeine or overusing an acute treatment, that could aggravate the situation, and maybe make the more specific treatments less effective. So, we need to look for all those angles, as well as any other condition that might be worsening the headache disorder. For example, if your thyroid is not working well, or if you had sleep apnea – these things can all drive the headaches to a higher level. We have an approach, that is algorithmic, where you walk through all these different stages, to get as close to this crystal clear state, that I was discussing.

Joe Coe  06:43

There’s a couple of things, that I want to talk about, and Dr Saikali, you could jump into, if you have any thoughts. In terms of the crystal clear days and comorbid conditions, how does a neurologist, or even a general practitioner, handle addressing the comorbid conditions? And what motivates a patient to address these, either underlying conditions, comorbid conditions, or conditions that exacerbate migraine? Because it can feel very overwhelming.

Dr. Saikali  07:13

Yeah, it’s a great point, Joe. I mean, you don’t know what symptoms that they’re feeling, from what condition they have, because they’re all interrelated. There’s a lot of interrelation with these disease states and comorbid conditions that exist, includes, in my opinion, one of the most common and one of the most underdiagnosed, is sleep disturbance. So, how I put it to patients is that you have a puzzle, and you have of many different pieces to the puzzle. Everybody’s puzzle is different – here are a lot of your pieces, it’s not one big piece that fits the puzzle; we have to put that puzzle together. Some pieces you’re going to be able to put on easy, to fix on your own, and some I’m going to help you with, to figure out, and we got to figure out together. So, making them understand that it’s not going to take, just, one sitting, to put this puzzle together, and we need to work together and maybe have follow ups, with the rest of the team. It doesn’t have to be even just myself and maybe a PA or an NP that they’re gonna be following, but they’re all part of the team, to help put that puzzle together, to achieve that migraine freedom, and to achieve that crystal clear day, that Dr Andy Blumenfeld was talking about, who actually came up with that term with the ‘Crystal Clear Days.’ I think it’s a great concept of we never thought about in the past, it’s not just a headache phase; there’s different phases of the attack in the migraine that can involve cognition, that can involve personality, that can involve GI issues. That you want them all to be resolved, in as short time as possible, with as little medication as possible, and that’s what develops, and that’s the understanding of having a crystal clear day. How many crystal clear days do you have in a given week, in a given month? And so, it’s not just that migraine disease state, you want to try to treat other comorbid conditions altogether, but it’s not going to be that easy, unfortunately, it’s not going to be one sitting. We all know that.

Joe Coe  09:02

And does medication work better, if we’re addressing these other comorbid conditions?

Dr. Blumenfeld  09:08

Sure, if you don’t address those comorbid conditions, it can become a vicious cycle. Because those conditions might be aggravating the headache, which would lead you to take more medication, and some of those medicines might aggravate the headache. So, there’s a big interplay between comorbid conditions, the medications you use, the frequency of your headache, and then just having frequent headache can also be a driving factor. So, each migraine helps to bring on the next migraine, and so you get into these vicious cycles, and we have to break that cycle. Fortunately, the newer specific treatments, the CGRP drugs, whether that be the monoclonal antibodies or the Gepants, they’re very effective, because they don’t have a lot of side effects; they have high efficacy, they tend to work quickly, and they can work in this type of setting, where they can break these cycles. And they become a foundation, and then you can build other treatments on top of that. If there’s depression, if there’s anxiety, you’re going to be treating that, with more specific medicines for depression and anxiety, but you use the CGRP specific migraine treatments, to kind of, be the foundation of your build up of all these different treatments.

Joe Coe  10:26

I think that’s so important to state, and I could just share from my experience, as a migraine patient, who was extremely overweight and had a lot of different health conditions, that were being fed by both living with migraine, being overweight, metabolic syndrome, all these things that were a cycle, like you just said. And getting on the right migraine treatment, while it didn’t cure me of these other issues, it provided me the opportunity to address them. I still needed to address them, I still needed to figure out my relationship with food, and figure out my relationship with movement, but migraine became less of a barrier to doing that, because these medications work better, than the older medications that I was on. So, I think that, that’s something that we need to tell folks, that this is about looking at yourself, as a whole person, figuring out what type of life you want to live. Do you want to be limited by migraine? Because the reality is that, for a large percentage of people that have migraine, and correct me, if I’m wrong, getting on these treatments can likely, dramatically, increase their quality of life. So, the question is, why aren’t we seeing more people get into this revolution, feel energized, and say, “I don’t want to live a life in pain. I want those crystal clear days. I want to be able to enjoy my life to the fullest. However, I define that.”?

Dr. Blumenfeld  11:50

It’s a critical question, why is it that there are so many people, with migraine, that firstly don’t realize they have the disease, and secondly, are not on these treatments, that work well and are well tolerated, obviously not in everybody, but in a large percentage of patients. And it’s a dilemma, you know, is this a dilemma, because physicians are not well versed to diagnosing migraine, or not well versed with the newer medications? Is it that, there’s a stigma around the disease? And there’s assistance for patients to accept the diagnosis and to seek out care, or maybe it’s a combination of all of these things, but I think the stigma, probably plays the biggest role, and we really need to find a way to break down migraine stigma, so, that patients can come to the doctor, thinking and accepting that they have migraine and seeking out these treatments, because they can make such a big difference.

Dr. Saikali  12:51

I agree, Andy. Joe, I think the stigma is very big, and people still say, you know, why do peoples have stigma, still? I think this is still very new. If you want to date back, it’s only since 1992, before you were born, Joe, but you know 1992, first migraine specific kind of medication came out, with Imitrex as a board of therapy. There’s still people out there, that have never even tried Imitrex, or never even heard of it, and have been living with migraine disease, and their parents or grandparents have had a migraine and tell the rest of the family, “Oh, I’ve had this. Just get in a quiet, dark room and just try to sleep it off. You should feel better the next day, or in a couple days, you’ll feel better.” They don’t know that there’s medications out there, that can help them. They don’t know how important it is to treat a migraine, just like Andy said, a migraine begets a migraine, if it’s not treated appropriately. And to give you a statistic, if a migraine is not treated with a migraine specific medication, you have episodic migraines, which is less than 15 a month, you have three times more likely to transform into a chronic migraine, which is 15 or more headaches in a month. And so, they don’t understand that, they don’t understand that there are treatment options, we should be treating migraine. How I teach a patient, you need to treat your migraine because we think, it could scar the brain, and then I think that’s what. I don’t mean to scare them, but I need to make them understand that you don’t have to just sleep it off, I don’t want you to just sleep it off, I want you to have a better quality of life!

Joe Coe  14:19

I’m curious to hear from you both about, something I have in my head, around uptake of these new medications versus old, and it’s kind of the inverse of what you were just saying. So, because older medications have been around, people might feel more comfortable with them, something that I’ve heard from people, that are not seeing neurologists, but live with migraine: they never heard of these medications, and they’re like, “I don’t know if that’s something I want to take, because it’s new and it might be scary,” because they don’t know a lot of people that are on them. So, how do you address that with patients, that might be a little hesitant, around the newer medications, because they don’t have a friend that was on them, or their mother didn’t take them?

Dr. Blumenfeld  15:00

Well, I think there is this understanding that migraine, in some patients, is a progressive disease, where they may transform to this more frequent type. So, once you start to think about the disease like that, it pushes you to become more aggressive in the way you manage it. And if you’re taking one of the older medicines and you are achieving migraine freedom; you’re not having any headaches, the medicine is working well, you’re tolerating it. You don’t need to make a change. The subgroup of patients, though, that is either getting a lot of side effects or is not responding to a pain free state, they need to rethink that situation and push to get the more aggressive, more specific treatment, because there’s a chance, with the newer treatment, that they could achieve that pain free state. So, they should continually look for it. And the way that I tell patients to check, is that when they come back for their follow up visit, they want to see after they took their acute treatment, two hours later, were they completely free of migraine symptoms, so, no headache, no nausea, no light or noise sensitivity. And if they’re achieving that, “Great! Stay on the treatment,” but if they’re not, then let’s shift you to the next level up. Fortunately, in the new treatment group, we have far fewer side effects. So, when we look at treatments, and we kind of judge them, they’re two angles, and it’s best summed up by looking at an equation of effectiveness. Effectiveness is this combination of efficacy and tolerability. What I’ve been teaching patients in this new era is that they shouldn’t be brave, that they should not wait to treat. It’s far more beneficial with these newer medicines to treat early in the attack and not let it linger, because the longer the attack is lingering, the more likely they are to progress to the higher frequency of migraine. So, early treatment is crucial. Some of these Gepants have now been studied, even in prodrome. So, that means treating before the headache even begins, when you in the warning phases, and the data shows that they work well. So, treating during prodrome is beneficial, if you can learn about your prodrome. So, learning about what symptoms you get, just before the headache starts, things like fatigue, excessive fatigue, and yawning, and slow thinking, light sensitivity, noise sensitivity, a dizziness, neck discomfort. And now the guidance is: treat during prodrome, or if you miss it, treat, as early as possible, in the headache. Never wait! So, very different way of managing patients, than previously.

Dr. Saikali  17:41

I agree, Andy. Joe, I was listening to, about like, what you were asking, in regards to, how to get these patients more comfortable into the newer type of medications. I don’t know how, Andy, how you feel and how you discuss with patients, of when they ask you, “Well, these are newer drugs. How do I not know I’m gonna grow a third eye, from these newer drugs?” and they’ve only been around for a few years. And to Joe’s point, they want to try the older drugs. If they haven’t tried them, it’s worth trying, and we, a lot of times, we tell them, yeah, those have been around for many years. And I go through the history of drugs, going from what defined, really, in our definition, chronic migraine. I know, Andy, I think, agrees with this, that Botox kind of defined the chronic migraine disease state, because that’s what it’s indicated for. And I say, you know, Botox is one of the older ones; it’s been around for decades, hundreds of 1000s of millions of people have tried them, and the same Botox, might sing, is the same Botox that they use in Hollywood for cosmetic ways. And if, if Botox was really bad for you, Hollywood would not exist. That’s one option. That’s one thing, how I make them more comfortable, with that treatment option, if that’s what they want to go with. If they want to go with the monoclonal antibodies, I take them to data of long term open label extension studies and tell them, you know, they saw no new warnings, no new side effects, even in the open label, 3-year and 5-year, we have data, especially with the first monoclonal antibody, that came out in 2018. But to make patients more comfortable, I think, it’s partly the provider, what I call the provider effect. It’s a collaboration of physician directed, kind of collaboration between, basically, the provider or the physician and the patient, and it’s also just educates the patient on what really good can really be looking like, and remove these barriers in patient care and making them understand, that we need to look more towards migraine freedom. And everything is a trial and error, I don’t know what can happen in the future.

Joe Coe  19:31

Yeah, that makes total sense! And something I struggle with, because I hear people, and I see people, and people that reach out to us at GHLF, who share their story, and they’re not being treated in the most innovative and effective ways, that we know, and some of the hesitation is around “I don’t know about those drugs,” so, we do our best in sharing that data, and understanding, and also acknowledging patient preference, and all the things that go into that. There’s two questions that I have left, for this amazing podcast episode, that is so enlightening and impactful. One came up as I was listening to you, Dr. Saikali, talk about brain imaging and scarring. When Global Healthy Living Foundation started, in 1999, we started as an arthritis organization, called creaky joints. And people with diseases, like rheumatoid arthritis, at that point, many would be in a wheelchair or very crippled, have joint deformities, things that looked really bad, and we were able to look at radiographic changes, in arthritis patients. Biologics came to the market, and that changed. Our community looks very different today than it did in the past. We don’t see the same joint deformities and degradations, that we’ve seen in the past. I believe, as a theory, that, that has motivated patients to get on treatment, was that you’re able to understand and see the progression; you could see those in radiographic images. With migraine, it’s a little harder to explain that same progression. So, while we don’t have imaging necessarily, but we do have the concept of episodic to chronic disability, the crystal clear days to strive for. How do we paint that picture, in lieu of or without, these very strong, physical manifestations that we can measure?

Dr. Saikali  21:21

It’s a good point! I wish we could do it by neuroimaging and seeing a regression, which we unlikely will see on neuroimaging, and looking at the white matter and the T2 changes, and see them regress, but we may see them not progress, right? And those studies, I think, are still being done. I don’t know any yet, up to date. I don’t know if Andy, can back me up on this, but up to date, with the newer types of medications, treating migraines and being more efficacious, being more compliant, because they’re tolerable and less drug to drug interactions. If these medications that patients are being compliant with and treating their migraines sooner, and getting less frequent, and less intense migraines is decreasing the progression of the T2 changes that, to my knowledge, we don’t have. I think it would be a great study to pursue, and longitudinal kind of study that needs to be done, but not yet, and we’ll look forward to that. But in regards to “How do patients look forward to, maybe thinking about to achieve crystal clear days?” I think they need to keep a better journal. I know many patients don’t keep, as good of a journal as we would like them to, but there are a few that are maybe more of a type A personality, and they keep a journal, and they keep, I think too much, I think they go to all the way on one side versus the other side, where they write everything down. They become engulfed into writing every single thing down, whether they have a migraine day, or headache day, or headache free day, or migraine free day. So, there’s a fine line onto, I think, trying to figure out, has this affected their quality of life? Are they missing less work? Are they missing less ER visits? Are they calling their physicians or providers less, because their headaches have become less intense or less frequent, and they’re having more crystal clear days. I don’t know if that answers your question.

Joe Coe  23:05

It does, and I’m the bad patient that refuses to do a diary or journal. I have found other ways, and I want to share just some other ways that you can look at this, because it does work, and I’m a health coach outside of GHLF, a personal trainer, so I understand how people get motivated to make life changes, and some people are very driven by that data, and that’ll be motivating, and some will find it to be a burden. For me, I look at small and large wins. “Am I waking up without a migraine for a month?”, “Do I think about migraine?”, if I can reflect on those things, and I could answer “No, I haven’t really thought about migraine,” I’m doing something right. If I can get on a trip overseas and be able to function, and I will likely have to take medication while I’m doing that, but with the medication, if I’m able to function, I’m doing the right thing. If I’m able to go on that hike, if I’m able to exercise in the way that I want to exercise. Those are the things that I have looked at as success and that I have defined for me. Because I think what we fail to acknowledge, when we’re looking at behavior change, is what is the motivation? So, what is the motivation to not settle? And if we don’t really understand the motivation of the individual, to not settle, then we’re going to settle. And I had to come up with my motivation was, and my motivation was, “I’m living a youthful, vibrant life, and I wasn’t when my migraine was not controlled,” it contributed to a spiral of really bad health outcomes for me. So, being able to look at that and reflect, I think, is really important and one way, and I think journaling is great, I don’t want to diss journaling, I know that it’s a really important thing. If you’re not into journaling, find your own way to monitor and benchmark, your, your health journey, because it’s personal to you, and you need to understand what matters for you, as a patient, and then tell your provider: “This is the life that I want to live. How do we get there?” So, how do we get there? How do we not settle? How do we optimize our health?

Dr. Saikali  25:06

Like you said, you don’t need to keep a journal your whole life. Have a goal of, like, maybe two months, and just do it for two months. I think success, as you said multiple times, Joe, I think success of getting more of a grasp of your migraines is not having to worry about scheduling appointments or dates or missing work, not having to worry that you might have a migraine attack. If you get to that stage, I think you are doing something right. That’s a great point!

Joe Coe  25:30

Last word, Dr Blumenfeld?

Dr. Blumenfeld  25:32

Well, I think that we want to encourage patients to think about migraine, to understand it’s not a difficult diagnosis. I think that any recurrent headache, that is disabling, should firstly be thought about as migraine, not to default to other headache types, whether they be tension headache or sinus headache, and typically, if there’s a little bit of nausea or if there’s sensitivity to light or noise, that’s usually sufficient to confirm the diagnosis. So, it’s not a difficult diagnosis to make. And then I would encourage patients to go and see their providers, primary care, or specialists, and to seek out the newer treatment options, which are really the drugs that block this chemical, CGRP, which is a chemical that’s released in the brain during the attack and does play a big role in causing the headache. And these newer treatments block it very effectively, and encourage them to think about starting them and being much more aggressive in their treatment management, and also in their expectations for the control of their disease. To think about getting to crystal clear days, with this deeper understanding that if they don’t do all of this, if they just leave it and kind of just live with it, there is a risk of progression, and that is something we want to avoid, because patients who progress can end up having headache nearly every day, and there’s no need for that. We can control the disease to a large extent; we can’t cure it, we can only control it. So, these treatments are long term treatments, and one has to accept that, that these are going to be lifestyle changes that you’re going to make. So, I would take that into consideration and seek out providers that can help you get started on this journey.

Joe Coe  25:35

Thank you. This was such a great discussion, and I think the next one needs to be on how we educate providers about all this stuff, because what happens if a patient goes to their provider and they don’t have the capacity to do a prior authorization, or they don’t have the time to go over the entire history of the migraine patient’s journey? So, I think there’s a lot to unpack, but we’ll leave that as a cliffhanger for our next episode. I really appreciate the time and energy that you both gave today to “Talking Head Pain,” and that you give every day to the patients that you see, and the people that you change with your work, and your professional societies, as well as, throughout the research and all the other important things that you do. So, thank you from the patients and we appreciate your time.

Dr. Saikali  28:09

Thank you, Joe!

Dr. Blumenfeld  28:10

Thank you, Joe!

Joe Coe  28:12

Thank you for listening to this special episode of “Talking Head Pain,” the podcast that confronts head pain, head on. If you have any questions, or thoughts, or suggestions for us, we’d love to hear them! You can send us an email at [email protected]. If you enjoyed this episode, please give it an honest five star rating. Write a positive review and spread the word by sharing it with your friends and family. I’m Joe Coe, and I’ll see you next time!

Narrator  28:39

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.

Sarah Shaw  00:10

Welcome to this episode of “Talking Head Pain,” the podcast that confronts head pain, head on. I’m your host, Sarah Shaw, Associate Director of Diversity, Equity and Inclusion, and Community Outreach, at the Global Healthy Living Foundation. I have been living with chronic migraine for almost ten years, and I’m very open about navigating life with my chronic disease journey, as well as my experience living with anxiety. This podcast will be a window into other patients lives as they navigate their own journeys living with chronic pain, migraine, and mental health. Today, we’re joined by Shelby Blondell, singer and songwriter, who lives with chronic migraine and dysautonomia.

Sarah Shaw  00:53

Shelby, welcome to the podcast!

Shelby  00:55

Thank you so much for having me, I’m happy to be here.

Sarah Shaw  00:57

We’re happy to have you here and chat all things, migraine, and chronic illness. So, I like to start off the podcast by asking our guests, “if you could use one word to describe migraine, what would it be?”

Shelby  00:57

Life changing. I think for me, migraine has so many meanings, and it really has changed my life in a lot of ways. In a lot of ways, migraine is the number one enemy I have because it steals a lot from me, but its also brought so much joy into my life, which sounds really weird to say, but throughout this chronic illness, there’s been a lot of downfalls of it, but the community has been incredible, and that’s all been really life changing. I think it’s taught me a lot about life and how to kind of push through all of it and lean on people and see the strength that we all really have.

Sarah Shaw  01:44

I love that answer! It is life changing. As someone who’s lived with it for, I think it’s almost nine years now – in the beginning, it was very isolating, and then Shelby, you mentioned community, that has been a huge thing for me. Is finding this rare, I think, community of like minded people, who can empathize and understand, like what, what you’re going through, and then also offer like advice to kind of navigate that. And that’s kind of how I found you. Actually, the migraine community brought me to you through Headache on the Hill, and I got to learn a little bit more about you. And I want to dig into the next, I guess, next big aspect of your life. I know, I’m wondering it, which came first migraine or singing?

Shelby  02:27

Migraine, I think did come first *small laughter. I’ve had migraine really my whole life, starting from when I was three, but music came within that. Music was one thing that really helped along those journeys of pain and migraine. So, I wasn’t necessarily performing, but I guess a little bit in my own right, within hospitals and playing little pianos in playrooms.

Shelby  02:48

That started from a young age – I think you said since you were three, right? So, it kind of seems like it was woven into your experience. Have you ever written any songs about chronic pain that kind of, or migraine, that has kind of helped get you through.

Shelby  03:02

I have. And pretty recently, I put out a song called “Takes A Day.” I struggled for a while with writing this song and finishing a song that, really, spoke to all of the things that we face with chronic illnesses, which is the unpredictability of it and feeling alone and isolated, even though there is an incredible community. Everyone’s stories are similar, in some ways, and we face similar things, but they’re all so different. It’s one thing that’s special about it, but I wrote this song called “Takes A Day,” really just about, I think, that feeling that I know I get a lot of times with migraine, it, sometimes, it’s really hard, and you wonder what the next hour is going to bring, or what the next day is going to bring. And sometimes the reality is it just takes a day. It takes a moment or the next day. And you might not feel it today, but tomorrow’s a new day, and something else is gonna come.

Sarah Shaw  03:49

I love hearing, though, from you, how music impacts your life, because I think that’s so special. I think music does have that ability, to be that universal language that helps us all through all of our things. And I know for me, it depends on the day. Really, like music, if it’s always a song that’s a little bit soothing, like classical music or some jazz or something that’s not something super sharp, like the sound of pans clinging, those types of things help. I think it’s almost like the vagus nerve stimulation. But if it’s super loud noises, one thing I’ve noticed for myself, especially with music, is especially when I’m playing a show, I’ve learned, this might sound stupid, and if anyone else is a musician, they might understand this. But for me, sound checks are the worst…

Sarah Shaw  03:49

Yeah, I feel like, for me, your song it “Takes a Day,” is very similar to what I tell myself all the time in my head, of one day at a time. We just gotta get through this next migraine attack, get through this next anxiety attack, just take everything one step at a time. And I know that there’s a lot of mental health that comes along with living in chronic pain, whether it’s migraine, whether it’s POTS, whether it’s a bunch of other different chronic illnesses. And I know for me, for some people, who live with migraine, they can’t tolerate like loud noises or sounds, and sometimes, I’ll get to that. But one of the things that I, kind of, learned about myself, a couple years ago was music is actually really, I don’t want to say healing for me, but like, it gets me through migraine attacks. Like, sometimes I’ll be in the car, if I’m driving and I have a migraine attack, I can turn the radio up. And not that it’s distracting or dissociate. I guess it is kind of distracting, if I’m really thinking about it. But music doesn’t seem to trigger me in the way that, like sometimes, like clanging a pans or closing doors, like music kind of transports me somewhere else. And I want to know how has that affected you? How has living with migraine affected your singing, and how has singing impacted your migraine?

Sarah Shaw  03:52

Hmmm.

Shelby  03:53

…and I think that’s especially when there’s a drum involved or other instruments, because there’s so many things being tested, or a stationary drum beat, or a stationary something that always starts way too loud and it takes a while for it to come back to where it needs to go. So, a lot of times, I’ll even step out if band members of mine have to do certain sound checks, or if other bands who are playing with us for the night have to do it, I’ve learned that’s something I need to do for me so that the night can go on. So, it’s those little kind of tricks that you learn you have to do,

Sarah Shaw  06:13

Right. Yeah, especially the thing when you were talking about sound checks and the drums, I was immediately transported to when you’re at like, a conference or a concert and the mic is too close to the speaker, and you hear that awful, awful like *neeee, whatever it’s called, like, oh, gosh. So, I imagine that you probably get that a lot as a performer.

Shelby  06:34

Yeah, and it’s not fun. It always makes those next days just horrible.

Sarah Shaw  06:38

Yeah, yeah, exactly! When I get in really horrible migraine attacks and I’m just like, super irritable and just like, exhausted and cranky because, you know, you’re in pain. Sometimes I will rage with my migraine. So, sometimes I’ll put on some Linkin Park, some Numb and just, maybe I won’t blast it right, but maybe I’ll have it up like a little Chester. This is what, this is all about. And I don’t know, it’s sort of therapeutic for me, I also come from a background – I played the violin all throughout my middle school and high school, and my violin is sitting somewhere behind me, that I need to reopen and re engage with the world. But I’ve been so worried that I haven’t interacted with my violin, since getting chronic migraine. I was doing it for such a long time, and it brought me so much joy. And I do know the vibration of the strings, and you put the chin rest like right here, and I’m like, I need to work through my fear of like re engaging with that. But I’m wondering if there have been situations where you had to, I know you brought up the sound check, where you’ve had to kind of pivot and figure out how to re engage with life, now with migraine.

Shelby  06:38

Yeah, and I think, similarly to your story, I think I do find myself in bouts where sometimes I go a couple days without playing, or I kind of get in this headspace of I can’t do it, or I don’t feel well enough to do it, and what is this going to do? And it’s kind of that fear, because when you live with chronic illness, there’s kind of this always lingering fear, that’s there. And I do get into that a lot of times, but then I have to remember, which is not always easy to do, that music always has a way for me to help in the moment. And so a lot of times, even if I am feeling poorly, playing music always helps, and it changes, right? Like sometimes I know for me, especially when I’m not feeling well, sitting down at a piano is like the most therapeutic thing I can do. And I don’t know what it is about it, but I feel like it’s one of those just kind of mindless, careless things. I can just sit there and go for hours. I love playing guitar, but there’s a difference for me, when I need to kind of just feel better. Piano always seems to have a way to do that. It’s something special about those keys.

Sarah Shaw  07:47

I was just about the same thing. I’m like, “it’s those keys. It’s those keys. I know that’s what it is.” I do not call myself a piano player, but I have dabbled a little bit, and I’m, don’t have the long enough fingers to extend, to do all the things. But I don’t know, it’s something about those keys, just simply hearing a piano start a song or end a song – I really vibe with it. We can talk about music all day, every day, but I want to get into more about like, last conversation that we had, we were really chatting hard about insurance issues and how it really messes up our lives.

Shelby  08:45

It’s so hard because insurance in itself, just going to doctors and managing your illness is a full time job, and then insurance dealing with insurance and medication, that’s a whole nother full time job, that I’ve seen, in my history. I think, especially with migraine, a lot of medication and treatment is really new, and so, I think that really makes treatment hard. And insurance has always been an issue for me. Just going through multiple steps to get something, and insurance telling me you have to try many things, before the one thing that your doctor prescribed, which delays treatment and pushes things back further, and then that that does a lot of things: it delays your treatment, it causes stress, and time away from things you could or should be doing for your health. And it’s frustrating, it’s hard.

Shelby  08:56

*Ough…

Sarah Shaw  09:21

I know that you dealt with it, and I don’t know if you’re still dealing with it, but what has that journey been like for you, with insurance really getting in the way of your care?

Sarah Shaw  10:12

Yeah, it really is. Are you now at a place where you’ve been able to beat the insurance people, if only for temporarily? Because that’s where I am right now, “It’s okay. You have it for a year. We’ll check back in another year.” And I’m like, “Oh, can you just approve it for the rest of my life?” But are you now in a place, where at least you’re getting some treatment to get back to baseline?

Shelby  10:32

I am happy to say that at the moment, “yes,” and I’m gonna knock on this wood table. It’s finally in a spot, where insurance, at the moment, is doing fine with the medication. I’ve got some really incredible providers and physicians, who are really wonderful and also really stay on top of things and try to fight as well.

Sarah Shaw  10:49

Amazing.

Shelby  10:50

Which that’s hard too, because they shouldn’t have to fight as hard.

Sarah Shaw  10:52

Exactly.

Shelby  10:53

Also, because takes away from their time with other patients and makes me feel bad.

Sarah Shaw  10:58

Yeah, and they’re the doctors. Like, why? Like, why are you anyway? I could go on and on,

Shelby  11:04

Yeah. When your doctor knows what’s best for you and is gonna help, that should be enough and should be good.

Sarah Shaw  11:10

You mentioned you have some really great healthcare providers and a team, and I think that’s the goal. If you’re already gonna be sick, why not like, have like, a good team to at least like, support you?What does that support look like from other people in your life, from your family, friends, colleagues? Do they support you? Or how can they support someone living with migraine?

Shelby  11:28

I am lucky that I have a pretty good support system, and they understand, and then they, you know, they check in if I haven’t answered them in a while, if it’s a bad, must sleep all day, kind of thing. And I feel really, really blessed for that. And I think it’s different every day what we need. I think sometimes it’s the messages that make you feel better is when people remember you had a doctor’s appointment and they send you a “Hey, hope it went okay, if not, call me,” or those things, right? That’s a big support thing that might seem silly and little, but it really does make a big difference for all of us, because when people don’t know, they don’t know, and you only know what you know, but to know that other people are there, really means a lot.

Sarah Shaw  12:07

I love that. I love like those little things, like you said that they remembered you had a doctor’s appointment or after treatment. “How are you feeling?” Like, “Is it any better today?” And just like innocent little check-ins, I think the world can really take a page like, out of the people in our lives that actually like, are doing that. And like you said, it seems small, but it’s actually really big. And for me and my journey, in the very beginning, I hid it. I hid that I had migraine. It was very heavily stigmatized. It still is. I was also young, and I was like, there’s no one my age like living with this. So, it felt super awkward to like, tell people, okay, I have this neurological disorder and all these things like, how did you navigate that? Because you’ve been living with it for such a long time. How did you navigate those conversations, and when you first started speaking more openly about it with people in your life?

Shelby  12:58

And I think for, so long, I was, not necessarily, in denial, but I fought so hard to pretend like everything was okay, to that point of then being so much worse off when I had to push myself to rest, because of the fear of people seeing me as different. As I got older, migraine symptoms started to get much worse. So, actually hiding the head pain became harder because a lot of the other things started forming, the balance and speech issues, then brain fog and nausea, all those things, and that’s much harder to hide, or it was for me, and it was then having those conversations with people, of you know, this happens sometimes, and that’s really hard. And even when I’m playing music, with everyone I play with, noticing that, like some of these tough conversations, where something might happen while I’m on stage.

Shelby  13:44

I notice when I sing, it’s kind of muscle memory, and it doesn’t really happen when I sing, but if I talk, the brain fog and the confusion, most of the time happens. So, that doesn’t happen often. So, if it’s just letting people know and having to inform people a little bit better, because, like you just mentioned, migraine is a neurological disease, and I don’t think a lot of people see that or understand that, and that’s a learning thing that needs to happen. But I think, you know, once people start understanding that migraine is more than just head pain, they start to see it in a whole new light.

Sarah Shaw  14:08

Uh hmm.

Sarah Shaw  14:15

Absolutely! And just starting those conversations like you have, and talking about it more openly. I know for me, especially now that I work in a job where it’s all about chronic illness, it’s become so much easier for me to have more confidence and talk about it and not feel ashamed and not feel like less than having a supportive environment where for me, if I am having a really horrible migraine attack, but it’s okay to take a sick day and to rest, and I find that I come back so much stronger and more energized than trying to push through. I’m speaking of this from a place of privilege; I have a very accommodating workplace, I know that so many people do not, and that’s to what you were saying, Shelby, the more people start to understand and really see that migraine is a neurological disease, I think the more the world will hopefully change, and that’s why we’re having conversations like this on the “Talking Head Pain” podcast. And I know we’re getting down to the last few minutes, and I really want to talk about mental health and self care. We know, you’re juggling multiple chronic illnesses. It’s not easy. You just said, it’s dealing with chronic illnesses is a full time job, and dealing with insurance is a full time job. So, I sense like three full time jobs, and you’re a singer and songwriter, that’s three full time jobs right now. What do you do to make sure that you’re taking care of yourself, juggling all of that?

Shelby  14:15

I think, you learn that as you get older with it, right? For me, yes, music is a job, but it also is a part of the self care that happens along with it. Making time for friends, to go do things like, go on hikes, to go do things that are a little more careless and mindless, which as long as it’s also with people who understand, that’s great as well. Therapy is wonderful.

Sarah Shaw  15:59

I’m a big supporter of therapy. Therapy Wednesdays!

Shelby  16:03

Yeah, and I mean, when you’re, when you’re balancing with that many things, it is important to find someone who can help you balance it and juggle it. Because it is a lot, and sometimes it’s just needing someone to help you think of something in a new light and a new way, or let you know that you’re doing, okay, that’s a big one too, but that’s a big one for me. Therapy, having a friend system, even if it’s just a call, and even just sitting outside for a little bit.

Sarah Shaw  16:24

Get that Vitamin D and get that therapy and get that, I’m trying to think of another word that rhymes with E, but Shelby and Shelby…

Shelby  16:33

There we go!

Sarah Shaw  16:34

All done, Shelby, thank you so much for coming on the podcast, for sharing your experience, and really, I haven’t been able to talk about singing or music so much on the podcast, so it’s really good to have you and your experience on and hopefully this reaches other people who are musically inclined, or maybe just lovers of music, and we’re able to kind of relate to some parts of your journey. So, thank you for coming on the podcast.

Shelby  16:58

Well, thank you so much for having me. And you know, anytime we need to do a “Talking Head Pain,” jam session, then we can do that, in a quiet, therapeutic way.

Sarah Shaw  17:07

There we go. I have to dust off my violin and tune it right, and I’ll reach out.

Shelby  17:12

There we go, we’ve got it started.

Sarah Shaw  17:14

Awesome! Thanks, Shelby!

Shelby  17:15

Sarah, thank you so much!

Sarah Shaw   17:17

Thank you for listening to this episode of “Talking Head Pain,” the podcast that confronts head pain, head on. If you have any questions, thoughts, or suggestions for us, you can send us an email at [email protected]. If you like this episode, please give it an honest five star rating. Write a positive review and spread the word by sharing with your friends and family – It’ll help more people like you find us. I’m Sarah Shaw, and I will see you next time.

Narrator  17:46

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.

Sarah Shaw  00:10

Welcome to this episode of “Talking Head Pain,” the podcast that confronts head pain, head on. I’m your host, Sarah Shaw, Associate Director of Diversity, Equity and Inclusion, and community outreach at the Global Healthy Living Foundation. I have been living with chronic migraine for almost ten years, and I’m very open about navigating life with my chronic disease journey, as well as my experience living with anxiety. This podcast will be a window into other patients’ lives as they navigate their own journeys living with chronic pain, migraine, and mental health. Today we’re joined by Chandler, a chronic pain recovery coach who also live with chronic migraine and cluster headaches.

Sarah Shaw  00:53

Chandler, welcome to the Talking Head Pain podcast!

Chandler  00:56

Thank you. I’m happy to be here!

Sarah Shaw  00:58

I’m really excited to dig into the discussion today. But I like to start off each episode asking people if there was one word you could use to describe your migraine or head pain issues. What would it be?

Chandler  01:09

My word would be inconsiderate.

Sarah Shaw  01:11

Mmm…

Chandler  01:12

Very inconsiderate.

Sarah Shaw  01:14

I like that, they are, they’re so rude, right?

Chandler  01:17

They’re so rude.

Sarah Shaw  01:18

It’s like you could just be minding your own business. And it’s just like, hmm, not today. And it’ll just like barge in, like without even an invitation.

Chandler  01:26

Exactly. Like any future plans you have are just up in the air. You never know what’s gonna hit you.

Sarah Shaw  01:32

Ugh, yeah, so true. And while we’re on the topic of the inconvenient and rude migraine and head pain, I know from our last discussion, you mentioned that you live with both chronic migraine and cluster headache attacks. What has been like one of the worst attacks that you’ve had, can you just describe for people who maybe aren’t really sure what that is? Or how it affects you?

Chandler  01:54

Yeah, so my worst attack was actually my very first one. So, in 2020, I was woken up out of my sleep by the most severe pain, which at the time, I didn’t know what it was, but it actually was a hemiplegic migraine. So, I experienced temporary paralysis, and I just lost all control of my body. I had severe head, face, and neck pain. And then from then on, I experienced a cluster headache attack every single night for about two weeks, it would come at the exact same time every night at 4am. And from then on, I experienced 24/7 head pain, and face pain, and neck pain, and was diagnosed with chronic migraine and cluster headache attacks.

Sarah Shaw  02:38

Oh my gosh, I’m sure that must have been incredibly scary the first time that those attacks happen. And did you even know what was going on, at the time?

Chandler  02:46

I honestly thought I was having a stroke.

Sarah Shaw  02:49

Oh my gosh.

Chandler  02:50

That’s how bad it was, I couldn’t really speak I couldn’t really see, and of course I had paralysis. I just didn’t know what was going on. And I actually had been working with ear, nose, and throat Doctor because I had some sinus issues. And he had thrown out the idea of migraine that I could be experiencing instead of sinus pressure. And I just thought, well, there’s no way there’s no way I’m having a migraine attack. I just…

Sarah Shaw  03:10

Right.

Chandler  03:10

I had never had one before. So, then when this intense attack happened, I was like “okay, maybe this actually is migraine.”

03:12

Right. I’m seeing it a lot more now. But in terms of the different variety, I’m, that’s not like the right word that I want to use, but the different types of migraine, you’ve mentioned hemiplegic. I’m seeing more information now than I did, what, even like four years ago, like when you said you were experiencing that like I had only started really knowing about hemiplegic and vestibular migraine attacks only a few years ago. And so for your ENT; your ear, nose, and throat, doctor to kind of be in tune with that is really spectacular and amazing. And kudos to them for leading you into kind of the right avenue of one the language of what it is, to see a specialist, to get better care, or to get more care.

Sarah Shaw  04:01

I went through something a little similar. It wasn’t an ear, nose and throat doctor, it was a pharmacist, actually, where a primary doctor was saying “it was stress, it was anxiety.” The word “migraine,” never came up when I would go to them talk to me about my symptoms, the nausea, the light sensitivity, the temporary blindness in my eye, and they’re like, “it’s just stress, you’re just stressed at work.” And I’d had the head pain and so I was in a pharmacy just looking at the over the counter medications, thinking like, I have head pain, but I wasn’t thinking about the nausea, and I just went over to the Help section. I was like, “Hi like, do you think this like will help whatever I’m feeling,” and she was like, “Well, what are you feeling?” And I said, “Well, my stomach hurts and it’s really bright.” And she was like “Okay, I actually think it sounds like you’re experiencing like that’s light sensitivity and nausea.” And once she said the word nausea and light sensitivity, and she was like, “It sounds like a migraine attack. I can’t diagnose you but you should see a neurologist.”

Chandler  04:55

Wow!

Sarah Shaw  04:56

That was the bridge; I should say, the bridge to get me over to better care and it sounds like there’s a lot more education that needs to be out there. You went through ENT, a pharmacist, kind of diagnose me like, they sounds like there’s a lot of access issues and people falling through the cracks who don’t know what it is that they’re experiencing.

Chandler  05:13

Definitely.

Sarah Shaw  05:14

I’m gonna get to this a little bit later on, since it’s Minority/Bipoc Mental Health Awareness Month, but I was having a conversation the other day with another friend who lives with chronic migraine and mental health CPTSD. And we were talking about how a lot of people with invisible illnesses, especially women, right, or non binary people, “it’s all in your head, it’s all in your head,” like, you know, reminds me back to when I don’t even know how far back that dates, I think I saw something in terms of like B.C. hysteria, like women were diagnosed with hysteria for things that were going on in their body, that were actually very real. But, because no one had studied the female body, that there was just not a lot of diagnosis or treatments for these things. And I was thinking about this and reflecting it about how all in your head for so many years, people who have difficulties getting diagnosis are told that, but then I kind of want to have like a reclaim your moment of actually, it is in your head. And this kind of probably goes into like the Mind Body Syndrome that you focus on and you specialize in about how it actually is in your head. Chronic migraine is like literally in your brain, right? The pain is coming from there. And then your brain is telling your stomach not to do these things. Anyway, I want to know your thoughts on the all, “it’s all in your head,” when actually it is all in our heads, but not in a dismissive way, like we’ve been told.

Chandler  06:35

Right, not in that way. Yeah, I actually love that reclaiming that it’s in your head. Because I feel like people that deal with chronic pain and chronic illness are constantly invalidated. So, we naturally get this defensiveness when someone brings up a Mind Body connection, because so many times when doctors bring that up, they just want to write it off as stress or anxiety. But, when we think of the Mind Body connection, we have to think about the way that the brain and the body are connected. So, the brain sends these signals to the body, and it doesn’t mean, when we say the brain, we’re just saying, just a mental health issue like anxiety or depression. We’re even saying like a physiological process of the brain sending a signal to the body. So, when we say it’s all in our heads, we can say something like, “We feel it in our body, but the solution is in our head, or the solution is in our brain,” instead of thinking of it as it’s just on our head, like we’re making it up. But, we can look to our heads; look to our brains, to get to a solution.

Sarah Shaw  07:40

Right. And you’ve been really working in Mind Body syndrome for a while now. How has that impacted your own chronic illness journey? And if you don’t mind, digging into a little bit deeper about the Mind Body syndrome connection.

Chandler  07:52

Yeah. So, throughout my chronic migraine journey, I had so many other diagnoses piled on, like you mentioned, vestibular migraine, I ended up having that diagnosis piled on I dealt with fibromyalgia, IBS, huge list, we would be here forever, if we talked about every diagnosis and symptom that I had. And throughout all of my treatments, my medications, nothing really gave me long term results. I was previously working as an associate Marriage and Family Therapist, and I had to leave my job and go on disability leave, and I just was in 24/7 pain. So, if that gives you an idea of where I was at, on my journey. And what really gave me long term results and actually gave me my life back to the point where I don’t experience chronic symptoms anymore; I haven’t had a migraine attack in years, is focusing on the Mind Body connection. So, for my journey, that’s really what has been a game changer for me. So, basically, this led me to be come a Mind Body syndrome practitioner. And Mind Body syndrome, which is also known as neuro plastic pain. You might be hearing neuro plastic pain online, but it’s basically when the brain misfires pain signals when there’s no structural cause in the body for pain, or when that structural injury has healed or when, say that first migraine attack that you ever have is over, the brain remembers that process. So, anything that it feels like could be off in your body or off in your external environment. So, say things that are keeping you on alert, it will continue to send that pain signal because it thinks that you’re in danger. So, working from a lens of Mind Body syndrome, or neuro plastic pain, actually helps you focus on the brain instead of trying to fix something in your structural body.

Sarah Shaw  09:38

Wow, I go to therapy.

Chandler  09:39

Same.

Sarah Shaw  09:40

And we talk a lot about trauma, and I’ve heard a lot of other my friends who are very invested in therapy and a mental health wellness. A lot of things that I’ve heard are actually about EMDR, also known as eye movement desensitization and reprocessing. And what that does is it kind of creates new pathways right for you your brain to deal with current events that are happening, that may have pathways in the past, that you have been prone to react from. Like, for me, I, unfortunately, come from a lot of trauma and a lot of experiences and so, something that will happen to me like, if somebody will send me a message saying like, “Hey,” I’ll immediately get like anxiety of like, “Oh no, I’m in trouble I’m doing this thing,” and so working on that in therapy has like really helped me get out of that flight mode that like my brain and body, I’m an anxious girly, it’s gonna happen, but it’s allowed me to at least break out in sweats and not, you know, like full on panic and stare at my computer screen for like 20 minutes because I can’t move from that fear and so it sounds like a lot, and obviously, I’m also too on medication right. So, for every body is literally different, like what works for some people might not work for somebody else. But I love that there is this option out here for people who are you know, maybe on medication, but like not getting the exact results that they need, that they can combine, right. Holistic medication, and this Mind Body syndrome practicing into their toolkit, if it helps them. I’m always someone who’s like, “I’ll try it,” please just give me something to try it because like being in pain sucks, like it sucks. It’s a drainer, it’s a lurker. So, anyway that we can figure out ways to make our bodies be in less pain, which is also trauma, like the being in pain, you said 24/7, like that is so draining, and actually like kind of leads me into like, we’re talking about mental health, we’re talking about it being Bipoc Mental Health Awareness Month. How does mental health play into your life with chronic illness, chronic pain, or just pain in general?

Chandler  11:43

Sometimes I think of it as a chicken and an egg situation, like which came first. So, so many people that deal with chronic pain and chronic illness had mental health issues beforehand. And then some people, their mental health issues started after the pain and illness, because the pain is so intense, it becomes part of your identity, it takes over your entire life. So, it’s so important to focus on mental health when you’re dealing with pain, because if you don’t deal with that, it’s both of them are just going to worsen. And I liked what you said about your practice with EMDR. The subconscious mind remembers what the conscious mind forgets. So, there might be so many triggers that you have, that you don’t actually realize, because you haven’t worked through them, you haven’t noticed patterns. So, if we can tap into looking at our mental health and how we emotionally respond to our physical pain, how we emotionally respond to things in our environment, this can actually help us decrease the pain symptoms that we’re experiencing.

Sarah Shaw  12:44

Now, that’s a really good point. I think I’ve always lived with mental health issues. But I’ve noticed that they exacerbated when I, when my migraine attacks went from being just episodic to chronic. Right, like, in the beginning, it was like maybe three or five a month. And to me at that time, that was the most horrible thing to happen. Like I couldn’t go to work. But it was only looking back now, like it was only five days like it was only three days that like I wasn’t in up until two years ago, I was having migraine attacks 20 to 25 days, every single month. And I know that I became more incredibly anxious, I became more stressed, I became depressed even, where you’re in a system, your body’s in a system of just constantly being in pain. And at the time for me, there was no hope, I had been through a lot of the medications that were out there, and none of them were working for me. Even my old doctors were stumped. And they even like went as far as call me a “problem patient,” when like, that’s also not the right language to use. It’s not that, she’s like, “Oh, well, you failed the medication.” No, it’s not. The medication failed you and we need to keep working at finding a way to get you back to baseline. Now thankfully, two years later, I am on better treatment, I am managing my symptoms so much better. And I do know that having a therapist that validates not only my mental health, but my chronic illness, like I’ve been with people who downplay chronic illness and like, “Oh, it’s not that bad,” or “Why don’t you RSVP to things,” like “You should just go and push through it.” And it’s like, that’s making me feel like less than, like less than a member of society. And I hear it a lot, in the chronic illness community. And I think now we’re talking about comorbidities, mental health is coming up a lot, and I just really wanted it to take a moment to talk about it during such an important month where we don’t talk about mental health as black indigenous or people of color, right? Like…

Chandler  12:57

Right.

Sarah Shaw  13:21

I want us to be open and feel like it’s okay and if I’m the person, and you and I are the people, that are the ones breaking the silence and helping more people come forward and talk about mental health comes along with living with chronic illness and chronic pain. That’s okay. So…

Chandler  15:01

Yeah.

Sarah Shaw  15:01

I appreciate this topic. And speaking of like, you know, I know that you said, you’re doing so much better now. And I’m thrilled, like I’m so happy, and you know, we talk about like remission and we talk about, you know, getting back to baseline that, that is always my thing, because I think for me, and maybe this is not the right way to think; part of me is like, I’m just may always have this but if I can manage it to where it gets back to that level of less pain during like, two days, a month, three days a month, like that’s a win. That’s a goal for me. But when you do or when you did have those difficult days, what did you do for you, to kind of like self care, make sure you’re taking care of you, community care? What sort of tips can you share with our listeners that they may be able to utilize?

Chandler  15:45

On those days, I feel like I had to really challenge myself to not try to be productive. Like there were so many times where I just want to, quote “push through,” and I had to really just let myself say, okay, it’s okay to lay down, curl up with a blanket eat some ice cream, like I wouldn’t usually go get like a Coca Cola. Like, I don’t know why McDonald’s Coke, hits different when I have a migraine attack.

Sarah Shaw  16:08

It does! No, they do something with that syrup, I’m telling you!

Chandler  16:13

Yeah, I feel like they’re putting like something in it. Like, it’s like the carbonation hits different. So, I would let myself do that if I was able to walk, I would walk it outside in nature for some reason that was just my time to just like completely zone out and for some reason that, which is making me feel better. And then also I would love to just curl up on the couch with my husband, watch some reality TV, and just let myself not be productive. There are so many times where I felt guilty for not being able to work and I had to just let myself be and remind myself I was doing the best that I could. So, if the best I can do is a McDonald’s coke and some ice cream, and some reality TV, that’s what I’m going to do and just not put pressure on myself to like do more than I’m capable of in that moment.

Sarah Shaw  17:02

Snaps to that! Like seriously, and that is a really hard cycle to break. I feel like especially, like as black people, black women, like there is this unspoken pressure I think that we always have to be productive, we always have to be not taken the wrong way, not come across as aggressive or strong, this whole trope honestly, if the strong black woman like I would like to retire that, and like be like the rested relax. The rested and relax black woman. Please can we have that? But no, what you’re saying Chandler is so important. And it took me a really long time to realize that you cannot pour from an empty cup, like if you are flaring, if you are struggling with your mental health, like you have to… what’s that saying? “You put on your own life vest before you put on someone else’s.” You have to take a step back and take care of you. And also I’m stubborn, it took me a while to like allow help from my partner, like she was always there like, “what can I do?” I’m like, “Nothing, nothing. You can’t do anything. This is all on me.” It took me up until a few years ago to be like, “Actually, can you like go get me my medicine, please?” Like for me that felt like such like a huge ask. And she was like, “Of course!” So, just being able to, you know, be in tune with your body, to know when you can do things, when you need to take a step back, I think is so important, especially when you’re getting flares from all angles from actual pain to nausea to like you said your stroke like symptoms. Like, no one would expect someone with a stroke to come to work.

Chandler  18:34

Exactly!

Sarah Shaw  18:35

Taking that pressure off of our shoulders and backs, I think is important. So, I’m hoping this conversation lets someone else out there know, it’s okay, sit down, unclench your jaw, lower your shoulders, it’s going to be okay. And we have people like Chandler out there to kind of help you navigate through that. So, I just want to thank you for coming on the show today. I appreciate you sharing your tips letting us learn about something that I just only discovered a couple of weeks ago through you and it’s so important. So, Chandler, thank you so much for coming on.

Chandler  19:04

Thank you so much.

Sarah Shaw  19:06

Thank you for listening to this episode of “Talking Head Pain,” the podcast that confronts head pain, head on. If you have any questions, thoughts, or suggestions for us, you can send us an email at [email protected]. If you liked this episode, please give it an honest five star rating, write a positive review, and spread the word by sharing with your friends and family. It’ll help more people like you find us. I’m Sarah Shaw and I will see you next time.

Narrator  19:35

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 your host, Joe Coe, and I’ve been a migraine patient for over 20 years. Have you ever felt that it was hard to get the medication that your doctor prescribed? Have you been frustrated with denials, forced to jump through hoops and take medications that you and your doctor don’t think would work for you? That might hopefully change based on the work that the neurologists at the American Headache Society and patient organizations like GHLF are doing. I’m here today with Dr. Ailani and Dr. Tepper, both headache specialists, researchers, and world renowned neurologists. I’m going to speak with them about how some insurance providers and pharmacy benefit managers might make it easier for you to get access to these newer migraine medications. Really exciting news that we’re hearing!

Joe Coe  00:57

Dr. Ailani, I’m gonna start with you. Were you surprised when you learned about this change? Can you share who it might impact and what the actual changes and how it came about?

Dr. Ailani  01:06

Yes, absolutely. So, I will say let’s first talk about what this change actually is. The American Headache Society has updated its consensus statement basically stating that the society generally believes that CGRP (calcitonin gene-related peptide) blocking therapies should be first line for preventive treatment. And this is based on what now is a much longer time period of safety and efficacy data. And also some data that really compares our traditional oral therapies that have been around a long time but have not been created specifically for migraine. And there have been some now head-to-head studies comparing anti CGRP therapy to these traditional agents and showing that these anti CGRP therapies are better tolerated, patients stay on them longer. And because of that, they tend to do better over time. So, there’s now enough data that really pushed us to restate that we think we should be first line and insurance companies and patient organizations really took this up and made some changes. And some of these companies that work with payer groups that are the ones that make decisions on what kind of medications are going to be on your formulary, and we call these pharmacy benefit managers, and particularly Express Scripts has made a decision that they’re going to allow us to use these anti CGRP therapies for prevention more as first line without having to go through other steps to receive them. This still means that they require prior authorization. But, it takes away this whole idea that we have to try traditional oral generic medications that weren’t created for migraine specific reasons that might carry a lot of side effects. It’s pretty big news and I would say I was really surprised that happened this quickly. I thought, and actually, Dr. Tepper and I are well prepared to go in and educate our payer groups. And we’re in the process from the American Headache Society to really start to become more involved in order to educate our payers and educate why these medications are important and safe and good for our patients to be able to have access to early on. So, I thought we were looking at one to two years from now, before this would happen. We’re only several months into this publication. So yeah, I’m surprised and I’m really happy as well.

Joe Coe  03:13

Yeah. And I could just share as a patient that it’s really awesome to hear that providers are taking time out of practicing medicine. I guess it’s awesome in one way, but sad in another, that you have to fight so hard to get us on the right treatments, but hopefully this will make it easier and we have to be hopeful. We do know that payers and insurance companies and pharmacy benefit managers play a lot of games with us sometimes, so we’re gonna stay vigilant, but a win is a win, and we’re going to take this and celebrate it. Dr. Tepper, turning to you. What does this advancement of care mean for patients?

Dr. Tepper  03:47

Well, let’s back this up and talk about how we got to this stage, which I think is a really great first step. And actually even before the first step, as Dr. Ailani said, the American Headache Society took a position that was based on evidence that patients should not have to go through a series of non-specific old fashioned treatments that were laden with side effects and generally didn’t work in order to get to treatment that was developed, specifically, for migraine and which did not carry with it the side effect burden. And the American Headache Society put out a statement filled with evidence, in April, and encouraged payers and insurance companies to take away these obstacles to care. These were simply obstacles. As you said, Joe, it’s somewhat games that these organizations played, in order to prevent people from getting to the care they needed, and for us as practitioners for matching patient need to treatment. What insurance companies generally do in the United States is to use what are called pharmacy benefit managers or PBMs that manage what is covered in term of treatments, what’s not, what is necessary for prior approval, and how patients can access these care. And what has happened in the exciting news is that one of the big three PBMs in the U.S. announced within this week that they’re no longer going to require that people with migraine have to have tried a variety of older medicines, and had those medicines fail, and have that all be documented in what are called step edits, but which really are obstacles to appropriate treatment. As Dr. Ailani said, we will probably still have to do prior approvals, but it won’t require us doing a long and laborious checklist, and people having to go through all of these steps before they can get to appropriate treatment. This is really great news, this is really fantastic! And now we need to turn our attention to those payers that have not yet recognized that times have changed.

Joe Coe  05:58

100% agree! And I know our organization will stay vigilant on that through our 50 State Network of Advocates and all the policy work that we do to make sure that everyone gets the right treatment at the right time in their patient journey. Because we know, and you know better than I do as doctors, that treating migraine earlier reduces the likelihood of disability and chronification of migraine. So, we’re doing things proactively with these policies to ensure that we live healthier, happier lives as migraine patients. So, it just makes sense to us. Unfortunately, what makes sense sometimes doesn’t translate into what happens in the real world. And we’re really glad that folks are taking the evidence and actually using it to make a positive change. So, Dr. Ailani, how does this change the dialogue between you as a healthcare provider and a patient, or your colleagues and their patients?

Dr. Ailani  05:58

I’ll say, when I first heard the news, the first thing that came to my mind was, “oh, man,” that patient I saw yesterday, I had this very difficult conversation of we have to try two generic medications first, and then go on what you saw on television, and actually came in to see me and wanting to discuss. I don’t really have to have that kind of conversation again, with certain payers. And that also means that I have to know, and the patient has to know, who their pharmacy benefit manager is. So, how are we going to have these discussions with patients where sometimes it’s already a struggle, understanding this is your insurance. And then this is who your, maybe, 90 Day supplier of meds are. That’s usually the fastest way I get to who’s their pharmacy benefit manager? And then if it’s one of the ones that I know, might be part of this decision, if I could potentially try offering them a CGRP targeted therapy first line. And is this going to work? Because this is a hope, this is what we’re told, but it’s still kind of a risk. What if it doesn’t go through? What if you know, we’re told July 1st, and it’s actually middle of July? And I give it a try on someone? And I’m told “oh, no, they still have to try X, Y, or Z” because that policy hasn’t quite kicked in, or they have a certain other type of plan. So, it doesn’t quite answer that question about the conversation with the patient. What it is telling you is my anxiety as someone who’s been doing this for over a decade, and has seen the frustration of my patients. I don’t want to let them down, at the same time, I want to give them what they want for themselves, and what they’re going to be able to stay on and has the least side effects, and they believe in. Their belief in their treatment, to me is the most important thing. And so, a lot of the conversation has to center about this understanding that there’s a possibility you might be able to get this treatment, if you have this particular right type of plan. That’s a hard conversation to have with a patient. Everyone thinks they have the best insurance. And we’re kind of trained to think that right? “I have the best insurance, they always allow me to get everything.” And I feel like “oh, I wish every insurance was the best, but actually, most insurances, they’re not so great.” And it’s just about the type of disease you have in the diagnosis and what they want to pay for. And it’s kind of heartbreaking when the patient first realizes that, “oh, maybe my insurance isn’t that great, because they’re not going to allow me to get this treatment my doctor says is the best.” So, I have to come up with this way of having this very complex conversation and not let the patient feel let down by something. That their insurance is letting them down, that I’m letting them down, that we’re able to cover a backup, in case this doesn’t work in the first few months. So, I think we’re really in this process of trying to figure out how to navigate this conversation. I think six months from now, it’s going to be very simple. Here’s all your options. “This has the least side effects, this might have some more, what do you think?” I can tell you most of our patients are going to choose the left side effect option. Right now, we’re in a very testy time period of really hoping this is an accurate situation, having to figure out how we find this, you know, PBM for these certain patients and how do we educate our patients and understanding if it’s not true, this is what a good backup is and don’t lose hope.

Joe Coe  09:49

Yeah, really, really important stuff there. I know from our position as a nonprofit, talking with legislators and stakeholders around what even a PBM does and what role they have or shouldn’t have in our health care system is a complicated discussion. I never thought about it as reducing it to your 90 day supplier. But really what is their purpose, and it’s basically to make money, I mean to boil it down for the insurance company. And that is something that doesn’t incentivize, necessarily, the best treatment. It could in this case, they’re doing the right thing. Congratulation, let’s follow through and see if it works. And we hope that a podcast like this will help those patients that you might not have more than a couple of minutes to talk to, to better understand the issue and manage expectations and know that we’re not going to give up fighting. Your providers aren’t organizations like GHLF, and the National Headache Foundation and the American Migraine Foundation and the Alliance for Headache Disorders Advocacy, and all the groups that do amazing work every day are not going to stop fighting to make sure that you have access. So, Dr. Tepper, what would success look like in your mind based on this change in care?

Dr. Tepper  11:05

I want patients to be able to get the appropriate medication that their practitioner thinks they need for their migraine. That’s success, without a lot of restriction, preferably without prior approval. I want to know that when I write a particular treatment for a patient, after the patient and I have discussed it, after we have shared decision making, after the two of us work out a plan that the patient is comfortable with and wants to do, that we can actually execute that and the person who I’m talking to can go to the pharmacy or put in the mail order and get the treatment that the two of us have decided on. That is success! And I want the entire payer system for the United States to recognize that migraine is serious, that migraine results has had significant impact for people, and that it is treatable, and that people’s lives can be turned around with appropriate treatment, with minimal side effects for the most part. And it’s an opportunity to change people’s lives to change the society to make a huge impact. All we need is payers to recognize that the times have changed, and that they need to get with the program, and recognize that they have to cover these therapies that are appropriate, that are superior to the old treatments, that have less side effects than the old treatments, that people will take. That’s my goal for the future. And I was lecturing about this in Europe recently, in Ireland. And I said, this is not a matter of whether this is going to happen. This is a matter of when this gradually rolls out across the United States and across the world. And this is where we’re going to be. People are going to have their lives transformed by migraine specific therapy.

Joe Coe  13:02

Dr. Ailani, just to summarize, to wrap up some of the critical talking points, or takeaways, or top line things that patients should know about this.

Joe Coe  13:02

I love that! And I wanted to circle back to a point that you talked about prior authorizations. It’s not lost on me that Cigna is in a lawsuit right now based on using an algorithm and AI to auto deny 300,000 prior authorizations. We’re working against the system that doesn’t have our best interest as patients in mind. So, we have to be really understanding of that. The people that work at Cigna find people, the people that we’re going to call to try to get our stuff covered. They’re doing their job, they’re nice people, I’ve spoken to them in my insurance company, you can get very frustrated, but there are people, so we’re not bashing the people. The companies don’t necessarily have our best interest in heart. So, it was really exciting when we saw that this change is happening. On one end, “rah rah, this is amazing,” on the other, I’m like, “Well, what are they going to do to make it more complicated?” Or what are they going to do with, like, we saw with copay cards and then copay accumulator adjusters, and all the ways that companies do things to maximize profit and minimize care. So, right now I’m celebrating them. Express Scripts, don’t let us down, get with the program like Dr. Tepper said, and thank you!

Dr. Ailani  14:28

Yeah, so top line points: (1.) anti CGRP therapies for prevention of migraine have been recommended as first line treatment from the American headache society. (2.) The payers are starting to pay attention, (3.) and Express Scripts and Cigna have decided that you no longer will need to go through many hoops, and they’re going to put this as first line treatment without having to go through what’s called step therapy. You won’t have to try and have failed other oral or other types of preventive medication to have this first. You might still need a prior authorization, and you will have to have the right type of pharmacy benefit and the right type of insurance. So, it’s really important when you go to see your healthcare provider and say you are interested in first line therapy of an anti CGRP medication, that you know what your pharmacy benefit management plan is. It’s not what’s on that card that you have in your wallet with the insurance logo on it, you can call your insurance company, they can help you figure that out. But walking in with that knowledge is going to be extremely helpful to you and your health care provider to making steps to get that medication to you quickly. If you’re not sure, there’s no way the provider can really figure that out without you knowing. So, really coming in with that knowledge is going to save a lot of steps.

Joe Coe  15:46

Amazing! And Dr. Tepper, two questions to wrap this up. What should patients do if their insurance company or pharmacy benefit manager denies their medication? And an additional question that I thought about as I was listening to you both: how should patients educate their doctor if they’re not a headache specialist, and they might not know about the consensus statement in this change? Like, what should we tell our community, if they are not getting covered?

Joe Coe  16:10

100% agree! I would be really upset if I didn’t say this. And I use this term payer. It’s not necessarily the best term and I wanted to flag it. The employer, and you brought up talk to your employer, the employer is the payer, we pay the insurance companies to provide a service and we use this language like they’re doing us a favor. They’re providing a service that either we pay for, the government pays for, or our employer pays for. So, we’re actually the payers, but it’s shorthand, I use it. But I would be remiss if I didn’t give my little dig around that language. Really appreciate the discussion. Is there anything that we didn’t cover that you feel we really need to highlight?

Dr. Tepper  16:10

Those are really good questions! Let’s start with the practitioner. Because if the practitioner is not aware of the position statement from AHF, that’s a good place to begin. And a patient can download it, the copyrights lifted, and it was the senior author was Andrew Charles, and it was published in the journal “Headache”, in April. So, everybody can access that, through a library. And I would encourage patients to get a hold of that document, and then they can show it to their practitioner. But let’s say you have an enlightened practitioner, and they have hit the brick wall of a payer, the other two PBMs that have not done this are CVS Caremark and Optum, which is part of UnitedHealthcare. So, United and CVS Caremark have not removed the step edits, or most patients, while Cigna and Express Scripts have. So, if your PBM is CVS Caremark, and almost certainly if it’s Optum, United, they will require the step edits. You may as a patient have to go through those step edits, in order to get to appropriate treatment. But, I think I would write to the PBM and to your payer, and point out that Cigna and Express Scripts has lifted these obstacles to treatment, that the American Headache Society has recommended that they not be done anymore. And then the last piece of this is if you have an HR person at your employment, I would let the HR person know that your particular PBM is restricting treatment that the National American Headache Society has said they should not be doing.

Dr. Ailani  18:32

I think I just want to echo what Stew (Dr. Tepper) was saying. And just remind all of our patient listeners that you do have the strongest voice! My patients often think that we as the physician do. No, not anymore, you are the payer for the insurer. And if the insurance company isn’t allowing you the treatment that you believe is the best for you, you have every right and everything behind you to appeal their decision. And now we have authored and really stood behind a very strong article that you can actually Google search and download for free at the American Headache Society’s most recent position paper published in 2024, there are three of these. That’s why we keep mentioning look for the one for 2024. That’s the one that will tell you that we think that first line should be these anti CGRP treatments. And when you write an appeal and you include the reference to that article, it’s going to be very hard for them to give you an answer that opposes what a national organization is standing behind, but your doctor doesn’t have the power that you do. I suggest to remember that!

Dr. Tepper  19:37

I would just like to close on a note of hope. This is such a fantastic time for patients to have these therapies that are marvelous, that are life altering, and that have minimal to no side effects for most people, is the greatest experience as a practitioner and a partner in healthcare with my patients. I cannot tell tell you how excited I am, and how I look forward to helping people, and encouraging all the system to make these therapies available for people, when appropriate. It’s going to be a fantastic ride and I really look forward to the next several year!

Joe Coe  20:16

Thank you for listening to this special episode of “Talking Head Pain,” the podcast that confronts head pain, head on. If you have any questions, or thoughts, or suggestions for us, we’d love to hear them. You can send us an email at [email protected] If you enjoyed this episode, please give it an honest five star rating write a positive review and spread the word by sharing it with your friends and family. I’m Joe Coe and I’ll see you next time!

Narrator  20:43

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.

Christa  00:10

I think building your community within especially queer networks, oh my god, queer disabled mutual aid is the most heartwarming, the beautiful thing I have experienced in my time on this earth. And if I die like tomorrow, I would just like to say that I’m very grateful for like the queer neurodivergent intersectional identities, especially qtbipoc like queer people of color, who Oh my god, like we are there for each other.

Sarah Shaw  00:36

Welcome to this episode of talking head pain, the podcast that confronts head pain head on. I’m your host, Sarah Shaw, Associate Director of Diversity, Equity and Inclusion and community outreach at the Global Healthy Living Foundation. I have been living with chronic migraine for almost 10 years and I’m very open about navigating life with my chronic disease journey as well as my experience living with anxiety. This podcast will be a window into other patients lives as they navigate their own journeys living with chronic pain, migraine and mental health. Today we’re joined by Christa a death doula and community care facilitator. Welcome to the show, Christa.

Christa  01:19

Hi, Sarah. Thanks for having me on. It’s nice to be here.

Sarah Shaw  01:23

No problem at all and also it’s June. So Happy Pride!

Christa  01:27

Happy Pride! Yes, I think it would be remiss to not mention that given that I am queer and you know, you are queer as well. So celebrating our pains through I mean, it is a painful month to for people for pride. I don’t want to like discourage or erase that history. It’s a powerful moment. Thank you for having me on to share my story and also just being queer and being alive is and I’ll say this often, I think but one of the things that I think especially for us queer people with disabilities and like migraine and stuff, you know, our existence is resistance, especially as like queer people of color.

Sarah Shaw  02:02

When people tell me what’s the Gay Agenda and I’m like, my gay agenda is just to live just to be my authentic queer self. That’s what we’re here to do.

Christa  02:11

My gay agenda is to live and make sure that other people who are like us or share similar intersectional identities, right? That’s why I do death doula work. It’s why I do like patient care advocacy stuff. And like Community Care facilitation. See you there we go. I do community here facilitation because of seeing the gaps in our communities, especially when it comes to health care and being queer. Absolutely. And also being people of color. So yeah, thanks for having me here.

Sarah Shaw  02:38

No problem. That’s why you’re here today. And I know you kind of already hinted at it a little bit about your career and your passions as a death doula and as a community care facilitator, how does that relate to your chronic illness such as migraine and even jobs that you’ve had in the past? How has migraine kind of intersected into that? And maybe also, where has it taken you or what things have you had to kind of pivot from?

Christa  03:03

Sure. So I would say the migraine hit, I’ve always had migraine. I think throughout the years, it was just something that I didn’t really notice, right? We don’t really think of migraine, especially if you don’t have the language for it and you don’t have someone pointing it out to you. So I always thought they were headaches and I also didn’t realize that I was suffering from them because of hormonal changes. And I allude to this I have many overlapping disabilities and chronic illnesses. And I think migraine kind of went to the backside of the like health stuff because I was dealing with so many other compounding things, but specifically migraine in terms of my health journey is like I had migraines I think like one of the first symptoms of my endo endometriosis for those who are not familiar, but with endometriosis, we don’t really know how it works but there is part in the cycle where your hormones just drop and when I had I basically had an IUD. It wasn’t enough hormone to suppress those symptoms, which is how I found out I had endometriosis or am finding out but in the process of having a quote unquote regular cycle again on this IUD, I would have debilitating migraines right before my period, like about the two to three days before my period I would be hit suddenly with a migraine and it’s debilitating. I mean, that’s the one word that I would be using for it is it’s debilitating because then I just like I can’t concentrate there is this pain in my head that lingers and throbs and has a life there and it’s hard too because I have to compound with the like I have GI symptoms of my endometriosis so like I throw up. I throw up and this month I started a new IUD I switched IUDs the moods not great but migraine has been less which is good. I still have to take like triptan ahead of time to be able to combat those migraine during my period and PMDD so it’s hard like I don’t always know that the migraine is going to set in unless I’m really keeping diligent track of my cycle. And that’s hard now too because I’m still adjusting to a new medication and the IUD. So migraine happens, it’s debilitating. It’s been happening for years, probably since high school, which is like when I started menstruating and such, and I think it’s been interesting because I also watch the journey of I can’t talk about my health journey without talking about my genetic component of it. And I remember watching my mother when I was younger, when she was still in her menstrual cycle, she would have really bad migraine. As a child, I guess I didn’t realize how bad it was. But now that I’m an adult, and I’m feeling and similar things that she’s feeling, I was like, wow, I do not know how you handle being a parent with debilitating migraine like that, because I’m like, she is a working mom, she doesn’t have migraine anymore, which is great because she’s after menopause, which is awesome. But I asked her about it when I found out and obviously with also like work and such and jobs and stuff, it’s really hard for me to like look at screens for a long time when I’m on my migraine. So migraine days, I kind of like take the time off. And that was kind of trouble for like the past work that I’ve done, which was mostly in person in clinic working with patients or like working on research stuff on my downtime. And sometimes it’s like, I don’t have the energy to look online or like I don’t have the energy to like get out of bed physically because I have to like I need to throw up and then I also need to just like deal with this migraine that’s not going away with painkillers over the counter painkillers, ibuprofen. I think the triptans are the only thing that really helped. But even that is like I have to catch it like right when it’s happening, or else I can’t rein it in anymore. Right.

Sarah Shaw  06:41

It’s a balancing act as someone who also lives with endometriosis, and my migraine is heavily affected by my menstrual cycle. I’m also on an IUD. Yeah, it is a juggling act trying to catch both things. And if you live with more than two chronic illnesses, you know, multiple things like I know that you also live with diabetes and all of these other things, you have to really carefully do the right recipe right to get it just right so that you’re not suffering in too much pain. And I kind of wanted to go back to what you were saying about your mother about how did she do it? Like, how did she live for so long in so much pain. And I think you and I had this conversation earlier about, you know, first generation immigrants and you kind of don’t know what you don’t know. And when you’re in survival mode, it’s weird how the body will sometimes go into this Hulk mode to get through. But then it’s going to come down at some point. And I think like you said, if you can catch it early, if you can get on the right treatment, if you can find accommodating work that you know works for you. I know that you had to kind of pivot and now you work for yourself, how has that kind of helped you? I know it doesn’t lessen your migraine attacks. But how has that helped you kind of navigate out of the in person nine to five looking at screens all the time?

Christa  08:00

So that’s a great question. I think that is constantly evolving, obviously, as I work with my disabilities and work with the endometriosis, and I mean straight up as someone who is full of I like to say like I am now just like a Crip soldier, I have this endometriosis that leads to PMDD, which is like oh my god, you’re not even thinking about that. Because the PMDD has migraine and component involved in GI stuff. People with endometriosis normally also have like really bad IBS or like GI symptoms. So it’s like I’m dealing with that. And I had that for years, and I never really understood. And then there’s the diabetes component, which is also genetic. And that is also like the PCOS. And they’re all kind of basically like hormones are very important. And now that we’re in a time that a lot of external environment stuff, and like epigenetic stuff can happen to us. And also intergenerational trauma, like we feel it in our bones. And it really is hard because I know other people aren’t as privileged as me. And I acknowledged that like I come from a family that made their money as immigrants and worked really hard for it to resource my brother and myself when they came to America, but because they’re in survival mode and resourcing and trying to provide for their children, they also didn’t really teach us how to manage our symptoms. And it’s weird because both my brother and my dad are physicians. So you would think that having doctors in the family really helps you connect with your body and it does in certain ways, but I think the cultural components of being part of this large diaspora that focuses on community care, and those layers of components of like, I’ve seen my parents and my family, like work really hard to get where they are. I don’t have that privilege and luxury because of my body. I am lucky to have them. But the work that I do for myself now is mainly very community based. It happens because I have the privilege to work on my health and to work on on building a community through advocacy. So it’s been helpful in that way because I can leverage what I do best which is like networking and community stuff. Most of my days now are kind of spent on and finding more sustainable ways to build an income like passively or actively without having to talk to like 20 clients plus a week. And so part of that is like writing and part of that is providing resources and doing talks and being an advocate. Definitely,

Sarah Shaw  10:15

I appreciate a lot of what you said, in terms of pivoting and sreen time and having to navigate yourself to accommodate the world instead of the world accommodating us. And I feel like dating you before, I’ve always dealt with menstrual issues from probably the first time that I started menstruating. So I was, unfortunately, I was very experienced in dealing with chronic pain at a young age. But that was kind of became the status quo of, okay, you have a uterus and you bleed, and you have cramps. And that’s just what it is. And I internalized that and it really wasn’t until I started getting these severe migraine attacks that I was like, this is not that it’s worse, but it’s really like put my thoughts and feelings into perspective in terms of the healthcare system and navigating it and having to speak up and having to advocate and being afraid to advocate I’m, uh, you said that you’re an extroverted introvert. So um, I also have like, anxiety. So like, yeah, at a doctor’s office is just like, Hello, it’s me, like, so I really had to train myself to be comfortable in those situations. And it really was from other community members helping me and advocating with me and for me, or my partner who comes with me to doctor’s appointments, if I’m going to a new provider to make sure I don’t forget anything or something like that. So I really appreciated what you said about community support, you touched on polyamory and the awesome like support system that you have. And I know for some people living with any chronic illness really not just migraine or endometriosis. Sometimes having a support system is hard to come by. For you what does support look like from your loved ones as it pertains to chronic illness and kind of supporting you, whether it’s your family members, your partners or friends? And second follow up? Was it kind of hard to start those conversations?

Christa  12:03

Oh, my God. Absolutely. And I also just want to like briefly say that, like a lot of the stuff we’re talking about right now is in one of my favorite books called care work, highly recommend it, they talk about like care pods. And a lot of the work that I’m doing is kind of based off of these crip and Disability Justice frameworks. And I applied them to non monogamy and my life. So I’m very happy about it. But yeah, I think right now, that question is a little tender and tough. I’m going through kind of a transition with one of my partners where we are separating, which is hard, but they’ve been a huge support. One of the things that I really loved about them and it’s still love about them is their dedication to within their means were able to like show up for my appointments if my you know, I have a spouse, and I live with the spouse and my spouse and I have been together for a decade now in September. We’ve been married for a little about six months now officially, congrats. Thank you, it was just a legal thing. We needed benefit or the insurance. Yeah, one of the things about being disabled is that some Medicaid can be awesome. But Medicaid really severely limits a lot of the options you have. And it takes up a lot of time. I know all about it, I’m sure like other people have to and so we really got married for the health insurance. So that’s one of the things that they provide me I have help from my family have like financial stability, my spouse is the breadwinner. And you know, we have dogs, which is also like having emotional support dogs is helpful. They’re quiet right now, which I think is really funny. Normally, they’re like screeching and screaming all the time. But one of the things also is like being and I want to touch on this of like this support of like when you’re disabled or like dealing with chronic illness, you have these moments and waves of like, I can help and no I can’t, I can help and self preservation. So that is for people who are disabled. Mutual Aid for us looks very simple, and it’s very small. And sometimes it can be very casual. It’s like being in a group chat with some of my best friends. There’s like I have a number of group chats. But there’s one in particular where two of my really close friends we check in with each other every day. We’re all kind of struggling through it. The other two people in the chat don’t identify as disabled and are dealing with like a lot of stress and we check with each other every morning we go hey, squad, how’s it going? What’s up what’s like your plans. One thing that I like to do because I physically can’t really show up for people the way that they want to is I put a lot of myself mentally and I do a lot of this work because it sustains the community. And it’s like I know I’m putting this because you’re in a moment of crisis. And I feel like the people because I love and give so hard and want to see people friggin survive, essentially is like, just to live life is that I put that into there. I make sure that like I’m kind of the person who steps back especially in crisis like I step back and I look at someone’s life and I was like alright, you have a gap of care here. You have a gap of care here. How can we utilize your resources and privileges that you have in order to fill those gaps for a little bit and like what can I do to help you facilitate that. And I think in giving that I get an abundant amount in return, we all have our own ambitions and dreams and priorities that were coming in. But we are gathered around the central cause. And I think community is being with people who like it’s a little smaller, we’re all geared towards the same belief. And so it’s from collectives of people and from gatherings of people, I have been more discerning about who I let into my community. And part of that is also building like care plans for yourself. And like decolonizing our view on family and community and my chosen family like these people, especially like during this very tough transition for me, as I’m going through a breakup with a partner, these people just like show up at my house, we joke that like because of also my illness. And because I’ve been dealing with stuff people in order to spend time with me have just shown up at my house, they just show up and they’re like, Hey, what’s up? What can I do for you? Can I bring you a little treat little treats are great. I single handedly think I fuel the treat based economy besides dogs. And I think that’s what I also try to do for my people. So it’s really cultivating and discerning Who do you trust enough to be able to, like, show up for you, even if it’s in small ways? Absolutely.

Christa  16:21

Some of my friends are like, hey, like you’ve been inside too much. Why don’t we go outside and like take a walk and touch grass and like sit in nature. And I think having those reminders, especially if you’re in like flight mode, which I don’t know how extreme your migraine can be or like when you have pain, but it’s like sometimes when you’re working through stuff, it really debilitates you and it really puts you in a spot where you just don’t want to move. I’m really lucky to live with a partner who cares so much about me and like is willing to pick up the slack where other people might not be able to or haven’t seen that I really appreciate my spouse for a lot of things, but especially because he is the main caretaker of me right now. And I think without that steady foundation and that I’m polyamorous like I think multiple people can fill multiple roles. And some people can’t fill the roles that you might need. But being in community and living my life in this kind of decolonized way. And I’m part of the Diaspora I grew up even though we touched upon this earlier of like, my parents might not believe in like mental health culture and like going to therapy and even like with migraine too write when we talked about like, oh, I had these pains and like people didn’t believe me, because I have XY and Z identities like you and I both appear to be femme, like people of color. And so people automatically are not gonna believe us and our pain. They read us differently. Yeah, and I’m fat as well. So that adds another component to it of like, oh, you’re in pain, you just need to lose like 20 pounds. And it’s like, do I need to lose 20 pounds to not have a migraine? No, you wouldn’t tell a skinny person that if they came in being like, hey, my head hurts, especially a cis white man who Yeah, I don’t want it to be like hateful against the cis hets But it’s just they have an advantage that we don’t have, especially because we openly appear to be different and outsiders. And so I think also building your community within especially queer networks. Oh my god, queer disabled mutual aid is the most heartwarming, beautiful thing I have experienced in my time on this earth. And if I die, like tomorrow, I would just like to say that I’m very grateful for like the queer neurodivergent fat, whatever intersectional identities of especially qtbipoc like queer people of color, who Oh, my God, like we are there for each other. I think there was only one employer that I’ve had in the past 10 years who like really sat down and was like, Hey, if you have migraine, you need to go see a doctor and you need to write a note. Like if you need these accommodations, or like your head should not be getting in the way of work. And I was like, oh, okay, you’re right.

Sarah Shaw  18:55

It’s so hard navigating all of that. I appreciate what you said about how you get support and how you’re supported through whether it’s through your friends, your partner, your spouse, little things, it really goes a long way. And I think for people who maybe weren’t born like with a disability or chronic illness and then suddenly in their early mid 20s Like we go through this like weird phase of people, at least for me, I don’t want to do for everyone else. But for me, I went through this really weird phase of I had endo but it wasn’t diagnosed until I was like 27 maybe 28 Yeah, but my friends in college and high school, they knew me as this like hyper energetic, like, do anything kind of person and then I graduated and then I had my first migraine attacks and they just they started to get worse and worse. And suddenly, like there was this transition of me really having to like you said put care into who I put my time and energy into people who couldn’t understand or empathize or show up for me in the way that I showed up for them and it’s been a journey. It hasn’t been easy, but I really, really appreciate community. I really appreciate the Qtbipoc community, the disability community, I’ve learned so much and I have been shown so much empathy and support and understanding that like I haven’t experienced in other spaces before, and I just Yeah, I was really vibing and nodding along to what you were saying about community sport. It’s so crucial and it’s so important and I’m also sitting here from a place of privilege of being able to work for an employer who understands that I have migraine understands that I need to take sick days where I can’t look at screens too much. I hope that we can navigate to a world where we have less migraines, we have less like sickness and we have accommodating employers and you were talking about burnout and exhaustion. I am an anxious ball of energy of I have been since I was young due to trauma.

Christa  20:53

Trauma. That’s the one of the keys. That’s the word. Yeah, that’s it.

Sarah Shaw  20:59

What do you do that kind of help center you bring you back on those really hard days or even before or leading after I know for migraine, there’s like the postdrome with Endo. You know, sometimes you need a few days to really recuperate and recharge, what are some things that makes you feel more like yourself or close to your regular symptom level?

Christa  21:19

It’s a good question just because like on days that are bad, they’re just bad. I just need to rest. Like, it’s like on days where I’m having flare ups. It’s my body’s way of telling me to shut up and like just chill. I think I also dream of a world where self care is involved with some community care, and that we have the resources and structure to be able to build those things for each other. So I think for me, it’s like having a health team that I really love. And it was like making sure that I felt really safe and secure with the health team that I have. So it’s like I love my gynecologist that I’ve started working with with my endometriosis. Her name’s Emily bland, and she’s amazing. She’s amazing, like medical. I’m just going to shout her out because I love her. She’s a person of color. She believed me. She saw me my PT Millie who’s at Med bar here in Greenpoint. Her name is Milly Gerlach, I love her too. She was also one of the first people who was like, Hey, why don’t we do this for you, like you should go to a doctor that takes care of you. And I think gratitude for these people and my support team is a big part of my life. And then it’s also just like enjoying the small things, I take a lot of baths, I do a lot of float therapy, that’s been fun. It does cost money, but it is a good experience. If you don’t have that, then an Epsom salt bath works just as well. And so I’m a big bath person. And I’m a big giving yourself treats. But also just connecting and saying I think slowing down has been the biggest self care practice and like not succumbing to the capitalist bs of like what clock time does to us and feeling productive, because it’s like, I’m really happy for you to that you have an employer that understands that, like, I’d be very shocked if like the employer that you have did not accommodate those things based off of what you were doing. But sometimes that’s how it works. And I think parts of self care are like acknowledging when something’s not working for you sitting and slowing down, I meditate a lot as well. So sitting in slowing down and being mindful, like somatic practices and going back to the body and retraining. I really recommend those then also just like treating myself to fun things.

Sarah Shaw  23:21

Those are such good… like you touched on like 25 Different like important points Bad’s Yeah, slowing down having a healthcare team that you trust that you know, you’re going to be good with and communicate with treats like come on, like my partner and I when I go get one of my treatments in Philly, we have a treat day after it’s like treats for treat, like it’s just, it’s the little things that like really make a difference. Like I’m gonna give myself a little treat for being with a  migraine for two weeks. And just Yeah, community like that has been a theme throughout this entire conversation. And it’s so important. So thank you for bringing us back and grounding us into the things that matter. And I we’re gonna wrap up here. So I just want to thank you, Krista, for coming on your podcast talking to us. And I hope you have a great rest of your June and yeah, thanks for coming on.

Christa  24:10

Thank you so much for having me. And I loved sharing this. And the nice thing about these things, too, is like now we are part of community together. Right? And it’s good because it means that there’s more space to be shared more stories to be told and more resources that we can now share with each other. And I find that to be so beautiful, and especially during the month or month of pride Our month Yeah, I think community is probably one of the biggest things that keeps both queer people and disabled and chronically ill people like afloat and when you have these beautiful intersections that match I think that it really sparks something beautiful and noticing and acknowledging the like care and work that we both put into our separate journeys is also a very miraculous kind of magical thing. I like to find magic in the mundane and that’s another self care tip is just like find magic in your everyday like everything is magical.

Sarah Shaw  25:05

Magic in the mundane. Maybe that’s we’re gonna call this episode.

Christa  25:10

Amazing.

Sarah Shaw  25:10

Thank you for listening to this episode of talking head pain, the podcast that confronts head pain head on. If you have any questions, thoughts or suggestions for us, you can send us an email at [email protected] If you liked this episode, please give it an honest five star rating write a positive review and spread the word by sharing with your friends and family. It’ll help more people like you find us. I’m Sarah Shaw and I will see you next time.

Narrator  25:40

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 Talking Head Pain, a podcast that confronts head pain head on. I’m here live at the American Headache Society’s Scientific Meeting. This is Joe Coe and I’m here with a very special guest. Can you state your name and affiliation.

Dr. Christopher Gottschalk  00:25

My name is Chris Gottschalk. I’m the Director of Headache Medicine and the Headache Medicine Training Program at Yale University.

Joe Coe  00:31

And what was the most interesting or impactful thing that you’re taking away from this meeting?

Dr. Christopher Gottschalk  00:37

Two things I’d say. I was reminded from the discussion between doctors Burstein and Goadsby, that there is a study out now that shows that the longer you take an anti CGRP drug, the less often you are going to have prodromal symptoms, and the less often, even if you have prodromal symptoms, you will get a headache as a result.

Dr. Christopher Gottschalk  00:57

So, that’s the first time that I’d seen a study which tracks not just the FDA mandated measure of how many days do you have a headache, but actually looked at the evolution of how phases of migraine shift in relation to being on a good treatment for a longer period of time. And I think that’s the kind of thing we really need to focus on in the future.

Dr. Christopher Gottschalk  01:18

There is increasingly attention paid to other measures of benefit of these treatments, like quality of life in various ways, and cognitive function. All of those things that really end up mattering to people on a day to day basis, well beyond whether or not you have a headache, which is sort of the least important thing in the long run. So, I just thought that seeing that in real time, that people are starting to focus on a much broader picture of impact of migraine, how to measure it, and that the treatments that we’re using are actually having significant effects on many of those things, well beyond how much headache you actually have, was kind of cool.

Joe Coe  01:55

Can you just explain what prodrome is for folks that might not know.

Dr. Christopher Gottschalk  01:58

Sure! So, prodrome is the term we currently use for symptoms that emerge hours or days before a migraine attack, but that are linked to the migraine attack itself. So, that could be yawning, it could be being foggy headed, it could be being irritable or sensitive to smells, or lights, many different shifts that occur in that hours to 48 hours before. But for me, the revelation there is that what we used to call triggers are really much better understood as when you’re about to get a migraine, you get sensitive to what’s around you. And that’s the right explanation for what otherwise would be called a trigger.

Joe Coe  02:36

Very helpful. And you mentioned there was one other thing that you wanted to share?

Dr. Christopher Gottschalk  02:40

So, I’m now the co-chair of the Fellowship Program Directors Committee, which I’ve been a member of for a while. But what’s really exciting there is the fact that we looked over the recent 10 year history of this committee, and that when it started 10 years ago, there were four Headache Medicine Fellowship Training Programs in the country, and there are now 56.

Joe Coe  02:59

Amazing!

Dr. Christopher Gottschalk  03:00

So, the idea that we are really taking leaps and bounds in addressing the lack of the supply of headache medicine trained people that we’re getting more and more involvement in research from these fellows that we’re getting more and more interest from the neurology field. And we’re also talking about things like formalizing the path to train non neurologists. Right, we all know that we would like to see GYN doctors and EMT doctors and internal medicine doctors, who are experts in headache because they see more of these patients than we do.

Joe Coe  03:31

Absolutely. Well, thank you so much for your time.

Dr. Christopher Gottschalk  03:33

You too.

Joe Coe  03:34

Thank you for listening to this episode of Talking Head Pain of the podcast that confronts head pain head on. If you have any questions, thoughts, or suggestions for us, you can send us an email at [email protected]. If you enjoyed this episode, please give it an honest five star rating. Write a positive review and spread the word by sharing it with your friends and family. It’ll help more people like you find us. I’m Joe Coe and I will see you next time.

Narrator  04:02

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.

Joe Coe  00:10

Hello, and welcome to Talking Head Pain, a podcast that confronts head pain head on. I’m here live at the American Headache Society’s Scientific Meeting. This is Joe Coe, and I’m here with a very special guest. Can you state your name and affiliation?

Alicia Duyvejonck  00:25

Yeah, hi. I’m Alicia Duyvejonck. I’m a nurse practitioner in Davenport, Iowa, and I run Genesis Headache Clinic.

Joe Coe  00:32

So, we’re part of a really cool poster here, a research poster, that we worked on and you were able to present. Can you share with our audience what the research poster was and why it matters to them?

Alicia Duyvejonck  00:43

Yeah, this was a poster called person centric communications in migraine. This is a Delphi like consensus on best practices, recommendations for people with migraine and healthcare professionals.

Joe Coe  00:54

And what did we learn from this?

Alicia Duyvejonck  00:56

Well, we were able to come together as a group: there were headache neurologists, there were a couple of headache nurse practitioners, there was a headache psychologist as well as persons representing the advocacy community in migraine. And we were able to come together and come up with a framework of recommendations for improving migraine communication, with recommendations specific to both providers and patients, including topics of understanding and awareness of migraine, practicing person centric communication, and individualizing treatment.

Joe Coe  01:25

So, being part of this, what was interesting to me was how we use this Delphi model to build consensus and get different stakeholders. So, as a patient, myself, and a patient organization, and as a provider, how did we align and come up with best practices that we’re proposing for patients and providers?

Alicia Duyvejonck  01:47

I kind of explain the Delphi processes like it’s formal brainstorming. You know, we all come together and we just kind of talk about what’s important in communicating migraine – how do we do that effectively, migraine patients on their side? What’s their responsibility in the communication? And really just brainstorming literally just writing it all out on a huge piece of paper. And then altering or more specifically looking at, okay, what do all of these stakeholders have in common and feel as important because it’s very important not only to identify what should providers be doing, or what do providers think will be important in communicating migraine, but also the patient and advocacy side or the psychology side. So, I think it was really important in this project that we had representation from all those stakeholders.

Joe Coe  02:36

And what was the big takeaway?

Alicia Duyvejonck  02:37

The big takeaway was that as providers and as patients, we need to be very open in our communications, we need to do that to not only build a therapeutic relationship, decrease stigma in migraine, but also identify what best the treatments would be for specific patient type. You, as a migraine patient, and your needs are very different than my needs as a migraine patient. And so the communication is just really, really important and a disease state that’s so heterogeneous.

Joe Coe  03:06

Totally agree. And it’s just another example of how we engage in shared decision making and it was really cool to be a part of. Thank you so much for your insights and for presenting the poster.

Alicia Duyvejonck  03:17

Aboslutely! Thank you for the interview, and it was great working with you on the project.

Joe Coe  03:22

Thank you for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you have any questions, thoughts, or suggestions for us, you can send us an email at [email protected]. If you enjoyed this episode, please give it an honest five star rating. Write a positive review and spread the word by sharing it with your friends and family. It’ll help more people like you find us. I’m Joe Coe and I will see you next time.

Narrator  03:50

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  00:10

Hello, and welcome to Talking Head Pain, a podcast that confronts head pain head on. I’m here live at the American Headache Society’s Scientific Meeting. I’m Joe Coe, and I’m here with a very special guest. Can you state your name and affiliation?

Dr. Mario Peres  00:25

Mario Peres from Sao Paulo, Brazil, President Elect of the International Headache Society.

Joe Coe  00:30

Thank you so much, Dr. Peres. From your perspective, what do you feel our patient community should know, that’s exciting coming from this conference?

Dr. Mario Peres  00:39

Well, there are several topics and important messages, but I want to highlight one that we had this morning about artificial intelligence. I think it’s affecting all of us in every system or specialty, but it’s really growing fast.

Dr. Mario Peres  00:56

One of the lessons is that we need to validate whatever is coming from the programs or the chats, we need validation in the real world. This is, I think, the most challenging aspect of artificial intelligence now. If you teach the robots and program in the wrong direction, that’s what we were getting back. So, it’s really important to calibrate and to field test what is coming from these very exciting tools.

Joe Coe  01:28

And what do you think would be one of the applications for AI and migraine?

Dr. Mario Peres  01:32

Well, I think the first challenge is diagnosis. So, I think we’re soon gonna get some sort of diagnostic tool where you can tell your history, tell your symptoms freely, and the tool will probably give back some sort of questions that you have to answer again. And then in the end, we’re going to get layers of diagnosis, like the basic migraine, or I would say, even the ID migraine type of ideal. The ID migraine is a very nice tool, where if you get three aspects, like if your headache is somewhat debilitating, if you get nausea, and if you get photophobia, then your chances of getting migraine is almost 90%.

Dr. Mario Peres  02:21

So, the accuracy of this tool is actually higher than the electrocardiogram for myocardial infarction. So, it’s really easy, simple, and with only three questions, you can get a very high level of certainty of migraine diagnosis. This is achievable, and of course, it has to be validated when it regards to artificial intelligence.

Dr. Mario Peres  02:44

Like we all always talk about how important is physical exercise, how important is diet, how important is mental health, but “what should I do?” I mean, what is the minimum amount? And what do we have to achieve in terms of the minimum of what is required for an improvement of the condition? So, those things I think, hopefully, we’re gonna get soon in the next future.

Dr. Mario Peres  02:44

But then, there are other aspects that are very important to migrant care, like sleep schedules, and sleep disorders, sleep symptoms, psychiatric comorbidities, symptoms related to anxiety, to mood disorders, irritability, even ADHD, that in the future, I think we could get a better screening of those disorders. So, the sufferer can get their own assessment and bring to their physician or even I think in the future, we’re going to develop tools where you get a symptom, or you get some sort of diagnosis, and you get a list of things that you can do by yourself. And a guide for achieving those results.

Joe Coe  03:53

Well, thank you so much for giving this update. We are really excited about the promise that technology and AI holds for patients to accelerate diagnosis, as you said, and also help with some of these other challenges like how do we get on a good sleep schedule and engage in good sleep hygiene or what is good physical activity for me, so we’re looking forward to more of that to come and really appreciate your time and effort here at the conference.

Dr. Mario Peres  04:17

Thank you very much for the opportunity. And let’s build together this future because we need the input from everybody who is suffering from debilitating headaches.

Joe Coe  04:26

Thank you.

Joe Coe  04:27

Thank you for listening to this episode of Talking Head Pain of the podcast that confronts head pain head on. If you have any questions or thoughts or suggestions for us, you can send us an email at [email protected]. If you enjoy this episode, please give it an honest five star rating. Write a positive review and spread the word by sharing it with your friends and family. It’ll help more people like you find us. I’m Joe Coe and I will see you next time.

Narrator  04:55

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  00:10

Hello, and welcome to Talking Head Pain, a podcast that confronts head pain head on. I’m here live at the American Headache Society’s Scientific Meeting. I’m here with two very special guests. Could you please let our audience know who you are.

Dr. Nada Hindiyeh  00:25

Nada Hindiyeh, I’m the director of Headache Neurology at Metrodora Institute and the Chief Medical Officer at Haven Headache and Migraine Center.

Dr. Lauren Natbony  00:33

Dr. Lauren Natbony. I am the founder and CEO of integrative headache medicine of New York, which is a Headache Clinic in New York City.

Joe Coe  00:40

So, we’re gonna learn about autonomic disorders and some exciting information and programs that are coming out of it. Who would like to start?

Dr. Lauren Natbony  00:47

I’ll start first. So, autonomic disorders encompasses a broad spectrum. But basically, when we’re talking about in the context of migraine it’s POTS: Postural Orthostatic Tachycardia Syndrome, which can also be related to Ehlers Danlos Syndrome, which is hypermobility, and connective tissue disorder, as well as mast cell activation syndrome. And we’re really looking at the comorbidity of these disease states together and how we can help this population.

Joe Coe  01:14

And can you share the poster that is being presented on this?

Dr. Nada Hindiyeh  01:17

We actually gave a talk yesterday.

Joe Coe  01:19

Oh a talk?

Dr. Nada Hindiyeh  01:20

Yeah, so we gave a 30 minute talk that really can summarize these connections between these various disease states. So, between POTS and hypermobility and mast cell disorders, because what we’re seeing is there’s such a huge interplay in any particular patient between all of these, and you really have to treat the patient as a whole, you can’t just take these diseases in isolation.

Joe Coe  01:43

That’s very, very important. And I know something our community acutely is aware of.

Dr. Lauren Natbony  01:48

And we also have been seeing that with POTS, which it’s very frequent that people just treat POTS as one thing, whereas POTS, it’s a syndrome, and there are different subtypes. So, what we’ve been looking at is, is it important to differentiate based on the subtype for which there is neuropathic, hyper, adrenergic, and hypovolemic? Yes, medical terms, but they all have different causes. And the treatments are actually different. So, we’re seeing if you actually subtype the patient, and treat them according to subtype, the outcomes and our experience have been a lot better.

Joe Coe  02:14

Very, very interesting. And what is the American Headache Society doing to address these issues?

Dr. Nada Hindiyeh  02:20

Oh, so we can actually talk about what me and Lauren have started. And we started a special interest section specifically for autonomic disorders. So, it took us about a year to get this started. And we’re going to have our first meeting tomorrow at noon for anybody that American Headache Society, who’s interested in joining, and our goal there is to first raise awareness. We also want to do projects and really spread the word.

Joe Coe  02:44

Amazing! And what do you hope will come out of this special interest group?

Dr. Lauren Natbony  02:47

Firstly, I want the patients who are dealing with these disease states to feel heard, and to feel like they have a voice within the American headache society. So, I just want awareness and recognition would be the first step but then actually writing policies and guidelines and having real standardized criteria. So, that way, when these patients are going to doctors, who aren’t us, and aren’t as familiar, actually are able to diagnose and help them because it must be so lonely feeling of being lost when doctors you go and they’re like, “I don’t know, I don’t know what to do.”

Joe Coe  03:15

That’s so important and really appreciate all the work that you both are doing to advance care to ensure that some of these tertiary or secondary or primary disorders are being taken seriously with headache and migraine patients. So, thank you so much for your time.

Dr. Nada Hindiyeh  03:29

Thank you.

Dr. Lauren Natbony  03:30

Thank you.

Joe Coe  03:32

Thank you for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you have any questions, thoughts, or suggestions for us, you can send us an email at [email protected]. If you enjoyed this episode, please give it an honest five star rating. Write a positive review and spread the word by sharing it with your friends and family. It’ll help more people like you find us. I’m Joe Coe and I will see you next time.

Narrator  03:59

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.

Katrina  00:10

I’ve seen lots of different alternative care practitioners. Nobody called it out about migraine. Nobody. So I finally got a neurologist. We had a telehealth appointment. And she showed up and she was like, the first thing that I just want to say to you is how did you get to be 45 And nobody said this to you.

Sarah Shaw  00:29

Welcome to this episode of talking head pain, the podcast that confronts head pain head on. I’m your host, Sarah Shaw, Associate Director of Diversity, Equity and Inclusion and community outreach at the Global Healthy Living Foundation. I have been living with chronic migraine for almost 10 years, and I’m very open about navigating life with my chronic disease journey, as well as my experience living with anxiety. This podcast will be a window into other patients lives as they navigate their own journeys living with chronic pain, migraine, and mental health. Today, we’re joined by Katrina. A migraine patient that we’re really excited to have on the podcast.

Sarah Shaw  01:11

Hi, Katrina, how are you doing today?

Katrina  01:13

I’m hanging in there. How are you?

Sarah Shaw  01:15

You know, hanging in there is about the type of feel that I think we’re going for today. Just happy to have you on the podcast.

Katrina  01:22

Thank you for having me.

Sarah Shaw  01:23

Yeah, no problem. So let’s jump into it. If you could have one word to kind of describe your migraine attacks. What would it be?

Katrina  01:31

Oh my gosh, awful.

Sarah Shaw  01:34

Yeah, we’re laughing but I’m laughing in solidarity and pain as I think anyone who deals with head pain or any sort of headache disorder migraine cluster awful is a pretty good word. I think this leads me into my next question. There’s a really big misconception out there about migraine being simply just a bad headache, which obviously being from the migraine community, we all know that is a lot more complicated than that. Thinking about that. Can you walk me through one of your worst migraine attacks? What does that like to help listeners see?

Katrina  02:05

Yeah, I super appreciate this question. Because I think for a long time, I was one of those people that didn’t understand that potentially, I had migraine. So it often starts for me with yawning, lots of yawning. And that’s a clue for me now that something’s coming. I also start to get like, the fancy name is allodynia. But like, your skin just hurts. So if I noticed those two things happening, I’m like, Okay, let’s get ready. And then if I don’t, or can’t do anything to prevent it, at that moment, it will progress into a headache, just what has felt like and a headache for all my life. And then it will progress into different types of pain that are kind of hard to explain from the outside. But I can just tell the difference between like a tension headache and a migraine, right? Often it’s behind my right eye, or like right above my right eye, that’s the spot.

Katrina  02:16

The ticket unfortunately.

Katrina  03:02

That’s the ticket. And then if it’s going to be like top level terrible attack, I will start to get horrible nausea, I will get really sensitive to light and sound, it’ll be hard to just do things, it’ll be like where I just want to go lay down in a dark room until it can pass. And a lot of the time, it will be that I just need to sleep it off. So a lot of the time, if I’m going to have an attack, it’ll last for most of the day until I go to sleep, and then usually sleeping will help. That’s how I operated for a lot of my life until I finally got a neurologist. And then now I have a preventative and I have an acute medication that I can take to help it not progress to those levels. And I don’t know about you, but I play that game. Oh, is this gonna be a migraine attack or not? Do I need to take my medicine or not? I don’t know, you know, you only get 10 at a time of the one that I get. And so yeah, I play that game with myself a lot. Thanks

Sarah Shaw  03:58

Thanks for breaking that down for us. I know that from talking with you back and forth you had a sort of unconventional way of getting diagnosed with migraine. I think you mentioned that started with you getting diagnosed with endometriosis and then realizing that you could advocate on multiple levels. Can you share a little bit with our listeners about what that journey was like for you starting from multiple primary care physicians over the years and not being misdiagnosed or not diagnosed at all?

Katrina  04:25

Yeah, so I have multiple conditions that I think what I know were missed by primary care doctors for quite a while. So the first one that kind of reared its head was endometriosis. And I was dealing with that since I was young in my early 20s. And with that, it was just that the gynecologist would say oh yeah, this is just a bad period, which it’s like the same thing that migraine patients hear about. It’s just a bad headache. So that took 10 years for diagnosis. And then I have seen so many doctors I’ve seen In naturopaths, I’ve seen just typical allopathic doctors. I’ve seen lots of different alternative care practitioners. Nobody called it out about migraine, nobody. And as I started to become more of an endometriosis advocate and just be in the healthcare space more, and I started to follow a bunch of patient advocates on different socials, I learned so many things. And I realized the list of symptoms. I was like, This really sounds like migraine. Let me figure this out. Also, my mom struggled with it for a long time. So I it was always in the back of my mind that this could be something that would come my way. So I finally got a neurologist in April 2022. And she was incredulous. We had a telehealth appointment. And she showed up and she was like, the first thing that I just want to say to you is how did you get to be 45 and nobody said this to you? Oh, my gosh, I had to fill out a massive intake. It was like pages, pages pages. She was like, I don’t know how anyone missed this. So let me just say right off the bat, you have migraine. Wow. And we’re gonna get you on a treatment plan. How did that feel for you? Well, it wasn’t the first time that I kind of knew that something was up and I suspected what it was. And then it was turned out to be that I was right. So I guess validating in some ways, infuriating and other ways that all of these doctors before missed it. Yeah. But knowing that there was going to be some help. Because when I saw that doctor, I was up to 15 or so days a month. And I didn’t even really realize that that was pushing me toward chronic migraine, like the line was pretty close there. And that potentially it could have gotten a lot worse had I not gotten that help. So that was at a time when I moved from Vermont to Colorado. So that was the only time I could see that neurologist, and I had to find a new neurologist to kind of continue my care. But she helped me both with some kind of daily things that I can do like drinking electrolytes, paying attention to the signs and all that stuff. And I learned a lot more about what my triggers are also, after that diagnosis. Now I’m on a preventative, and I’m on to like an acute triptan if I notice something happening, so there are ways that I’ve gotten my life back because the attacks are not so bad, because I can manage them better now, and I’m down to like the most is like three in a month. So it’s a lot different.

Sarah Shaw  07:26

That’s huge. I can relate to a lot of with what you’re saying in terms of not as severe as you in terms of 45. And the finally someone is validating your experience of what you’ve been living with where I’m sure part of those thoughts where it must be all in my head because none of these doctors are catching it. And to be going through so many and to be in so much pain, but not have any relief from it must have been incredibly infuriating and painful and frustrating. And you have this aha moment with this doctor who took the time to diagnose you, but also help you feel better and help you get to being better. And I know we also call that on terms of working with your doctor and shared decision making and having conversations about what will work and you mentioned that you learned a lot about your triggers too which obviously we can’t avoid all triggers in life. But there are certain things that we can tend to stay away from if we know that it’s something that’s going to give us a big bad angry migraine attack. You mentioned that you kind of fell into endometriosis advocacy. And I’ve been living with endo for probably about since I was I don’t know 1415 right around when my cycle first started. And it’s one of those conditions that is also like you said severely undiagnosed. And I’m just curious what you’ve learned from the endo community that you’ve taken into your migraine advocacy.

Katrina  08:53

I mean, really, it was the endo advocacy that led to me advocating in all other areas. I’ll try to make the story as short as I can because it’s kind of epic. But basically in my late 20s is when I was diagnosed. I was having a pain that I ignored for like a year or more like it just kept getting worse and I was so scared it was cancer that I was like, I can’t deal I don’t want to know that’s a real fear. I was also scared of surgery. I had never had a surgery so I was like I can’t have surgery. I can’t have cancer just ignore it. Maybe it’ll go away. Well, it did not go away and it got so bad that I couldn’t even really buckle my seatbelt without it hurting. Like that’s where I was and I was just like dealing. oh my gosh. Well I finally went to the gynecologist and they found a giant cyst on my ovary and the doctor completely scared me and was like we have to operate now like this needs to go. I had never heard of the word endometriosis before that. I didn’t know about ovarian cysts, nothing. Anyway, I had an ablation that time because I knew nothing right?This was a long time ago. Sure enough, it was an endometrioma which if anyone knows endometriomas can be very, very persistent. It’s like a blood filled cyst that grows on your ovary and I just am a champion at growing them. Within three months, it came back the same pain. And I was like, no, no, this is not happening. I went to a different gynecologist because I didn’t like that gynecologist, the exact same thing happened. She was like, let’s get you in ablation. And then she wanted to put me on the pill. But historically, the pill has been a disaster for me, I do not tolerate it. So I tried to go back on the pill, and I lasted three days, but I have heart issues that happen when I’m on the pill. So I stopped at 10 years of relative, okay-ness, and I guess maybe just back to like baseline pain that you can have with Endo, when you have your cycle. And then things started to get way worse again. And in 2020, I had to have surgery again. But this time, I had done my research and I had gone looking for information. And I found out about Nancy’s note on Facebook. And I found out about other endo advocates and just learned a lot. And I decided to look in Vermont to see if there was someone who could do excision. Vermont can be a tricky place for health care, because it’s just smaller. And there’s not as many like high level doctors there. But I was lucky enough to find a very compassionate, very good doctor in Vermont who listened to all my concerns. I had been diagnosed earlier that year with mast cell activation syndrome. So I was not sure how that would affect surgery. And she was very good about helping me through that. And so I had my first excision. And I did well for about six months. And then I started to lose my mobility. And I was not able to walk further than like 1000 feet without needing to stop. And I knew something was like super wrong. So then again, that was a moment where I needed to advocate for myself. And I knew something could be potentially wrong involving endo that was causing my mobility. I went to a foot and ankle doctor, I got X rays on my feet. I had an MRI, they found nothing. And that’s when I knew that it was probably related to Endo. So I had read about sciatic Endo. And I thought, you know, this sounds like maybe what it is. So I went back to my surgeon and I said, I think this is what I have. And she said I don’t know anything about that. But I know a doctor in Boston, and I had a consult with him. And he said, Yeah, this does sound like it could be nerve involvement. So I traveled from Vermont to Boston in 2021. And I’m somebody who’s still shielding right now from the pandemic. So to be going and being in hospitals in 2020. And 2021 was like terrifying. Yeah, I’m sure. So that just added to the whole thing. It turned out that I was right, there was a node of endo near my sacral nerve, wow, that was getting the doctor said dangerously close to where he was able to exercise it. And he didn’t have to, like touch my nerve. But he was like, if this had grown and gotten worse, then I might have very well like lost my ability to walk because it would have been too painful. So just think about if I hadn’t had the privilege, this is a big piece for me if I hadn’t had the privilege of the education that I have and the background that I have to be able to do that research on my own. I may never have even known to ask. And if I hadn’t already practiced advocating for myself, would I have gotten to a place where I could have done that? I don’t know. So I feel extremely lucky. And since then, I’m going to knock some wood. Things have been okay. Well, part of it is that now I have no ovaries, because they just kept growing endometriomas and I was like looking at a future of like, every couple years having surgery that’s just not sustainable in any way. So I made the choice, which was difficult because there’s complications that come with it to be in surgical menopause. And here I am. I think it was a good decision because I don’t struggle with the same kind of level of things with endo anymore. Like I don’t have a cycle anymore, and was going through all of that that really has led me to now where I don’t just take one answer. If a doctor comes back to me with a particular answer, and I feel like there’s gotta be more to it. I’ll either like say something then or I’ll go back and do more research right and try to find a doctor that will work with me where I am. Although I will say right now I’m having a bit of like advocacy fatigue, if that’s even if a phrase but like, right now with masking like gone in healthcare, I have just not felt like I have the spoons to advocate for myself to go to some doctor’s appointments that I need, because I’m just kind of burned out burned out on

Sarah Shaw  14:41

1. Yeah, I think a lot of what you’re saying is pretty relatable in terms of number one, advocating for yourself and having it be more of a dialogue between your doctor and yourself about what you found in research. What they suggest might be a better option for you. You did not settle for or I can’t even say subpar care, but no care, you didn’t settle for no care in the very beginning. And you’re like, This is not how I want to live my life and I deserve to feel relief and to feel better, and you never stopped looking for answers. And I think that just goes to show the testament of advocacy and seeing how you took endo and then how you advocated for yourself in migraine land. And yeah, that’s not an easy feat, both of these chronic illnesses are extremely invisible, you can’t physically see I mean, sure, we may be crouched over laying on a heating pad and an ice pack on your head, those things are kind of are visible, but you can’t see the physical pain that is like happening and crumbling us on the inside. And the only way to deal with that is to get treatment and to get care and to be able to get back to a quote unquote normal part of life, or at least just where it’s managed. And I’m gonna I’m knocking on wood right now, for you, Katrina. because I am the same way I feel like I have to knock on wood, I’m like to where you are at a place where it is doing better it is you’re seeing bits and pieces of your past kind of come back and be like, okay, yeah, this is what life was kind of like where I wasn’t in pain constantly. Okay, like, that’s what it feels like to be able to read an email or have a conversation or have a thought without being interrupted by constant pain. I feel like we don’t talk enough about the ways we have pushed through and acted like, we are fine when we are not. And I think that’s the biggest cos -player for me is everyone with a chronic illness? I feel like we’re all cosplaying as well. We’re not, we’re not okay, we’re unwell. And I just appreciate all the advocacy that you did for yourself. And you advocating is not only helping yourself, it’s helping the community just from what you have talked about in terms of what you learned from the endometriosis community how to advocate that was having a positive effect on you. And I know that if someone were to maybe hop into your DMS or ask you about their how to help or advocate, you’re able to share this knowledge like with them in sharing your story with the podcast. And I feel like it’s like an all a like a circle of life, you know, in terms of coming around. And I do want to just make a note about advocacy, burnout, advocacy, burnout is real. And I think we have to remember to care for ourselves. And we have to remember to rest and that sometimes it’s okay to sit out until we get our battery recharged. Again, I’m a big advocate of talking about mental health. I live with anxiety and just there have been times where I’m like, I know I need to go to the doctor right now. But I need to catch my breath first. And then you know, next month I’ll do it. So I know there’s an urgency to like you said there was something wrong with your body and you put it off and put it off. And it’s anxiety inducing because you’re like, I feel like something’s wrong, but I can’t handle with there being something wrong with me. So let me just like try and act like it’s normal. I’ve been there I’ve done that I pushed through and ovarian cyst rupturing when I was at work, and I almost passed it in the bathroom. And then I walked out and my told my boss, I was like, Yeah, I’m just not feeling well, in that moment. I was like, Why did I say that? Like, why didn’t I say Hey, I am really not well, like, I think something really bad happened oh my appendix just burst. Obviously, that’s not what happened. But an ovarian cyst is very painful. And I just feel like we do these things to survive. I guess it’s a survival technique. Because you don’t be on the job. You don’t want to be seen as weak or whatever. But in those moments of me doing that you putting, you know, being like, I can’t handle it right now, I totally relate and can agree to that. I hope we can live in a society where things will change in seeking better health is a priority, not just for us but as a society, like we should be putting our health first we shouldn’t feel shame about having to go to the doctor or get a diagnosis, we should be accepted and be on a path to better treatment. And I think that’s yeah, that’s going to change the more we all advocate and the more that society learns, like what it really is like to be a person that is chronically ill. Yeah, I appreciate Katrina, you sharing your story coming on the podcast. I’m hoping to keep seeing you fight the good fight and take breaks when when you definitely need to recharge that battery.

Katrina  19:11

Yeah, I’m in a moment right now I have so much medical admin that I keep pushing to next week and the next week, and I think it’s actually helping to have been on today for you to say that to be like, You know what, it’s okay. It will get done when it gets done. And also, I’ll just say, I’m in an OK moment right now with my health, like, I’m not great, but I’m also not where I was couple of years ago dealing with both the migraine pain and the endo pain at the same time and just continue to function. Somehow. I don’t really know anymore how I did it. But yeah, just like you’re saying, I definitely have been in those moments of pushing through. I have had a couple of ovarian cyst ruptures in my life. And that’s, I think one of the most painful things I’ve ever experienced. And I did a similar thing to you. I was at a volunteer gig and I stayed for a couple of hours after I wasn’t feeling well. I went home, and it just continued to get so much worse that I knew that I had to go to the ER. But it’s fascinating that the way that our society is is that we’re all just trained to push through and not not take up space or not worry anybody or not to like wait until it’s so so bad to do something about I know it’s sad for anyone listening, I’ll just say it is okay. And if that ever happens to you, where you just have pain like that, just put yourself first is the thing to do. Absolutely.

Sarah Shaw  20:29

Katrina. Thank you. For those you know, really powerful like words of advice of please take care of you please prioritize yourself in whatever way you can. I know that it’s easy for me to sit here and say like, go to the doctor and do all these things. Like sometimes that is there are leaps and bounds people have to do to get there. But I definitely appreciate when you can do those things. Thank you so much for coming on the podcast today, cucina. It’s been a pleasure. Yeah,

Katrina  20:54

Thank you so much for having me.

Sarah Shaw  20:56

Thank you for listening to this episode of talking head pain, the podcast that confronts head pain head on. If you have any questions, thoughts or suggestions for us, you can send us an email at [email protected] If you liked this episode, please give it an honest five star rating write a positive review and spread the word by sharing with your friends and family. It’ll help more people like you find us. I’m Sarah Shaw and I will see you next time.

Narrator  21:24

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.

Nicole  00:10

I’ve noticed it’s easier for me to advocate with other people even advocate with Headache on the Hill than it is sometimes with my own family and friends. So first, I want to acknowledge how hard it really can be to advocate for yourself around your loved ones.

Sarah Shaw  00:26

Welcome to this episode of Talking Head Pain, the podcast that confronts head pain head on. I’m your host, Sarah Shaw, Associate Director of Diversity, Equity and Inclusion and community outreach at the Global Healthy Living Foundation. I have been living with chronic migraine for almost 10 years, and I’m very open about navigating life with my chronic disease journey as well as my experience living with anxiety. This podcast will be a window into other patients lives as they navigate their own journeys living with chronic pain, migraine, and mental health. And today we’re joined by Nicole, a nursing student who also happens to live with migraine. Hi, Nicole, welcome to the podcast.

Nicole  01:08

Hi, Sarah, thank you so much for having me.

Sarah Shaw  01:12

Nicole, I like to start off each episode by having our guests walk us through what your worst migraine attack was. Can you help guide us through that?

Nicole  01:20

Of course, my worst migraine attack was in September 2016. I was in an accident and I had sustained a concussion. It was the start of my four year long migraine attack. It was the first time I had so many symptoms with a migraine attack and I didn’t know what to do or how to manage that. I had nausea, vomiting, vertigo, dizziness, lightheadedness, my head was throbbing pulsating aching, it felt like my head was going to explode. And nothing I tried was working, my neck hurt, my whole body really hurt. And that was really, really scary.

Sarah Shaw  01:59

I was just about to say that sounds very, very scary, especially when you don’t know what’s going on with your body or you don’t have the words to explain you’re going through this because of XY and Z. Do you mind sharing some ways that you’ve advocated that might be helpful for our listeners?

Nicole  02:17

Of course. So it wasn’t an overnight or quick thing. It was a multi year long process. But some of the things that really helped were educating myself on what migraine is. So finding different nonprofit organizations and reading the messaging and education they had to share. So I learned that having photophobia or light sensitivity was a symptom of migraine. It wasn’t something that was abnormal. And there was something wrong with my eyes, for example, or I learned that a lot more of my symptoms were associated with migraine, I learned the importance of seeing a headache specialist and I found a headache specialist through various lists from nonprofit organizations. I started attending a support group and I found others who were living with similar situations to me. I mean, everyone’s situation with migraine is so unique, but we all shared migraine in common. And it was the first time that I met others living with migraine. And that was really important. I initially felt so alone in my journey, none of my friends understood. And unfortunately, I lost a lot of friends in the process because people didn’t understand why aren’t you getting better? Oh, you’re still having a headache? Why don’t you just do this or that that works for me. And unfortunately, that didn’t work for me. My story wasn’t like theirs and they didn’t understand that. I learned from various organizations how to advocate for myself. I learned it’s okay to bring questions written down to the doctor. I learned it’s okay to take note at the doctor. I learned it’s okay to use my phone at the doctors or starting off saying I’m going to use my phone to take notes and I have notes written down in advance. And I’m not going on social media or trying to be rude, but this is how I keep track of my records and I want to make sure I don’t forget anything. So I wanted to start off by letting them know I wasn’t using my phone for other purposes or trying to be disrespectful, but I was using it to advocate for myself. I had questions written down, I had notes. I had all my symptoms. I also started to bring kind of like a summarized health history with me. So I typed out my name, personal information, any allergies I had my diagnoses, medications I was on and who prescribed them and why. I also typed out medications that I had previously tried and why I stopped them,  what dose I was on, because that’s a lot of information to remember.

Sarah Shaw  04:45

Sure that so scroll along in our heads of everything. It’s really, really important what you did and what you’re doing to kind of stitch together the story of your health. Right? Totally.

Nicole  04:55

Totally, yeah, it’s a lot to remember and the medication names are a lot and I don’t know if you’ve experienced this, but when they ask what medications you’re on, they’re like, Well, so what is this for? How do you spell that, and sometimes I’m okay spelling it and educating. But other times, I’m not, I’m physically not able to do that I’m having a bad migraine attack, I’m having a flare. And I’d rather be able to hand this piece of paper to the provider, or the nurse or whoever is taking that information and say, Here’s my medical information, you can update. And then it just takes a level of stress off of me.

Sarah Shaw  05:29

I appreciate you sharing all of these tips from support groups to you know, learning how to advocate for yourself, and also from assistance from nonprofit organizations like us. In fact, at GHLF, we help patients advocate on behalf of their care. And also when they have to go to the doctor, like you said prepping and notes and being prepared in that way. I remember the first maybe first few years or so when I would go to the doctor and I would have the appointment. And then I would leave and I would be like, Oh my gosh, I forgot to say these three things that are really important to my care. So you mentioning writing down your notes on your phone, and then having them in front of you at the doctor’s office is a page that I took out of your book in the last few years. That way, I don’t forget anything, you know, I have that as a backup resource to make sure I cover everything as thoroughly as possible and don’t have those oh my gosh, moments of something that I forgot. I think when you know you’re like regular people sick like you have a cold or something people say you know, oh, just go to the doctor you’ll get taken care of. But what’s different is when you have a chronic illness or disability when you’re at the doctor’s office so frequently, having that right up as that backup is just really helpful to have as your you know, second brain when I go to the doctor, you know, people who live with brain fog symptoms, having that backup brain is a really good way to help you advocate, I’m so glad that you had that experience of knowing what works for you and what doesn’t.

Nicole  07:00

It was definitely a lot of trial and error. And I was fortunate that I found a headache specialist and provider I connected with but a lot of people just given the shortage of headache specialist people are fortunately have to stick with one provider or unfortunately, people have to stay with a provider who they might not connect with as well. And you see that provider only a handful of times per year. So like bringing these notes is really helpful, especially when providers aren’t as accessible either on phone or through mychart or whatever online portal, I have like a little section for each doctor in my notes app. And every time I think of something I add it.

Sarah Shaw  07:35

Oh that’s smart. That’s really smart how you have it split up that way. You know being migraine patients brain fog is one of those symptoms. So having our backup brain our phones, our notes is helpful and can make these appointments go smoother and are better in terms of getting the care that you deserve. And I wanted to note about your comment about the lack of headache specialists in the country. And we note that that’s a huge issue for people that don’t have access to or close by to a headache specialist. And so sometimes people end up seeing a neurologist or a primary care doctor even to get the care and sometimes things fall short. I want to go back to something that you said about friends and unfortunately like losing friends along the way to your migraine attacks. And I think a big component of there being like this misunderstanding of how serious you know living with chronic migraine or just migraine attacks in general are there is this huge stigma attached to it. And so when we don’t have loved ones or family or friends, I understand that that can cause a rift and I know that it’s difficult I fortunately have gone through something very similar. And in terms of stigma, though, you advocate a lot in the migraine community, what are some tips you have for breaking through that stigma that is you know, attributed to migraine being quote unquote, just a bad headache.

Nicole  08:57

Thank you for bringing that up. And I think it’s really interesting because I’ve noticed it’s easier for me to advocate with other people and even advocate with Headache on the Hill than it is sometimes with my own family and friends. And so first I want to acknowledge how hard it really can be to advocate for yourself around your loved ones. I think one place to start would be sharing your story because like you mentioned people don’t realize how disabling and impactful migraine can be and a lot of my friends and family did not realize that migraine impacts my entire body they didn’t realize it’s a full body disease and by sharing the symptoms I experience that gave them an entirely different perspective.

Sarah Shaw  09:42

What are some examples of you sharing that with your friends? Like is it just conversations that you have with them over the phone is it like you know, linking them to your Instagram advocacy account? Like I know for me like a lot of it has been like me being quiet and being like, Oh yeah, by the way. This is what I do and then being like, oh my gosh, I didn’t realize it was that serious? Have you found that that’s similar for you?

Nicole  10:06

Oh, totally, I feel like that’s a very similar parallel to me. Oftentimes, when a friend will share or they’ve experienced a migraine attack, that’s when I will sometimes open up and share a bit more, because I feel like we have that shared experience. And then I feel like they already understand. Otherwise, I might be a little bit more cautious in how I bring up that I live with migraine and other chronic illnesses. And it’s partially to protect myself. And it’s partially because and I’m sure you understand this as well, it can be really exhausting to advocate and educate others sometimes. And I want to make sure I do it at a time when I really have the full energy and attention. And I also am always cautious when a new friendship is forming, it’s always hard to know when to introduce this. And that can be challenging. So oftentimes, if I have to cancel an event or plans, that’s when I’ll share or if they ask, Oh, sometimes people say you don’t look so great today. That’s when I’ll introduce that I live with migraine and explain a little bit more. So I’ll wait till the door feels a little bit open and then introduce more what’s going on.

Sarah Shaw  11:19

See, I understand I can relate to some of that in the very beginning until somebody like you said, like, oh, like are you okay? And I’ll say actually, and then that’s a perfect lead in into that, and also letting them know what they can do to help. For example, at a previous employer, the fluorescent lights in the offices were extremely triggering for me. And so I would work in the dark in my office and my boss notice, and they’re like, why are your lights off, and I explained, well, actually, I have this condition, the lights are very triggering. And she was like, Oh my gosh, like take out those lights, and let’s get you a warm lamp. And that was sort of like an opener into the different ways that migraine can like impact us. And then also like talking more about it with like co workers, family friends. Now I’m at a point where I do introduce myself as someone who lives with migraine, just let them know about me to begin with. But I also see the other side of what you’re saying of you know, sometimes it’s best to wait and see how things progress in terms of you don’t want that judgment to be put on you immediately. You know what I mean? Like in terms of that. And so having that spoken about later down the road sometimes makes sense in terms of your safety, in terms of work, or in terms of just in general letting people get to know you for you and outside of your chronic illnesses. So I definitely see what you’re saying Nicole

Nicole  12:45

Yeah, I definitely feel like how I present myself has been influenced by one of my former employers, actually. It’s interesting you mentioned about the fluorescent lights and how your employer reacted, because I had the exact opposite reaction. I was working in an open environment. And that makes it a little bit more challenging if I needed to work in the dark. But I had requested to take out the fluorescent lights directly above my desk. And I was declined. And it was not the right workplace for me. And I didn’t receive appropriate accommodations. And my health was it felt like it was shared with everyone there. And that was really unfortunate. And so I definitely feel like that has impacted how I present myself moving forward now, because I’m always afraid of the worst happening because the worst case did happen. But I also know that that’s not always going to happen. And I’ve had some really positive experiences afterwards. And so I’m trying to remember and put those in the front of my brain. And remember that moving forward. Yeah,

Sarah Shaw  13:45

that’s true. I think in terms of your situation, it can be scary. And it’s frustrating when people don’t find ways to help accommodate us to be the best version that we can be whether that’s at work, whether that’s at home. And I think stigma has a lot to do with that as well. I think the stigma that’s associated with migraine prevents us from getting to a better place. And I do know the migrane community, we’ve come a long way in terms of addressing you know what migraine is and educating people, employers family about it. And I think there’s a lot to way to go. Just the simple action of speaking up and sharing your story, like you mentioned goes a long way. And I want to transition us into the last question which is about you know, you’ve been on such a journey in terms of trying to get the best care and advocating and moving around to get better treatment. Taking a step back. What do you think motivated you or encouraged you to make these changes to in relation to your migrane attacks in terms of where you are today? A better path to treatment.

Nicole  14:52

I was really frustrated and upset with how suddenly my life did a basically 180 and I went from feeling really independent and living my life in my 20s, to suddenly feeling really dependent on my parents. And that was really scary, I was worried that I would be dependent on them for the long term. And while there is absolutely nothing wrong with that, with needing to have extra support and relying on family, friends, etc, I had recently graduated and I saw my friends living completely different lives than me, I realized that I could put my research background to use and see what other options were out there as I didn’t feel like at the time I was getting appropriate care from my providers. And that’s how I ended up with the providers I am with today. I also continue to spend time in therapy, which has really changed my mindset and I feel like was really essential to my success. And I still do have migraine attacks. I mentioned to you, Sarah today that we might need to reschedule because this morning was really challenging. And even right now I’m stumbling over my words and thoughts a little bit. And that’s a result of the migraine postdrome. But the preventative and abortive medications I’m on now have allowed me to get to a much better place where I have moved halfway across the country from where I originally grew up with my family who I was living with for a really long time. I now am in nursing school and doing really well. But I also manage my health full time. And I also want to point out that you can do everything right and still struggle. And that’s okay. Migraine impacts everyone differently. So the comparison game or like the pain Olympics has no purpose and some medications people respond to better than others. And that’s just unfortunate. Yeah,

Sarah Shaw  16:48

I think we’re all different in terms of where we come from, like you said, how we respond to things. But I think what is similar between all of us is just the strength, I think in terms of being someone who’s living in pain and having to go through trials to get better access to care. And you are one of those examples of never giving up, keep having to advocate, knowing to not settle for less, which is very common. And I think you are a great example to lead the way for maybe someone who isn’t diagnosed yet with migraine hears your story or sees your social media and a light bulb goes off in their head and they’re like, I should bring this up with my doctor about my care, or I can advocate for better treatment. And I think that’s the power of community and the power of advocacy. And Nicole, I just want to thank you for coming on the show today sharing your story sharing, you know, the roller coaster rides of a person living with pain, and it’s been a pleasure talking to you.

Nicole  17:46

Thank you so much, sir. I really appreciate you inviting me on the show and talking with me today.

Sarah Shaw  17:51

Thank you for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you have any questions, thoughts or suggestions for us, you can send us an email at [email protected] If you liked this episode, please give it an honest five star rating write a positive review and spread the word by sharing with your friends and family. It’ll help more people like you find us. I’m Sarah Shaw and I will see you next time.

Narrator  18:20

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

Narrator  00:00

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

Sarah Shaw  00:10

Welcome to this special episode of talking head pain, the podcast that confronts head pain head on. I’m your host, Sarah Shaw, Associate Director of Diversity, Equity and Inclusion and Community Outreach at the Global Healthy Living Foundation. I have been living with chronic migraine for almost 10 years, and I’m very open about navigating life with my chronic disease journey, as well as my experience living with anxiety. This podcast will be a window into other patients lives as they navigate their own journeys living with chronic pain, migraine and mental health. And I’m really excited for today’s special episode of Talking Head Pain. I’m joined by two of my colleagues, Kelly Gavigan, Chief Data Management and Analytics Officer and Eric Stone Manager of Learning Experience Design. Kelly and Eric, welcome to the podcast. How are you doing today?

Kelly Gavigan  01:05

Hey, Sarah. Great. Thanks for having me.

Erik Stone  01:08

Hi Sarah. Yeah, super excited to be here today. Awesome.

Sarah Shaw  01:11

I’m really excited to have you guys on and have you as special guests. And for those of you if you’re new to the podcast, we talk about all things migraine and head pain from recent migraine news and research to sharing patient stories. We do it all. But what we haven’t done yet is cue our listeners in to the important migraine work that we do. Which leads me to Eric and Kelly being on the show today. Kelly, why don’t you tell us a little bit about the Up End Migraine project that we’re working on together? Sure.

Kelly Gavigan  01:38

Thank you, Sarah. So the goal of our UpEnd migraine project is to better understand the educational needs of healthcare providers, especially in the primary and emergency care setting related to how they treat episodic migraine. And now episodic migraine is when a person has up to 15 Headache days per month, so any more than that would be considered chronic migraine. And the surveys in this project, which are phase one of the project are to help us identify where the need is in improving care of episodic migraine. So for this, we created two surveys. One is a patient survey, and one is a survey for health care providers. And we use the American headache society guidance on treating adults with migraine as the basis for the survey questions. So we wanted to basically better understand the disconnect between providers who provided care that followed the guidance versus providers who did not. And then from a patient perspective, what is their treatment and care look like when their provider follows the guidance versus not. And then the results of these surveys will then be used to develop education for healthcare providers that we’ll be pushing out in phase two of the project.

Sarah Shaw  03:03

Thanks so much Kelly, for you know, doing a deep dive into this project. I think it’s really important because I feel like the last few years a lot of focus has been on chronic migraine, which is me. I’m a chronic migraine patient I have over 15 Headache days or more a month. But what about those that live with less than or maybe someone that has one to three headache days? How are they getting treatment? Are they getting the appropriate care? And Eric, as someone who lives with episodic migraine, can you share your thoughts on why a project like this is important for the episodic migraine community? Yeah,

Erik Stone  03:37

of course, Sarah, as an episodic migraine patient myself, I definitely felt a responsibility to ask the right questions and know what the right things were to say to my doctor in order to get the treatment that I felt I deserved and needed, but the reality is that that responsibility actually falls mostly on the health care providers. And what we’re trying to capture with this survey is really where that disconnect is happening so we can improve the diagnosis and treatment journey for everyone with episodic migraine.

Sarah Shaw  04:06

Thanks for sharing your experience, Eric. And just to hone in on just the importance of why we’re focusing on healthcare providers such as healthcare practitioners, nurse practitioners, and ER is not everyone has access to a specialist such as a neurologist or a headache specialist. And so being able to equip our physicians who most likely see episodic migraine patients more is just going to help a ton and being able to get people treated for something that they may not think is a problem you I think there’s a lot of people out there living with episodic migraine that might not even know that what they have is not normal. And so if a survey like this is so important, and then the phase two of pushing up the educational resources, I know is going to make a huge impact in so many people’s lives. So I’m really excited to roll this out to the community. As we wrap up here. We actually have a way that you the listeners can help us make change for those living with migraine attacks. As Kelly mentioned, part of the up end project involves surveys and as a team, we’ve created two surveys, one for episodic migraine patients and one for healthcare and nurse practitioners. We’re going to provide the links to these surveys today on the podcast, and we’ll include them in the show notes so you can share them with your communities. You can find the show notes on Talking Head Pain.org or under episode description on Spotify, Omny, or Apple podcast, Kelly and Eric, it was so fun to have you behind the mic day and give people a peek into some of the migraine work that we’re doing. Thanks so much for coming on the show.

Kelly Gavigan  05:36

Thank you so much, Sarah, for having us.

Erik Stone  05:38

Yeah. Thank you so much, Sarah.

Sarah Shaw  05:41

Thank you for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you have any questions, thoughts or suggestions for us, you can send us an email at [email protected] If you liked this episode, please give it an honest five star rating, write a positive review and spread the word by sharing with your friends and family. It’ll help more people like you find us. I’m Sarah Shaw and I will see you next time.

Narrator  06:09

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

Narrator  00:00

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

Erica  00:10

Both of our kids have migraine, too, and so with them living with the different types of migraine they have that are different from my kind of migraine and we do it for them.

Steven  00:17

Yeah

Erica  00:17

At the end of the day,

Steven  00:18

And it makes us feel better that we’ve gone through this so that way, we kind of know what avenue they’re gonna go through, and we can help them later on in life as well.

Sarah Shaw  00:27

Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host, Sarah Shaw, Associate Director of Diversity, Equity and Inclusion and Community Outreach at the Global Healthy Living Foundation. I have been living with chronic migraine for almost 10 years, and I’m very open about navigating life with my chronic disease as well as my experience living with anxiety. I’m here at Headache on the Hill and I have been chatting with a number of peers today. And I’m here with Sophia, a first time patient advocate for Headache on the Hill. So important to step up for Sophia today. Sophia, why is Headache on the Hill so important and why is advocacy important to you?

Sophia  01:05

Yeah, I’m so excited to be at Headache on the Hill for the first time because I’m representing not only my own story, but also my mom, who can’t be here today. She basically had severe migraines all of her life to the point where she had to quit her job, and it was really heartbreaking seeing her have to choose between her work, her life, and raising me, her child. So when I started getting migraines, myself, I had a lot of internalized anger and just fears around what happened. And I started realizing once I start telling my own story, how vitalizing and how open that makes everyone else open so that instead of all of us feeling like we’re suffering in silence, that we can actually come together as a community and make the world a better place.

Sarah Shaw  01:54

You put that so perfectly about being the one to kind of break the cycle and break the silence, to let others know – not even just other people in the world, but your own family members know – that it’s okay, and we’re going to get through this together. And I think that’s really what not only just this event, but what all migrant advocacy events are about: breaking the silence, reducing the stigma and letting others know that you’re not alone. Sophia, I’m really excited to be here advocating with you today on the Hill. And just so happy that you could join us for the podcast.

Sophia  02:22

Thank you so much!

Sarah Shaw  02:23

And we’re now joined by another patient advocate to D’Sena. D’Sena, same question: why Headache on the Hill? Why is advocacy so important to you?

D’Sena  02:31

Well, advocacy is important because people need to know that our headaches are more than just a headache. It is a migraine; it is a disease and things like step therapy need work. We can’t just go through all of these migraine treatments and then expect to hopefully get the drugs that we need to treat our migraine. So that’s why I came to advocate for migraine.

Sarah Shaw  02:56

Thank you to D’Sena. That’s such an important thing, step therapy. I feel like everyone listening to the podcast, myself, we’ve all been through – a lot of us have been through – this process of trialing medications that don’t work for us. And it would just be so much easier if we had a straight shot to these newer, better medications that are catered specifically for migraine. You know, instead of having to wait months trialing a medication or for some people, even yours to get to feeling better. D’Sena I look forward to advocating together with you today. And I’ve been meeting a lot of other advocates here at Headache on the Hill. So I’m now welcoming two guests with me: patient advocate, Erica and her husband Steven. Erica has been attending Headache on the Hill for about four years now. And this year, she’s brought along her husband, Steven, which is his first Headache on the Hill in person. Erica, why is an event like Headache on the Hill important to you?

Erica  03:45

2020 was my very first Headache on the Hill. And I remember coming and it was just such an amazing experience. And today we heard someone talk about their experience with their first Headache on the Hill. I had a job in government contracting. And when I came and visited different congressmen it gave me that same sense of purpose. I loved my job working for the government, and this felt like the same thing to me. It was that service but this time I’m speaking for people who can’t speak for themselves or don’t ever have the opportunity to do so. So doing something like this is really important to me and I’m really excited to bring my husband to this week because I want him to see what that’s like, experience that for himself because he’s never been to something like this.

Sarah Shaw  04:26

Yeah, I can’t explain the feeling, Erica, of just like being in closeness to people that are like us and then having our partners like witness this as well. you know? This is the magic that’s like happening behind the scenes. I do that with my partner, Tara. She comes with me every year and just having that support system with them experiencing it is so amazing. And now I want to turn the mic over to Steven, Erica’s husband. Steven with this being your very first Headache on the Hill, I heard Erika say a little bit about it. But why is it important to you?

Steven  04:54

It’s important to me because it’s important to Erica and migraine is now part of our lives. I remember when she stopped working. She would cry and she wanted to know, you know, like, what am I going to do now what’s what’s going to happen. And I said, we’re just one day at a time, one step at a time; we’re going to try to figure this out. We’re going to, you know, try different medications, different doctors, whatever we needed to do to get her better. And then when she found that she could be an advocate, I mean, she jumped on that so fast. She’s just a real big hustler, a lover of work. And this has definitely – has been a love for her. So being able to help people and to know that she’s not alone was a big deal for her. And anything that she’s involved, I definitely want to be involved in and help her in any way that I can.

Sarah Shaw  05:42

My heart loves that. I think everyone listening loves that as well, just being able to support your loved one, and just be there for them. And you are now part of the migraine family. So it’s part of the journey and part of the experience. I want to thank the both of you for all the work that you’re doing not only here, but also on the ground and virtually behind the scenes as well. I think it’s so important that obviously does not start and finish with just one of these events. It’s a like a lifetime of work.

Erica  06:07

It really is like both of our kids have migraine too. And so with them living with the different types of migraine they have that are different from my kind of migraine, and we do it for them.

Steven  06:15

Yeah.

Erica  06:15

At the end of the day.

Steven  06:16

And it makes us feel better that we’ve gone through this so that way, we kind of know what avenue they’re gonna go through. And we can help them later on in life as well.

Sarah Shaw  06:24

That’s – to have that – it’s almost like instructions. Maybe it’s not like the exact how to do it. But at least you’re left with like crumbs and steps like leading you to the big pile of information just to be able to have that for your kids. I think it’s so important and a big part of why all of us are here doing what we do. So thank you so much for everything today and behind the scenes.

Erica  06:41

Thank you!

Steven  06:42

Thank you for having us, appreciate it very much.

Sarah Shaw  06:43

And to conclude this special episode live from Headahe on the Hill, I want to turn to my last guest. She’s a patient advocate and it’s actually Becky’s first time at Headache on the Hill. Becky, why do you advocate? Why is it important?

Becky  06:54

I have been with migraine for most of my life. And I don’t want the younger population to have to deal with what I dealt with. I want to advocate for the younger population to get the meds that they need, and to get the research and the doctors that they need. I want them to have an easier time in the future.

Sarah Shaw  07:13

That’s so important. And I feel like events like this, we are kind of laying the pavement and the roads down for the next generation to come because if we don’t do it, who will? And I know that events like these and other advocacy events that other organizations are doing not just migraine, but, you know, across different chronic disease spaces are crucial and not having to go through step therapy of trialing medications that we know aren’t specifically created to treat migraine but have other effects. Maybe that will minimize, you know, disease burden that is going on, you know, patients like you other patients that are here. And I think it’s really powerful what we’re all doing here. I want to thank you for your advocacy and giving a voice to patients that maybe usually don’t have a voice

Becky  07:50

Thank you very much.

Sarah Shaw  07:52

Thank you for listening to the special episode of Talking Head Pain, the podcast that confronts head pain head on. If you have any questions, thoughts or suggestions for us, send us an email at [email protected]. If you enjoyed this episode, please give it an honest five star rating, write a positive review, and spread the word by sharing it with your friends and family. I’m Sarah Shaw live from Headache on the Hill, and I will see you next time.

Narrator  08:16

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

Narrator  00:00

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

Nahid Shukralla  00:10

When I graduated high school and I got two scholarships, one for arts and at the same time, I got a scholarship to study medicine. And my mom said, if you go into arts right now, it will be very difficult for you to get back into medicine. And when I graduated medical school, I did my residency in pathology. So I become a pathologist. And when things became really hard for me with health problems and chronic migraine, I decided, You know what, let me go back into art.

Sarah Shaw  00:47

Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host Sarah Shaw, Senior Manager of bipoc Community Outreach at the Global Healthy Living Foundation. I have been living with chronic migraine for almost 10 years and I’m very open about navigating life with my chronic disease journey as well as my experience living with anxiety. This podcast will be a window into other patients lives as they navigate their own journeys living with chronic pain, migraine and mental health. Today, we’re joined by Nahid Shukralla, a visual artist who lives with migraine. We’re gonna dive deep into her story about how she merged her migraine with her visual art. Hi, Nahid welcome to the podcast.

Nahid Shukralla  01:29

Hey, Sarah, thank you for having me.

Nahid Shukralla  01:31

I’m really excited to dig into your story and learn a little bit more about your amazing art. But let’s first start off with walking us through if you can remember what your worst like migraine attack has been

Nahid Shukralla  01:44

So I have many of those bad migraine attacks, and I’ve been to ER several times. But one migraine attack that always sticks with me that I can’t forget is when I was pregnant with my son. So I was in my early 30s. I was about six months or five months pregnant. And I’d developed severe migraine that for three days, I couldn’t move my head left or right because of the pain. And I had to stay home from work and couldn’t even fall asleep at night because of the pain couldn’t even lie down flat. And after two days. The third night I was just sitting in the bed and holding my head straight because I couldn’t move it. And at that point, my husband he woke up from sleep and he looks at me and I just the tears were pouring down my eyes because of the pain. And when he saw that he said, Okay, we have to take you to emergency room. And at that point, so we went to emergency room, They admitted me and the doctors were really puzzled what to give me for pain medication. The regular Angelica six didn’t help me, of course, Tylenol, ibuprofen and the being pregnant. That was a limitation of whatever medication they gave me. And whatever they could give me at that time they did and nothing worked. So even in the hospital three days, again, holding my head straight, can’t move it with severe pain until somebody came with a suggestion that maybe we’ll try anti histamine medication. Some of the literature mentioned that it’s second pregnancy. And if they give it IV rapid IV that might help. And that was the third day in the hospital. And when they push that IV n is just like everything brightened in my eye. And I’m like, Oh my gosh, I could move my head left to right. Wow. Yeah. So that was something that always stayed with me other than going to the emergency room being severe pain, but that particular you know, incident always stayed with me. Yeah,

Nahid Shukralla  04:05

for sure. Listening to your experience, it made me kind of think and reflect about, like the limitations and challenges of what being pregnant like people who are pregnant have to deal with the limitations of what they can and cannot be on when you are pregnant and just about making treatment safe and effective for people going through pregnancy and how difficult that must have been for you. You know, three days of not being able to move your head from left to right. You just have to keep it straight. Oh my gosh. Yeah, that sounds really awful and painful. I’m glad that you’re no longer in that space. Again. We’re going to touch on your migraine artwork in a moment. But I would love to know what drew you to art in the first place. Like how did you get into it? Walk us through that background?

Nahid Shukralla  04:53

Oh well, I was always into art. Since I was a kid. I would always be sitting with a pen and paper and just a sketching, drawing whatever it came in my mind and coloring pencil. Even if I was watching a TV show as a kid, I would have a sketchbook in front of me and I would paint. And as I got to high school, I had art teacher, that she was really impressed with my ability to paint. And she really encouraged me in that direction. So I became really better and better at the techniques. And the thing is that when I graduated high school, and that was in Bahrain, I was born and raised in Bahrain, I got a scholarship two scholarships, actually one for arts. And it was only two people at that time in Bahrain that got that scholarship, it was me and another person. And at the same time, I got a scholarship to study medicine. And I really had a passion to study in medicine. So I was like, in between the two, okay, what should I do, I love arts, and I love to become a doctor. And it was at that time that my mom advised me, she said, if you go into arts right now, it will be very difficult for you to get back into medicine. But if you go and study medicine right now, you can always go back to art. And I’m glad that I listened to her because that’s what happened that when I graduated medical school, I did my residency in pathology. So I become a pathologist. And when things became really hard for me with health problems, and chronic migraine, my daughter was born. So I have a son and my daughter. So when my daughter was born, and I found it very hard to practice full time. And with my chronic migraine, it was really difficult. So at that time, I decided, You know what, let me go back into art. And I went back to art and I joined private classes, and I went from there. Wow,

Nahid Shukralla  07:07

your journey is really interesting. And I think it kind of goes to show the way that we pivot and navigate when we’re faced with life’s challenges of being, you know, thrown like a chronic illness like chronic migraine. I know for me, I can kind of relate and like the same fence of thinking I was going to end up in a career so I did event planning for probably close to eight years. And it was a lot of really early mornings and late night events and that wasn’t working, my migraines had become more severe, kind of like you were you’re realizing you have to pivot. Yeah, and I just love how you were able to pivot in a way that still focused on migraine. And like now’s the part that I really want to dig into is I found you through Instagram and through your Instagram account where you bring your migraine Auras to life which I think is so fascinating because I feel like migraine Aras they’re talked about a lot but there’s not a lot of visual representation. I know when I first had my first migraine aura I didn’t realize it was a migraine aura I just kind of thought everybody like had these little like for me mine were kind of like snowflakes, it would be black and then I would just see white spots everywhere and I just assumed everybody was dealing with that and it wasn’t until like three or four years in when I learned about okay that’s an aura but there’s a lot of literature on it but there’s not a lot of visuals and that’s why I really love your account where you brought that to life. Can you talk about what inspired you to take what a lot of people will explain right a migrane aura is it happens right before you get the migraine attack so it’s kind of like a warning and how you turned it into these amazing visual art pieces. You know what light bulb went off for you? Yes

Nahid Shukralla  08:53

so as I told you I got into private classes and I started doing oil painting landscape is to lie pain the also acrylic and then you know I guess I always saw these auras but as you say, like I can relate to you I didn’t recognize them as such that these are auras or something that I’m seeing until you know my migraine got worse and I started getting treatment, Botox treatment and that when I noticed that okay, just before my migraine, I am seeing like different shapes and colors. And at that time, it was mainly bluish colors. It was really beautiful. They look beautiful moving like stars or a yellowish blue and being into art and studying all these different pigments. So I could relate to those colors at the time see, and then I started focusing more and more on them. Okay, what are these? And then I realized oh my gosh, these are auras before migraine attacks, I started to capture them at the beginning, just by coloring pencil on a sketch note in writing notes about them, then I progressed to painting them in acrylic in oil. So I had a big canvas in my basement that whenever I saw aura I would start painting it, so I did few of those paintings, then eventually, I realized, you know what, this is not making sense because migraine auras are moving shapes and colors, they are not static. So where would I capture what I saw, just for to give you an example, if it is a star that I am seeing the star moves in spirals, and it changes from big size to small size. If I’m painting, I can’t capture that, because I can just draw the star either big or small, even if I represent them in different shapes. Still, I can’t capture the movement, right? So I noticed that my son at that time, he was into sketching and painting and he got me this app procreate in, he told me, mom, maybe you should try this digital painting. So I had that on my computer for a while, but I could never find the time to dedicate and sit and learn that it was until January 2020. When I broke my feet.

Nahid Shukralla  11:34

Oh my goodness, you know

Nahid Shukralla  11:35

I broke two bones in my feet. So I had to stay home because my foot was in cast. And I thought you know what to pass time literally dig into digital painting. Let me see if I can master that or not. And I did. And for two months that I was home bound, I you know, practiced on my own looked on YouTube and basically self taught myself. I started at the beginning just to learn how to do landscape. And then eventually, I started painting my auras. And yeah, I saw them. And then I started animating them. And I said, Oh my gosh, this is a perfect medium. Finally, I can relate to the world, what I see, animate them the way I see them so that you know everybody else can see what we see and relate to it to the point I became so precise as to draw and animate my auras the way I saw them, which in the visual field, which quadrant of the visual field, I saw the aura is it upper quadrant, upper left or lower? Right, so I started doing all that. Wow,

Nahid Shukralla  12:49

that’s really amazing. Like you said that you broke both of your feet, you kind of took a negative, if I may call it that and turn it into a positive where you were able to actually slow down and like take the time to pour into this like beautiful representation, a symptom of migraine that isn’t noticed as much in a visual way. Right. And you’re absolutely right, you were talking about okay, I can paint my auras. But that isn’t a full representation of what an art is because it’s moving like you said, it doesn’t stay still and how has that been received? Like I know you were creating this art and then you put it on your Instagram account, what sort of feedback have you gotten from the migraine community about being able to visualize these auras?

Nahid Shukralla  13:35

You know, it was amazing feedback. I was surprised so I started by putting these on Instagram not knowing what will be the response but then I got encouraged because some people would say to me, they comment oh my gosh, this is exactly what I see. This is my most common aura Wow. So people can relate to these auras and you know, they can relate to it they seen the similar things and being from medical background like I searched the literature there is not much about auras written so I was really encouraged. So I started then as soon as I see the auras of course when I have pain I can’t draw I can’t do anything I have to be lying in bed dark till the pain goes away. So at the beginning I was just writing notes and then later on during the postdrum I would be sitting with my iPad and as you know during postdrome you know a person with migraine feels very exhausted and tired although the pain is gone, but the physical symptoms are still there. And I would sit with my iPad for hours just trying to animate what I saw in then when I posted on an Instagram people would comment that wow we didn’t know that migraine looks like that. And then I also had other comments, people saying that my teenage daughter can relate to your auras, she can see, you know, most of your painting, she can relate to them. And that really encouraged me. And by the end of the day at postdrome, I felt, okay, you know what I am putting my auras there, the day has not been wasted. With postdrome, we are still exhausted, can’t do much. But I feel productive by painting my aura by animating it and putting it out there helping other people make them feel that they are not alone. And they can relate to my art. Absolutely.

Nahid Shukralla  15:44

And even past like this idea and notion of productivity, us even dealing or working through our postdrum is doing something and you are able to do even more than that after you know you’re experiencing a migraine attack to help the community and dare I say like for people who don’t feel seen or represented or maybe don’t know how to describe to their doctor, what they’re experiencing now there is this visual template almost for people to be like, Oh, this is like what I’m experiencing. And they have a name. And they have a visual related to it. Because as we know, like, there’s this history of us being told or thinking it’s all in our heads. And because we don’t have like proof sometimes like this is something where you can be like, No, this is exactly what my migraine aura looks like. And you’re able to open up a dialogue and provide validation, I think for people. So I’m really, really grateful that your account exists and that it’s helping the community. And it’s just this visual representation that you’re absolutely right is missing. So I hope that researchers and doctors and other people in medical fields will look into your account and take the time to dedicate to the visual representation of auras. Yeah, I know, we’re coming down to the end. And so I like to kind of sort of end the episode where we talk about like mental health and self care. I know artwork is also a form of self care for people. Can you talk to us a little bit about what is your self care routine to make sure you’re taking care of you when you’re in the midst of dealing with a chronic illness like migraine. So

Nahid Shukralla  17:26

my name is strategy, I changed everything in life to make it easier for myself and for my family to deal with migraine and take care of myself open dialogue, as you said, with my family, you know, it’s very important. My husband is very supportive. My kids are very supportive of me, they understand by looking at me that I have migraine, and they let me take my time and rest. And I’m lucky alsothat I’m surrounded by friends who understand my disability, not every outing or every plan works, it can change all of a sudden because of migraine. So I’m lucky very lucky in that way. And the days that I’m really feeling down of course and have migraine, I can’t do much. But other days if I’m you know I’m feeling up to it, I go out I go for a walk I meet with friends. I think socializing is very, very important with chronic migraine because cancelling frequent plans, it really isolates a person first of all, is spending one whole day or two days in bed because of the pain and then the prodrome and postdrome that takes a toll on a person three days where you can’t meet other people, you can’t talk you can’t do your work. And now that the migraine is over, now you have tons of work to catch up and your friends and your family accommodating you and planning to meet your needs. That’s very important. So you know, I like to be frank with my friends that, okay, I have migraine, I can’t do this. Maybe we can schedule another day. And they are open to that and then so I don’t have to feel socially isolated all the time. So that helps a lot, going for a walk taking care of myself doing exercises when I can sitting with my iPad and painting I find that’s a big relief for me a big self care as I told you before that I feel that okay, the days were not wasted. I could do something for my migraine community and put my art there. So yeah, these are the main thing. Yeah,

Nahid Shukralla  19:46

You have an amazing catalogue of self care tips to kinda help you and I think we can all take I think society needs to take a page out of Nahids book in terms of being open with like our family and friends. and having a supportive community who understands us and meets us where we are and knows our limitations as to how we can engage after or during a migraine attack. I think having an understanding community and a support system is so beautiful. Yes. And I think more people in our community would benefit from that. And I just I hope that society, the more we do have conversations like this get help break that stigma. So I appreciate your support system. And just one note that rest absolutely is productive. And it’s essential to get us back to baselines.

Nahid Shukralla  20:35

Exactly.

Nahid Shukralla  20:36

Nahid. I want to thank you for coming on the podcast today sharing your story, and I look forward to seeing more of your art as you grow. So thank you.

Nahid Shukralla  20:46

Thank you so much for having me. It was really nice talking to you.

Sarah Shaw  20:51

Thank you for listening to this episode of talking had been the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating write a positive review and spread the word by sharing with your friends and family. It’ll help more people like you find us. I’m Sarah Shaw and I will see you next time.

Narrator  21:10

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

Narrator  00:00

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

Nahid Shukralla  00:10

When I graduated high school and I got two scholarships, one for arts and at the same time, I got a scholarship to study medicine. And my mom said, if you go into arts right now, it will be very difficult for you to get back into medicine. And when I graduated medical school, I did my residency in pathology. So I become a pathologist. And when things became really hard for me with health problems and chronic migraine, I decided, You know what, let me go back into art.

Sarah Shaw  00:47

Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host Sarah Shaw, Senior Manager of bipoc Community Outreach at the Global Healthy Living Foundation. I have been living with chronic migraine for almost 10 years and I’m very open about navigating life with my chronic disease journey as well as my experience living with anxiety. This podcast will be a window into other patients lives as they navigate their own journeys living with chronic pain, migraine and mental health. Today, we’re joined by Nahid Shukralla, a visual artist who lives with migraine. We’re gonna dive deep into her story about how she merged her migraine with her visual art. Hi, Nahid welcome to the podcast.

Nahid Shukralla  01:29

Hey, Sarah, thank you for having me.

Nahid Shukralla  01:31

I’m really excited to dig into your story and learn a little bit more about your amazing art. But let’s first start off with walking us through if you can remember what your worst like migraine attack has been

Nahid Shukralla  01:44

So I have many of those bad migraine attacks, and I’ve been to ER several times. But one migraine attack that always sticks with me that I can’t forget is when I was pregnant with my son. So I was in my early 30s. I was about six months or five months pregnant. And I’d developed severe migraine that for three days, I couldn’t move my head left or right because of the pain. And I had to stay home from work and couldn’t even fall asleep at night because of the pain couldn’t even lie down flat. And after two days. The third night I was just sitting in the bed and holding my head straight because I couldn’t move it. And at that point, my husband he woke up from sleep and he looks at me and I just the tears were pouring down my eyes because of the pain. And when he saw that he said, Okay, we have to take you to emergency room. And at that point, so we went to emergency room, They admitted me and the doctors were really puzzled what to give me for pain medication. The regular Angelica six didn’t help me, of course, Tylenol, ibuprofen and the being pregnant. That was a limitation of whatever medication they gave me. And whatever they could give me at that time they did and nothing worked. So even in the hospital three days, again, holding my head straight, can’t move it with severe pain until somebody came with a suggestion that maybe we’ll try anti histamine medication. Some of the literature mentioned that it’s second pregnancy. And if they give it IV rapid IV that might help. And that was the third day in the hospital. And when they push that IV n is just like everything brightened in my eye. And I’m like, Oh my gosh, I could move my head left to right. Wow. Yeah. So that was something that always stayed with me other than going to the emergency room being severe pain, but that particular you know, incident always stayed with me. Yeah,

Nahid Shukralla  04:05

for sure. Listening to your experience, it made me kind of think and reflect about, like the limitations and challenges of what being pregnant like people who are pregnant have to deal with the limitations of what they can and cannot be on when you are pregnant and just about making treatment safe and effective for people going through pregnancy and how difficult that must have been for you. You know, three days of not being able to move your head from left to right. You just have to keep it straight. Oh my gosh. Yeah, that sounds really awful and painful. I’m glad that you’re no longer in that space. Again. We’re going to touch on your migraine artwork in a moment. But I would love to know what drew you to art in the first place. Like how did you get into it? Walk us through that background?

Nahid Shukralla  04:53

Oh well, I was always into art. Since I was a kid. I would always be sitting with a pen and paper and just a sketching, drawing whatever it came in my mind and coloring pencil. Even if I was watching a TV show as a kid, I would have a sketchbook in front of me and I would paint. And as I got to high school, I had art teacher, that she was really impressed with my ability to paint. And she really encouraged me in that direction. So I became really better and better at the techniques. And the thing is that when I graduated high school, and that was in Bahrain, I was born and raised in Bahrain, I got a scholarship two scholarships, actually one for arts. And it was only two people at that time in Bahrain that got that scholarship, it was me and another person. And at the same time, I got a scholarship to study medicine. And I really had a passion to study in medicine. So I was like, in between the two, okay, what should I do, I love arts, and I love to become a doctor. And it was at that time that my mom advised me, she said, if you go into arts right now, it will be very difficult for you to get back into medicine. But if you go and study medicine right now, you can always go back to art. And I’m glad that I listened to her because that’s what happened that when I graduated medical school, I did my residency in pathology. So I become a pathologist. And when things became really hard for me with health problems, and chronic migraine, my daughter was born. So I have a son and my daughter. So when my daughter was born, and I found it very hard to practice full time. And with my chronic migraine, it was really difficult. So at that time, I decided, You know what, let me go back into art. And I went back to art and I joined private classes, and I went from there. Wow,

Nahid Shukralla  07:07

your journey is really interesting. And I think it kind of goes to show the way that we pivot and navigate when we’re faced with life’s challenges of being, you know, thrown like a chronic illness like chronic migraine. I know for me, I can kind of relate and like the same fence of thinking I was going to end up in a career so I did event planning for probably close to eight years. And it was a lot of really early mornings and late night events and that wasn’t working, my migraines had become more severe, kind of like you were you’re realizing you have to pivot. Yeah, and I just love how you were able to pivot in a way that still focused on migraine. And like now’s the part that I really want to dig into is I found you through Instagram and through your Instagram account where you bring your migraine Auras to life which I think is so fascinating because I feel like migraine Aras they’re talked about a lot but there’s not a lot of visual representation. I know when I first had my first migraine aura I didn’t realize it was a migraine aura I just kind of thought everybody like had these little like for me mine were kind of like snowflakes, it would be black and then I would just see white spots everywhere and I just assumed everybody was dealing with that and it wasn’t until like three or four years in when I learned about okay that’s an aura but there’s a lot of literature on it but there’s not a lot of visuals and that’s why I really love your account where you brought that to life. Can you talk about what inspired you to take what a lot of people will explain right a migrane aura is it happens right before you get the migraine attack so it’s kind of like a warning and how you turned it into these amazing visual art pieces. You know what light bulb went off for you? Yes

Nahid Shukralla  08:53

so as I told you I got into private classes and I started doing oil painting landscape is to lie pain the also acrylic and then you know I guess I always saw these auras but as you say, like I can relate to you I didn’t recognize them as such that these are auras or something that I’m seeing until you know my migraine got worse and I started getting treatment, Botox treatment and that when I noticed that okay, just before my migraine, I am seeing like different shapes and colors. And at that time, it was mainly bluish colors. It was really beautiful. They look beautiful moving like stars or a yellowish blue and being into art and studying all these different pigments. So I could relate to those colors at the time see, and then I started focusing more and more on them. Okay, what are these? And then I realized oh my gosh, these are auras before migraine attacks, I started to capture them at the beginning, just by coloring pencil on a sketch note in writing notes about them, then I progressed to painting them in acrylic in oil. So I had a big canvas in my basement that whenever I saw aura I would start painting it, so I did few of those paintings, then eventually, I realized, you know what, this is not making sense because migraine auras are moving shapes and colors, they are not static. So where would I capture what I saw, just for to give you an example, if it is a star that I am seeing the star moves in spirals, and it changes from big size to small size. If I’m painting, I can’t capture that, because I can just draw the star either big or small, even if I represent them in different shapes. Still, I can’t capture the movement, right? So I noticed that my son at that time, he was into sketching and painting and he got me this app procreate in, he told me, mom, maybe you should try this digital painting. So I had that on my computer for a while, but I could never find the time to dedicate and sit and learn that it was until January 2020. When I broke my feet.

Nahid Shukralla  11:34

Oh my goodness, you know

Nahid Shukralla  11:35

I broke two bones in my feet. So I had to stay home because my foot was in cast. And I thought you know what to pass time literally dig into digital painting. Let me see if I can master that or not. And I did. And for two months that I was home bound, I you know, practiced on my own looked on YouTube and basically self taught myself. I started at the beginning just to learn how to do landscape. And then eventually, I started painting my auras. And yeah, I saw them. And then I started animating them. And I said, Oh my gosh, this is a perfect medium. Finally, I can relate to the world, what I see, animate them the way I see them so that you know everybody else can see what we see and relate to it to the point I became so precise as to draw and animate my auras the way I saw them, which in the visual field, which quadrant of the visual field, I saw the aura is it upper quadrant, upper left or lower? Right, so I started doing all that. Wow,

Nahid Shukralla  12:49

that’s really amazing. Like you said that you broke both of your feet, you kind of took a negative, if I may call it that and turn it into a positive where you were able to actually slow down and like take the time to pour into this like beautiful representation, a symptom of migraine that isn’t noticed as much in a visual way. Right. And you’re absolutely right, you were talking about okay, I can paint my auras. But that isn’t a full representation of what an art is because it’s moving like you said, it doesn’t stay still and how has that been received? Like I know you were creating this art and then you put it on your Instagram account, what sort of feedback have you gotten from the migraine community about being able to visualize these auras?

Nahid Shukralla  13:35

You know, it was amazing feedback. I was surprised so I started by putting these on Instagram not knowing what will be the response but then I got encouraged because some people would say to me, they comment oh my gosh, this is exactly what I see. This is my most common aura Wow. So people can relate to these auras and you know, they can relate to it they seen the similar things and being from medical background like I searched the literature there is not much about auras written so I was really encouraged. So I started then as soon as I see the auras of course when I have pain I can’t draw I can’t do anything I have to be lying in bed dark till the pain goes away. So at the beginning I was just writing notes and then later on during the postdrum I would be sitting with my iPad and as you know during postdrome you know a person with migraine feels very exhausted and tired although the pain is gone, but the physical symptoms are still there. And I would sit with my iPad for hours just trying to animate what I saw in then when I posted on an Instagram people would comment that wow we didn’t know that migraine looks like that. And then I also had other comments, people saying that my teenage daughter can relate to your auras, she can see, you know, most of your painting, she can relate to them. And that really encouraged me. And by the end of the day at postdrome, I felt, okay, you know what I am putting my auras there, the day has not been wasted. With postdrome, we are still exhausted, can’t do much. But I feel productive by painting my aura by animating it and putting it out there helping other people make them feel that they are not alone. And they can relate to my art. Absolutely.

Nahid Shukralla  15:44

And even past like this idea and notion of productivity, us even dealing or working through our postdrum is doing something and you are able to do even more than that after you know you’re experiencing a migraine attack to help the community and dare I say like for people who don’t feel seen or represented or maybe don’t know how to describe to their doctor, what they’re experiencing now there is this visual template almost for people to be like, Oh, this is like what I’m experiencing. And they have a name. And they have a visual related to it. Because as we know, like, there’s this history of us being told or thinking it’s all in our heads. And because we don’t have like proof sometimes like this is something where you can be like, No, this is exactly what my migraine aura looks like. And you’re able to open up a dialogue and provide validation, I think for people. So I’m really, really grateful that your account exists and that it’s helping the community. And it’s just this visual representation that you’re absolutely right is missing. So I hope that researchers and doctors and other people in medical fields will look into your account and take the time to dedicate to the visual representation of auras. Yeah, I know, we’re coming down to the end. And so I like to kind of sort of end the episode where we talk about like mental health and self care. I know artwork is also a form of self care for people. Can you talk to us a little bit about what is your self care routine to make sure you’re taking care of you when you’re in the midst of dealing with a chronic illness like migraine. So

Nahid Shukralla  17:26

my name is strategy, I changed everything in life to make it easier for myself and for my family to deal with migraine and take care of myself open dialogue, as you said, with my family, you know, it’s very important. My husband is very supportive. My kids are very supportive of me, they understand by looking at me that I have migraine, and they let me take my time and rest. And I’m lucky alsothat I’m surrounded by friends who understand my disability, not every outing or every plan works, it can change all of a sudden because of migraine. So I’m lucky very lucky in that way. And the days that I’m really feeling down of course and have migraine, I can’t do much. But other days if I’m you know I’m feeling up to it, I go out I go for a walk I meet with friends. I think socializing is very, very important with chronic migraine because cancelling frequent plans, it really isolates a person first of all, is spending one whole day or two days in bed because of the pain and then the prodrome and postdrome that takes a toll on a person three days where you can’t meet other people, you can’t talk you can’t do your work. And now that the migraine is over, now you have tons of work to catch up and your friends and your family accommodating you and planning to meet your needs. That’s very important. So you know, I like to be frank with my friends that, okay, I have migraine, I can’t do this. Maybe we can schedule another day. And they are open to that and then so I don’t have to feel socially isolated all the time. So that helps a lot, going for a walk taking care of myself doing exercises when I can sitting with my iPad and painting I find that’s a big relief for me a big self care as I told you before that I feel that okay, the days were not wasted. I could do something for my migraine community and put my art there. So yeah, these are the main thing. Yeah,

Nahid Shukralla  19:46

You have an amazing catalogue of self care tips to kinda help you and I think we can all take I think society needs to take a page out of Nahids book in terms of being open with like our family and friends. and having a supportive community who understands us and meets us where we are and knows our limitations as to how we can engage after or during a migraine attack. I think having an understanding community and a support system is so beautiful. Yes. And I think more people in our community would benefit from that. And I just I hope that society, the more we do have conversations like this get help break that stigma. So I appreciate your support system. And just one note that rest absolutely is productive. And it’s essential to get us back to baselines.

Nahid Shukralla  20:35

Exactly.

Nahid Shukralla  20:36

Nahid. I want to thank you for coming on the podcast today sharing your story, and I look forward to seeing more of your art as you grow. So thank you.

Nahid Shukralla  20:46

Thank you so much for having me. It was really nice talking to you.

Sarah Shaw  20:51

Thank you for listening to this episode of talking had been the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating write a positive review and spread the word by sharing with your friends and family. It’ll help more people like you find us. I’m Sarah Shaw and I will see you next time.

Narrator  21:10

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

Narrator  00:00

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

Taylor  00:10

I have had a major improvement in my baseline now compared to where I was five or six years ago, a lot of that has come from just the huge advancements and treatment options that have become available in recent years. I was kind of ready to give up. I was like, I think I’m out, I might just have to get used to living with this kind of pain. I had tried probably like 15 to 20 different medications by that point. But when I had the opportunity to try these new treatments, I was like, let’s do it. Sign me up. Nothing else worked before like might as well see if any of these do.

Sarah Shaw  00:49

Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host, Sarah Shaw, Senior Manager of BIPOC Community Outreach at the Global Healthy Living Foundation. I have been living with chronic migraine for almost 10 years, and I’m very open about navigating life with my chronic disease journey as well as my experience living with anxiety. This podcast will be a window into other patients lives as they navigate their own journeys living with chronic pain, migraine and mental health. And I’m joined today by Taylor, who has been living with chronic migraine for over 10 years now. Taylor, welcome to the podcast.

Taylor  01:25

Thank you so much for having me.

Sarah Shaw  01:27

I like to start off the show by asking people what’s been their worst migraine attack and walk us through that.

Taylor  01:34

Oh, gosh. Well, I feel like any migraine attack that ends in the hospital, you know, ER is a bad one. I’ve had a number of those. But I think probably the scariest worst attack I ever had was one where I really couldn’t tell if it was a migraine or a stroke, which generally good advice I’ve received is in that case, you definitely want to go get checked out. But you know, I had the whole like drooping on one side, I could barely get my words out. The pain was so intense that it just felt like being in another dimension. And fortunately, my nausea has really improved in recent years. But at that period of time, I had some major GI symptoms as well. So that was a rough one. And then unfortunately, sometimes going to the ER is a problem in itself. It’s not exactly a pleasant experience. I kind of just found a white knuckle my way through that one.

Taylor  01:34

Yes, I have been to the ER once and only once for migraine and just will not go back just because of the experience. And we talk on the podcast a lot. I think every other person talks about how the ER is not a good place for people with migraine. It’s very loud, there’s bright lights happening. It’s not a good environment when you’re someone who just wants to curl up into a ball and be in the dark. Right? Exactly.

Taylor  02:55

Yeah, I was just there Friday, not nearly as bad as an attack, but just kind of trying to deal with a flare and was so fortunate that it felt like the hospital staff I was working with was a little more aware, they offered to turn the lights off for me if they had to turn them on, they gave me like a washcloth I could put over my eyes, they were much more like migraine literate. And I think that kind of has something to do with what we’re talking about today.

Sarah Shaw  03:21

So I was gonna say the same thing. I think we’ve come a long way. And I’m gonna get into this a little bit later on the podcast about stigma, as you know, I’m going to talk about it now because it kind of flows into the conversation, right? You were mentioning about the difference between the worst migraine attack that you had where you were at the ER to one that unfortunately, we’re just at the ER recently but had a better experience. And it’s the little things like you said putting a washcloth like over your head like them letting you know when they’re gonna turn on the lights and whatnot, just those little changes, speaking quieter, putting you in like in your own room, those make a difference then also being educated on what are the newer and better like migraine treatments to be on versus what has been done, you know, 20 30 40 years ago. And so I think there’s still a long way to go but I do see an improvement. And speaking of stigma and knowing that you’ve been living with migraine for over 10 years now, what are some tips that you can share in terms of helping break that stigma that is put on you know, the word migraine and like it being not just a bad headache?

Taylor  04:27

Yeah, I would say that as much as it has been a journey to get to this place. Living your authentic self is really one of the best things that you can do. Sometimes I feel like there’s this instinct when you’re meeting new people, you’re in a new job, whatever the situation might be to try to hide and mask your pain, mask your symptoms and in a lot of ways I feel like they come back to bite you. I think especially socially, I’ve found it so helpful if I’m, you know, making new friends and connections, I’ll just say, hey, there might be times that I have to cancel our plans. If nothing personal, it’s not that I don’t like you, I love to hang out. But this is just my life might look a little different. And I found that people have been much more receptive to that than maybe the alternative of, oh, sorry, I’m not going to be able to make it today, you know, again, and again. And again. Yeah, and just by being honest, it allows us to make plans that are more conducive to, you know, whatever my threshold is, for stimuli. And same with jobs, too. That’s a I think, a little more scary, just because you never want to lose an interview and an opportunity. But I’ve just found in my more recent opportunities, when I was looking for a new job, I was moving whatever else, I really sought out employers that had something on their application or their website about being a disability friendly employer, and I was just upfront about it from the beginning. So I’ve know myself well enough now to have a pretty good idea of what my abilities are, what I bring to the table and really selling that the best that I can, but just also saying, and here are some things that I need. So yeah, it’s made a big difference just to own it the best that I can.

Sarah Shaw  06:21

That’s so encouraging. And I think exactly where we want all migraine patients to get to that point. And I know you mentioned it being scary, kind of, you know, like admitting that you live with a chronic illness that does impact your life. And you talking reminded me of something that happened at a previous employer where I was like, should I shouldn’t I should I talk about and it was this back and forth in my head. And I was like, you know, what do I have to lose, it’s better for me to talk about it now just to see how they’re going to react. And in it, I told them, I was like a migraine advocate and talking about how it impacts my life. And the first question out of her mouth was, well, does it impact your work, and right then and there, I was like, Okay, we’re gonna have an issue. Like, of just like you, you don’t get it. And I did work there. But there was just a lack of understanding and empathy versus like, where I work now at GHLF. And just this understanding of, okay, we know you have a chronic illness, we’ll make accommodations, I can work from home, I, if I need to lay down for 30 minutes while I take a medication to let myself feel better. That’s what I’m going to do. And that’s how I’m going to show up as my best self. And I think what you were saying really, really aligned with that. And that’s the goal. That’s what I want everyone to experience. And I think addressing stigma and having conversations like this is a big part of the puzzle.

Taylor  07:38

Yeah, I would completely agree and to what you were saying, if that gives you the kind of heads up that you need to know, oh, maybe the supplier is not going to be a good fit, or this relationship might be more superficial than I thought it was, or whatever feedback that you get is really useful information. Because at the end of the day, like we have to protect our health and our energy too.

Sarah Shaw  08:01

Absolutely and I just want to make a note when I said earlier, when they asked about oh will that impact your work? It does and it doesn’t. But what a lot of people get wrong is okay, we’re just not going to be good workers. And that is the furthest thing from the truth. Like I know if I need 30 minutes to 40. But that’s when my medicine kick in, I’m going to show up so much better at work and put my everything into it. I just need accommodations. And so I think that’s the understanding that I want to see happen in terms of people who live with just not even migraine, but like chronic illness in general. We’re such a valuable members of society who contribute to a lot, we just work differently. And if we’re able to navigate that with people magic can happen. I’m slowly starting to see it, like you mentioned, like having organizations talk about disability and stuff like that. That’s the little icon to know. Okay, this is a good place for us. I know from us chatting briefly. You’ve had to advocate to get your migraine care that you deserve. Do you mind sharing some ways that you’ve advocated that might be helpful to our listeners? Sure.

Taylor  09:06

I would love to start just by maybe painting a picture of the dire circumstances of where it began. Because I think this is just so relatable for most patients, when we’re kind of starting out completely in the dark, not even really understanding our own condition, what works, what doesn’t work, we are totally putting our lives in the hands of our care practitioners. And so you know, I had kind of started out and my just PCP like my general practitioners office trying the very basic most rescue medications. We didn’t really quite get into preventatives. That was the point where they decided like, oh, we should probably turn you over to a neurologist and the first provider that I saw was so old school. I mean, I feel like he just managed to avoid picking up a journal article. or, you know, watching a news story for years on migraine. And so she had the advice of, oh, just take these over the counter medications, these anti inflammatories, these things that we come to learn, the more that you deal with chronic migraine are just going to set you up for more problems in the long run. So I inevitably developed the rebound headaches, the medication overuse headaches, and the advice at that point was, oh, well, you’re taking it too much, we need to just stop this cold turkey. So I’m like what, you know, we’re going from take this the second you even think you have a headache going on to just avoid it completely. And it was devastating. I completely broke my trust with that provider. That was the point at which I decided to switch to another neurologist. And this was the sweetest guy, so willing to try new treatments, exhaust all the options, but I just wasn’t getting better. And I just I always have to tell the story to people because it’s just such a like pivotal moment in my migraine journey. I went to his office and was just, you know, I was in college, I was losing all my friends, I was making awful grades, my life was just completely spiraling out of control. And I’m emotional, I’m crying, he starts crying. And then two weeks later, I get a letter in the mail saying that he had left his practice. And so I’m thinking, Oh, no, did I just break him? What’s that mean? I’m sure it wasn’t but just looking back on where my patient journey started, I came to learn through those experiences. At the end of the day, it’s me, like my neurologists are gonna be the ones to write the prescriptions and help me move throughout my treatment. But I’m the one who has to keep this train on the tracks, I need to really kind of take responsibility as much as I can. And as difficult as that can be when you’re in the throes of migraine. So I began doing things like tracking my attacks and triggers and responsiveness to medication, the best that I could, so that when I went to my appointments, I had some good solid data to show anybody who has been part of this process and knows that you’re gonna get the questionnaire that asks you how many headache days a month rate the severity, there’s a lot of numbers. So if you have something that you can look back, and just kind of plug in that way, it’s so helpful. I also have taken it upon myself to try to educate myself the best that I can as a patient, you know, as lay people have very different levels of ability and understanding that kind of information compared to other providers. But I’ve done some really great webinars, you know, online courses, support groups, all these different kinds of things where I could just get an idea of the lay of the land, and I could show up to my appointments, ready to ask questions and ready to say, hey, this didn’t work out so well, might we be able to do this? Might we be able to do that? And then of course, there’s always the component of how do we pay for all these treatments. And so it might be that we have some kind of private commercial insurance, we might be working with some kind of government funded source, whatever that may be, you have to kind of get an idea of how it works. So that then you can help push things through when they get stuck. So that’s kind of an ever evolving effort. I think I have the kind of leg up right now of actually working for an insurance company. So that’s really helped me get the inside scoop on some of these things. But just educating for yourself and speaking up the best that you can becoming part of your treatment journey as an active participant.

Sarah Shaw  13:42

Taylor what I’m hearing is you really took the reins, and you are like fine or quote unquote, like where I’m at is not okay, like I deserve better, I deserve better treatment. And given that I think you mentioned you were on better treatment now. Or at least maybe you’re feeling better now versus where you were five, six years ago. Can you walk us through how you went through that with like your current provider. I know with me, like my headache specialist, and I go over like shared decision making, she’ll bring something up, I’ll bring up something. And we’ll come into the middle to find it an agreement of what will work for us, I’m just curious that you’ve experienced that.

Taylor  14:22

That is so promising to hear that more providers are starting to take that kind of approach and involving patients and making decisions for themselves, which makes a lot of sense. You know we really should at least have one hand on the wheel with them. As we’re kind of driving down that road. I have had major improvement in my baseline now compared to where I was five or six years ago. A lot of that has come from just the huge advancements and treatment options that have become available in recent years. And I was at a place right about that time where these were least started to become more accessible the different treatment option, I was kind of ready to give up the same way that I got that letter in the mail from my doctor that he was out, I was like, I think I’m out, I might just have to get used to living with this kind of pain. But that might just be my normal for the rest of my life. And that’s devastating, but also, in some ways feels more feasible than just the constant fight to try to get better and not see any improvement. So I luckily had kind of kept one foot in the migraine education space at enough that when I started to kind of hear the buzz about oh, have you tried this? Have you tried that there’s this new thing. That’s kind of where I was like, I think it’s time to go back to the drawing board. I had tried probably like 15 to 20 different medications by that point. And these were, you know, again, the more like old school off label, I think they kind of call them treatments where it wasn’t developed for migraine in most cases. Yeah. So they really are just throwing things at the wall and seeing what sticks. But when I had the opportunity to try these new treatments, I was like, let’s do it. Sign me up. Nothing else worked before, like, might as well see if any of these do.

Sarah Shaw  16:17

What do you have to lose? Right? I was at that place too. Exactly.

Taylor  16:22

Right. Yeah. And some treatments are more or less pleasant than others. So you kind of have to buckle up and just say, Alright, I know, this is what I’m getting into by trying new things. But you know, let’s give it a shot. So I’m so glad that throughout the course of like the transitions with my different neurologist, and everything that was happening on that, and I did still continue to see the same general practitioner that had initially given me the kind of like first line of defense prescriptions. And so they were always so empathetic and always so encouraging about let’s try to do whatever we can to just get you some relief. And so when some of these new treatments hit the market, that’s the first place that I went back to was my GP and I also had a huge benefit where his wife was a long time, chronic intractable, you know, I’ve had plenty of episodes that were intractable, but she was that was just her status quo. So she knew firsthand what it was like for her, she was able to start some of these new treatments saw a huge improvement. And so when I went to him and just said, like, Hey, this is where I want to try to take this. He was like, Absolutely, let’s do it. So he was able to help me access some of those right away and then as time went on more treatments came out, it was kind of like, okay, let’s get you back to neurology. I had a move since then. So unfortunately, he’s no longer my main general practitioner, but I’ve had some really fabulous other ones. And I’m also now working with a really great neurologist who is in the same mindset that I am, where any amount of pain that I’m experiencing is not okay, there’s no reason that I should be living that way. And so I could have the mindset where I’m like, Yeah, I’ve improved a lot, maybe this is as good as it gets. I’m kind of like no, like, I’ve seen what it’s like on the other side, you know, I’ve seen what it’s like to really have my life just changed so drastically. And I want more of that. And my neurologist is very much the same way.

Sarah Shaw  18:26

It’s so refreshing to hear for multiple reasons, Taylor, I’ll try to do this in order. One being that your general practitioner was kind of the link to wanting to like work, collaborate and like work together with you, as we know, number one, like there are not that many headache specialists in the US and there are not as many neurologists who have an understanding of migraine. And so looking at that right off the bat, where do people go they go either to the ER or they go to their primary care doctor and so having our primary care doctors educated about these newer medications and you being able to have a conversation with him. I know personally, whenever I go to see any primary care doctor, whether they’re new or old, I’ll list out my medications and there’s like What’s this for um I’m like that’s for migraine. What’s this? That’s for migraine too. Like having just even that is like a form of advocacy if I’m at least making some sort of impression to be like if you have any other migraine patients maybe mention you know these for them because there’s too many things out there that’s hard to keep track of and now like you said, we have this I don’t say plethora, but we have all of these newer treatments and medications that like you said you are responding so much better too and I was at a very similar point where I was at an old neurologist and I just started crying because I was just like, I can’t keep living this way. I can’t I was struggling at work. It was hard. It was difficult and just moving from that into seeing like my current neurologist where she’s like, we don’t care. We’re gonna try every single thing, just knowing that you had someone that’s not gonna give up on you makes like a huge difference. And I think you’re also like a testament to that as being the patient who tries their hardest to educate yourself about what’s going on, because unfortunately, there are too many things and being able to bring something to the doctor, like I remember when I first used the term CGRP to my neurologist, they were like look at you! And I was like, there’s more where that came from.

Taylor  20:17

Yeah, hit him with the monoclonal antibody or ever.

Sarah Shaw  20:20

It’s exactly I’m like, we can talk these terms all day, let’s go at it. But no, it’s important. It’s important to advocate it’s important to also knowing that migraine is an invisible illness that’s already heavily stigmatized as just a bad headache, or, Oh, it’s stress and all of these like terrible things that are associated with it. And then you add being like a woman or a non-binary person on top of that, you know, we’re batting out their having to go hard. And conversations like these are really important to help move the needle forward. You kind of touched on this, but what motivated you to make these more positive health outcomes? I know when we get to that dark place, like I suffer from anxiety and other mental health issues, like how did you get to the point where you were like, I deserve better? I deserve more.

Taylor  21:10

Yeah I was so I mean just incredibly depressed when I was at my lowest low with migraine. And I mean, like, you’ll see all the time like the inspirational like, Hey, you got out of bed today, you know, you took a shower, like that was very much true when I was just in full on survival mode. I think when you start to experience the really small successes, and the very little changes that give you some insight that life can be better. It’s like a snowball effect. It can be a really, really slow rolling snowball effect. But I found that you know, whatever it was that like little voice inside that just said, like, hey, this could be it listening to that starting to have more and more pain free or manageable days seeing such a huge reduction in my my nausea, and you know, the other kinds of symptoms that were so common for me with migraine, it was just like, I would have these little windows open up where suddenly like something was possible that wasn’t possible before. And we know with migraine lifestyle, and the choices that you make every minute of every day can play such a huge part in your condition. Absolutely. So yeah, it was things like finally having enough energy to make a good nutritious meal, instead of just pulling something out for the freezer or finding more ways to like incorporate movement into my routine, all these things where it was just like compounding factors to I felt a little bit better a little bit better, this change helped that change help. And so it was really hard to kind of like pull myself out of the deep dark hole at the beginning. But once I did, it was just so validating and encouraging to just keep going. And so when I find myself in kind of like a flare like I’ve been experiencing recently, I’ll be honest, the first reaction is always panic, right? I’m looking at my migraine tracker, I’m seeing this huge increase in days and severity and, you know, return of some symptoms I haven’t had in a long time and some patterns that I thought I’d kind of overcome. And so my brain just goes, mermermmer, you know, high alert like, we don’t want to go back to where we were before like that it’s unimaginable. I don’t know, honestly, how you know, me or anybody else that has gone through that experience makes it through, it’s just so soul crushing and awful to live through. But I kind of just keep reminding myself, if you can just get a couple more pain free days, if you can just get back to the point where you’re exercising a little more, it’s just kind of trying to keep that progress. And the same way that I almost had to like relearn how to be happy and how to feel good. Like when I was coming out of that really depressive state, I started going to therapy more then than I did when I was actually depressed because I had to learn how to let that go. It was something where I just was always waiting for the other shoe to drop up just living in that constant state of like, This can’t be real. This can’t be right. I can’t be feeling this good for this long. And it was really helpful for me to learn how to just reframe some of those super ingrained thought patterns that I was living in. So that’s just kind of the mentality I’ve tried to keep and how I tried to keep tackling these flares when they come.

Sarah Shaw  22:29

Absolutely, I appreciate what you shared and being vulnerable about like depression and talk about mental health a lot on the podcast and how pain such as migraine you know, whether it’s arthritis or whatever it how that impacts our mental health and having resources and tools in place to work alongside that are crucial but the reality is Being pain sucks. Like, I’m not going to sugarcoat it. And so anything that we can do to bring relief to patients, whether they’re migraine, arthritis IBD, you know, we want to do. So I just want to thank you for coming on the podcast, sharing your story, sharing your experience, and just letting us get a peek into your life. So Taylor, thank you so much for coming on.

Taylor  25:22

Yeah, it’s such a pleasure. And I would encourage anybody who has the opportunity to do the same, it’s only going to help me be a better advocate. So thank you so much.

Sarah Shaw  25:31

Thank you for listening to this episode of Talking Head Pain. The podcast that confronts head pain head on. This podcast was made possible with support from Lundbeck. If you have any questions, thoughts or suggestions for us, you can send us an email at [email protected] If you liked this episode, please give it an honest five star rating, write a positive review and spread the word by sharing with your friends and family. It’ll help more people like you find us. I’m Sarah Shaw and I will see you next time.

Narrator  26:03

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

Narrator  00:00

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

Izac Ross  00:10

I think going back to that idea of finding balance in your life: it’s tough. And I’ve made mistakes along the way, especially in the early parts of my career and when I’m doing something that’s really exciting for me, I’ve over-indexed on work and ended up suffering the consequences of that and not having balance. So a practice that I’ve really started is operating way ahead of deadlines and pushing things much earlier and making sure I have someone who always knows what’s going on on my team, or in my orbit, who can sit in for me if something were to happen.

Joe Coe  00:49

I’m here today with Izac Ross, who has been living with migraine since he was a child. He is the founder of The Haven Headache Migraine Center, a new virtual-first clinic in California. You can also find him on Instagram by going to the handle @gaywithaheadache. How are you doing today, Izac?

Izac Ross  01:26

I’m doing good, recovering from a bit of a bad migraine weekend, but really glad to be on the podcast.

Joe Coe  01:33

So let’s jump in with that. It wasn’t a pre-planned question, but what did your migraine look like during the weekend?

Izac Ross  01:39

Yeah, so funnily enough, I was down in Southern California with the whole team all seven of us Haven Headache and Migraine Center. And it was just such an exciting week that I had the classic letdown headache when I came back on Sunday and just laid up in bed and had a few, unfortunately, my least favorite migraine symptom of throwing up. But doing much better now, and just that classic like migraine hangover, which I think for people without migraine is probably the best way of describing it. Like, you had eight drinks the night before and have to function the next day.

Joe Coe  02:13

Izac, I remember having migraine attack. I was in the hospital, not for me; I was visiting my grandmother, and the bright lights in the hospital triggered something and I felt really sick. And I said let me leave the hospital. I walked into town where the hospital was and went to a donut place to get a coffee. And I couldn’t speak; I lost my words, for a moment. It felt like a long time; it probably wasn’t. And when I was able to ask for the coffee, the person was looking at me like I was strange. And they’re like, what’s going on? And I was like, oh, I just had a rough night, you know, and I was like I was out the night before instead of saying I had migraine because this young barista would understand a hangover, but I didn’t feel like educating folks on aphasia and all the things that could happen with migraine. So I totally understand that feeling, Izac.

Izac Ross  03:04

That’s so real. I think that’s such a big part of the experience of having migraine and or any sort of disability that makes you a little different that’s invisible is experience of masking and figuring out how to navigate social situations when you’re not doing that great.

Joe Coe  03:19

Totally. So when we were talking before the podcast you shared with me a bit about your migraine history and being so young with migraine. Can you explain what that was like as a child living with migraine?

Izac Ross  03:32

Yeah, so I was diagnosed at age two, which was back in 1990. And getting diagnosed with pediatric migraine that early was really rare back then, but had some classic signs even before I was speaking that I was photo phobic very often outside, I was grinding my head into the carpet, crying and having excessive crying fits that my parents couldn’t figure out. And I was blessed with a genetic cesspool of two parents with migraine. So I was pretty hopeless to escape without it. But luckily we were living in UCLA at the time, which had and still does have one of the best pediatric neurology practices and got diagnosed as soon as I could really speak and articulate what was going on. But back then, like the triptans didn’t exist, like nothing existed really for rescue medications other than sort of some barbiturates and opioids and anti-seizure medications back then. But as a kid, that was really isolating, right. Socially, I could not do as much as my friends and my classmates and was out of school at least one day a week on and off during different years. I think everyone with migraine who’s a chronic sufferer knows that there are good years and bad years. There’s ebbs and flows in your condition. But very isolating and I was very lucky and not lucky to also have dyslexia severe enough that I was able to go to smaller special needs schools that were more catered than a standard public school. And that really helped me navigate and also, in some ways, learn to navigate and advocate for myself for both my dyslexia and my migraine because to be successful in college, and later in life, I had to learn how to do that pretty quickly.

Joe Coe  05:19

Thank you for sharing that part of your history. Let’s push forward to the current day and your personal experience pushing for what some call migraine freedom. I had a doctor on last week who discussed that concept or the idea of crystal clear days with migraine. Are you there? And if you are there, how did you get there?

Izac Ross  05:40

Yeah, I can’t say that I’m always there but I have months and like whole seasons, where I’m there and at Haven are kind of words for this are ‘more good days’, and how we talk about this and what we aspire for all our patients to have, because for a lot of folks, you know, complete remission is just not a thing. I think we’ll be getting there with some of the new treatments that are in the pipeline over the next five years. But we’re not there yet. But being completely changed in the last 15 years. For me, we talked about the ebb and flow of like good times and bad times. And I was really lucky to graduate college at a time right as Botox for migraine was finally FDA approved, and got it just as I was entering the workforce. And that was the first time where I experienced the crystal clear days a lot more often and had a great sort of six years up until 2016 when I had another sort of setback or bad year and ended up in the ER with one of the worst headaches I have had since I was a kid. And from that point ended up with a daily status headache that just would not go away, which modulated between a low grade and a high grade migraine. And there was a gap between 2016 and 2018 when the new class of CGRP meds came out where I was trying everything, where I tried ablations of the occipital nerve. I tried DHE hospitalizations, which temporarily broke this headache, but nothing really helped until these like miraculous drugs. I know they don’t work for everyone but I was very lucky to get on the first CGRP inhibitor very early, I think in June of 2018. And it took about three months to fully get working. But once it was working, it really broke that headache and got me back to having the crystal clear or ‘more good days’ feeling and that medication plus me being very lucky to also be able to access Botox at the same time, changed my life completely, it was the most clear days I’ve ever had and the longer I’ve been on it with some exceptions, the trajectory has been pretty good. There’s been bad months, but my overall pathway has been great. And I’ve been able to do things that I’ve always wanted to do, which just weren’t possible before. A great example of this is like I did AIDS Lifecycle, which is a bike ride from San Francisco to LA. If I were to do that before the CGRP meds I would have triggered a migraine if I was just mildly dehydrated. And I would experience that on that ride. And I have been able to be more social, I learned that I’m actually an extrovert, where turns out it’s just my migraines that make me an introvert and able to do things like go to 30 music shows a year, which is my passion, and like not miss – for the most part – the shows I want to go to. They’ve really just completely changed my life and really want to spread that to more people.

Joe Coe  08:49

It’s amazing. What were some of the highlights of the shows that you went to in the past year?

Izac Ross  08:53

Oh my gosh, okay, Beyonce, first off, that was amazing. And then my true diva is James Murphy of LCD Soundsystem. I’ve seen him twice this year. Just amazing. And Janelle Monae.

Joe Coe  09:06

I see your vibe really. That’s really important that we find things that brings us joy and that we don’t settle so we can experience that. And that ties into my next question. Why do you advocate for people and yourself to not settle for subpar treatment and to find the right treatment plan for them or for you?

Izac Ross  09:26

I think one just segueing into that, I think it’s really important that what makes life worth living is following your passions and so many things with migraine prevent that and it’s so important to advocate not just to make it through your migraines but actually have a life outside of your experience as a chronic migraine patient. And I think doctors and other people in your surrounding often will give you guilt for going out and doing these things that make life worth really being a joy. And I think every person deserves to go do those things, go see Beyonce, if that’s the thing that you love, or go out dancing with your friends at night. It’s not just about protecting your head. And I think really making and talking about what your goals are with your doctor and having them be somewhat realistic. But you know, not always in your hermit shell of the experience of having a migraine is important to your mental health and your physical health. So pushing for that is really important. And sometimes that means pushing past your current provider and finding the right provider, which is so hard, especially if you’re outside of a major metropolitan area. And this is what’s so exciting about what’s sort of changing in headache medicine is, the studies around virtual care that happened in the pandemic show that the outcomes of receiving virtual care for migraine are exactly the same as in person, which I think is really going to be the future of headache medicine is sort of a hybrid approach of finding your expertise virtually, and then getting any sort of hands on patient stuff locally.

Joe Coe  11:15

Yeah, that makes a lot of sense. And it segues into almost my last question for you today. You are building and have built a very successful career; you’re an entrepreneur. How do you do that living with a chronic disease like migraine?

Izac Ross  11:29

I’m gonna to say it’s not easy. I mean, I think, going back to that idea of finding balance in your life, it’s tough, especially for me going into a new position where I’m the CEO of a company, a totally different set of responsibilities that I’ve had in the past. And part of my role right now is actually to take care of myself so I can grow this business. And I’ve made mistakes along the way, especially in the early parts of my career. And when I’m doing something that’s really exciting for me, I’ve over indexed on work and ended up suffering the consequences of that and not having balance. So I think one key is trying to figure out what your limits are, and making sure you’re never hitting them. I think the other aspect is, and this is unfortunate, it’s like people with a chronic condition have to be so much more hyper- performing than their peers, because they don’t know when they’re going to be out of the office. So a practice that I’ve really started is operating way ahead of deadlines and pushing things much earlier, and making sure I have someone who always knows what’s going on on my team or in my orbit who can sit in for me if something were to happen. That means I actually have a lot more work to do than those folks who don’t suffer from these conditions. But I think it’s also prepared me a lot more as an entrepreneur to give away my lego bricks faster, which is a big thing that comes up as you’re growing a company is to let other people eventually take over your responsibilities. And that is very hard in the early part of your career, but actually makes you a better leader later in your career where you’re going to have to depend on your team a lot of the time to be able to execute on things. And for me in the role that I’m on now hiring people that I really trust and can empower is what’s enabling me to do this. It also doesn’t hurt me right now that I have five excellent headache specialists in my orbit, which is a rarity that no one else will probably ever experience in their life. But before that, I didn’t have any of that. So this is the first time where I literally have people that I’m talking to every day who are headache specialists. But in the early part of my career, working early, telling people what’s on your plate and being able to call out because we have that are really important.

Joe Coe  13:59

I’m laughing in my head about it’s like Izac knows a guy. But that’s like a very New York vibe and feeling, not California.

Izac Ross  14:07

I spent three years in New York, I know a guy.

Joe Coe  14:10

One thing that I wanted to circle back on and just underscore what that statement was that I think our community and audience can relate to a lot is the idea of having to overperform to compensate for the bad days, so we feel like we’re productive. Particularly, the way that we value productivity in our society. We are defined by our jobs and our roles and the output that we give and we hear a lot from people with chronic disease, invisible conditions, the not feeling like they’re a valuable part of society or that their output matters and how to balance that as individuals that are able to work and it’s something I’ve struggled with. I thought I was going to go into politics for a while. I’m not; I hope I’m not, but I didn’t want to necessarily disclose or be very open about having migraine or other chronic diseases is because I’m like, will they say if I ran for office that he can’t really be present for constituents or he’s not totally performing because he has, you know, a headache. So that was something when I was younger than I thought a lot about. I don’t anymore. I feel much more secure in my position and role both, you know, in work, in society, and in myself, but it’s important for us to hear that even the people that look like we’re, it’s easy, and we just have it all together, and we’re doing it, there’s a lot of background stuff that’s happening. So I’m glad that you shared some of that background stuff.

Izac Ross  15:31

Yeah, just to add to that, I think this is a lesson that I’ve learned more from my other disability, which is dyslexia. Because if you read my emails, you can tell early, but this is a lesson that I’ve had to learn is that I need to disclose both very early to my employers. I don’t do it in the hiring process but I do do it very early within my first month of working with a new manager. And I think what’s really important for everyone to know is it is actually a manager’s responsibility, not HR’s responsibility, to provide reasonable accommodations. And if you don’t disclose, you could get yourself into hot water really quickly, especially if you’re more on the chronic side. And it’s really scary to do so it may take some education and actually talking about what the headache phases look like with your manager and how to have them be read into your condition. But the best relationships I have formed are when I have done that really, really early and would really recommend advocating for yourself. Going back to your career in politics, that’s actually what I thought I would do if I didn’t go into this weird career in tech, and I, as a like West Wing super fan, and kid who grew up in DC, I’m really excited to go to Headache on the Hill for the first time this year and advocate in front of the Congress folks for California. So I’m just really psyched for that. I don’t know if you’re doing it.

Joe Coe  16:59

Amazing. No, I was but I had a conflict, unfortunately. But two of my colleagues, Sarah Shaw, and JP will be there, and my legislators know me. So I make sure that they know what matters to us. My last question for you: you just launched Haven Headache & Migraine Center. What is it and why does it matter to folks? And why did you do it?

Izac Ross  17:20

Thank you so much for that question. So my whole career has been in the intersection of user experience and healthcare. And for the last kind of four years, I’ve been thinking about when’s the time to work on this for migraine, and went to World Migraine Summit and just saw the relief, I think this was in 2021, of headache doctors and the excitement of how they were thinking about the future of headache treatment. And I was like, Okay, this is the time to do this. And the whole reason why I want to start Haven Headache & Migraine Center is I am an expert in healthcare. I was an early employee at a startup health insurance company. I know how to navigate the system like no one else can. It took me a year in my moment of crisis in 2016, to get in to see someone in the Bay Area who was an actual specialist, because I was doing pretty well; I was just seeing a general neurologist. And that should not be the case. Everybody deserves access to amazing headache care. And even people who have access to UCSF, Stanford or UCLA, they’re not there in a moment of crisis. You cannot get a hold of your doctor, if you need an infusion, your ass is in the ER, excuse my language. And that is a horrible experience. And I wanted to design and build a headache and migraine center literally around that moment of crisis, which is what we are doing. And it’s so exciting. We have launched in Southern California in LA, OC, and San Diego for in-person care. But we’re virtual throughout California. And we have our open waitlist right now. But we’re gonna start seeing our first patients at the end of January, whenever this comes out. Hopefully we should be open and seeing patients but we’re trying to get folks in within two weeks. And unlike your typical headache center that tells you to fill out a paper diary and nothing gets done with it until you show up in the next visit. We have an interactive diary that we are monitoring on the back end. So if you have 48 hours of headache, we’re going to reach out to you with a solution on what to do and what your next step should be. And if you ever need help, we’re available during business hours to troubleshoot your care plan and work with you right now to be able to afford to do that we are charging a $35 per month access fee on top of your insurance copay is when you see our clinicians but our hope is through clinical studies to get our remote monitoring covered for patients with migraines.

Joe Coe  19:50

That’s amazing. Congratulations! Really excited for you and happy to hear that there’s something new out there for our friends in California.

Izac Ross  19:58

And we have an amazing clinical team of headache specialists and more are coming on board soon. I can’t disclose that quite yet. But you can check us out and join the waitlist at Havenheadache.com. And we’d love, if you’re in California, to see you and if you’re not, demand in other states tells us where we’re going to open up next. So we’re hoping to expand it to other states later in the year.

Joe Coe  20:22

Amazing. Well, thank you so much for taking time out of your schedule to connect with me today. Really appreciate it.

Izac Ross  20:29

Of course! Glad to be on.

Joe Coe  20:32

Thank you for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you have any questions, thoughts, or suggestions for us, you can send us an email at [email protected] If you enjoyed this episode, please give it an honest five star rating, write a positive review, and spread the word by sharing it with your friends and family. It’ll help more people like you find us. I’m Joe Coe and I will see you next time.

Narrator  20:59

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

Narrator  00:00

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

Joe Coe  00:10

Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host Joe Coe, Director of Therapeutic Area Growth and Integration at Global Healthy Living Foundation, and also President of GHLF Canada.

Joe Coe  00:26

I’m here at the European Headache Congress with a very special guest. Can you introduce yourself and state where you’re from?

Dr. Anne Luebke  00:31

I’m Anne Luebke, Dr. Anne Luebke. I’m from the University of Rochester in Rochester, New York.

Joe Coe  00:36

Can you share some of the research that you’re presenting here andwhat it means to patients?

Dr. Anne Luebke  00:40

Sure! So my work is mostly focused on various translational assays of vestibular migraine, two focused ones are postural sway and a mouse readout of motion-induced dizziness. And in other work, I’ve looked at auditory, the increased auditory sensitivity that shows up in migraine, in all migraine. But these other assays, I’m doing postural sway which is also showing up in higher in migraine patients, but even higher in patients that have vestibular migraine or migraine with vertigo. And the other thing that I’m looking at is motion-induced dizziness. Because mice and rats don’t get nausea; they don’t throw up, but we can measure their extent of motion and dizziness by using a fancy IR camera to look inside their heads and so forth. And I looked at this in mice, different mice. The advantage of using mouse models: we can change how much of the CGRP receptor there is and we can also try and block the response to CGRP with various blockers and I guess the most important thing for your patient audience is while the Sumatriptan and Rizatriptan work in regular headache migraine, in migraine with vertigo we found – and we’ve also seen clinically – that Rizatriptan and Sumatriptan don’t work to relieve the vertigo of migraine. And our mouse model assays have actually replicated that. So we’re trying to find new drugs that could possibly help against vestibular migraine since it’s very intractable to current therapeutics.

Joe Coe  02:12

So for our audience, and in simple terms, that there’s hope if you have vestibular migraine or vertigo.

Dr. Anne Luebke  02:17

Yes, and luckily, there’s a lot of people working on it. And in fact, at this meeting, I just met a researcher that is working on transcranial stimulation, some devices, and they even have them that work on mice. So we’re going to try to use those devices and see if those would help in addition to using the various CGRP antagonists or PACAP antagonists, as well as Botox, maybe even do Botox in the mice to see if – because I think for vestibular migraine, it might mean you might have to do two or three therapies because it is sometimes rather intractable to just one of the therapies.

Joe Coe  02:50

Well, thank you so much for your time and insight about vestibular migraine.

Dr. Anne Luebke  02:53

Thanks so much.

Joe Coe  02:54

Thank you for listening to the special episode of Talking Head Pain, the podcast that confronts head pain head on. If you have any questions, thoughts or suggestions for us, you could send us an email at [email protected]. If you enjoyed this episode, please give it an honest five-star rating, write a positive review, and spread the word by sharing it with your friends and family. I’m Joe Coe from the European Headache Congress, and I will see you next time.

Narrator  03:22

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

Narrator  00:00

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

Joe Coe  00:10

Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host Joe Coe, Director of Therapeutic Area Growth and Integration at Global Healthy Living Foundation, and also President of GHLF Canada.

Joe Coe  00:26

I’m here at the European Headache Congress with a very special guest. Can you introduce yourself and state where you’re from?

Dr. Anne Luebke  00:31

I’m Anne Luebke, Dr. Anne Luebke. I’m from the University of Rochester in Rochester, New York.

Joe Coe  00:36

Can you share some of the research that you’re presenting here andwhat it means to patients?

Dr. Anne Luebke  00:40

Sure! So my work is mostly focused on various translational assays of vestibular migraine, two focused ones are postural sway and a mouse readout of motion-induced dizziness. And in other work, I’ve looked at auditory, the increased auditory sensitivity that shows up in migraine, in all migraine. But these other assays, I’m doing postural sway which is also showing up in higher in migraine patients, but even higher in patients that have vestibular migraine or migraine with vertigo. And the other thing that I’m looking at is motion-induced dizziness. Because mice and rats don’t get nausea; they don’t throw up, but we can measure their extent of motion and dizziness by using a fancy IR camera to look inside their heads and so forth. And I looked at this in mice, different mice. The advantage of using mouse models: we can change how much of the CGRP receptor there is and we can also try and block the response to CGRP with various blockers and I guess the most important thing for your patient audience is while the Sumatriptan and Rizatriptan work in regular headache migraine, in migraine with vertigo we found – and we’ve also seen clinically – that Rizatriptan and Sumatriptan don’t work to relieve the vertigo of migraine. And our mouse model assays have actually replicated that. So we’re trying to find new drugs that could possibly help against vestibular migraine since it’s very intractable to current therapeutics.

Joe Coe  02:12

So for our audience, and in simple terms, that there’s hope if you have vestibular migraine or vertigo.

Dr. Anne Luebke  02:17

Yes, and luckily, there’s a lot of people working on it. And in fact, at this meeting, I just met a researcher that is working on transcranial stimulation, some devices, and they even have them that work on mice. So we’re going to try to use those devices and see if those would help in addition to using the various CGRP antagonists or PACAP antagonists, as well as Botox, maybe even do Botox in the mice to see if – because I think for vestibular migraine, it might mean you might have to do two or three therapies because it is sometimes rather intractable to just one of the therapies.

Joe Coe  02:50

Well, thank you so much for your time and insight about vestibular migraine.

Dr. Anne Luebke  02:53

Thanks so much.

Joe Coe  02:54

Thank you for listening to the special episode of Talking Head Pain, the podcast that confronts head pain head on. If you have any questions, thoughts or suggestions for us, you could send us an email at [email protected]. If you enjoyed this episode, please give it an honest five-star rating, write a positive review, and spread the word by sharing it with your friends and family. I’m Joe Coe from the European Headache Congress, and I will see you next time.

Narrator  03:22

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

Narrator  00:00

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

Joe Coe  00:10

Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host Joe Coe, Director of Therapeutic Area Growth and Integration at Global Healthy Living Foundation, and also President of GHLF Canada. For today’s special episode, I’m at the European Headache Congress in Barcelona, Spain.

Joe Coe  00:31

I’m here with a very special guest. Can you introduce yourself, state your name and where you’re from?

Dr. Franchesca Fiorito  00:34

My name is Francesca Fiorito. I am currently coming from San Juan, Puerto Rico. I am a headache specialist there in the island.

Joe Coe  00:42

So I was sitting outside one of the sessions and listening to a conversation between you and another provider. And I learned that you are doing really amazing work in Puerto Rico. Can you share with our audience what that work is?

Dr. Franchesca Fiorito  00:54

Yes, of course. So when I graduated eight years ago, from Montefiore Medical Center with Dr. Lipton, I decided to go back to Puerto Rico, and I was able to go back to the University of Puerto Rico neurology residency. I started a curriculum for headache medicine and the headache medicine clinics for the residents, which I was fortunate there was interest and one resident for a year had started to apply into headache medicine. So now, formally, there are five fellowship-trained headache specialists in the island. In addition, I started to create an outside headache center. So it’s a private headache center that’s specialized and there are three of us, formally. So, the idea is to continue expanding into a multidisciplinary headache center. But really, it’s just focused on all specialties related to headache medicine, and the center is set up in a way for headache patients, right, like the lighting is very low, it’s perfume free, there’s no noise, it’s a very quiet, calm clinic.

Joe Coe  01:53

That’s amazing.

Dr. Franchesca Fiorito  01:54

So that’s something that we’re working on.

Joe Coe  01:56

What are some of the top unmet needs in the population in Puerto Rico?

Dr. Franchesca Fiorito  02:00

I think the main one is first just the patient having access to education, you know, Spanish wise as well, and them recognizing they have a problem. Because if the patient does not recognize that this is not normal, living with headache, living with pain, and they don’t seek help, then it doesn’t matter if there are providers or not. That’s the first step. But then unfortunately, the second step – and I think the biggest barrier – is getting an appropriate provider. And there were no formal headache specialists before I went back there, and even me going back and being the only one for six years, there was no way I could see the amount of patients that have a need for a headache specialist. So that’s why it was important to grow. And even though there’s a group of us now, there’s still such a big need. And I think also the insurance companies educating them because they have local insurance companies. And even though they’re supposed to follow the guidelines of the US territory, it does not always go that way. So really getting into meetings with them specifically about the headache guidelines for them to appropriately approve medications was another step in my career.

Joe Coe  03:11

So important to deal with those access issues. One last question. We were talking a little bit prior to the interview about your work across specialties. What has been some of the work that you’ve done in rheumatology and neurology?

Dr. Franchesca Fiorito  03:22

Oh rheumatology? Well, I haven’t formally done any work with rheumatology. I know Dr. Oscar Soto, which you know, who’s an amazing rheumatologist back home, and he has helped me out and we’ve done clips on migraine and interviews on that. But now we’re looking into our society. We have the Puerto Rican Academy of Neurology. I’m the current President. So we’re looking into doing a Congress now. We have a yearly convention and Congress, including the impact of different pain disorders in neurology, so we want to unite the rheumatologists with us to educate us as well regarding how our conditions intertwine at many times.

Joe Coe  04:04

That is such amazing work, excited to hear about the society being formed, and really appreciate your time and energy here today. Thank you so much.

Dr. Franchesca Fiorito  04:12

Thank you for having me. This was great.

Joe Coe  04:15

Thank you for listening to the special episode of Talking Head Pain, the podcast that confronts head pain head on. If you have any questions, thoughts or suggestions for us, you could send us an email at [email protected]. If you enjoyed this episode, please give it an honest five-star rating, write a positive review, and spread the word by sharing it with your friends and family. I’m Joe Coe from the European Headache Congress, and I will see you next time.

Narrator  04:42

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

Narrator  00:00

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

Joe Coe  00:10

Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host Joe Coe, Director of Therapeutic Area Growth and Integration, at Global Healthy Living Foundation, and also President of GHLF Canada. For today’s special episode, I’m at the European Headache Congress in Barcelona, Spain.

Joe Coe  00:30

I’m here with a very special guest. Can you introduce yourself and state where you’re from?

Dr. Miguel Lainez  00:34

I’m Miguel Lainez, I am Chairman of Neurology and Professor in the Department of Neurology in Hospital Clinico of Valencia, Spain.

Joe Coe  00:42

And we’re here today at the European Headache Congress. From your perspective, what are some of the most interesting pieces of research or discussions that are happening?

Dr. Miguel Lainez  00:50

Well, I think there are many, many things interesting this morning. We have attended a session interesting about the medication overuse? Now, we have a session on vestibular migraine. I think many topics are interesting. And maybe the most important is that there are the results of the last studies with all the new drugs, monoclonal antibodies, the gepants, lasmiditan, and all the new compounds and even some devices that’s in review. A very interesting forum for discussion with friends and colleagues about new ways to improve the quality of life for our patients.

Joe Coe  01:24

That’s so important. What were some of the takeaways from the medication overuse headache discussion and the vestibular migraine discussion?

Dr. Miguel Lainez  01:32

I think it’s important that the patients are conscious that overuse of medication can chronify their migraines. And for this reason, it’s important that they restrict as much as possible the use of acute medication. But I understand that [if] you have severe pain it’s impossible to maintain this position. But fortunately, we have now with the new medications specifically, monoclonal antibodies have very, very good data about how the medication overuse can be reduced with the new treatments. And I think this is very important. And years ago, we thought that the preventive medications don’t work in the case of overuse. Now, we know very well that these medications work even in this kind of basis.

Joe Coe  02:12

So is it safe to say that the newer medications don’t cause medication overuse headache, like some of the older acute medications then?

Dr. Miguel Lainez  02:18

Yes, I think that the new, especially monoclonal antibodies, works very well even in this. Previously, the botilinum toxin was in this medication. And even there are some data on topiramate. I think the important thing is that it is a  combination the management of medication overuse, a combination of education, aptitude to the patient, knowledge about the problem and use of the correct preventive medication.

Joe Coe  02:42

And you mentioned a talk about vestibular migraine. What was the takeaway for our community to learn from that talk?

Dr. Miguel Lainez  02:47

I think it’s important that patients lose the feeling of stigma. I think it’s important to live better with the disease. It’s important that they are conscious that they have a normal disease. They are not the reason. The reason because why they have migraine is the reason because other people have another conditions such as arthritis or asthma or similar. And it’s not a problem of the patient, it’s a problem of the disease. But now, probably many patients think that the problem is [of] themselves, but it’s not themselves; it’s the disease.

Joe Coe  03:17

Well thank you so much for your time, and I really appreciate the information that you shared with our community, and I look forward to the rest of the conference

Dr. Miguel Lainez  03:24

Pleasure to be here and to share these opinions with your community.

Joe Coe  03:29

Thank you for listening to this special episode of Talking Head Pain, the podcast that confronts head pain head on. If you have any questions, thoughts, or suggestions for us, you could send us an email at [email protected]. If you enjoyed this episode, please give it an honest five-star rating, write a positive review, and spread the word by sharing it with your friends and family. I’m Joe Coe from the European Headache Congress, and I will see you next time.

Narrator  03:56

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

Jana-Isabel Huhn-Doll  00:00

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

Joe Coe  00:10

Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host, Joe Coe Director of Therapeutic Area Growth and Integration at  Global Healthy Living Foundation, and also President of GHLF Canada. For today’s special episode, I’m at the European Headache Congress in Barcelona, Spain.

Joe Coe  00:31

I’m here with a very special guest who just spoke about Botox and following the pain. Can you introduce yourself and state where you’re from?

Jana-Isabel Huhn-Doll  00:38

Hi everybody. My name is Jana-Isabel Huhn-Doll, and I’m a neurologist and pain specialist from the beautiful city of Essen, which is in Germany.

Joe Coe  00:46

Very nice and I just had the privilege of listening to do a presentation about following the pain and Botox injections. Can you explain what that means for our patient and provider community?

Jana-Isabel Huhn-Doll  00:55

Yes, as you know that Botox is used for patients with a chronic migraine, which means patients having more than 15 headache days and eight of these being migraine, typical[ly]. And Botox is a good medication and preventive treatment of migraines, and Botox PREEMPT scheme means that we inject patients with Botox in 31 areas of the face and pericranial muscles. And follow the pain means that you have the opportunity – if the Botox is not responding very well or if the patients are not responding well enough to Botox – that you actually follow the pain that patients tell you, ‘my predominant pain is in the back of the head’ or ‘in the trapezius area’, and you are able to do more injections and have a more tailored and individualized approach to their headaches.

Joe Coe  01:46

That’s really important, so as a patient if I’m having more pain in my traps, I should tell my neurologist that.

Jana-Isabel Huhn-Doll  01:52

Yes, definitely. This is what ‘follow the pain’ is about, that you and the patients, together, look at the tenderness of the muscles to decide where does the pain start? Does it start on one side or both sides? And you are able to do the injections in the specific areas.

Joe Coe  02:06

Thank you so much, really useful information and shared decision making in medicine is so important. So thank you.

Jana-Isabel Huhn-Doll  02:12

Thank you.

Joe Coe  02:13

Thank you for listening to this special episode of Talking Head Pain, the podcast that confronts head pain head on. If you have any questions, thoughts or suggestions for us, you could send us an email at [email protected] If you enjoyed this episode, please give it an honest five-star rating, write a positive review, and spread the word by sharing it with your friends and family. I’m Joe Coe from the European Headache Congress, and I will see you next time.

Jana-Isabel Huhn-Doll  02:41

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

Narrator  00:00

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

Joe Coe  00:10

Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host, Joe Coe, Director of Therapeutic Area Growth and Integration with the Global Healthy Living Foundation, as well as President of GHLF Canada. For today’s special episode, I’m at the American Headache Society. I’m turning to a very special guest, can you tell me your name and share what you find most impactful at the American Headache Society?

Dr. Eyal Maoz Halevy  00:38

So I’m Dr. Eyal Maoz Halevy. So the most exciting thing is that I got to meet professionals from different areas from the country from the US and headache and I was surprised to learn how much they differ. They have different interests in the field of headache that of course, they all complement each other. And just yesterday, I was in a very fascinating lecture about LGBTQ medicine. And there was a doctor there, who talked about interactions between medications for headache and for gender reassignment things we should all be really aware of. So that’s just for instance, something I learned there. So yeah, for me, it’s a learning experience and meeting the right people.

Joe Coe  01:15

I love that so much. That’s an important topic that we’ve covered on Talking Head Pain. I want to turn to a recent award that you got just the other day here at AHS, the frontiers award for your research on Physical Activity as a Vital Sign in migraine. Can you talk a little bit more about that?

Dr. Eyal Maoz Halevy  01:31

Physical Activity as a Vital Sign (PAVS) is actually already in use and some medical fields to assess the amount of physical activity done by patients with chronic diseases such as arthritis, for instance, and patients with schizophrenia for instance, because we know the amount of physical activity patients do. Patients who are going to do affects the disease, we wanted to look into what amount of physical activity patients with migraine do, because we know it’s never been quantified, and we wanted to see if we can actually utilize this PAVS also in the field of migraine. So we took just positive cohort of patients with chronic migraine or episodic migraine, and we took the PAVS score, which is made up of the amount of days a week that they do any amount of physical activity and how many minutes each day. So you multiply the days by the amount of minutes each day to see if they do enough physical activity that meets the recommended guidelines, which is 150 minutes a week. And we saw how patients with chronic migraine do physical activity but less than patients with episodic migraine. However, the surprising fact that we saw is that patients who have migraine overall whether chronic or non chronic, on average do more physical activity than amongst the average general population in the United States, which means that patients with migraine are aware of the fact that they need to do physical activity as part of balancing their migraine headaches.

Joe Coe  02:51

That’s so interesting. And that’s a topic that I find personally interesting as someone who just became a personal trainer and nutrition coach who lives with migraine. So really excited I’ll check out this research Physical Activity as a Vital Sign really interesting. Thank you so much for your time and for joining me on Talking Head Pain.

Dr. Eyal Maoz Halevy  03:09

Thank you very much for having me.

Joe Coe  03:11

Thank you for listening to this special episode of Talking Head Pain, the podcast that confronts head pain head on. If you have any questions, thoughts or suggestions you can send us an email at [email protected]. If you enjoy this episode, please leave us an honest five star rating, write a positive review and spread the word by sharing it with your friends and family. I’m Joe Coe at the American Headache Society and I’ll see you next time.

Narrator  03:38

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

Narrator  00:00

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

Kelly Lorant  00:10

Our research registry is a place for people to engage in research and provide information about themselves about their condition about their disease activity and disease journey. And now it has been brought in to be more comprehensive of chronic disease in general.

Joe Coe  00:31

Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host, Joe Coe, Director of Therapeutic Area Growth and Integration with the Global Healthy Living Foundation, as well as Co-President of GHLF Canada. I’ve been a migraine patient for over 20 years, so I know firsthand how debilitating this disease can be. I am really excited today to talk to a colleague at the Global Healthy Living Foundation, Kelly Laurent. Kelly is part of the team that looks at our data and research and really helps us communicate it externally to our patient community. Today, we’re going to be talking about a survey that we conducted in a research registry and Kelly will explain what a research registry is. A research registry that was focused initially on muscular skeletal conditions, and now we’ll be focused on multiple chronic diseases including migraine. So we’re really excited about this entry point into an important body of research as well as an underserved patient community. Welcome, Kelly to Talking Head Pain. Yeah, thank you so much, Joe. So Kelly, can you tell us who you are and what you do at the Global Healthy Living Foundation?

Kelly Lorant  01:46

Absolutely. So I am the Director of Data Management and Analytics. I’ve been with the Global Healthy Living Foundation for about seven years now. I work really closely with all of the teams at GHLF. I work closely with research, I work closely with tech with education and support, as well as advocacy to make sure that their data needs are met, that we are collecting information from the people in our community that can best help serve the people in our community and give them access to materials, educational materials, advocacy materials that they might need, as well as connecting them with research that is useful for them.

Joe Coe  02:33

And that’s where we are today. A couple of us at GHLF wanted to learn about the current participants in our registry. So we produce a survey about migraine. What did we want to accomplish with the survey? Kelly?

Kelly Lorant  02:46

Absolutely. So with this survey, Joe, as you mentioned, our research registry is a place for people to engage in research and provide information about themselves about their condition about their disease, activity and disease journey. And and all of that information contributes to research. And as you mentioned, Joe, our research registry was previously focused on rheumatic and musculoskeletal conditions, conditions like rheumatoid arthritis, osteoarthritis, psoriatic arthritis, things like that. And now it has been broadened to be more comprehensive of chronic disease in general. And so we wanted to have an understanding of how the people who were already in our research registry, how they may deal with migraine and migraine headaches, because it’s not a condition that we were previously looking into in the past. And we thought that it was possible that people already in the registry with these rheumatic and musculoskeletal conditions also had chronic conditions like migraine. So we wanted to see if they did first and then we also wanted to see among the people who do have migraine, what their migraine was like, what type of clinicians they were seeing to treat their migraine, what they were doing, what medications they were taking, things like that to treat their migraine headaches and migraine attacks.

Joe Coe  04:13

Yeah, really important information. And I was really excited when I looked at the findings that we have here at GHLF. From the survey about how many people took the survey, Kelly?

Kelly Lorant  04:25

Sure. So we had 625 people complete the survey, which I think is a good indication that we’re already poised to start migraine research within our research registry.

Joe Coe  04:39

And how many of those people had episodic migraine which is up to 14 headache days a month versus chronic migraine, which is more than that? If you can imagine for those of us that don’t live in migraine, that’s a lot of headache days, even for episodic people. So what was the breakdown for episodic and chronic?

Kelly Lorant  04:57

Sure, so most people who responded to the survey reported having fewer than 15 migraine days a month. So episodic migraine and that was 83% or 519 people, whereas 96 people, or 15% reported having more than 15 migraine days a month.

Joe Coe  05:18

Kelly, can you explain to the audience what type of providers our survey respondents spoke with about their migraine?

Kelly Lorant  05:27

Absolutely. So I would say by and large people were seeing a primary care provider as well as a neurologist either currently or in the past for their migraine attacks. But I will say that as many as 20% of the people who responded to the survey reported that a healthcare professional has never talked to them about their migraine attacks. So that’s over 120 people, or like I said, 20% of the total survey respondents who are not receiving any type of care for their migraine attacks, and are not seeing a health care professional about those attacks. So that was really a striking number to us. And then another thing to consider, as well as the use of urgent care and emergency departments, we saw that almost 50% of people who responded to the survey have gone to urgent care or the emergency department because of the severity of the migraine attack that they were experiencing. So all these things certainly help us have a better understanding of what the people who’ve responded to this survey are experiencing with their migraine.

Joe Coe  06:39

And what were some of the commonly used treatments in this cohort?

Kelly Lorant  06:42

So over the counter medications were definitely most common. So that would be over the counter pain relievers were most commonly used. 83% of people reported having ever tried over the counter pain relievers for their migraine attacks. And then another common medication was triptans, resin triptan or Maxalt, you know. So those are examples of triptans. In terms of maybe more like therapies or not over the counter or prescribed medications ice therapy was pretty common use by about half of the participants who responded as well as vitamins or minerals like vitamin D, vitamin B2, magnesium supplements. Those are also reported as being used by about half of the participants.

Joe Coe  07:34

As a migraine patient, it makes sense that a lot of the participants in the survey are trying multiple treatments. It was interesting that most are not on some of the newer medications. And that could be something else interesting to look at in future studies, why they are on certain medications and not others. Something that I think is interesting, this cohort, this group of people that we surveyed, they opted into a registry for research purposes based on a condition other than migraine. So we’re looking at a very interesting subset of the migraine community, those with likely inflammatory conditions, what are some of the potential research questions that we might want to ask in the future? Looking at these groups together?

Kelly Lorant  08:20

Yeah, that’s a great question. Joe. I think that what would be interesting to see among this group of people is how their other chronic condition their inflammatory condition, like rheumatoid arthritis, etc, how that coexists with their migraine, you know, so what happens to their migraine when their RA symptoms are worse and what happens to their RA when their migraine symptoms are worse? And you know, so things like that, as well as how do their RA medications impact migraine attacks or migraine days and vice versa? How did their migraine medications have an impact on their RA symptoms? I’m using RA as an example. But you know, could be lupus or gout or different things like that different inflammatory conditions. So I think that would be a good place to start is, you know, what is the intersection between their two chronic condition?

Joe Coe  09:17

And what is so exciting for me from my perspective, is that now with this new property and program and initiative that we have called Patient Spot, which is absorbing the research registry that we talked about earlier in this podcast, as well as providing education and advocacy programs for people with all sorts of chronic diseases, inflammatory, oncology, obesity, so metabolic issues, it’s a really a spot for all patients and that’s what he called it Patients Spot. So it’ll be fun to see how we can look at a person as a whole person that has a lot of different things going on and they might have multiple chronic diseases they might have have different types of challenges and others. So patient spot is just a really exciting program that was just launched and will continue to roll out in a phased approach. Everyone is welcome to join it and participate, including migraine patients in terms of research and education. And if anyone has a research question that they would like to ask, I’ll give my email my personal email is the letter J, the letter C, the letter O, the letter E at the letter G H L F.org. So it’s [email protected]. If you have a research question or a comment about this episode, you can let me know there. Kelly, it was amazing having you on for this little update. We’re going to do so much more in sharing research and creating research in making sure that patients are at the center of migraine research at GHLF. So really happy that you were on and that you will be on in the future. Thank you very much.

Kelly Lorant  11:02

Thank you so much, Joe.

Joe Coe  11:05

Thank you for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you have any questions, thoughts, or suggestions for us, you can send us an email at [email protected] If you enjoyed this episode, please give it an honest five star rating. Write a positive review and spread the word by sharing it with your friends and family. It’ll help more people like you find us. I’m Joe Coe and I will see you next time.

Narrator  11:32

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

Narrator  00:00

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

Kellie Pokrifka  00:10

I have always had a really happy, optimistic disposition. And it wasn’t even at first after my TBI that I started feeling depression, I think it was maybe two years in and I just couldn’t understand what was happening. It got to the point where I didn’t want to be around anymore. It was just so much pain and so much to take on. But I was able to get that core disposition back and I don’t want anyone else to do that to themselves. I don’t want this gross stigma preventing anyone from getting help.

Sarah Shaw  00:47

Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host Sarah Shaw, Senior Manager of bipoc Community Outreach at the Global Healthy Living Foundation. I have been living with chronic migraine for almost 10 years and I’m very open about navigating life with my chronic disease journey as well as my experience living with anxiety. This podcast will be a window into other patients lives as they navigate their own journeys living with chronic pain, migraine and mental health. Today, we’re joined by Kelly Prokifka, a migraine advocate and TBI patient in the migraine community. We’ll have a deep conversation with her and leave no stone unturned in regards to Kelly’s chronic illness journey. We’ll be digging into depression, suicide among other mental health topics that often go hand in hand with living with a chronic illness. It’s important that we have these conversations to help battle stigma and help others feel less alone and get the support they need. Hi Kellie welcome to the podcast. How are you doing?

Kellie Pokrifka  01:44

I’m great. Thank you so much for having me, Sarah. I’m really excited to be here.

Sarah Shaw  01:46

I’m really excited to have this conversation. So Kellie, I like to start off every podcast by asking people what their worst migraine attack was like, Do you mind walking us through that?

Kellie Pokrifka  01:58

Yeah, that’s a tough one, I would have to say it was probably last summer, there was a point where I just couldn’t get out of such a bad vomiting cycle. And it got to the point that my my partner and my mom, they were begging me to go to the hospital. But I’ve had so many bad experiences with that in the past where you’re just dismissed. You’re not given help. You have to explain so much when you can’t even form a sentence together. So I was so resistant to it. And I think I was lying. Yeah, like in my bathroom. And the only point that I was like, Okay, you can take me If you will do all the talking for me if you’ll do all the advocacy for me, because I think I’m going to die if I keep going through this.

Sarah Shaw  02:40

Yeah, no, that’s a really good point that that you bring up we know as migraine patients, the emergency room is kind of one of the worst places for us. It’s really loud. The lights are super bright. There’s a lot going on. And it’s hard. I like that you brought up about your family members and loved ones advocating for you. I bring my partner along with me to almost every single doctor’s appointment that I go to where I feel that she can help advocate for me support me bring up things that maybe I forgot to mention because she sees me every day and she’s like, Okay, I know that you had a lot of migraine attacks last month, we should bring that up to the doctor or remember when you did X, Y and Z and I think utilizing our loved ones as part of our like migraine toolkit is like an amazing thing to help us advocate for each other. So I’m really glad that you brought that up and that your family members can advocate for you.

Kellie Pokrifka  03:28

So much so. I am 30 and i still bring my mom to like all of my appointments and it’s amazing. She is so diligent about note taking things I forget or if I’m flustered in the moment with so much to remember and so many things to bring up that you really do forget so many things and you get so anxious and there’s just so much and especially if it’s an ER situation like to do all the performances we have to jump through to get care in those situations. It can be near impossible when you’re feeling at your absolute worst and it’s just so nice to have someone you can trust and will drop anything to be there. It’s amazing.

Sarah Shaw  04:03

Absolutely. It’s really good. I’m glad that you have those loved ones and care partners you know at hand to help you with that. Just from you know being in the migraine world and just we all kind of like know each other but like haven’t always met I know that you have a TBI, traumatic brain injury. Do you mind walking us through the your traumatic brain injury diagnosis?

Kellie Pokrifka  04:24

YYeah, absolutely. So I was 19 and before this point, I didn’t have a migraine attack ever. I used to get carsick a lot as a child which looking back that was probably a I fainted a lot which looking back I probably had POTS my entire life, but we just didn’t really care too much about it just because like it wasn’t so prominent that it was controlling every aspect of my life. And so when I was 19, I went hiking when I was in college, and I got a tick bite and I got Rocky Mountain Spotted Fever, which we didn’t actually find out until maybe six months later when the doctor just did like a shot in the dark blood test and was like Oh, here’s what’s continuing all of the brain damage and etc. But then I went to a friend’s art performance and it was standing room only. And again, with the POTS, I’ve never really been great at standing. But definitely with the tick bite coming into play, I fainted. And I just hit my head. So all I was doing was standing and this was the worst concussion of my life. I had had so many before. And you know, you’d be over it and two days, so I never thought it was serious, you know, especially as a teenager, I thought it was sort of a badge of honor. You know, like playing soccer and be like, yeah, so tough like, please don’t do that. But anyway, so I was really bad. And I wasn’t really stringing sentences together. And my friend Holly was with me. And she convinced me to go to the hospital because I was like, I’m fine. Like, this happens all the time. It’s nothing. And then she was like, I want to call your mom. And I was like, I don’t know what she’s got to worry. It’s late at night. You know, she doesn’t live in the city. But she did. And thank God. And so my mom came up and then I just never returned to college for a couple years after. Until I was so excited. I finally got into what was considered like Virginia’s top neurologist, and it was two years after my concussion. And I was horrible. I was in such a bad state that I so desperately wanted to get some semblance of control and my life back and missed my goals. I missed, like my social life. And so I was like, So what do I have to do to get back to school? I need I will do anything. I would love to do anything. And that neurologist said the thought of me ever going back to school was laughable.

Sarah Shaw  06:37

Wow, that’s really, really horrible.

Kellie Pokrifka  06:39

But then, you know, that day, I was just like, Okay, well, if it’s never gonna happen, I might as well try now. So I went back that semester, and it was absolutely brutal, horrible, but I was able to finish, which is really cool. But still, even to this point, I can’t work full time. I can’t every second of my life is dictated by my symptoms, everything I do is dependent on this. So that was a really long, long winded answer.

Sarah Shaw  07:03

No, no, I appreciate you taking us onto that journey. And also the reality that that is the reality for so many people living with chronic illnesses like migraine like TBI, as with a bunch of other chronic illnesses, I think I first just want to address that when we’re in pain. And when we’re not able to do a lot of things, we can do them. But with accommodations, like we can do them, but maybe at a slower pace, or we can do them. But I’ll need to be in my bed with my laptop, or I’ll need like reduced screen time or I’ll need an extension on papers. And I’ll need time to take tests. You know, I didn’t start experiencing severe migraine attacks until after I graduated. And one of the things that I think would have made it really challenging for me is if I would have been more chronic when I was undergrad. But I also, you know, now learned that there were accommodations that could have been put in place for me, I was on a 504 program for my attention deficit disorder when I was younger. And all of this is relating to the fact that people living with chronic illnesses are valuable, we just interact with the world differently. And I want to touch on what you mentioned about you know, you can’t like hold like a full time job. And I wanted to connect that to what something that I know about you is that I believe you work with migraine at work. Do you want to like talk to us a little bit about that transition from not finishing university, but not being able to like work full time? What led you to migraine at work? Can you talk to us about that?

Kellie Pokrifka  08:28

Yeah, absolutely. And this is one of the things I’m most excited about. Because like you said, we can do so much valuable stuff. If we are just given accommodations, if we’re giving given the room to thrive. Even the professor’s when I went back to college, whether I was able to pass that class or not was dependent on what were the teachers willing to do? Did they roll their eyes and be like, Well, no, you have to be at the same playing field as everyone else. And being in a silent room isn’t really giving me a leg up on someone else. But it would make it possible for me to actually go through this. And that definitely translates into my work for migraine at work. Because if people just took these accommodations seriously, the amount of value we could bring to every situation is just so much and disabled people have so much to offer. And we can do so much. But it’s often just so dismissed because people are fearful of the unknown. And they’re afraid like oh, what if I do this and it might be they make up these situations in their head that we’re just gonna abuse the system. And that’s just not true at all.

Sarah Shaw  09:33

There is this stigma especially against invisible illnesses for like migraine, fibromyalgia, even like mental health like anxiety and depression. I feel like society puts this pressure on us that we’re not even pressure but they perceive us as being quote unquote lazy or taking advantage of the situation that could be like the farthest thing from the truth. Like I don’t know how to explain this, but we want to do everything we just need the world to interact with us differently. And then we can work alongside it. And I just wanted to touch back about what you’re doing at migrant at work and how you’re helping so many people.

Kellie Pokrifka  10:10

Yeah. So back to how you asked, like, how did I get involved with all of this, I was able to just live with my parents and not work after college because I truly was not able to. And I was very privileged. I love them a lot. It wasn’t like a bad situation. Most people don’t have that I felt very lucky. But I was able just to sort of do full time research. And I always wanted to be a neurological physical therapist. So like working with Alzheimer’s and stuff like that. So I love being able to break articles down and make it actually accessible to patients that worked really well. So for a while, I was just able to research and research and I had my own website where I would put the blogs, and it’s called concussion gameplan. And then I found the Migraine World Summit. And it was like the best resource I had found thus far. And I really loved it. And so I started volunteering with them. And I’ve been doing their social media along with a huge team since that point. And through that I got close with the founders, especially Carl, and he was like, You’re good at this, like you you can do this, would you want to come on for migraine at work? It’s one of our associated nonprofits, you know how to like he went through a similar thing, he had to quit his job entirely. He had his entire life dictated by chronic migraine. And because I have my boss who gets it and knows, like, I cancelled the meeting five minutes before, it’s not because I’m flighty, or I’m flaky, it’s because I can’t I’m trying my hardest. And I just wish everyone could have that kind of support. So what we’re doing for that is we’re trying to get even just education and accommodation programs into workplaces, there’s been a lot of studies that, you know, most people with migraine are not, you know, on our level, they’re not dealing with this 24/7. They’re not dealing with this constantly. And there’s so many people, especially who are still episodic, that if they had the education, they could turn their lives around, and they could never go down the alleyway of chronic migraine, it could never get to the intractable state. And even if they are in that intractable state, if their employers are willing to provide this education, these new medicine options, these like accommodations, there’s just so much that we could be doing and making workplaces available for people like us. And I think that’s truly amazing. And so I love it. I love getting on webinars and just telling people that hey, even if you’re like, you know, migraine is largely genetic. So a lot of us have had relatives who are like, Oh, I went to the doctor, and they said, There’s nothing you can do. So don’t waste your time. But like 2018 you know really changed the game. It was the first preventative actually designed for migraine. And there’s just so much now that people don’t know if they’re not living, breathing, reading, researching migraine all day.

Sarah Shaw  12:56

It’s it’s really ironic what you bring up. I remember when I first started working out of college, that was three months later, I had my first migraine attack, it was episodic. And then throughout the years, it went from episodic to chronic. And during my like, I’ll call it My migraine journey to getting more educated about it and talking about it when I was hospitalized. And I had to kind of tell my employer, like I’m in the hospital for these migraine attacks that just won’t break. And it was just so interesting how when I like came back to work, like four or five other people were like, oh my god, I get like, I get migraine attacks too. And it was just like this thing of just openly like talking about something that they were like, oh, yeah, I get this. And I see this neurologist or I do this. So everyone was kind of walking around with this knowledge. But because we weren’t talking like about our pain, because in society, especially as women, we’re not supposed to like talk about those things. But it just I saw like a light bulb go off. And the next employer that I went through the same thing, like I was more confident than I was like, Yeah, I get chronic migraine. I get like 15 Plus headache days per month. And they’re like, oh, yeah, I get migraine too. And I see a neurologist, and it was just this theme that kept happening again and again. And I just feel like if we all would have talked about it and like shared resources, we could really help a lot of people like get on like better treatment or even see like a neurologist, there were a few people that I had come across, they’re like, Oh yeah, I get migraine attack. I’m like, Oh, are you seeing a neurologist? And they were like, no, but some of it also has to do with like access to you know, insurance issues, like we talked about all of these things. And just I was listening to what you were saying about you know, if it’s genetic and someone in their family has it, but then they’re like, Oh, I went to a doctor and they didn’t do any help are not going to help you. And I think we’ve really seen migraine education resources, medication like evolve especially like you mentioned since since 2018, and know that these newer treatments and better treatments are out there. It’s such a shame that there are so many people that just don’t have access like games, they don’t have the education don’t have the access to the education And what migraine at work is doing is putting that at like the center of discussion so that way employees can get better and feel better. I just I think the more we talk about it, the more we have webinars and podcasts and articles that talk about something that for so long, so many people, especially women, we’re not talking about, we’re just grinning and baring it, I think is so important. I talk a lot about like mental health on this podcast. And I like to bring it around of what do you do for yourself that like is like feeding your soul as you’re doing self care?

Kellie Pokrifka  15:32

Yeah. So that’s, that’s a big one. I think it’s important for me to like, go back. So I have always had a really happy, optimistic disposition. I think I was born that way. I think that was my just overall, like, I always want to every person I met, I want to be their friend. Like I want to have so much fun always. And it wasn’t even at first after my TBI that I started feeling depression, I think it was maybe two years in. And I just couldn’t understand what was happening. It got to the point where I didn’t want to actively kill myself. But I knew that the next time I got really sick, because my immune function had been severely impacted by it, I was just not going to go, I was not going to tell people, I was not going to go to the doctors. And I would just let that happen. So that way, my loved ones don’t have to deal with it. But I just I didn’t want to be around anymore. It was just so much pain and so much to take on. And I don’t because it was a slow gradual process. I don’t even know if I recognized it as depression at the time. And because I always thought, Oh, I’m so happy. Like, this is great, yada yada. Whenever one of my doctors suggested that I really pushed back. And then I think I was sort of in my mind, I was tricked into taking antidepressants, because they’re like, Oh, it’s a migraine preventative. And so that way, I was like all the stigma I had like about myself, and I wasn’t being grateful enough. And I wasn’t realizing I still got to live with my loving family. And I just I hate that I had that. But I did. And then I realized, Oh, my life is okay. Again, this helped a lot. Why did I go so far denying this when life is hard enough? Give yourself help. Like, why would I contribute like that extra stigma to what I was going through was a terrible thing to do to myself, like I could have gotten so many, like a couple years of my life back where I didn’t just truly hate every minute. And I hate that I had that. But like you said like the caregiving thing, like, I would never say that to someone else. But I felt it for myself. And it sucks. And there’s like one stat that I was even saying and like telling to other people, but it was nearly one in five brain injury survivors report suicidal ideation plans or attempts in the five years after, and but for some reason, I couldn’t be like, Oh, but that’s also me like something about it. I was just not being honest. And it was horrible. I hate that I did that. But I’m so glad that someone quote tricked me into taking medication and helping myself get through that and I didn’t need it forever. And then once I got to a place where I wasn’t sobbing every day, I could take like some of my other like self care and like treatments that were more holistic and like more things I was a little bit more comfortable with, then I can get back to that place of like happiness and feeling so much pain and there’s still so many days I like break down all the time. But I was able to get that core function and like that, like disposition back. And I don’t want anyone else to do that to themselves. I don’t want this gross stigma, preventing anyone from getting help and letting themselves suffer to a degree we’re already suffering. Life is hard. Life is hard for every person, like give yourself a little help. If you need help, don’t try to you’re not tougher for not getting help. It’s really hard to get help.

Sarah Shaw  18:54

It’s very hard to get help. And I want to touch on a few points of what you said Kellie, like number one, being gentle on yourself. You know, I think it’s really hard with mental health and I live with very severe anxiety when you’re in it. It’s really hard to see what it is that you’re going through until you’re able to take a step back and be like okay, I went through a really bad patch for five months where I was having this and I feel like I also have to state that I appreciate this statistic that you brought up about TBI patients anxiety and depression go hand in hand with migraine. I feel like there’s so many people that I talked to where they have one or the other anxiety or depression and migraine or just anxiety and migraine or depression and migraine or C, PTSD and migraine, I feel like it’s so common, but it’s not talked about enough. And you talked about stigma. And we talk about the way the world views mental health and even like growing up in TV shows and movies, depression and anxiety were kind of taboo, or like seeing like a therapist, which they used to call shrinks. There had to be something like wrong with you and like, you’re like, you know, you’re like broken and like you need like to see professional to get help. And like it was like, Oh, you need a shrink. And like now looking back I definitely internalized society’s the way that that society views mental health, anxiety and depression to the point where even though I was I said, I was like a mental health advocate five or six years ago, when I suddenly got diagnosed with anxiety, and I had my first panic attack. And I was prescribed anxiety medication, I felt the shame of needing to take a medication for my anxiety. And my therapist, and I had a really like candid conversation about it. I brought it up to her. And she was like, Sarah, when you get a migraine attack, do you take your medication? I was like, Yeah, of course. No, I do. And she’s like, why can’t that be the same for you when you have anxiety? And we obviously went through the background of like stigma and society and women and all of these other barriers, such as, like, being a woman of color, a queer woman of color, like all those different like layers that like get us to this point. And I think you brought up a really important point about depression and suicidal ideation. And bringing up such a topic on a podcast, I think is really important for other people to hear to one know that they’re not alone. And two there’s this meme that like I always see, like going around on Facebook and Instagram and Twitter, or x is it’s a pill bottle, and it’s like, full of like cats. And it’s like store bought neurotransmitters are absolutely fine. Like, it’s okay, if you need to get your dopamine from like medication. And I want to see more of that I want us to continue to have these conversations to let people know there’s nothing wrong with you that you just need a little cat prescription to get you through your day or to get you through a really rough patch. And it doesn’t matter if it takes two months to a week to six months, however long you need it to get back to that level, that’s okay. And we’re gonna have bad days being in pain sucks. It does. I’m not gonna beat around the bush with that. But I think sharing stories like yours, talking about the real things, let’s so many people know they’re not alone, and that they have a buddy to get through those rough spots. So thank you for bringing that up and having that really vulnerable conversation with us. And for our listeners.

Kellie Pokrifka  22:01

I feel like very much like what you’re saying, first of all, yes, I love that meme. But also, I felt that way. When I saw medical PTSD in my chart, I was like, that is so wrong. I have so much privilege. How could I have PTSD you know, like, I didn’t suffer like a horrible, like mugging or I didn’t go to war, yada, yada. And I thought it was somehow taking away from other people to say that I had that. And no, not at all. If anything, it’s supporting them knowing that it doesn’t have to be this ridiculous option. I went through so many doctors telling me this wasn’t real, or this was you know, just get over it. And because I had never heard of like medical PTSD, I said there was no way because I never did anything brave. I was just going to the doctor. And for some reason I thought that would take away from other people’s pain. And that’s not how the world works at all.

Sarah Shaw  22:53

Yeah, going to the doctor is brave. It is like, I feel like I have to gear up, have all my lists. Okay, here’s my list of things that I need to bring up to my doctor, like, Okay, let me start back when I was 12, and walk you through my entire history, I think, you know, going to the doctor is brave, it’s vulnerable. And also it can be really good. Like I have now some really great experiences with a few of my doctors, they know me, you know that I’m an advocate, I’m able to have conversations with them about what has worked, what hasn’t worked, what I’m traumatized by, you know what I mean? I feel like that’s what I wish for everyone is to have these conversations with their doctors to not only help them feel good, but feel good longer. I want to thank you, Kellie, for coming on the podcast today and having this conversation with us. I know that it’s going to impact a lot of patients. So thank you for coming on.

Kellie Pokrifka  23:40

Thank you so much for doing all of this. It’s incredible. And I love it. And I think it like you said it is helping and reaching so many people and so many groups that just get passed over and I think with all of the work any of us are doing if it touches one person who had no idea that other people were going through this I think it’s so incredible and so important and I’m so proud and I thank you for doing all the work you’re doing.

Sarah Shaw  24:03

Thank you for listening to this episode of talking head pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating write a positive review and spread the word by sharing with your friends and family. It’ll help more people like you find us. If you or a loved one are experiencing mental health related to stress, particularly if the thought or feeling is new or has increased recently, you can call or text the National Suicide Prevention Lifeline at 988 for help at any time. This lifeline provides free and confidential support for people in distress prevention and crisis resources. I’m Sarah Shaw and I will see you next time.

Narrator  24:42

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

Narrator  00:00

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

Avi  00:10

“I think disabled people just for their own well being, because it’s so hard being gaslit so constantly, like so continually that like, you start to not believe yourself, like even myself, like sometimes I’ll be like, maybe I’m faking it. And I’m like, I’m by myself. I’m in debilitating pain, like and I’m not faking it. But when you hear it, like almost every day, your whole life like you start to believe that even when you don’t want to.”

Sarah Shaw  00:31

Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host, Sarah Shaw, Senior Manager of BIPOC Community Outreach at the Global Healthy Living Foundation. I have been living with chronic migraine for almost 10 years and I’m very open about navigating life with my chronic disease journey as well as my experience living with anxiety. This podcast will be a window into other patients lives as they navigate their own journeys living with chronic pain, migraine, and mental health. Today, we are joined by a special guest, his name is Avi, he is a person living with migraine disease, as well as a couple other chronic illness conditions, which we’re going to dive into in today’s episode. Hi, Avi, welcome to the show.

Avi  01:15

Hi, thank you for having me. I’m so excited to be here.

Sarah Shaw  01:17

I’m really excited to have you on. So one of the first questions I like to start each guests off of asking is if you could use one word or attitude to describe your migraine attacks. What would it be?

Avi  01:31

I mean, like probably nauseous, have debilitating nausea from it.

Sarah Shaw  01:36

Yeah, and I’m nodding, people who can’t see on the podcast, I’m nodding my head along in agreement because I’m in let’s see a six day migraine attack right now. And the nausea is like I don’t have the head pain today. I just have that all encompassing nausea, where you don’t want to eat something. But you know, you need to eat something. Eating something will help make it go away. But you can’t. It’s a vicious cycle.

Avi  01:58

Yeah, I mean, I mostly have the symptoms that people wouldn’t associate with, like classic migraine, the way that people just think of migraine in general, as like headaches. If I get a headache, like it’s all about the photophobia. It’s all about the aura. It’s about the way that like, that makes me nauseous. And then it really affects the GI system. And people don’t talk about that. Like I literally had the diagnosis of migraine for like 15 years before anyone was like, hey, it does things other than headaches.

Sarah Shaw  02:25

Right.

Avi  02:26

Like my mom has it like everyone in my family has it. And we still didn’t know.

Sarah Shaw  02:29

Would you be able to talk a little bit about this feeling right of having these symptoms, but not having a diagnosis, but you your family has this history of it being in the funeral, but nobody kind of talks about that? Do you want to dig into that a little bit?

Avi  02:43

It’s sort of mind blowing, because it’s not like these people, my relatives and like the people who came before me who also had these conditions. It’s not like they weren’t trying to find help. Even most recently, my mom raising us, like she went to doctors and asked for help. Like, she went to multiple different types of doctors and asked for help. And like they routinely were just like, no, there’s nothing wrong. Like we went through so many evaluations as children and like almost nothing came of it. So it’s just like this hopelessness, like interacting with the medical system.

Sarah Shaw  03:12

Especially when you are living with an invisible illness, right? Something that people can’t see. And then you add on being either a woman or a person from the LGBTQIA plus community or add on the layers of if you’re someone from a marginalized community, like it’s so hard for us to get the care that we so deserve, especially when you can’t see our pain, right? It’s invisible. And I’m sorry that you and your family have had to go through that. And something that we’re really passionate about here at Global Health Living Foundation and Talking Head Pain podcast is making sure that patients’ stories that typically do not get told are given the microphone to tell their stories and Avi and I met through a group for queer people living with endometriosis, and we got to talking and we also found out that Avi also lives with migraine attacks. And I think it’s so interesting the intersections of being a queer person and living with an invisible illness such as chronic migraine or endometriosis. And Avi I’d liked if you wouldn’t mind talking about your experience as a trans man and non-binary person living with migraine attacks. What has it been like for you navigating the healthcare system?

Avi  04:34

I mean, in general it’s just like this is exhausting thing that I have to do like it’s frustrating because you know, going into it that like the best case scenario is not super great. And every time like my legal name has not changed yet it still I have to deal with that whole rigmarole every single time and like a lot of these places don’t really see the danger in outing a trans person in their lobby, but I’ve been like followed back to my car and like harassed by like random people in the lobby because like, you never know who’s there, they’re just other patients. So I’ve had to address that with all these different clinic systems. And that’s before even getting into the care. And when you’re talking about care for, like different things going on at the same time, like when I went on testosterone, like, my aura got worse. And I’ve thought about it a lot over the years about whether I want to stay on it or not. And a big reason that I am staying on it is because it is probably helping not, you know, the endometriosis not get like, much worse, because if I was just with my natural estrogen, like that’s not good for that’s gonna flare the symptoms. So it’s just this annoying, like thing where I have to like pick one.

Sarah Shaw  05:38

Yeah, that’s exhausting the kind of like, you have to choose your battles, which verses which and when you live with comorbidities, it’s kind of like, okay, what can I do to help the one that isn’t going to make the other one worse? And yeah, that’s something that I’ve had to have discussions with my OBGYN and my headache specialists. And if you add another layer of being a non-binary person and a trans man into that, we’re talking about testosterone, like that’s something that you have to have serious conversations with your providers about and you want to feel safe, having those conversations with your providers. If you can’t even get into the lobby and you’re dead named. How does that make you feel like you can go into the situation feeling heard, seen, validated, and safe?

Avi  06:28

Yeah, I mean, right off the bat, it like damages the relationship with whichever provider you’re going to be seeing, because you’re already dysregulated. And I have a diagnosis of like, just autonomic dysfunction. And I know part of it is like inappropriate Tachycardia Syndrome. But there’s other stuff that we’re not sure if it’s something with a specific diagnosis. But in any case, the triggers for that, I mean, like with all these conditions, right, there’s triggers. So with my dysautonomia, big triggers are like stress, like very bad stress. So having to worry that I’m going to deal with an entire lobby full of people asking you about being trans knowing that I’m trans, all this stuff, like it makes it hard just to like keep my heart rate down for when they’re going to be taking my blood pressure and everything. Like I get comments all the time, they’re like, oh, it’s high. I’m like, yeah, that’s because you guys have been stressing me out. Stop it.

Sarah Shaw  07:16

I have high blood pressure, I know that going to the doctor, in general is a very stressful experience. Like maybe we should be playing some calming music when we go into there and maybe not have the light so bright or making the atmosphere more patient-centered. And I think that leads into my next question, which it shouldn’t be but you know, how would you like health care providers and practices to engage with the LGBTQIA plus community to make their practices more welcoming, more gender-affirming, you know, I know the word safe spaces. It’s hard to find these days. And I don’t use that term lightly. But what are ways that they can make it a better environment for patients like you?

Avi  08:00

I think that the number one way that these places could genuinely enact, like actual change is if they start hiring actual trans people to do the teachings because they’re not hiring trans people at the moment, like I have been dealing with Patient Relations at all these different clinic systems. And there’s one large clinic system that my whole team used to be at, I would ask them, you know, I’m getting dead named and misgendered at the gender clinic, like, why is this happening? And they finally got me an answer on like, who exactly provides their trainings, and it was the head of the gender department at this large clinic system. And she’s a maybe like, 70 year old white cis woman who I had an appointment with in like 2017 18, something like that. And she is very fatphobic. She told me at the time that like, I shouldn’t get top surgery until I lost a lot of weight because it wouldn’t be aesthetically pleasing, which is just like her saying that she wouldn’t be attracted to me. So why would I do it? Like, why would she say that to a patient? That’s so weird.

Sarah Shaw  08:55

That’s not necessary in my patient space at all.

Avi  08:58

Yeah.

Sarah Shaw  08:58

That doesn’t make you feel safe and doesn’t make you feel like your top surgery shouldn’t matter on that level to her.

Avi  09:04

Yeah. And it’s not that it matters because everyone every size should be able to access surgery, but my weight was not even at the limit. They’re like, where they worry about if you’re gonna be able to fit into machines and stuff like that. It wasn’t even like that. And I was bed bound for like that year. So she knew that I wasn’t going to be able to get up and exercise regardless. And then after, you know, top surgery, not only is that weight gone off your body physically, but you then you usually lose some more weight because you’re able to walk around and do things that you enjoy and feel confident in yourself. Oh, it’s just silly. If she wanted me to lose weight, that would have been the way to help me do it. But instead she like actively like she sent a message to my surgeon saying that the surgeon should gate keep me from it until I lost weight. She told me that it’s fine to refer to all trans people as transsexuals. And there’s like 2018 and I was like, no, that’s not fine. Like, why would you think that’s fine? And so she’s the one who’s providing like these trainings to the entire system, which is probably almost 100 clinics like in the metro area here in hospitals as well.

Sarah Shaw  10:00

Not good representation is so crucial and so important in healthcare settings. And this is the gender clinic, there should be transgender people on the team helping, I don’t want to say guide, but helping be that representation to have these conversations. I think, you know, as someone who just started seeing my very first queer doctor two years ago, it makes all the difference for me and I think everyone should be able to get equitable care. There should be that representation filtered throughout healthcare. And I think you helped answer my question. Absolutely, it starts at the top. And if there is not representation, helping guide these practices, and helping inform medical procedures and ways interact with patients and what to not say and what to say that is so crucial, right?

Avi  10:54

Yeah. And there’s this other clinic system, like a different one that I’ve been working with recently. And it’s been a much more positive experience, just like their entire response to when I have a complaint or whatever is completely different. But they are using my free labor to change all of these things that they should have hired a trans person to come and assess, and, you know, analyze and see like, where are these gaps in equity here, and I’ve told them this and like, you should hire somebody, like, you shouldn’t just wait for me to point things out and have it all be my free labor, even the best places, at least they’re listening to me, but like they’re exploiting. When I’m there for an appointment, I’ve literally offered to them, I was like, I will provide I don’t even need to present, you could have somebody else present it. But I will provide materials to teach these doctors because I don’t have time in my 20 minutes with this doctor that I have to talk about all my complex medical issues to also like teach them about trans stuff like that needs to be a separate thing.

Sarah Shaw  11:47

Absolutely, absolutely. You shouldn’t be there to give a lecture, we are there to get care for yourself, and you’re there to feel better. And that should absolutely fall on the office to implement and to learn and to be better. These are conversations that are really important in that I think we need to be hearing and the conversations that need to continue to happen. And I hope that the people that are out there listening to the podcasts are willing to make changes. And I think waking up and like realizing that we need to be all in. But I think when you get into less cities, and when you’re more rural, we see those go far and few in between. And it shouldn’t matter where you live, you should be able to get good health care, no matter where you live, and you should be able to feel good and feel safe and not feel like you’re giving a lecture on hey, here’s trans 101 when you’re at the doctor, right?

Avi  12:42

Right. I mean, the system is so stressed. It’s obviously people are leaving, there’s a whole parts of the United States now that are like struggling to find any OBGYN. So obviously, there’s all this stuff going on. And at the same time trans people are applying that pressure, people are standing up for themselves, disabled people are standing up for themselves. But yeah, I think that people need to research their disability advocacy history, because that’s intentionally not being taught. They don’t want us to know about the the file for sit in, they don’t want us to know about how we got the ADA in the first place. Because like these things are relatively recent. And like they don’t want us to know about ugly laws, like about like, where disabled people literally weren’t allowed to just be seen in public. So I mean, there’s all these different intersections here, we’re talking about, like trans people with bathrooms, like, all this stuff is being brought back.

Sarah Shaw  13:30

Right.

Avi  13:30

And so I think like disabled people just for their own well-being, because it’s so hard being gaslit. So constantly, like so continually that like you start to not believe yourself. And I’ve known so many disabled people who are like even myself, like sometimes they’ll be like, maybe I’m faking it. And I’m like, I’m by myself, I’m in debilitating pain, like, and I’m not faking it. But when you hear it, like almost every day, your whole life, like you start to believe that even when you don’t want to. So I think that researching that history and seeing that people did make a stink, and they did get things as a result of that. And and that’s the only way we’ve ever gotten results.

Sarah Shaw  14:02

Yeah, I agree. And I think that’s why having these conversations having you on the podcast, being that representation showing the medical community, hey, listen, there are trans people out there that are trying to get care that are trying to go to your facilities that are trying to get medical treatment, but we need more and we need your places to be safer for us. Right now, the climate in the U.S. there are a lot of anti-LGBTQ, specifically anti-trans, like laws going out that are really harming the community. And one of the ways that the healthcare system can help is by not doing that by making the one place that we should feel safe, safe enough for trans people. And so I just appreciate you talking so openly about your experience and knowing that your story is going to be heard by other people and hopefully we can make change happen and make another trans person out there feel like okay, like I can do this I’m not gaslighting myself, I know that these things exist and I can advocate for myself and it takes a team it takes patients speaking up, it takes the healthcare systems cooperating, it helps them being more gender-affirming, welcoming all those things. And with all those things comes obviously like mental health, right. And I talk a lot about mental health on the podcast, I live with anxiety. And I’ve really come to talk more openly about living with anxiety and how debilitating it can be. But I also know that there are different things that they can do to help manage my anxiety and being a non-binary person, Avi, a trans man, what are the little things that you do for yourself to take care of you, when you’re dealing with all the things that are happening being a person living with multiple disabilities?

Avi  15:50

The little things as an autistic person, I take a lot of refuge in music, that’s one of my favorite stims. And I can listen to the same things over and over again, that I’ve been listening to since I was a child. And it’s very regulating for me, I use Silly Putty when I’m in a stressful situation, like I can just and it’s relatively, like, not going to attract attention. It’s not going to bother other people there. So it’s one of those ways that they like, allow you to stim you know what I mean? Yeah, yeah, they’re like, oh, yeah, it’s normal for a guy to just play with silly putty. That’s normal. When it’s like, no, I’m actually being autistic right here in front of you. So yeah, I mean, unmasking for me has been a key part even like in literally like in the health of my like, neuromuscular systems. And I think it’s important,

Sarah Shaw  16:31

Absolutely, do you find that like, I know, for me, a big part of my self-care is community and being with people who share similar chronic illnesses as me or people who are like the endo queer community, or just like finding migraine people that are queer that also, you know, live with my chronic illnesses. Those have been some really, I don’t know, healing, like things of being in community. You talk about being disabled and being in the disability community, have you found that within your circles?

Avi  17:02

Yeah, I mean, I think that community is a concept that I didn’t really grow up with much of as a white American with not much not much tangible connection to my cultural background, I think coming into community has been feeling like you said, and to see reflected, it’s been healing. But it’s also been painful, because I have to see that not only have I gone through all these things, but the system has done this to all these other people. And so you have to sort of sit with that massive pain. I think a lot of Autistics struggle with low empathy, but also with hyper empathy. And so the feeling of hyper empathy of just feeling like everybody’s pain can be just so overwhelming that of course, then you swing back to the low empathy to try and take care of yourself. And yeah, so seeing their pain is difficult. And it’s like the I don’t remember who said it, but it’s, you know, let this radicalize you rather than lead you into despair. Seeing other people and like organizing with them is the only thing that matters. That’s how humans came to be successful. And we’ve somehow like lost touch with that with this, like individualistic nuclear family experiment. That’s just so terrible for all of us.

Sarah Shaw  18:07

I’m a big proponent of chosen family, and finding my people and finding the people that uplift me, and who I can uplift as well. Like, I feel like there’s not enough empathy and not enough compassion these days. And I feel like when I think about the disability community, the migraine community, I feel like and the LGBTQ community, I feel like those intersections, like the little advocates that are coming out and standing up for themselves and being like, we’re not going to take it and it gives me a wonderful sense of pride and hope that we’re in this together. And we’re there for each other. And I think that’s why I brought up community because I feel like in some ways, it’s been a saving grace for me.

Avi  18:49

Yeah, I was just thinking like brought to mind these two different creators that camp on my for you page on TikTok in the last week that they do some gentle parenting content, but it’s like specifically for their like autistic families and just seeing like them talk about like a restraint collapse, which is like when kids come home after school, and they’ve spent all day highly masking and now they can finally they’re in a safe place. And so that they can act like wild little kids and how like misunderstood that wasn’t my own childhood. But to see like these parents that are like millennials, young Gen X, actively recognizing like the neurodivergence in their family and like working with it rather than against it. Like it makes me sad for things that could have been and it makes me so happy to see that things are changing.

Sarah Shaw  19:34

And representation. Like I feel like it’s just so important for our own journeys and seeing people speaking up and seeing the generational boundaries like like us breaking generational ties, and being able to do our own healing and to see ourselves reflected and like in other people, and it gives me hope so I appreciate you bringing that up, Avi, and I appreciate you coming on the show. It’s been wonderful talking with you learning more about you and sharing your story and your experience. And I do hope that things get better. I know that it’s a long journey, but I do have hope. And I think it’s a team effort for us to all keep working together. And I’m glad that we have our little things that give us hope and bring us back down you’re able to unmask at the end of the day and be your authentic self.

Avi  20:23

Yeah, yeah, I think there is hope. Definitely. And I think that it definitely lies in community.

Sarah Shaw  20:28

For sure, for sure. Thank you for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating, write a positive review, and spread the word by sharing with your friends and family. It’ll help more people like you find us. I’m Sarah Shaw and I will see you next time.

Narrator  20:50

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

Narrator  00:00

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

Amanda  00:06

“The online space that we have in the migraine community is so invaluable, especially the women doctors in that space who offer their own time to educate the community. They’re invaluable because I’ve learned so much from them. And it’s like, gosh, I wish I could have learned this 10 years ago.”

Sarah Shaw  00:30

Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host Sarah Shaw, Senior Manager of BIPOC Community Outreach at the Global Healthy Living Foundation. I have been living with chronic migraine for almost 10 years and I’m very open about navigating life with my chronic disease journey as well as my experience living with anxiety. This podcast will be a window into other patients’ lives as they navigate their own journeys living with chronic pain, migraine, and mental health. Today, we’re joined by Amanda, a chronic migraine patient, a parent, and a person living with multiple chronic illnesses. We’re going to dig into mental health, parenthood, and navigating chronic illnesses and mental health. Hi, Amanda, welcome to the Talking Head Pain podcast. I’m so happy to have you on today.

Amanda  01:16

Thank you for having me, Sarah. It’s nice to be here.

Sarah Shaw  01:19

I like to start each podcasts off by asking our guests you know, if you could use one word or adjective to describe your migraine attacks, what would they be?

Amanda  01:28

Currently I would use the word dynamic for where I am in my disease journey.

Sarah Shaw  01:33

Do you mind going into that a little bit dynamic?

Amanda  01:36

So I am 41 and entering perimenopause. And my headache specialist has kind of discussed with me that for a lot of his patients when they are people who have a uterus and they are going to enter perimenopause that they can see that their disease may start to change. And I have seen that happen kind of rapidly. And I kind of thought having dealt with my migraine disease since I was a child. I kind of knew what my disease was. And I could kind of coast but my disease has become more dynamic and it’s changing. My symptoms are changing. My auras are changing. I’m having different migraine subtypes that I never have experienced before. And I’m having to learn new things about migraine disease that I didn’t expect or anticipate I would have to do at this point in my life.

Sarah Shaw  02:34

Yeah, thank you for going into that. You mentioned that you have had migraine since you were child, do you mind just walking us through your migraine journey?

Amanda  02:44

Yeah, so I don’t remember when I had my first attack. Because of some other childhood trauma. I don’t have a lot of memories of my childhood. But I just remember migraine always being a part of my life. My mother has migraine disease. And it was kind of just for me a normal part of life, which I know sounds kind of silly. But it wasn’t until actually a couple years ago that I had the realization that it wasn’t normal for a person to be having daily migraine attacks. And when I say that to people who are outside of the migraine community, or the chronic illness space, it seems really silly to them. I’ve had people laugh and say like, oh my gosh, that’s silly. That’s ridiculous. That’s wild that you would think that but I think people inside the migraine community or the chronic illness or the disability community understand what that might feel like, especially as children of people with migraine disease. Because we normalize being in pain, we normalize, living and pushing through those attacks, especially, you know, my mom parenting and running a business out of the home and me parenting and being a stay at home parent educating, you know, being a homeschooling parent and to have that kind of realization in my mid 30s. I felt silly, but it was like, oh, wait, I shouldn’t have pain like this every day. And it wasn’t until after my child was born that I even decided maybe I shouldn’t just have my family doctor treating me for this. Maybe I

Sarah Shaw  04:24

Right

Amanda  04:25

should go see a neurologist. I grew up in a family where we didn’t really go to the doctor go to the emergency room. We didn’t go to the hospital. We just kind of pushed through and we dealt with it. So it was hard for me to say okay, maybe I do need to seek care for this to try to improve my quality of life. So it was a big deal for me to accept that I needed help. I needed to get a doctor involved and try to do something to make things better.

Sarah Shaw  04:50

Yeah, in general, we as a society, especially with women, we don’t really talk about pain because I feel like we are afraid of it being used against us. And also if we talk about pain in families, if we see our parents or our grandmothers or our aunts or people living with pain, if they can, quote on quote, push through the pain, we feel like we need to push through that pain as well. And I appreciate what you said about you know, really, I why had a child I feel like I needed to, I guess sort of like break those generational habits. Things should change.

Amanda  05:24

That’s absolutely it Sarah. Yeah, as a mother, I had that realization, how do I want my child to view herself growing up? Do I want her to prioritize herself? And I do. And I think the best way to teach her to prioritize herself, if she’s in pain is to show her that as a mother, I’m doing that I’m taking care of myself, and I’m seeking help when I need it.

Sarah Shaw  05:49

Right.

Amanda  05:49

The same way, like we talked about for mental health, you know, I needed help with my anxiety, I needed help with my depression that I struggle with, and I want to teach her, it’s okay to do that. And it’s the same thing for help with migraine, I needed help, I couldn’t just go to my GP who was prescribing me a medication, you know, I can’t take NSAIDs because of another medical condition. So I was getting a medicine that I shouldn’t have been prescribed, I didn’t know about medication overuse adaptation headache, I was going through fertility treatment. So it was just, you know, throw this at it because you can’t take anything else. And now all of a sudden, you’re chronic. And you’ve got daily high frequency high severity attacks, and it’s like you need to do something about it.

Sarah Shaw  06:34

And that shouldn’t fall on you as the patient. There is so much stigma still with migraine being such an invisible illness and not being taken seriously where people are getting misdiagnosed, or maybe not given the right medication, because they’re seeing their GP, their general practitioner, because sometimes that’s all the people have access to.

Sarah Shaw  06:55

People don’t have access to neurologists or headache specialists. And what we need to change is for people that can only go to see their general practitioners, there should be more education about migraine disease, and how to treat migraine disease properly so that way our patients, patients like you are not getting over adaptation, headache, they are given medicine that makes them feel good and feel better, or they’re given medication that works properly. And it sounds like your experience fell into that category.

Amanda  06:55

Right.

Amanda  07:26

Yeah, it absolutely did. I look back at what my history has been, especially for a medication, and I feel embarrassed. And I shouldn’t have to feel that way. I feel silly that I wasn’t educated, and I’m an educated person, but I wasn’t educated about my own disease that I couldn’t advocate for myself to my GP to say you shouldn’t have given me this medication, you shouldn’t have told me to take this much of this medication, you were my trusted care provider, and you didn’t give me the level of care that I should have been receiving. Yeah, and that’s hard, especially as a woman to advocate for yourself. And online space that we have in the migraine community is so invaluable. And I know you feel the same way, especially the doctors, especially the women doctors in that space, who offer their own time to educate the community. They’re invaluable, because I’ve learned so much from them, you know, at this point in my age, and it’s like, gosh, I wish I could have learned this 10 years ago, I wish 20 year old me could have read this tweet by this amazing doctor who we all love who’s giving this education to our community because maybe I wouldn’t be chronic now, you know? So you just try to amplify that and try to make sure that everybody who potentially could benefit from that is learning it is seeing it, so maybe it will help someone else.

Sarah Shaw  08:52

Absolutely. I appreciate you bringing up the migraine community and especially the female doctors that are in this space people like Dr. White that are out there.

Amanda  09:00

That’s exactly who I’m referring to.

Sarah Shaw  09:01

People who are out there being staunch advocates for people like us to not only I want to say educate ourselves, but also feel comfortable and confident to have these conversations like with our doctors about the care that we deserve and the migraine community I appreciate what you’re saying about you know, I wish 20 year old me could like take a look at these tweets and advocate and now with the work that I do at Global Health Living Foundation like of course like I’m a lot more confident like standing up for myself and advocating for myself a doctor’s appointment but I there’s still a little part of me that’s like I’m afraid to speak up but like I know that like in order to advocate for myself, like that’s what I need and have to do. So I appreciate you bringing that up.

Amanda  09:43

Yeah, I think it really empowers us, especially as women and kind of gives us the tools that we need to go into these doctor’s appointment. Maybe we’re not feeling confident or we’re not feeling safe because sometimes I feel like it’s an issue of you know, we’re anxious there might some anxiety there, for a lot of us, you know, we’re not feeling safe because we don’t know the environment, we don’t know if the doctor is gonna listen to us or trust us or believe us or give us time that we need to spend with them. And these conversations and community we’re having in these spaces, you know, hopefully can empower some of those conversations and give people the tools they need.

Sarah Shaw  10:24

You brought it up a couple of times about like living with anxiety and migraine, and I’m someone who talks also a lot about like living with anxiety and migraine. And it’s not something that I used to talk about a lot because I was ashamed about living with mental health issues. Do you want to talk a little bit about the journey that like you’ve had with living with an invisible illness like chronic migraine and also living with mental health issues like anxiety and depression, kind of like how those two go hand in hand for you?

Amanda  10:52

Yeah, I have had a struggle with anxiety and depression since early childhood. And it’s something that thankfully, I’ve always been able to be very open and honest and talking about, I haven’t always been kind to myself. But that’s part of I think all of our journeys with our own mental health challenges. I have struggled with going on and off medication how for part of that was my journey becoming a parent struggling to conceive and infertility challenges. I struggled immensely after my daughter was born with postpartum anxiety and kind of hit a wall where I realized I needed to get back on medication to manage my anxiety and depression. But it’s such an integral part of my migraine disease, because they are so interconnected, I feel that every facet of my migraine disease is impacted by my anxiety. And it’s also impacted by my depression that I struggle with, you know, I have some of my most severe attacks that are related to my menstrual migraines. And I also struggle with depression related to my menstrual cycle. And knowing that I’m going to have challenges with depression, at the same time that I’m going to have, you know, a seven to 10 day flare of a migraine attack helps me plan for how I’m going to manage daily to be functional, because I still have to be a mother, I still have to be a partner to my spouse, I thankfully have a very supportive partner who I couldn’t manage my life without, he’s the best teammate that I could have. And I have a child who is learning how to be a child of someone with a chronic illness, who also struggles with mental health issues. That’s part of life, you know, when there’s a whole other cacophony of challenges that come with, right being a parent with chronic illness and mental health issues. And how is that going to affect my child? But that’s how life goes. But being honest, not only with myself, but with the people around me about where I am not only daily with my migraine disease, but with my mental health, make our life more functional for all of us. So my spouse will check in with me and say, how’s the traffic today? And that means am I a green light, am I yellow, am I orange, is a red light day. And that’s not only for my migraine disease, but also for my mental health. And it’s important to check in that way, because it’s all interconnected.

Sarah Shaw  13:42

Right. And being able to communicate in that way is honestly like, I don’t see like a negative of it. There’s only benefits there. I feel like having that communication is just key to benefiting not only you but you guys as a unit, right?

Amanda  13:55

Absolutely. And we do and as a team, you know, for my eight year old to have the emotional intelligence to come up to me and say, you know, Mommy, I feel like I’ve got the morbs today, that’s kind of our family speak for they’re feeling off. They’re feeling down, I want them to have that emotional intelligence. So I feel like us being open as a family team to have those conversations. And you know, my partner also struggles with anxiety, being open and talking about it and normalizing mental health struggles. And also medicating when you need to, is important because that’s just it’s a fact of life. That’s how life goes. I feel like more of us than not struggle with these kinds of things and we need to talk about it.

Sarah Shaw  14:38

Absolutely. You brought up something just now that made me like reflect and think about you know, when I first got diagnosed with migraine, I didn’t have to think twice but okay, I have this pain that I need to take medication for and I would take my medication with no guilt or shame and when I started taking medication for my anxiety, I would feel I don’t know how to explain it, but I’d be like, let me try and push through this anxiety attack without my medication. And I was like, it’s weak of me to need this medication for me to function. And my therapist was like, okay, Sarah, do you feel shame when you take your migraine medication? I was like, no, of course not. And she’s like, then why do you feel that shame for your anxiety? Like she’s like, I know why, because society doesn’t take mental health seriously. And it’s seen as this weakness,

Amanda  15:25

While you have a whole other aspect to as a woman of color.

Sarah Shaw  15:28

Yes, yeah.

Amanda  15:29

And living in a white supremacist society that builds into that you’ve got a whole other layer that built into it, Sarah, absolutely. But your therapist is right, you have to normalize it.

Sarah Shaw  15:39

Absolutely.

Amanda  15:40

But the emotional side of you is separate from the intellectual side of you, intellectually, you know, it’s fine to take this medication, I know that I need it. But as human beings, we’re leading with our emotional brain and to tell that lizard part of our brain,

Sarah Shaw  15:58

Lizard, I love that

Amanda  15:59

You know that like, okay, listen to the intellectual part that saying, we need to do this not the emotional part that’s tapping into that shame and that fight or flight response, get over it.

Sarah Shaw  16:11

Right.

Amanda  16:11

It’s not that easy.

Sarah Shaw  16:13

No, it’s not.

Amanda  16:14

It’s not that easy. And that’s why therapy is so important.

Sarah Shaw  16:17

Love therapy, hear for it.

Amanda  16:19

They are the ones that help us to quiet that lizard brain.

Sarah Shaw  16:24

Absolutely, absolutely. No, I appreciate you saying that. And I want you to talk a little bit about being a parent with a chronic illness being a parent with mental health, depression and anxiety, what that’s like for you.

Amanda  16:38

So being a parent, I feel like the moment your child is born, you and I think especially as the birthing parent, you immediately have this guilt, that just is a part of being a parent that you’re going to fight I think the whole time that you’re a parent, and again, it comes to that emotional part of your brain you’re constantly trying to fight with. So you know, intellectually, I know that I’m doing the best I can. And that having her watch me struggle with my chronic illness and showing her that I can be resilient, you know, are all good things for her to learn. But then that emotional part of my brain struggles with is she going to resent that I couldn’t always run around in the yard with her or that there were things we couldn’t do, because you know, mommy was having an attack that day, or in the world that we’re living in, in a global pandemic, we’re still shielding from COVID, I have a complicated health status, you know, I have multiple chronic illnesses, you know, we can’t just be back immersed in the world is she going to resent that she missed out on things. So there’s the two sides of it. But we, as a family live kind of just an open lifestyle with our child, and we always have since she was born, so we have open and honest conversations with her. And we tell her the truth. And she knows all the facets of my illness, and we don’t hide things from her. So when I’m having an attack, I tell her I’m having an attack. When I’m struggling with medical issues. I tell her, I’m struggling with medical issues. If I need to cry, I cry in front of her and we talk about why I’m crying. But if we’re joyful, we’re joyful when we talk about why we’re joyful. And I feel like emotional intelligence is just as crucial a part of raising my child as is the social intelligence of being honest with her about what the world looks like.

Sarah Shaw  18:39

That’s honestly, I feel like all you can do and all that kind of goes into like my next question, which is about like self care, and like mental health, and like, I know that like on Twitter, like, I look forward to like your bird updates, like every single day when you’re talking about your birds, and it’s a part of my self care routine, where I’m like, okay, what’s happening in Amanda’s backyard today? What are the titmouses is doing today? What is the like, I’m sure that’s a part of your self care tips. Like what do you do to make sure you’re taking care of you?

Amanda  19:12

Yeah, it’s hard, especially as a parent, you know, I’m a stay at home mom, and I’m her educator, we learn through doing life, but there’s not a lot of time left in the day to have time for me. So I try to find moments where I can and like you said, you see the memes where people are like, you know, you’ve hit middle age where like bird watching is like what you do. I am literally the dictionary definition of that. I got a like a bird camera for my 40th birthday. And you cannot take my birds from me. I love my birds. We name them names. They have little families. We have bird drama, and it is calming to watch them and they’re beautiful. And so I watch my birds, I do fiber art. I do needle felting and embroidery. And I tried to find some time in the evening where my spouse takes some time to hang out with the kid. And I take some time for myself. And sometimes I have that end of the day, you know, let down flare where my head is just killing me. And that could mean that I’m just laying in the bed after taking a half an hour shower, trying to get an attack to break with my eyes closed. And sometimes for people with migraine disease, that is our self care, especially as parents because I don’t have the option of laying in bed all day. That’s never an option for me. As much as I’d like to say I can’t you know, we shouldn’t push through a migraine attack. I don’t always have that choice, you know, so you have to find pockets. Yeah, pockets of self care.

Sarah Shaw  20:46

Absolutely. Those pockets are so important. And whenever you can find them, I’m sure you cherish them. And you’re like, It’s mommy time. Like, it’s time for me to just,

Amanda  20:54

Yeah

Sarah Shaw  20:54

Exist with myself, even if I’m in pain like that steal your time.

Amanda  20:59

Right. And you know, it’s so funny because there’s been some conversations in the online space like, well, if you’re in so much pain, why are you on Twitter? And it’s like, because I need to see like what funny memes Sarah has posted on Instagram today so that I can have 10 minutes of joy and community. And yeah, I’m in if you could even know the level of pain I’m in right now, you’d probably drive yourself to the emergency room, but I’m dealing with it. And I want to see Sarah’s funny memes because they bring me a pocket of joy. And that’s my self care right now both mentally and that’s what I need.

Sarah Shaw  21:34

I’m glad that you are able to find these pockets of time to enjoy your birds, enjoy your needling, enjoy the memes because that is what keeps us going. And I think it’s the extra dopamine that we need to get through.

Amanda  21:47

It is it is and it’s so funny because even my kid they will say like, yeah, mommy’s scrolling TikTok for some dopamine. Let’s watch some snake hatching videos for dopamine.

Sarah Shaw  21:58

We’re on the search for dopamine, that’s what we’re going to call this episode.

Amanda  22:01

We’re on the search for dopamine.

Sarah Shaw  22:03

Oh, well, Amanda, thank you so much for coming on the show today. It was just such a pleasure to talk with you and to learn a little bit more about parenthood, migraine, mental illness, and searching for that dopamine. It’s been a pleasure.

Amanda  22:15

Thanks for having me, Sarah. It was really a lot of fun.

Sarah Shaw  22:19

Thank you for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating, write a positive review, and spread the word by sharing with your friends and family. It’ll help more people like you find us. I’m Sarah Shaw and I will see you next time.

Narrator  22:39

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

Narrator  00:00

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

Bernadette Gorczyca  00:06

“By the time I started teaching full time, I was a wreck, being an overachiever, and at that point, still trying to figure out what’s wrong with me. Then I was diagnosed with an autoimmune condition and even that doctor knew, yeah, I have migraine attacks, no conversation about treating the migraine or anything, so I just thought it was normal to live with migraine attacks.”

Sarah Shaw  00:30

Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host Sarah Shaw, Senior Manager of BIPOC Community Outreach at the Global Healthy Living Foundation. I have been living with chronic migraine for almost 10 years and I’m very open about navigating life with my chronic disease journey as well as my experience living with anxiety. This podcast will be a window into other patients lives as they navigate their own journeys living with chronic pain, migraine, and mental health. Today we are joined by Bernadette, a migraine and chronic illness support advocate and digital creator who runs an Instagram account called chronic accounts. Hi, Bernadette, welcome to the show. I like to start each episode off by asking our guests if you could use one word or adjective to describe your migraine attacks, what would it be?

Bernadette Gorczyca  01:18

Hi, Sarah, thank you for having me. That’s a hard question. I have such a range of attacks, but I would definitely say debilitating.

Sarah Shaw  01:26

Yeah, that’s a common word that a lot of our guests use. Yes, it’s debilitating. And I think it helps express to people the severity of what migraine is because typically, as we know, we’re still fighting stigma against what a migraine attack is and how people think it’s just a bad headache. And when you use the word debilitating, I think it helps paint like a broader picture. And I know that you’ve been like living with chronic migraine for a while now. Why don’t you walk us through what your journey has been like, how and when you got diagnosed and where you’re at now?

Bernadette Gorczyca  02:00

Yeah, absolutely. My story. It seems unique, but unfortunately, isn’t at all. It’s a story of a lot of people living with migraine in my family. There’s just a history of generations of undiagnosed migraine disease. So when I started having symptoms of migraine as a very young child, which was more abdominal migraine, my parents were trying to figure out what what was wrong with me. So we’d go to the pediatrician, we ended up with specialists at GI specialists, and I ended up having a scope being done and they thought, oh, she fits all of the diagnosis criteria for hiatal hernia, but it wasn’t there when we looked so she must have a sliding hiatal hernia because that comes and goes, but really, I was having abdominal migraine.

Sarah Shaw  02:44

Wow.

Bernadette Gorczyca  02:45

So that was my first misdiagnosis. And then from there, by the time I was in middle school, I was having classic migraine attacks. But when I went to the pediatrician, she would look at me diagnose me and say, oh, you have all of the symptoms of sinusitis, but you don’t have a fever, that’s so weird. As an adult, now I understand, oh, that’s classic sinus migraine. But then I was misdiagnosed with chronic sinusitis, because I was already having really regular episodic migraine in middle school. And then by the time I hit high school, I was just having regular migraine attacks all the time, but no diagnosis. And I finally got to a neurologist at the age of 17, because of course, my parents kept advocating for me, but when I got to the neurologist, she diagnosed me with stress headaches, and didn’t have any conversation about migraine disease, obviously, and didn’t give me any information about medication overuse headache, because I used to get through high school, I was very active. I had a job. I was volunteering regularly, I was around the clock athlete, I was captain of the varsity soccer team, I would plan my day around if I had a test or if I had a soccer game. You know, like that was how I got through high school, I would be so tired in the morning. Sometimes my parents would have to like spray water on me to get me out of bed to go to school because I didn’t have accommodations or anything. I was just living with undiagnosed chronic migraine and I was trying my best to keep up with everyone around me and act like everything was fine when nothing was fine. And then by the time I started teaching full time, I was a wreck because I was being an overachiever. as a classroom teacher, and at that point, still trying to figure out what’s wrong with me. Then I was diagnosed with an autoimmune condition and still no conversation even that doctor knew yeah, I had migraine attacks, no conversation about treating the migraine or anything. So I just thought it was normal to live with migraine attacks. And so did everyone else in my family. My mom was living with undiagnosed migraine, my sister, my aunts, my cousins and flash forward to down the years in my teaching career. It was the fall of 2019, I would always take care of my students with migraine attacks because I could see it right away if a student was going through a migraine attack and one of my students came to me and was like like, oh, I’m having such a bad attack, but I just took a triptan, so hopefully we’ll be okay. And I was like, well, what’s a triptan? And she was like Miss G, you don’t know what a triptan is? Are you kidding me?

Sarah Shaw  05:10

Bernadette Gorczyca  05:10

I was like, no, because obviously they knew I had bad migraine attacks is like you need to get back to the neurologist. So at that point, I was like, you’re right. Again, I still don’t understand it was a neurological condition. I didn’t understand any of this. So I went to my GP at this point, I was probably having one to two days a month without a migraine attack. Like I was always high frequency episodic as an adult, I just didn’t understand that and cried to my neurologist because I was like, I don’t have a life at this point. Like it’s just survived work, crash, teach through extreme pain get through the day. And yeah, I finally got to a neurologist, January of 2020, I had a brief period of being a little better because triptans were helping me even though the preventative meds didn’t help yet. And then I had a virus that was most likely COVID-19, right at the start of the pandemic sick for six weeks and after that, I progressed to a severe intractable attack that was completely resistant to treatment. So at that point, I had neurologist, nothing was working, but at least I was in care. So I had this severe and intractable attack where I was desperate because I always knew my attacks would break. Even if they lasted for 14 days, they would break all of a sudden, I had this attack that lasted over a month. And that’s when I realized, oh, my god, this hasn’t broken. And it was the lowest of lows. I thought, How can you live like this? I get emotional thinking about it. And that’s my just started researching, how can I break this migraine attacks still not getting I found the migraine community, I found all these resources. And that’s when I finally understood what I was facing what my family had been facing. And that’s what started this journey being an advocate, essentially.

Sarah Shaw  06:44

Wow, wow, a lot of like, what you’re saying is so common is so so common from what you’re saying about it being in your family and your family members being undiagnosed so you as a child like living with it, and doctors not knowing what is going on and misdiagnosing you as a kid. And then as a kid, like having to push through that pain and deal with like school and wondering like, well, I have to be on the same level as my peers. So I have to push through these attacks. And as we know, now, when you push through attacks, it makes it worse. And I feel like too, if you add the added layer of being like a woman living with an invisible illness, there’s just so many different barriers and hoops that like we’ve had to kind of jump through. And there’s a lot of onus on us to like do the education to read more about what this disease is how it progresses, that it’s not your fault, that it is not common to be living in pain 24/7 weeks out of the year, and only having two days of break of pain. And I can relate to a lot of like what you’re saying, because it took me a while in my chronic illness journey to start even, like openly speaking about the pain, right? Like there’s this stigma, where especially like for women, if we talk about pain, like it, there’s this thing of like, oh, you’re just a hypochondriac or its anxiety or we’re not strong enough. And we want to be on the same level as our peers. And you know, god forbid, if we have a chronic illness, people think that it makes us weak. But in fact, I think it’s the exact opposite. I think it makes us strong and just how long you’ve had to be dealing with this journey. And so many people that I’ve been speaking to recently 2020 has been about the time where they’re like I finally got my your diagnosis in getting on the right treatment. It’s been so common, and I think we’re starting to see in the migraine community more and more resources, more and more people talking openly about it and breaking the stigma and also the whole rhetoric of it’s not just a headache, right? Like, it’s so much more than that. You’re talking about abdominal migraine of where I didn’t know the word for what I was experiencing as a kid was most likely abdominal migraine, my stomach would hurt so much. My dad would just think that I was carsick or seasick or just I ate something bad and looking back and I’m like, that was probably abdominal migraine attacks.

Bernadette Gorczyca  09:08

What’s so interesting about what you’re saying, too, is when you’re a kid and you’re trying to figure out what’s wrong with you, and you’re know you’re having these pains, but then the adults are looking at you like, well, we can’t find anything. You already at that age, even as a young kid I knew to then start being quiet about it because you feel like you are making it up even though you’re absolutely not. But even at that young age, you then start to think oh, I’m going to be quiet about what I’m experiencing. Even recently, I remembered this memory and now I know it was a migraine attack. I remember waking up in second grade and feeling like I couldn’t move. It was like felt like shards of glass to move my muscles in my body and my mom was like, come on, you know, you got to get to school even now as an adult, I have these attacks where my whole body’s impacted in prodrome. You know what it took me a long time to figure that out. And that’s what I was experiencing. And I remember walking down the hallway, all of a sudden throwing up in the middle of the hallway, and everything broke after that I felt fine after. And if now I know looking back, that was a migraine attack.

Sarah Shaw  10:15

Right. And it all comes down to education, resources, access to education, access to doctors, and people that know the short tail time of a migraine attack. And just from what you were speaking to, when you were working with your students where you knew you could see it on their faces, and then you were able to navigate and work with them through that attack. And I think knowing those signs allow us to jump into action and take our abortive medications to kind of get ahead of the attack. I want to talk a little bit about I know you mentioned that you lived abroad for a little bit. I’m curious to know, you know, were you still dealing with chronic migraine while you were living abroad? And what was that experience like for you?

Bernadette Gorczyca  10:59

Yeah, I’ve lived with chronic migraine for as long as I can remember. So my life just consisted of pushing through constant migraine attacks, because this was before I was educated in migraine before I was treated. So I just thought this is normal life, right? So I live my life with constant migraine attacks. And I just continued to perform at a high level, I had one of my students say to me once like Miss G, were you born smiling? My kids had no idea what I was going through when I was teaching. So I would just keep going, I would get through the day, and I’d crash. You know, Ida had always wanted to live abroad. So I had a conversation with my partner, we looked into ways to do it. And we did it. We moved abroad, and I was a teacher. So I was able to get a job at an international school. So a few years into that. I remember Ryan turning to me and say, well, I don’t think we should plan any more trips. Because if we go on a trip, what’s the point? You’re sick in the hotel room with a migraine attack over the toilet? You know, like for him, he couldn’t understand it. And I didn’t have the words to express it then and I didn’t understand again, what I was going through back then. But I remember being so heartbroken thinking, well, you know, what, if even if I’m out for two days during the trip, I still had three days where I was able to experience it. Because I just I still wanted the opportunity to live even if I was going through these constant attacks. And I wish now that I had my whole life changed when I finally understood the depth of what I was going through when I finally understood that migraine is a neurological disease, you know what it reframes my entire life. And it also helped me learn how to take care of myself because before that time, I wasn’t taking care of myself. It was push crash, push crash, and my body was so past how I should have been taking care of it for a very long time. Because I didn’t understand I was disabled and I just was completely disconnected from my body essentially.

Sarah Shaw  13:00

Yeah, I think it like goes like this stigma of invisible illness, the stigma of even for a lot of people using the word disabled people still are uncomfortable. I didn’t talk about the fact I live with a chronic illness. I think there’s like a grieving process that we go through of mourning the person that we once were, but I thought it was really beautiful what you said, like, I still wanted to do what I wanted to do with migraine. And I think there’s a balance, like there are things that I know that I can no longer do. But there are adjustments that I can make to you know, still enjoy and live my life and you know, to advocate for myself and to speak up when things get really, really bad and you brought up your partner and my partner is a big part of my migraine toolkit of just having someone that’s supportive and empathetic and understanding. Can you talk about like what it’s been like to be in a relationship with someone who doesn’t have a chronic illness?

Bernadette Gorczyca  13:53

Yeah, what’s really interesting is before I was educated in migraine, I would say there was a lot of miscommunication because I didn’t have the words to express what I was going through. So he couldn’t understand why oh, why she dragging in the morning? Or why isn’t she able to do this and this and this, what’s been so interesting is I’ve gone on this huge journey of learning about myself and how to care for myself and he’s gone on that journey right alongside with me. So what’s been great is there’s just been this openness and and not to say that it hasn’t come with hardship, because it’s been a journey for him as well. But we’ve grown together and I find that to be so helpful because I even have family members that have a hard time understanding they think but you were okay before you had the severe intractable attack. Well, no, I was never okay. Right. And even like you said, this term disability might come with grief. Well, for me, it came with relief because I had struggled so much and didn’t understand why. And for me, it was like, oh, this is why you know, and it gave me the permission to live alongside migraine rather than trying to push through it and ignore it and you know push it away. It gave me this freedom to do build and design a life that was in tune with my needs. And Ryan’s been able to go alongside me in that journey and respect that and try as best as he can to support it and understand it. But it’s definitely been a learning journey for both of us for sure. Yeah.

Sarah Shaw  15:16

Of course, of course, I feel like anything, when you’re on that journey, your partner is also on that journey. And in the beginning, I was kind of quiet and silently suffering without telling my partner and she was like, tell me when you’re in pain, please and she’s like, I can sometimes see it on your face, but then you won’t tell me that you’re struggling and trying to push through a migraine attack when you really should be taking your medication and laying down and being in a dark room away from people. And I’m like, why’d you know, I didn’t want to, like, disappoint you. And it’s come with a lot of learning curves for both of us. And I think the fact that she’s kind of seen me, she was there at the very beginning of my migraine journey. So I think it like made it a little bit easier of knowing, like what to do and how to navigate. And she comes with me to my doctor’s appointment, which is just, it’s super helpful to her to learn the terminology and the language. And you know, it’s so cute. Now she’s like, did you need your medication to like, name, the name, and she’ll come and bring it to me. And she’s like, you’re on this, this and this, and this. And I think it’s just being able to have these conversations. And you know, in that openness definitely helps with your treatment plan. So I wanted to focus a little bit on your Instagram account chronic accounts, can you tell us what inspired you to create this space for people living with chronic illness?

Bernadette Gorczyca  16:30

Yeah, what’s interesting, when I first created it, I saw I had this severe intractable attack that at this point I had already lived with for a year and a half about and the first year I got approval to work from home. So I worked from home with a nonstop severe intractable attack teaching, because it was the first year the pandemic and it was that year where teachers were working from home. So rather than taking time off, I was like, oh, this is great. I might be housebound, but I can still work. Because again, I still wasn’t understanding, hey, you need to stop and take care of yourself. So I worked from home that year, in the second year, that wasn’t an option. And in the Netherlands, there is sick leave. It’s your right, if you need it, you take it, there’s a system built in place for it. So that second year, I was still hoping I could do part time even though I still wasn’t able to commute. I don’t know what I was thinking. And my HR and my head of school where Iike you tried to work alongside this, you you’re not better, you need to take the time to heal and they’re like take a year off like they were the ones pushing me to do it. So that was filled with a lot of grief. I adored my students. I was teaching high school, my students were in their 12th grade year, I wanted to get them over the finish line. And I had to let go. That was sort of a lot of grief. I was about a month into sick leave where I was just like I felt like people didn’t understand their thinking my colleagues like, oh, this person’s on sick leave for migraine. You know, I just knew people would have no clue of what I was going through. And I had just fallen off the face of the planet. I had a full life, not a full life. But I had somewhat of a social life. I had friends, I got this severe intractable attack, I was gone, I was home, I was barely trying to go for a walk and get to my doctor’s appointment. And that was my life at that point. And I just felt like I wanted almost like I think it first came from the need to like want to defend myself or something. Just share this as my experience. I wanted people to just know my friends and family. This is what I’m going through. And also it was so hard to have conversations, I was so exhausted that I felt like okay, this is a way where I can update people in one place. And then everyone can get tuned in to what’s going on and where I’m at, because I just didn’t have the ability to keep up with my relationships. And then it just became like a huge passion project from there where I wanted to reach people like me, people living with migraine thinking it was normal, and helping them break through that stigma and finally realize, oh my gosh, there’s nothing normal about this. Let me get treatment so I can reclaim my life. And it’s gone from there. And I was an English teacher for about 10 years before it transitions to teaching learning support. So there was a point where I got really passionate about migraine language and I still am I thought I was gonna be teaching for my entire life never once that I ever think I wouldn’t be in the classroom. Like I was so passionate about it. I saw my students like literally as my kids like I love teaching and sorry I get emotional talking about it. And yeah, like realizing what I had to grieve leaving the classroom fully grieve it but then after I grieved it and it’s something I still grieve obviously, possibilities opened up because then you look at your and this is for anyone going through migraine having to leave your career, you get to sit back and think, wow, these are all the skills I have.

Sarah Shaw  17:11

Right.

Bernadette Gorczyca  17:12

What else can I do? And then you get to transform. And I’m so glad that I had the ability to create content that helps people express to the people they needed the most in their support system to be able to get that support hopefully or help people understand just a little better of what they’re actually going through because it’s so hard. The migraine stigma runs so deep that we end up like gaslighting ourselves because we just don’t understand that the person next to us isn’t going through those debilitating symptoms on a daily basis or monthly basis if they’re not on chronic migraine or whatever it is, but you know, it’s not normal. That’s my biggest thing migraine is there’s nothing normal about it and I wish people could understand the level of severity of what it inflicts on people that have to learn to live alongside it.

Sarah Shaw  20:31

Right, and a matter of transition and a matter of the things we have to give up and the things we have to navigate. And I think what you said is something that about grieving, like the career that you had, and but you were able to pivot and I think we don’t really talk about grieving enough in general, as a society, but like grieving, you said that you thought you were going to be a teacher for your entire life. But I’d like to kind of twist it a little bit, you are still a teacher, you are still educating and you are still touching a lot of people’s lives and helping the community kind of take not pride in themselves, but to take ownership and learn how to advocate for themselves and learn how to share these conversations like with their family members, with their friends with a friend who maybe is somebody who’s like, why are you always canceling on me last minute or I don’t understand like you were fine yesterday. And no, no, I’m actually never fine. Like, I’m not fine anytime. I’m putting on this mask, like you said, I’m putting on this mask for you. So that way I can quote unquote, seem normal. But what even is like normal? What is normal these days?

Bernadette Gorczyca  21:37

Yeah. And like you said about masking? Like I I’m an open advocate. And really the people that mainly see me without my mask on. It’s Ryan, it’s my parents, my sister, you know what I mean? It’s the people closest to me, where I know I have the ultimate safety like these people will love me no matter what. Other than that there’s a mask and all the time, like you’re not going to see how I’m actually feeling if I’m spending time with you, because I’ve done it my whole life. And this goes for many people living with migraine disease and chronic illness like you can’t see by looking at us all of what we’re feeling or that heavy fatigue?

Sarah Shaw  22:09

Absolutely. It’s something I think a lot of people can really relate to. And it goes into my last question which talking about putting up a mask, but like I talk a lot about like mental health and migraine and the importance of taking care of yourself on your wellness journey, what sort of like self care tips do you do for yourself to make sure you’re taking care of you?

Bernadette Gorczyca  22:29

So one of my favorite self care practices is literally just being in water. So I realized like two summers ago, whenever I was in water, my migraine symptoms are better. And I think it’s because my nervous system just kind of like calms down and find some safe space. So it’s just like finding practice things like swimming is really helpful for me, gentle walks, pacing is huge for my self care, just like adjusting to a gentle way of life. But yeah, it’s a lot of like soothing nervous system practices, even drinking a cup of tea at the end of the day. But it puts you in a space where you have to listen to your body and then adjust to take care of yourself.

Bernadette Gorczyca  23:08

In those moments where all of a sudden you’re feeling high anxiety, okay, I have like a toolkit of things I can do to help myself in those moments. So you know, I take a bath, I might do some restorative yoga, might put a weighted blanket on me, just having kind of like a toolkit of self care practices that I can use for different moments. If I’m angry, if I’m anxious if I’m super exhausted. Yeah.

Sarah Shaw  23:08

Right.

Sarah Shaw  23:29

That’s amazing. Thank you for sharing all of what you do. And I think being in the water like is super calming to me too. So being able to be in tune and in touch with yourselves and bring yourself down to a more calm and like restorative space, I think is crucial. And I’m glad that you’ve been able to navigate and figure out what works for you. Well, Bernadette, thank you so much for coming on the show with us and talking about your journey and what’s been helpful for you and how you’ve been able to pivot and navigate I really hope that it resonates with our listeners and just thank you again for sharing your story.

Bernadette Gorczyca  24:00

Thank you so much for having me on. This was lovely.

Sarah Shaw  24:04

Thank you for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating, write a positive review, and spread the word by sharing with your friends and family. It’ll help more people like you find us. I’m Sarah Shaw and I will see you next time.

Narrator  24:23

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

Narrator  00:00

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

Dr. Nina Riggins  00:10

So beautiful part about this new medication class GLP-1 agonists that they do not narrow vessels. So GLP-1 receptors, they are responsible for multiple things. They affect our glucose, blood sugar, and so we get more insulin, and we can potentially lose weight and fight diabetes.

Joe Coe  00:38

Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host, Joe Coe, Director of Therapeutic Area Growth and Integration with the Global Healthy Living Foundation, as well as Co-President of GHLF Canada. I’ve been a migraine patient for over 20 years, so I know firsthand how debilitating this disease can be. I’m here with a really wonderful neurologist who is a friend Dr. Nina Riggins. She is a board certified neurologist who specializes in headache medicine and traumatic brain injury. She’s from a UC San Diego School of Medicine and among other things, she trains medical students, residents, and fellows. And she looks at really interesting research questions and that’s why she’s with us today. It’s at the American Headache Society’s meeting in Austin, a month or so ago. And there was a poster that Dr. Riggins presented that was super interesting about weight loss and weight loss, drugs and migraine. So what we’re going to be talking about a very sensitive topic, but one that we should be talking about. So Dr. Riggins, how are you doing today?

Dr. Nina Riggins  01:47

I’m doing great, thank you so much, Joe. I’m super excited to be here. We have such an amazing conversation about lifestyle and new medications, new ways to treat, pause migraine, headache, and approach weight loss. And I’m very grateful to be here today.

Joe Coe  02:08

Yeah, and this is a really difficult conversation to have. And as someone who has struggled with weight issues and weight management, it’s something that I wanted to, at some point really tackle here on Talking Head Pain. So the conversation that we had in Austin was really enlightening about how we have to approach people as a people. And we get shamed by our doctors, we are told really negative things about weight, we are hearing things that might not make us want to take action. On one spectrum, we have people that need to lose weight, according to their physicians on the other, we have people that might need to gain weight that could help them with their condition. So it’s a really, really challenging thing. And it’s such a personal topic. So wanted to just put that out there that this is both my experience and as an n of one. So I’m going to be speaking from my experience as Joe and we’re going to be sharing some interesting research about a newly approved weight management drug. It’s not a new class of medication. It’s been around for quite a bit, but it’s becoming newly approved for weight loss in particular. So Dr. Riggins, can you give us a little bit of an overview of the research that you presented in your poster?

Dr. Nina Riggins  03:29

Yes, thank you so much. So it was June Headache and Migraine Awareness Month, and I was thrilled that medical students are our future they’re able to travel with me to American Headache Society in Austin, Texas, where we presented a poster on GLP-1 agonists and potential effects on people who live with migraine, and specifically this chronic migraine. For me it was eye opening experience when I was in my clinic with our excellent group of medical providers but also trainees and we start to see patients coming in on this new medications. In the past we only had medications with more side effects for weight loss, an example would be something amphetamine-like which can narrow your vessel and this coupled with triptan which also narrow vessel make me really concern at times. So when new class of medications arrived, we immediately start looking what does it do to vessels are we potentially narrowing them and I was relieved to learn no, so beautiful part about this new medication class GLP-1 agonists that they do not narrow vessels.

Joe Coe  05:04

So how do they work? They work on hormones, the GLP-1 antagonists.

Dr. Nina Riggins  05:10

So we think that there’s few ways of action. So GLP-1 receptors, they are responsible for multiple things, and they can lead to better metabolic balance. They affect sympathetic nervous system in the ways that a person might use in GLP-1 agonists may have better blood pressure control, but also they affect our glucose, blood sugar. And so we get more insulin, and we can potentially lose weight and fight diabetes with this class of medication GLP-1 agonists, what does it do to headache immediately was my concern. We know that things like processed meat or nitro open up vessels, and it can actually trigger migraine attack. So immediate concern was, what do we do if those medications which used for weight loss and seems like getting very good reviews from cardiology and the endocrinology. What do we do as headache specialists or primary care or neurologist who see patients with chronic migraine? They need this medication, but can it increase headache? And what do we do? What do we recommend? So that was a topic of our study. And we were able to follow participants in this RB approved retrospective review study and figure out that maturity of the patients who use those GLP-1 agonist medications, they improved with adjusted doses with our headache treatments, they didn’t need to stop those medications. And we achieved better lifestyle, but the headache control altogether in majority of patients, not 100%. So that was a relief from my headache specialist point of view. But I also think that lifestyle plays huge role. And we still need to learn much more about this new medications, what long term side effects they can have, would be one of the questions for any new medication. So when Joe mentioned about exercise, and diet, and I really love our discussion, that very strict diet when you recommend to people don’t eat is not going to welcome patients with migraine. And it’s really hunger can trigger migraine attack. So I always stands when someone tell them stop eating and no no no, balance diet and no hunger are much better answers.

Joe Coe  08:21

The hunger concept is super interesting. But let me let our audience know a little bit about what we talked about at this meeting from my perspective. So I live with migraine, as everyone knows, I host the show. And as I was navigating treatments, I ended up on a medication that lowered blood pressure that helped for two things. One, I was overweight and had high blood pressure. And it also was used to treat migraine as a prevention medication. It was a beta blocker. As I started to make the shift in my health for many reasons. And migraine was a part of it, but not the whole part. I started to move more. And really, really slowly. It was just some light walking, maybe a 10th of a mile, maybe a quarter of a mile, whatever I could tolerate at the time. And I started to look at what I was eating. And I’m so glad you said about hunger. I’m glad that during this process, no one told me to be hungry. They said if you’re hungry, then you’re doing something wrong, you might need to adjust a little bit. But there are ways that you can kind of hack that by looking at the amount of protein that you’re taking and the fiber that you’re consuming. And really that idea of a balanced diet, that there aren’t bad foods that it’s about moderation. And I think as migraine patients, we often think about things in binaries because of how historically we’ve discussed triggers and there’s even the new way that we discussed triggers is more of a drops in a glass until it overflows as opposed to one trigger causing something we look at things in a dichotomy often in society and definitely with migraine. So it was important to get out of that dichotomy, and yeah I started losing weight. And then what doctors and others didn’t tell me was that you might feel worse before you feel better. And as I was adjusting to a new body, migraine brain and people, you know, we liked stability. So my body liked in a certain way that overweight, really pro inflammatory state, in a strange way, it was what it was normal, it was what I lived with. As I started to get how I define healthier, I was passing out I was feeling worse. And it was because of this medication plus the losing weight and my blood pressure was naturally being lowered. So I wasn’t necessarily monitoring my blood pressure, and I would go for a walk and I would get dizzy and I would almost pass out or go to the gym and almost pass out, get blood work, take it and I did pass out in an ambulance had to come because they couldn’t wake me up from my blood pressure being so well. So I think it’s important when we talk about lifestyle changes and migraine that there is evidence that certain things help we know that a Mediterranean balanced diet can help, we know that maintaining a healthy weight range. And we’re not even saying BMI and all of that stuff. Because that could be debated, but a healthy weight range determining what that is for you with your physicians is important. And then the types of movement that you can tolerate and how you can build on that I would love to see more research in strength training. I know that there has been research in aerobic training and migraine and how it has a positive effect strength training has been my go to form of exercise. And I know it helps me but again, n of one.

Dr. Nina Riggins  11:45

Well, it sounds like you did just unbelievable job, I do have to say that it breaks my heart to hear that one has to almost pass out. So I hope we as medical professionals can be there by everyone’s side to prevent that. And I really amazed what you said that it’s might get a little bit worse before it gets better, because it’s exactly what we noticed. And other researchers noticed about this new class of medications in the way we think about headache at this point. So when someone start GLP-1 agonist for diabetes control or weight loss, we do see spike in headache. And this is how it’s actually came to our attention that we need to do maybe little bit more, as head specialist to support our patients during this time. And it’s possibilities that we have to adjust those, as we learning about those medications, during GI symptoms, sometimes people who prescribe it for weight loss and for diabetes, they also have to adjust it. So at times, I would say okay, so medication increases slowly to watch out for GI symptoms, please keep headache diet, and I lowered us and I lowered if medication come in from some other source like endocrinology, that we might have to adjust it if it’s not tolerable. And when we go slowly, and we support with headache management, maybe we do some little bit more frequent procedures to decrease headache frequency and intensity during this time, basically working together really helpful during this time. So it’s amazing that you brought up to attention the one of the major points, it’s might get worse until it’s get better. People feel better to the point that they can exercise more people feel better to the point when they have energy to do more with their life. And maybe they will be more adherent to some things which usually not that easy.

Joe Coe  14:14

Yeah, that’s so important. Because I know that we’re told, you know, do all of these things. And it’s daunting. And then when you start to do them and they might not work or you might feel worse, it really demotivates people. So I think the more that we create the shared decision model where we’re talking very directly with each other as patients and providers about what success looks like for me, what are the risks, what are the benefits? What is the right plan for me? The better position we are for success as patients and I think that being communicated more will help manage expectations. And you’re absolutely right Dr. Riggins, people need something to push us, and we need that break, and for me, I somehow magically got it. And people will say that it’s willpower. It’s this. It’s a convergence of a lot of different things, a lot of privilege, a lot of access to resources to a nutrition coach, a trainer, a flexible work schedule, the ability to buy fresh fruits and vegetables every week from my grocery store, I don’t live in a food desert, all of these things that really removed barriers for me to be able to do that. We also need to give ourselves every opportunity. So if there’s a potential that a medication like this could both help my head and chronic weight management issue, I might want to try it. It’s something that I should provide myself that opportunity. And certainly if I was in the category where I would be eligible for that medication, it would be something that I would be discussing with my provider today, because it’s really interesting. I wanted to circle back to the concept of hunger, my understanding of how these medications work in some way they impact your hormone ghrelin, which is what makes you hungry. So makes you feel hunger. And is there theory potentially that the reduction in that feeling of hunger might be one of the pathways that reduces the migraine frequency?

Dr. Nina Riggins  16:20

I don’t think migraine frequency depends on sensation of hunger in this way, does medication do this but there are some feeling satiety, like they don’t have to eat right now they have less craving. We don’t think that’s one of mechanisms for pathophysiology for migraine. But it’s more about mismatch of energy in migraine theory. If we know that we use in some wonderful nutraceuticals really like Coenzyme Q 10 or vitamin B2 be very successfully in headache medicine with very little side effects actually, to replenish this energy our brain needs I love when our passions speak I am big fan of many passions advocacy organizations and always feel supported. We know from this voice of our passions, I saw the spoon theory about energy, we have to keep energy for our passions up and when we discuss I love what you said about a best plan for this individual if we talk about someone who actually planning to lose weight, we probably we definitely actually should disclose that some medications they contribute to weight gain example would be one of more classic all the classes like Depakote and it would be an excellent point to discuss that some of medication actually new ones can contribute to weight loss too. So CGRP blocking medication called atogepant was presented about a year ago the American Headache Society Conference as one where people reliably lost weight on atogepant for preventive headache management, migraine management. So this new medications for headache management for migraine management have this nice side effects if someone’s interested. So we always try to not to put blame or pressure and not assume that someone would like to lose weight. We have people who say I actually trying to gain more muscle and I cannot afford to lose more weight. I don’t want beyond the pyramid.

Joe Coe  18:56

I learned that too, that you have to gain weight to gain muscle and that’s okay. I think the energy discussion is super interesting, because I know both from my experience and from what dietitians and health coaches would say once you start going into a calorie deficit, you your body might feel more tired initially and there are ways that you counteract that when you’re doing this healthy a don’t go into a very large calorie deficit you do it slow and to you eat sustainably throughout the day different hold type foods and proteins and things that may sustain energy a bit longer than some of the overly processed simple sugars. So there are ways that you balance that energy loss. I’m curious about what you’re talking about with energy and brain and migraine because that to me is actually a new concept. I know that there are vitamins and minerals and supplements that are somewhat validated or have strong evidence surround their efficacy with migraine but I didn’t know it was connected to energy. Can you explain a little bit more about that connection?

Dr. Nina Riggins  20:06

Yes, it’s extremely interesting reports coming out and were presented in the American Academy of Neurology, about this mismatch of energy some basic labs finding in people and they do in like basic models for migraine we still learning we know, it’s genetic neurologic disease, but we still learning are they neuron stalking different to each other. Like there is one of the wonderful researchers at the American Headache Society. They group publishes how treatments and treatments for example the CGRP block and new medications restore how brain cells talk to each other in the brain. And then there is different groups which they will work together but they saying well there is also energy component to that and it’s actually make sense to me when I listen to someone even presenting from a patient advocacy group they saying well, when person without migraine, you’re told okay, let’s go somewhere out so person result migraine take shower getting dressed and feel energized, maybe person with migraine, by the time they took shower, got ready, got everything together to go, they might need even break just from doing this activity because they feel drained of energy. So the spoon of energy needs to be replaced again. So it’s very interesting theory and interesting allegory from persons advocacy group about The Spoon Theory, which I do hear in different variations throughout the day.

Joe Coe  21:52

Super fascinating. And for those that don’t know, the spoon theory was developed by chronic pain and chronic disease advocate to explain the limited amount of resources so she was sitting in a diner and grabbed all the spoons around said I’m given 10 spoons a day to shower, three spoons to go for a walk, four spoons, and you have to allocate those resources, really interesting cycle about energy and something I could again as an n of one personal story, as I started to get better managed with my migraine and moved on to some of the more targeted therapies, I have found that I’m able to do more, and it helps me break the cycle of migraine, I would often get migraine attacks that would last multiple days. And I can’t recall when that has happened to me in the past three years. Because the medication that I’m prescribed now I take and it allows me to function. And I will say this past weekend I woke up we had crazy torrential downpours here. And I don’t know if that caused me to have an attack. But I had an unusually intense attack in the morning. And I was like, oh man, this is rough. And I was like, All right, do what you practice and preach. Take your medication right now. Don’t wait, take it. Why are you going to wait because it was the weekend I was like, do I really need to take it I don’t have anything to do. I took it probably reduced my pain about 50%. Then I took an over the counter medication with it, which I often will do when I have an attack like this, then it was gone within two hours between both of the medications. And I was able to go for a nice long walk that I probably wouldn’t have been able to do before being on the right treatment. And I know that that walk helps me have less attacks. Me personally, I know that engaging in that outside in the break of the rain, I actually had to jog back because it started to pour. So it was nice to be able to do that. And I think that contributes at least for me to how I manage. But I wasn’t able to do that right away. And I think we have to manage expectations that we have to give ourselves a realistic timeframe to a see if medications work. And if lifestyle interventions work and vitamins and minerals work because I think we just want we’re in so much pain. We want it to work like that second, and there are medications that will work that second, the longer term stuff, we have to set reasonable expectations to try it and there have been things that you’ve listed some that I’ve tried all of them I currently take one and not the other two, because I found that the other two didn’t work for me but one I will always take because why not? It doesn’t hurt.

Dr. Nina Riggins  24:34

Yes, I just wanted to amplify that. We don’t know yet. So well biomarkers to identify what works for each individual person. So I just wanted to say that it’s so true that we have to still do trial and see which preventive medication work or which acute medication work and it’s wonderful that we have choices now.

Joe Coe  25:03

Definitely. Well, this has been an amazing and super informative discussion. I so appreciate your time. I know that you’re extremely busy seeing patients and doing research so value the time and energy that you spent with me today.

Dr. Nina Riggins  25:17

Thank you so much, Joe. It’s actually been very inspirational to me personally, and to see such excellent success stories of ways that you dedicated to all our advocacy community. And that’s where we met. And I can see that this podcast and you will work is also part of advocacy. So it’s really appreciated. It’s shows everyone we are not alone. We are community, we share ideas when some new medications showing up we start to look and what does it do for people living with migraine and headache, and we all put our information together and use it to all get better.

Joe Coe  26:04

Thank you. Thank you for listening to this episode of Talking Head Pain of the podcast that confronts head pain head on. If you have any questions or thoughts or suggestions for us, you can send us an email at [email protected]. If you enjoy this episode, please give it an honest five star rating. Write a positive review and spread the word by sharing it with your friends and family. It’ll help more people like you find us. I’m Joe Coe and I will see you next time.

Narrator  26:33

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

Narrator  00:00

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

Simar Batra  00:06

“I think one thing that I really struggled with at the beginning of my chronic illness journey was feeling like everything was lost and I had this like feeling of overwhelm and like catastrophizing, which I’m sure you understand is like such a huge part of anxiety. Feeling, everything is just gone, but you come to realize that they’re just like new ways of doing things. Find like new joys.”

Sarah Shaw  00:30

Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host, Sarah Shaw, Senior Manager of BIPOC Community Outreach at the Global Healthy Living Foundation. I have been living with chronic migraine for almost 10 years and I’m very open about navigating life with my chronic disease journey as well as my experience living with anxiety. This podcast will be a window into other patients lives as they navigate their own journeys living with chronic pain, migraine, and mental health. Today, we are joined by Simar, a migraine advocate and student living in Australia who runs an Instagram account called study with migraine. Hi Simar. Welcome to the show.

Simar Batra  01:05

Hi, Sarah. Thanks for having me.

Sarah Shaw  01:07

No problem at all. I’m so happy to have you on and to dive into this conversation. I like to start off each episode by asking our guests if you could use one word or adjective to describe your migraine attacks, what would it be?

Simar Batra  01:23

I think for me, it would be kind of ongoing, just because I’m living with refractory migraine at the moment. So I’m chronic, but they kind of intractable, so I’m stable, but they’re just never ending. That’s how I would describe it. Ongoing.

Sarah Shaw  01:38

Ongoing, ongoing is a very good word to use. I feel like when it was chronic every single day, it was like when will this pain end like when will it stop? When will I find relief? And I feel like a lot of our listeners can relate to that sense of ongoing and a lot of people that don’t live with chronic ongoing pain can’t really understand that. And I know you and I have had some conversations online about like people not understanding that it means that I’m in pain every single day, and that sometimes there’s no relief. And I appreciate you talking about that.

Simar Batra  02:14

Yeah, I think sometimes what a lot of people don’t realize as well is that even if you’re not in pain all the time or in pain every single day, you still have symptoms, some kinds of symptoms every single day. And other symptoms can be more debilitating than your pain. So something like photophobia or feeling dizzy or feeling faint or nauseous. Sometimes that can really just mean you need to lay in bed or have a nap that can really stop you from getting through the work that you need to do during the day.

Sarah Shaw  02:42

It’s very distracting. Right?

Simar Batra  02:44

Exactly.

Sarah Shaw  02:45

It’s very hard to like focus and do work and you know, live when you have like you said you mentioned these other symptoms of migraine. It’s not just the pain. It’s the photophobia. It’s the nausea. It’s very hard to do anything when you have nausea. It’s very hard to do anything when you’re dizzy. How are you walking? How are you driving? How are you focusing on writing a paper? And I know we’re gonna dive into a little bit of that I want to pick your brain and talk to you about your Instagram account. And we’ll get into that later.

Simar Batra  03:14

Yeah.

Sarah Shaw  03:15

But first I want to kind of dig into you know, migraine affects a lot of women. And that’s something that is very common, and it’s very well known in the migraine community. As we know, being a person of color, it can lead to like different obstacles in our access to health care or being believed or different struggles. And I wanted to know, for you for your experience, did you find that you dealt with any issues like getting a migraine diagnosis or anything else in kind of your migraine care being a woman of color?

Simar Batra  03:47

Well, the first thing I noticed was the our family doctor was the kind of doctor that my whole family and I and my sister my parents and I had been seeing for like 20 years, the whole time, we’d been living in Australia, and I had been living with another chronic pain disorder that wasn’t affecting my head, but just the rest of my body. And then when I started having migraine attacks, the first thing that my doctor kind of did, he laughed at me, and it wasn’t in a kind of snarky way. But it was just in a kind of, oh, it must not be that serious. He wasn’t really worried. And he literally said sometimes symptoms are psychosomatic and I was like yes, I do acknowledge that I deal with mental health issues that’s valid, but like I don’t think that would be leading to me throwing up right and me like lying in bed. Do you know what I mean? Like it just doesn’t it doesn’t seem plausible for me to have like a 72 hour attack from a mental health issue.

Sarah Shaw  04:43

Right? As I like to say the math ain’t math in the numbers aren’t connected. I hear the words that you’re saying but for me to like you said be laying there in pain for 72 hours and throwing up and the nausea I’m sorry, but anxiety, mental health, depression. That’s not what happens when we’re living with mental health issues. There are other figures at play that I wish that you had had the empathy and the wanting to dig into it more. So like, sometimes what happens is I feel like sometimes when doctors are don’t know what’s going on, they like to, especially for women, you know, as women of color, they like to play everything out on mental health issues. And a very common thing that happens for women is, oh, it’s just anxiety. Oh, it’s just depression. Oh, it’s just stress. And that’s such a common thing that, you know, happened to me in my journey and a lot of other women that I speak to, that’s the first diagnosis that they get before they get the migraine diagnosis. So I want to know, what did you do after you have that experience? Did you seek care elsewhere? Did you advocate for yourself? How did you get from the doctor that told you that your symptoms were psychosomatic to now I have a migraine diagnosis?

Simar Batra  06:00

Yeah. So I actually started seeing a different doctor, I was so mad. I was like, this doctor is being really defensive. I think I was like, I am a mystery case to him. And I think he’s just really upset that he can’t figure me out. So he’s trying to, he’s coming up with the most plausible solution in his own head because he doesn’t have the education to really figure out what’s going on. So I did some googling of my own. And I found a neurologist, and I found like a different GP. So I went to a different medical practice, I asked to be referred to a neurologist, and that family doctor was really nice. And they referred me elsewhere, when he believed me, and it was a much more progressive clinic as well. And they took me much more seriously. So I find sometimes women take me more seriously, because this was a male doctor that hadn’t taken me very seriously. He didn’t take me very seriously with my other chronic pain condition either. But once I saw the neurologist, who was a female neurologist, she was able to start me on some other medications that started helping as well.

Sarah Shaw  06:59

I think, unfortunately, it’s a very common thing that happens to women in the chronic illness space, especially when we’re dealing with invisible illnesses that people cannot see.

Simar Batra  07:11

Yeah.

Sarah Shaw  07:11

I think when you can’t see the pain, there is this barrier that blocks us from getting the care that we need. And I know for me, I specifically seek out like women doctors and for me, I specifically seek out women of color because I feel I’m the most relieved by women of color I’m I can connect with them. It’s just there’s something that is unspoken about being able to see that there’s this unspoken understanding. I think that happens and,

Simar Batra  07:42

Yeah.

Sarah Shaw  07:43

Every single woman of color that I’ve been able to see whether it’s for my migraine or my anxiety, these are my endometriosis my invisible illnesses. It’s I’m 100% believed and supported and validated and what I hope for, for the future is for other people to follow suit so that way we don’t have to bounce around from doctor to doctor to doctor could be believed,

Simar Batra  08:07

I think looking for doctors like of color, women of color, but then also finding ones who understand anxiety and mental health I feel like is really important as well because I started seeing a headache specialist and a new neurologist recently and I feel like she takes my symptoms and migraine really seriously. I feel like some neurologists tend to take other neurological conditions seriously like epilepsy, stroke, traumatic brain injury, which is so valid, I totally understand that. But then they I feel like kind of tend to neglect migraine. And I think they don’t understand how disabling it really is. So she was a good doctor, but she didn’t really believe how much it had really upended my life. So respect to her. But that’s why I started to seeing a different doctor.

Sarah Shaw  08:47

I’m glad that you advocated for yourself and got the help that you need and the treatment that you deserved. And I think a lot of people like especially for me, when I was younger, I didn’t know that I could advocate for myself and to hear you, you know, speak up and be like something’s not right. And I deserve better care, I think is amazing and I think is very inspiring for other people to listen to to know that you deserve better and you deserve to be believed. And you also talked about a mix of you know, dealing with mental health issues like anxiety and living with migraine two things that are very invisible, that not a lot of people can see and empathize with. I want to switch gears a little bit and we normally hear a lot about older people living with migraine like when a lot of people hear the word migraine. It’s often like associated with people that are older, older women, older white women navigating life and jobs. But we don’t really hear about like the stories and the experiences about young adults like living with migraine and navigating college and university and that was one of the things that really drew me to you was your account and I want to know if you don’t mind like sharing about like the obstacles that you’ve experienced as a student living with migraine while navigating college, which in of itself is like its own adventure. So would you mind talking to us about that?

Simar Batra  10:09

Yeah, of course, I think probably the biggest obstacle has been kind of communicating to my peers and kind of trying to like bridge the gap of understanding there, obviously, because people my own age, most of them don’t live with chronic illness or haven’t experienced chronic pain. Obviously, that might change as we get older things happen. I think party culture, especially in Australia, drinking culture is really big. I don’t go out or drink as much anymore, just because one, I don’t like it, too. It’s not good for my head. But yeah, just trying to communicate as much with my friends and close friends has been, I think the biggest challenge a year living with chronic migraine, I have improved, but it has been pretty difficult to navigate. I think university has been really accommodating, as I mentioned on my account I have registered with Disability Services. And they do let me sit exams alone, and they give me extensions for assignments and things like that. But yeah, I would say the feeling of like, isolation from my peers is probably the most intense thing.

Sarah Shaw  11:11

Yeah, I can only imagine how isolating that must be as my migraines didn’t really pick up until I was six months after graduating college. And I give props to seriously any student living with migraine attacks, daily migraine attacks, even episodic migraine attacks and how that is navigating. Not only college life, like exams, you know, studying, going to class, but also being a young person and like, you know, hanging out with your friends and going to social events going out to the bar, or like you said, party culture, like we have to navigate the world differently than our quote on quote, able bodied peers. And when you don’t have people that kind of understand what you’re going through, it can be very isolating, and a lot of people can maybe misunderstand, the reason for you not in or not engaging or not interacting is not because you don’t want to, of course, you want to still engage and interact with your social life the way that you always used to, but you’re unable to do to migraine. And what I like to say to people is that it’s not that I’m unreliable, it’s that my chronic illness is unreliable. And that’s what’s making life so difficult. And we have to like you mentioned, you can’t drink because of your head like that. Alcohol is a very huge trigger for a lot of migraine patients living migraine patients. And when you have a society that that’s a huge part of college life, you are kind of left out. What’s one thing that I guess you wish you could tell people that are out there, in a similar situation as you that where they’re struggling to kind of acclimate to life with a chronic illness like migraine.

Simar Batra  13:08

I guess I would say that loss it is really isolating at first there are ways to socialize with your peers, even if it’s not in the traditional sense and like a bar in like some really crazy overstimulating environment. Maybe in like an outdoor arena, you find, I guess, new ways to do things. And I guess the grief is really ongoing. But I think one thing that I really struggled with at the beginning of my chronic illness journey was feeling like everything was lost. And I had this like feeling of overwhelm. And like catastrophizing, which I’m sure you understand is like such a huge part of anxiety, feeling. Yeah, everything is just gone. But I think you’ve come to realize that they’re just like new ways of doing things. And you just like, you find a way to re navigate your college experience, you find like new joys, but yeah, that’s something that I’m always working on though like the anxious mind loves to catastrophize. So

Sarah Shaw  14:02

Anxiety is a friend that you don’t want that just knock knock, knock, Hello, are you there, it’s there. When I wake up, it’s there when I go to sleep and you add migraine on top of that. It’s like they’re the two annoying siblings that I didn’t want to engage with. But I love what you said about re navigating. I think that’s really beautiful about you know, learning kind of like when you miss a stop in life when you’re on your GPS and you miss a turn, but you’re able to reroute and reacclimate or readjust and re-engage with the world in a different way. And what really should be happening ideally is the world should be more accommodating to us. It shouldn’t always have to be us readjusting to the world. I wish the world was more accepting of people with disabilities and that employers were more acceptable and you know, I’m really lucky where I work at a job where I know if I’m having a migraine attack and I cannot work I’m able to take my medicine and lay down and wait for my medicine to sit in. And not every employer is like that. And you mentioned earlier talking about accommodations. And I know that so many people would benefit from listening to this conversation, if you don’t wouldn’t mind going into talking about how you navigated that? How you navigated getting accommodations, you know, what was the process like? And what are some tips you can share with our listeners about seeking out accommodations for the first time in university?

Simar Batra  15:28

Yeah, I think most universities, especially like in Australia, Canada, the US have pretty good disability services. They’re not perfect. But the first thing I did was like, just Google, like University of Sydney Disability Services, I hopped on a call with like the disability counselor, and she actually recommended to me what we could do for my symptoms, she was like, we can put you in a room with natural light for your exams. Because if we put you in a room with the rest of the students in the new building with the fluorescent lights, like and you lose, you have brain fog during your exam, if your performance is poor, it’s really not ideal. You can have extensions for your assignments, I was like, that would be really helpful. I already had like a prior academic plan in place for like another condition. So it was just an add on from that. And I think if I have an attack, I can apply for special consideration for like a further extension and on top of the one that I already have. So there are lots of different things that you can add on I also like I there are things that I do that my university because like I said, it’s not perfect. Sometimes they do say to me, there are things that you have to do that we can’t like accommodate. So they’re like, you have to bring your own textbooks. So we can’t give you a textbook or like print things out for you. Because if you can’t look at a screen sometimes. So I’ll be printing things out and preparing for class. So I’ll be honest, like, a lot of it is on me, like I find that a lot of the time, I have to do a lot of extra preparation. I think a lot of people living with migraine, like have to do more work. Because we just live in a very, we’re trying to adjust to a world for able bodied people. I so agree with you. I wish the world was more accommodating for us. And they try to do what they can. But most of the work I do feel like it’s on me, but it’s good to ask for what you can, but yet asking for extensions, and extra time on us on exams has really helped me as well, because they do I have like an autoimmune condition as well. So sometimes my hands can hurt when writing assessment. So that’s helped as well.

Sarah Shaw  17:24

Has it helped for you? Since you I know, you said you already had something in place. But getting a doctor’s note explaining your condition to get disability services, is that something that you had to do as well to kind of get accepted into accommodations?

Simar Batra  17:40

Yeah, so they actually had this like long form, I think it was like a bit too long. There’s lots of red tape around it, but they just had like a, I think six or seven page kind of form. And the doctor had to explain like, what kind of accommodations I need and how kind of severe my level of disability was, and how often my attacks were. And that’s how I got the accommodations. It was just from my family doctor, I didn’t have to go to the neurologist to get it. So it wasn’t too bad.

Sarah Shaw  18:04

That’s good. I’m glad that you realize, okay, this is something me going into university that I’m going to need to adjust to, and I’m going to need accommodations for. And I know for me, growing up, I had a learning disability. And I was very, I was very ashamed of it, I’m going to admit and so when I went to college, I remember my dad would tell me you need to go to the Office of Disability Services and like, explain to them but I had so much shame that I felt like I was less than and like now, you know, I’m so far into my migraine journey and like in the advocacy world, and I see that and I see you and I see you, you know, standing up for yourself and advocating for yourself. And I wish you know, I could tell younger me, “Hey, listen, like it’s going to be okay. There’s nothing wrong for you to ask for accommodations, if anything, it’s going to make your experience at college better.” And I think that’s exactly what you’re doing and what you’re doing with your Instagram account about sharing tips and tricks to help young people make their experience at college as best it can be with the hand that they’ve been dealt with living with a number of chronic and they replaced and more than just chronic migraine but with like anxiety, with depression, with arthritis with fibromyalgia, other invisible illnesses. And so I think you really took like the reins and you kind of took the narrative in your story to kind of make things work for you. And I just appreciate that you’re around and you exist in your you already are making so much change in the migraine community. Like you just made a post the other day about like tips for doing accommodations and it’s helped so many people and I saw so many comments saying I wish I had this when I was younger. And so I just know that you’re making a really positive impact on the community by leaving these tips for future you know, migraine elders and future migraine university people and so I appreciate you for paving the way for that.

Simar Batra  20:01

Yeah. And saying that also like it was really hard for me because I similarly to you, I also struggled with kind of self blame, I did feel kind of ashamed and like, I was like, maybe migraine is my fault. Maybe I did something to make it so bad took me about a year after being diagnosed, to make the study with migraine account and really start advocating for myself, but I was like, you know, I need help, because I can’t really see any students and or college students in this space. And I need to raise awareness and kind of share tips that helped me, and maybe I can help other people as well. So it takes time, I think to build up the courage. So I totally relate to your experience.

Sarah Shaw  20:43

Absolutely. And you’re right, it’s not going to happen overnight. It takes you mentioned grieving, you mentioned adjusting and taking time. And I think as people who I don’t want to say who were once able bodied, but now I have a chronic condition that you have to learn how to re engage with the world different way. I know we kind of touched on this earlier about living with migraine attacks can be very isolating, I want to turn around and see what sort of self-care tips do you do for you to make sure that you’re taking care of you.

Simar Batra  21:13

I think it doesn’t sound like self-care, because I feel like a lot of self-care tips are a lot of like spending time on your own and like bubble baths and stuff like that. But a lot of my self-care is like interacting with the migraine community, because that helps me feel less alone and just like understood, so nobody else in my immediate family lives with migraine. It’s just me, they’re very supportive. But obviously, they can’t really understand. So interacting with people on Instagram, living with migraine really helps me just reading about migraine and kind of staying up to date helps me as well. And also, I think doing my own self-care. So making sure I’m sleeping well like eight to 10 hours and eating regularly. And yeah, not pushing myself too hard. Because I think we can all do that. And that can really trigger an attack as well.

Sarah Shaw  22:01

Absolutely. I know you said it’s not self-care. But 100,000% is self care. And engaging in a community helps not only letting us know that we’re not alone, but it helps our mental health because I feel like for so long as women, you know, we’re especially like women of color, we’re told, like it’s not talked about our pain, and that it’s something that makes us look weak, or all of these other things. But in fact, like I feel like the fact that we live with this pain makes us that much stronger. And also taking care of you, like you said, like making sure you’re eating enough sleep and not pushing yourself too much not being too hard on yourself. Those are all wonderful things that we can do for ourselves, because society is already hard enough on ourselves as it is and living with anxiety is also completely exhausting. And we’re already hard on ourselves. So taking that extra time to take care of you is so important. Simar, it’s been so wonderful talking to learning more about your journey, what you’re doing for the migraine community. Is there anything else you wanted to add before we end here?

Simar Batra  23:03

No, I think so. I think you touched on everything, especially wanted to talk about just re navigating the world and overcoming that experience of isolation because I really do think it does get better, especially if you work on like not catastrophizing as much. But it’s hard.

Sarah Shaw  23:18

It is hard. It’s hard. But the more that we do it I think the easier it becomes and knowing that you’re not the only one alone out there dealing with it makes the journey a little bit easier.

Simar Batra  23:27

I agree. Yeah.

Sarah Shaw  23:29

Thank you so much for coming on the show and I hope you have a good rest of your day. Thank you for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating write a positive review and spread the word by sharing with your friends and family. It’ll help more people like you find us. I’m Sarah Shaw and I will see you next time.

Narrator  23:53

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

Narrator  00:00

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

Shruti Shivaramakrishnan  00:06

Over-the-counter medication feels a little more powerful in India than it does over here. But here, although I’m glad that I have access to prescription medication, which is much more targeted towards migraine, newer meds, it’s really hard to navigate the system. It’s hard to find the right doctor, it’s hard to advocate for yourself.

Sarah Shaw  00:30

Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host Sarah Shaw, Senior Manager of BIPOC Community Outreach at the Global Healthy Living Foundation. I have been living with chronic migraine for almost 10 years and I’m very open about navigating life with my chronic disease journey as well as my experience living with anxiety. This podcast will be a window into other patients lives as they navigate their own journeys living with chronic pain, migraine, and mental health. Today, we’re joined by Shruti, a migraine and mental health advocate who we’ve had on the podcast before and we’re so excited to have her back on. Shruti, how are your pain levels today?

Shruti Shivaramakrishnan  01:09

Today’s a green day so I’m enjoying that.

Sarah Shaw  01:12

Awesome green and green. And can you talk a little bit about people maybe that don’t know the stoplight symptoms? What a green days like?

Shruti Shivaramakrishnan  01:20

Okay, basically the stoplight scale functions as red is when your symptoms are too high so you have to stop. Yellow orange for when your symptoms are more than baseline. You can be functional, but you might have to slow down and green as you are symptomatic but you can be completely functional for as much as possible. And for those of us with chronic pain, it’s a fairly good day.

Sarah Shaw  01:43

Great, great. No, I appreciate that explanation. I think a lot of people might relate to that. And one of the things I like to start the show off with is by asking the question, if you could use one word or adjective to describe your migraine attacks, what word would you use?

Shruti Shivaramakrishnan  02:01

I’m stumped right now, because I’ve been reframing migraines, I don’t want to look at it as debilitating or anything. But I remember reading a long time ago about full blown assault on the body. And it pretty much feels like that, it does feel like an assault, but also more like this annoying roommate who doesn’t pay rent and who doesn’t want to get out. So that’s not one word. But that’s how it started.

Sarah Shaw  02:23

I’ll take that I will take the annoying roommate that shows up, doesn’t pay rent, doesn’t give you

Shruti Shivaramakrishnan  02:30

personal space

Sarah Shaw  02:31

Doesn’t give you personal space, right? It’s always there. I know some people name their migraine attacks and call them certain names. So I think that’s a very visual representation, you know, doesn’t clean up after themselves, make you take medicine. So I appreciate that. So for those of you that have been following Talking Head Pain for a while now, we’ve had Shruti on the podcast before and in that episode, you were very vulnerable and shared with us the realities of mental health and migraine. And I just wanted to take a moment to like thank you, number one for being so open and vulnerable with us and sharing with followers, you know, to know that it’s not easy, but that they’re not alone, I know that you share with us that was the first time you had kind of opened up about the realities of mental health and migraine. And my focus for these episodes is to allow our guests to talk about the intersection of mental health and migraine. I think it’s such an important topic that often doesn’t get talked about. And so I think the more and more that we talk about it, and it happens to be Mental Health Awareness month, I think it’s very fitting, I am especially really drawn to the work that you’re doing with chronicallymeh from both your website and Instagram page, especially the message that you share with your followers about like it’s okay to not be okay, I would love it if you would just share with us why you started your page and why the focus on migraine and mental health.

Shruti Shivaramakrishnan  03:58

So first of all, thank you for giving me the platform the first time and it’s because I had that platform, I was able to confront whatever I’d been through so which is why it was so easy talking to you and Joe so it was so easy to open up and be vulnerable about it. So why I started this, I was in a really dark place. I have lived with migraine since I was a child. And for most part at least for 30 years, I thought that was normal. I thought my pain was normal, and something was wrong with me and that I was lazy that I was not able to keep up. And as the symptoms got worse and worse. I just kept pushing myself and things just snowballed. And it still didn’t stop until I hit burnout. Lucky for me or I’m lucky in a way I moved countries exactly at that point. And I was able to take a break because I had a kid that I had to take care of but it was also a very scary period of time because I did not have my support system. My husband and I were new here. He had his own stress from work and trying to keep us all afloat and all that and I had been off my medication for a year because of pregnancy. So migraine got really bad. My mental health also is something that I’ve struggled since I was a kid. Again, we can talk about that later. But this was a period of time when I was on no medication, had no support, had nobody who would understand not that I had people who understood before, but it just felt very real. I felt very isolated. And I did ask for help, because I’ve been quite intuitive about my health before. I’ve been intuitive. And you know, the voices in my head started saying, hey, maybe it’s time to quit, you know, can’t do this anymore. But I didn’t get the help. Like, I asked my doctor, I tried all the helplines, I didn’t get the help. And I ended up overdosing on meds because my brain just said, okay, this is it. I don’t want to live anymore. And when I survived that when I got through that, I realized that I was not alone, because I was introduced to a community of people who felt the same way. That was the first time I heard someone say, hey, I’m having memory issues because of migraine, hey, you know, my pain is so bad that I can’t get out of bed. Or as simple as you know, I’m not able to engage my kid, or I’m not able to do laundry. Those things felt so isolating. It felt like my own struggle, and only my struggle. And it felt like I was a failure. It was really hard for me to deal with. So when I met the community, I realized, okay, I’m not alone. And that changed everything for me, just knowing that I wasn’t alone. And then I heard someone else’s story she said, I’ve been living with this for a long time. I’ve been to every doctor, the doctor says he can’t do anything for me. And I asked him, okay, I can’t live like this, can you help me die, and he gave me the number for medical assistance in dying. And I thought a doctor shouldn’t be doing that. Like nobody should be doing that having been through it myself. I knew even at that point that there is another way, I just wish someone would show me the way. So I didn’t want another person to feel that way again, and migraine is invisible. And the mental health impact of it is very real, especially because it’s invisible. So I started the page just to share my story and let people know that they’re not alone.

Sarah Shaw  07:09

I’m so glad that you’re here with us today. And that you have created your Instagram account and your blog page, You are absolutely right, knowing that you are not the only one going through these symptoms. Because when you live with migraine, it sometimes it feels like you’re living in a bubble because like you said, it is so invisible. So you could be walking down the street and a migraine attack. And you wouldn’t know the person, you know, in the same office as you, in the same building, and in the same community, and the same mom group as you is also living with this debilitating illness. And we’re all kind of walking around alone. And that’s not how we have to be. And I remember, I relate a lot to your story, because that’s how I felt I was in my very early 20’s when I started getting my first migraine attack. And I was like, what is wrong with me? Like, why am I so sick, but so many of my other friends are still going out? They’re still doing things, they’re going to weddings, they’re going to places that I couldn’t be in anymore. And I really thought like I was the only young person in the world living with migraine because you go to the waiting rooms and you see you look around and you’re like, I’m the youngest person here. And I think what I found like you was finding that online community of support, and I think that’s what your page does for people. I think that’s what drew me to your page where I was like, oh my gosh, finally like somebody else that is talking about the very serious implications of mental health and migraine because the two are comorbidities, they go hand in hand, if you’re in pain, and it’s not seen, and it’s not validated by doctors, by your family members, by your friends, you’re going to feel very alone. And so I think these communities that we found are super important to our mental health. And so I think the posts that you create, let other people like really know, I think the illustrations just show they’re not the only ones going through something like that. And you mentioned that you were moving countries right around the time that your migraine attacks started to get worse. And I know for those of you don’t know, I know that Shruti is originally from India, and now you’re currently living in Canada. I know you talked a little bit about it on the last podcast episode. But do you mind sharing with us your experience of navigating the healthcare system in India versus navigating the healthcare system in Canada?

Shruti Shivaramakrishnan  09:31

It is so different. I mean, I’ve been asked this question multiple times. It’s been hard to answer it because it’s so different. India has got so many doctors, like we have clinics on every street. We can walk and knock on a doctor’s door and asked to be seen right now. Canada, I have to wait a year, a year and a half to see a specialist. I need a referral from a GP. I have to convince the GP that I need to see that specialist. That’s really hard for me to navigate a system that way, but when it comes to taking care of myself, I keep doing this, I don’t know which is better. In a way, India is not as educated about migraine, the doctors themselves aren’t as educated about it. So I was on prescription medication for a very long time. And the same medication which which is probably not prescribed as much today, I was not educated on medication overuse headache, medication adaptation headache, I was not told that I shouldn’t be on the prescription medication for that long. And it will cause issues with let’s say, kidney and liver and heart and have side effects or long term use. So I was not educated on all that. And that ended up adding to the disease. So migraine was actually not in control at all, all those years that I was on medication, we just kept increasing the dosage every single year until I hit a limit. And every time I went back, I said, this is not helping at all. But nobody told me that there’s something else we can try. Because there, there isn’t much available there. I mean, the CGRPs and other stuff is not available.

Sarah Shaw  09:34

They’re not there yet. No.

Shruti Shivaramakrishnan  11:05

And neurologists don’t think migraine is exciting enough to treat, there’s still a lot of stigma. So you’re sent back home with the message that, hey, you just have to live with this. And it’s common. But when it came to alternative remedies, that was easier for me to access. When I was in pain, I just go to the salon and spa and get a massage, I’d go get you know, acupressure, I would find different ways to relieve myself with a headache in the moment, even over the counter medication feels a little more powerful in India than it does over here. But here, although I’m glad that I have access to prescription medication, which is much more targeted towards migraine, newer meds, it’s really hard to navigate the system, it’s hard to find the right doctor, it’s hard to advocate for yourself, because they don’t want to hear they don’t want to listen to you for more than 15 minutes. I mean, even if your appointment is 15 minutes long, you’re out in five or four minutes even. And that just feels really unsupportive. Like it’s not enough. And on the other hand with medication, you have to prove to your insurance provider that you need it even after your doctor prescribes it like I’ve had a year long fight to get my current medication. So that’s been really stressful and taxing. With alternative health remedies, it’s been so difficult to be able to pay for it because tax in Canada is really high, regardless of how much you make half of it goes in tax. 40% of it goes in rent, you know, the rest of it goes and groceries and everything. So it’s really hard to pay for the tools that you need to treat yourself even if you don’t have your prescription medication. So yeah, I try to have the best of both worlds in a way that we are feeling lucky. So I have a therapist in India. So therapy really helps me with, you know, managing the stress and the mental health aspect of it. I do get a lot of herbs and all that from India, let’s say pain bombs and stuff. And every time I visit, at least this time that I was there, I went and got a massage almost every single day. So that would have cost me nearly like 10’s of 1000’s of dollars over here, over there, I was able to do it and make less than 500 for the entire visit. So yeah.

Sarah Shaw  13:13

Wow, you have a lot of really important things. First, you were talking about your doctor’s appointments and how they were only five to ten minutes long. And I think that that point is something that is being felt across at least I know, in the U.S. too. There’s not enough neurologists, there’s not enough doctors anymore, and our healthcare systems are starting to become very overwhelmed. And I think that it’s now trickling down to affecting patients to affecting patient care where doctors are having to rush through their appointments because there’s just not enough time to see the heavily influx of patients dealing with migraine conditions. The second thing that you mentioned, which I’m so glad is that you are seeing a therapist and you’re seeing a therapist in India and you’re adding to your migraine toolkit of you know, massages and herbal remedies and I think that a lot of people think that there’s only one way to treat migraine but I think having a toolkit like for me, my therapist is part of my migraine toolkit. My partner is part of my migraine toolkit, you know my peppermint oil as part of my migraine toolkit. To make sure that I am trying to live and navigate the world as best as I can while living with a condition where you’re in some amount of pain or nausea or brain fog or light sensitivity it affects every part of our day, even if it’s not just pain. The brain fog for me is sometimes the thing that I struggle with the most especially the postdrome of that that feeling of feeling drowsiness and like dizziness and confusion and trying to like navigate and speak coherently where I’m like, I forgot the word for this and I have apologizing saying that in meetings, but normalizing it by talking about it more, I think has allowed me to take back the power a little bit of like, I’m going to talk about this, this is who I am, and this is how I live. And I just happen to be a person that lives with anxiety and migraine. And here I am, I want to switch gears and talk about something that is really important to me. And I think something that I don’t know if you realize you’re doing but it’s so important, and It’s about your Instagram account and your comics. And I take such joy in like reading and seeing your illustrations. I’m such a nerd, I love comic books. And so anytime I see any kind of comic that’s related to someone living with a chronic illness, I get excited, because I’m like, look at someone like me in a comic living with a disability or living with a chronic illness. But what speaks to me the most is that your comics reflect you as a woman of color. And that is so important, because I don’t think there are many spaces out there that intersect both chronic pain and being a woman of color. Usually, the illustrations are all white people. And it means a lot as a black woman to see a brown woman comic where I’m like, oh, my gosh, I’m going to share this because it’s going to make people feel seen and feel heard. I want to know why you it was important for you to make sure that your illustrations reflect you as not what you typically see online.

Sarah Shaw  13:16

First of all, thank you for being kind and all the compliments, I’m not good with hearing good things about me, I don’t know how to respond to that. It’s a part of the imposter syndrome and the anxiety and everything that comes along. So two things, the reason I chose to illustrate and I’m not an illustrator, you know, it was not a part of whatever I did, I’m actually a writer, and I could really write well. And I could be sarcastic and funny and however I want it. But I realize people like me probably like me don’t have much of an attention span. So you know, this is the best way. And even for me, when I was writing, I just lose track of my thoughts. And I was not able to write this was easier. And doodling was a way for me to reclaim my childhood. It was something that I really enjoyed doing as a child. Art. And I stopped doing once migraine hit, I can literally remember the seventh grade and I completely stopped. So this is a way for me to reclaim that. And when I started illustrating, I didn’t think that actually create characters, I just wanted to share it and whatever words text, you know, in textual form, but the more I did it, the more I really wanted to put a character out there. So people have something funny, relatable, explaining something that’s morbid and depressing, you know, just a combination of that trying to lighten the situation and talk about things like how we talk about them in our heads. When I first started doing it, I did not use color, because it was just doing the doodle itself was taxing for me. So color felt like more effort. So I just left it. And someone commented saying what, hey, you’re a person of color. And this is a representation of you know, all white people. And I understood how important that was. And I took that feedback. And I saw thanks to you that being a person of color has its own issues and its own struggles, I recognized that I was being discriminated against. And I was facing challenges in the healthcare system, or even otherwise. And I saw that there was nobody who looked like me in this space talking about migraine. So I just want it to be that for others. So I wanted to tell the story as myself, that was the best way I could do it.

Sarah Shaw  18:41

I I’m such a fan of that and your story. And I’m so glad that you continue your doodling hobby after having to put it down for so long. And I think that I’m no artist, I’m no doodler. But that’s something that I always wanted. I was like, I wish I could doddle though I wish I could do that. So anytime I see comics or representation of someone in a chronic illness space that kind of reflects and looks like me, it’s so important. And so I’m so excited that you can that you took that feedback and that you made it into you and you made it into your own you made this character who’s now this representation of you know, brown people out there. And I think you know, you mentioned that you were talking about Migraine India and allowing people to kind of see themselves in your art will encourage them to say wait a minute, like this person has these conditions and is taking it seriously and going to the doctor and getting treatment maybe I should also you know it is more than quote unquote just a headache. It is invisible that can’t be seen. But there are options out there to get better treatment.

Shruti Shivaramakrishnan  19:49

I’ll be honest, one of the reasons why I didn’t want to use color apart from of course not having the energy to do it was I felt like an imposter in many ways. I’ve felt like there’s nobody looking like me out there. So maybe my story wouldn’t be taken as seriously. Or maybe I’ll get laughed at. That’s always in my mind, like, every day when I doddle, and I put in the color, I think maybe I should just leave it white. And my question that thought that’s when I ended up at this answer, you know, maybe we’ll reach more people if it was white. So it’s just the conditioning, that I’m trying to unpack all the internalized racism and everything that I have learned and I’ve grown up with just trying to unpack that. And yeah, pushing on and trying to represent people so that more people not just in India thing across the world, especially in the east, we are taught not to complain about our pain. We talked about this before, we’ve had so much intergenerational trauma. And it was hard for people to get food that was something they would struggle with, it was hard for people to survive. You know, they’ve been through all of this. So they will never complain about pain. My grandma had 16 kids, she had no opportunity to complain about pain.

Shruti Shivaramakrishnan  20:59

So when I started complaining of pain, people would say, oh, but your grandmother was so active until she was 80. And that’s when I realized that nobody was ever given the space. And it’s okay for us to complain about pain. It’s easy for us to believe that we are drama queens, and we’re just being lazy, or we’re being overly melodramatic and we just seeking attention. It’s easy to believe that because so many people are telling you, but there came a point when I realized it’s okay, every generation has it struggle to struggle wise, this is my struggle. And they’ve done so much to bring me here. So it’s okay for me to take another step forward for let’s say my daughter so that tomorrow, she can complain about, hey, you know, sun is too bright, whatever she wants to know,

Sarah Shaw  20:59

Right.

Sarah Shaw  21:44

I think you brought up a really, really important point about generational trauma and the differences that the generations before us had to go through and struggle with, and us breaking those, I don’t want to call them chains. But what our generations before us had to go through, we are breaking that cycle by saying that we don’t have to go through that because we now have the resources. There’s advocacy groups out there. Now, there’s other resources that are out there now that unfortunately, our parents and our grandparents did not have access to and what better way as we get more access to treatments and medications and advocacy, and learning how to use our voice for good. For me, I take that with I’m doing this not only for myself, but for the generations that came before me because they did not have that access. I think that’s such a beautiful thing that you’re doing to break the chains for your daughter, you know, coming up as well.

Shruti Shivaramakrishnan  22:43

Thank you. Absolutely, I think they did their best to bring us here where we don’t have to worry about food, we don’t have to worry about freedom of speech, and all those things. So we can now look at the other issues, we can now normalize mental health, we can normalize migraine at work, we can normalize migraine at school, having a chronic illness and living with it. So my hope is just to make this world more inclusive and more compassionate towards people like us, at least for my daughter’s generation, if not ours, and I’m sure it’s happening. Like I can see a lot of changes in the past two years alone, but I hope we can do more.

Sarah Shaw  23:19

Absolutely. That was so beautiful. I have one last question. We’re gonna round it up. I know that with living with chronic illness like migraine, it can be very isolating and lonely. What self care tips do you do for yourself to make sure that you are taking care of you?

Shruti Shivaramakrishnan  23:34

I used to do a lot of things before I had a daughter. And then I didn’t have time for anything. So I found little things like taking an hour for myself in the morning to just sit and enjoy the birds singing or maybe listen to the train. And then I started adding one after the other have a morning routine where I wake up, I make tea, I juice the celery because I start my day with a lot of water. And then I sit and read a book or I doodle as I’m sitting in the balcony, regardless of what weather it is. I watch TV when I can. I take a walk with my dog, self-care can be taking a nap for me like I take a nap before my daughter comes home from school. And it’s often saying no to things. So it’s often giving myself permission to say no permission to just be selfish. So that’s something that I’ve really worked on. And I’m proud of, because I can’t burn out again. And you shouldn’t have to burn out to know that you have to take care of yourself and put yourself first.

Sarah Shaw  24:33

Absolutely.

Shruti Shivaramakrishnan  24:34

Unless you take care of yourself, you can’t really take care of anybody else. You can’t be that for anybody else.

Sarah Shaw  24:39

As I say to a lot of people you can’t pour from an empty cup right, when our cup is full and when our cup is empty. It produces different kinds of results and when you’re pouring from an empty cup, the end result is not good on either end. So I’m really glad to hear you say that you are prioritizing yourself. You’re making yourself number one you’re putting up boundaries is to protect your cup, to make sure your cup stays full. So I think that that’s a beautiful message for our listeners. Well Shruti, I just want to thank you so much for coming on the show again today. It was a pleasure having you on and I learned something new and just become so inspired by your messages you share with not only our listeners, but your followers everywhere.

Shruti Shivaramakrishnan  25:20

Thank you so much for the opportunity again. It’s always a joy talking to you.

Sarah Shaw  25:25

Thank you Shruti. Thank you for listening to this episode of Talking Head Pain the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating write a positive review and spread the word by sharing with your friends and family. It’ll help more people like you find us. I’m Sarah Shaw and I will see you next time.

Narrator  25:47

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

Narrator  00:00

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

Joe Coe  00:10

Hello, and welcome to Talking Head Pain, a podcast that confronts head pain head on. I’m here live at the American Headache Society’s Scientific Meeting. I’m sitting with Dr. Pocock, who’s going to talk to you about some of the research she’s presenting, as well as what it means to be a headache and migraine fellow. How are you doing today, Dr. Pocock?

Dr. Kristyn Pocock  00:30

I’m doing well. How are you, Joe?

Joe Coe  00:31

I’m great. So it’s so nice to meet you.

Dr. Kristyn Pocock  00:33

Nice to meet you, too.

Joe Coe  00:34

Can you share with our audience the research that you’re presenting?

Dr. Kristyn Pocock  00:37

Yes, so as a headache fellow, meaning a physician in training for a specific subspecialty like headache, I submitted a summary of my research and exploring the impact of breast size on headache. This is a topic that’s been explored thus far, primarily in the plastic surgery world. And there’s really been no crossover crosstalk with the fields of neurology, pain medicine, or headache medicine. So I’m excited to bring some of that data to the conference and start increasing awareness of the studies that show that there actually is a correlation with breast size that women with larger breast size can experience headache and can experience improvement after breast reduction. As a headache specialist though we have no idea what headaches actually get better for breast reduction, because the surgeons are not asking those headache oriented questions. So it is my goal in the future to help you answer that question.

Joe Coe  01:30

And what drove you to attempt to answer this question?

Dr. Kristyn Pocock  01:34

That’s a good question. I experienced a worsening of my own migraines following the birth of my son when I chose to breastfeed, and I started exploring that relationship. And there were a lot of just blogs and blogs and kind of non-formal data out there that suggested maybe had something to do with breast size. There’s a lot of evidence already out there scientific evidence that links worsening with headaches during certain parts of pregnancy and breastfeeding with hormone fluctuations. But breast size itself had really never been talked about, given the fact that a lot of women’s breast size actually increases dramatically during their seasons of breastfeeding. So I started asking that question myself during my own breastfeeding journey. And it’s led to forming a lot of really fantastic collaborative relationships I’ve had a lot of women approached me saying, oh, my gosh, I’ve thought about this too, you know, when I went from breast size X to breast size Y or when I was breastfeeding myself, or when I lost a bunch of weight or gained a bunch of weight. So there’s a lot of enthusiasm for this topic.

Joe Coe  02:31

That’s so important for our audience to hear that people that are doing research are people and you happen to be impacted by the research that you’re doing and it’s personal to you. I think we often don’t see that on the other side of dissemination of research or hearing about research as patients. So I think that’s a really nice thing to highlight here that you are prompted by your lived experience to tackle this research question.

Dr. Kristyn Pocock  02:57

Absolutely. I was just speaking with another investigator earlier today who’s exploring how fertility treatments affect migraine headache and tension type headache and that was driven by her own personal experience. So even negative experiences or challenging experiences can bring an investigator to asking a really important question.

Joe Coe  03:16

Is there anything in your research that indicates headache frequency or prevalence in the transgender community?

Dr. Kristyn Pocock  03:23

That’s a good question as well, especially as we’re talking about hormone exogenous hormone use. I know that that is a priority for the AHS research community. They actually just spoke about that yesterday. But I myself have not explored that body of literature. I know that body of literature exists outside of the headache world, but I know as of 2023, it was highlighted yesterday as a priority for kind of catalyzing research in that growing field of medicine.

Joe Coe  03:50

And in the poster hall, have there been any other posters that have stuck out at you that you think our audience should know or at least be aware of?

Dr. Kristyn Pocock  03:59

The one poster that really drew my eye was a poster that came from University of Connecticut Health. It was a lead author in the obstetrics and gynecology department there and her team actually explored or tried to answer the question, is Botox safe during pregnancy, and they actually used five human placentas and infused the placenta as after birth with Botox up to 200 units of Botox which is an important number because we actually tend not to go above 200 for treating migraine and they found that none of the Botox cross the placenta so that I thought was a pivotal, small, albeit small study a pivotal study to really help answer the question, can we use Botox safely in pregnant and lactating pregnant patients, because we don’t actually have too many therapies available for the pregnant woman or pregnant patient with headaches? So I thought that was an exciting starting point that’ll begin to answer that question.

Joe Coe  04:50

Super interesting. And my last question for you I had Dr. Nye on earlier today. You’re her fellow. What does a fellow do and what does that mean?

Dr. Kristyn Pocock  04:59

What being a fellow means is that you are a trainee kind of toward the terminal end of your training experience. So you’ve completed medical school, you’ve completed your basic residency training, and you’ve decided to pursue additional specialty training. I myself actually left practice as a kind of an attending or faculty member doing a different field, practicing a different field of medicine, neuromuscular, because I really fell in love with headache and wanted to gain that really kind of niche experience of how do I treat not just headache, but the really kind of esoteric headache conditions, the rare headache conditions? How do I treat the patient that’s maybe tried 40 to 50 meds, and is not responding to anything? What types of questions should I be asking? What types of procedures or diagnostic interventions do I need to perform? And fellowship not only kind of challenges you to learn how to think in the box and outside of the box, but it also gives you the opportunity to, to establish fantastic mentoring relationships, it allows you to attend events like this and network with people outside of your institution. And it gave me the opportunity to explore the world of clinical research, which I fell in love with which I hadn’t, I had no idea that I love clinical research before returning back to fellowship.

Joe Coe  06:13

That’s so amazing and important for people to hear that there are doctors that want to help some of the hardest to treat patients because I know that the people that are listening that have had tried 30 and 40 medications are at the end, and they feel like there’s nothing left. So hearing that there are people coming into the field to help us that are in that space can be life changing. So really appreciate all of your energy and anything that you want to share that we didn’t cover.

Dr. Kristyn Pocock  06:44

Well, I would just add to that end that if there are patients that are listening that feel like they have exhausted options, but have not yet consulted with a fellowship trained neurologist or visited a tertiary academic center, that that’s something that they should absolutely do, because it’s really it tends to be the UCNS headache fellowship trained folks who are more comfortable with those complex situations. They sit down as a group talk about difficult cases. So I would just explore if you’re listening I would implore your listening audience to consider meeting with a fellowship trained tertiary neurologist if they’ve not yet done that and have are feeling hopeless.

Joe Coe  07:22

Amazing. Well, thank you so much for your time really fascinating research that you’re doing, and I look forward to following your career and trajectory.

Dr. Kristyn Pocock  07:30

Thank you, Joe. Thanks for having me.

Joe Coe  07:32

Thank you for listening to this episode of Talking Head Pain. The podcast that confronts head pain head on. This podcast was made possible with support from AbbVie Canada. If you have any questions, thoughts, or suggestions for us, you can send us an email at [email protected]. If you enjoyed this episode, please give it an honest five star rating. Write a positive review and spread the word by sharing it with your friends and family. It’ll help more people like you find us. I’m Joe Coe and I will see you next time.

Narrator  08:04

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

Narrator  00:00

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

Joe Coe  00:10

Hello, and welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m Joe, your host, and I’m here in Austin at the American Headache Society. I’m sitting with Dr. Nye who’s going to share some of the exciting things that she’s learning about at the conference today. How are you doing, Dr. Nye?

Dr. Barbara Nye  00:28

I’m doing fabulous, thank you. I work over at Wake Forest Atrium Health Wake Forest to be specific. I am the Program Director for the headache fellowship and you’ll get a snippet of what that means from my fellow shortly. But as far as the headache conference, this is a really exciting time to be able to collaborate with my colleagues come together, get our research aligned, figure out what our goals are. And I think the exciting things that are happening right now are that the American Headache Society is actually assessing where we are in the field of research and where we going in the next five and ten years. And that’s been a major focus of this particular meeting, it is our scientific meeting. And so focusing on the science that is underneath the underpinning of migraine headache disorder, as well as all the other headache disorders. I’m excited this morning, there’s going to be a plenary session looking at kind of lesser researched headache disorders cogenic headache, new daily persistent headache, which I know you’ve spoken about in the past. I think the other really neat thing is figuring out what our research initiatives are. So looking at the diagnosis, the animal model, the basic science model of the research that’s going on in the space of headache, and migraine, specifically.

Joe Coe  01:38

Dr. Nye, can I ask you a follow-up question? So you were talking about the American Headache Society reviewing a five to ten year strategy? What does that mean to patients?

Dr. Barbara Nye  01:47

Hmm, that’s a really great question. I think what it means to patients is that we’re going to start having goals that are tangible. And so the hope is that we identify our patient population better. And I think that’s one of the major things that I would like to see is some diversity in our research identifying not just the white, middle-aged woman and how she usually she responds to headache management, but rather getting a diversity of ethnicities and genders involved in the headache research and understanding how headache may manifest differently, are there differences in the way we treat folks with these headache disorders? One of the goals was actually to evaluate how we optimize headache diagnosis and management. And within that categorization, they’re looking at developing strategies for how do we identify if a patient responds to one therapy versus another. And some of this may be AI-based, some of this may be genetic-based. So this is the opportunity to do that research and figure out how do we identify our patients that are going to respond to things rather than having a we have to go through step one, step two, step three, and see how medications work?

Joe Coe  03:02

That’s a really interesting piece of information, particularly the AI so that there was a session about AI. Were you able to attend that?

Dr. Barbara Nye  03:10

Unfortunately, I have not. It is on my list to listen to, hopefully very soon.

Joe Coe  03:15

Very good. Is there anything else that you wanted to share with our audience while we’re together?

Dr. Barbara Nye  03:19

I think raising awareness that headache has a subspecialty fellowship program and how to get people interested that we train folks that have come from internal medicine backgrounds, as well as family medicine, neurology and psychiatry, that folks should be starting to get interested in medical school maybe even before that encouraging folks, especially those younger in the audience that are thinking about medical education, interested in the space as being something that’s worth taking the effort, and really developing new questions and answering them, much like my fellow has coming up with new questions and hopefully coming up with answers over the next coming years.

Joe Coe  03:58

Awesome. Well, thank you so much for spending this time with us. I know that our audience will appreciate the insights that you shared.

Dr. Barbara Nye  04:05

Thank you.

Joe Coe  04:06

Thank you for listening to this episode of Talking Head Pain. The podcast that confronts head pain head on. This podcast was made possible with support from AbbVie Canada. If you have any questions, thoughts, or suggestions for us, you can send us an email at [email protected]. If you enjoyed this episode, please give it an honest five star rating. Write a positive review and spread the word by sharing it with your friends and family. It’ll help more people like you find us. I’m Joe Coe and I will see you next time.

Narrator  04:37

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

Narrator  00:00

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

Joe Coe  00:06

Hello, and welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m here live at the American Headache Society sitting down with Dr. Nierenburg she’s going to share with you what she’s excited about learning at the American Headache Society’s meeting here in Austin.

Dr. Hida Nierenburg  00:26

Hello, Joe, thank you for having me. So I’m very excited about seeing how the newer therapies that we have in the past few years are changing people’s lives and potential side effects and where we can go next. Also, I’m excited about potential new treatments that will come down the pipeline or potential new treatment targets, which is this is a fun meeting where we find out all the research that’s going on.

Joe Coe  00:52

And you currently are a practicing provider, how do you see this research impact the way that you deliver care with your patients?

Dr. Hida Nierenburg  00:59

So I’ve seen live on from the era where we didn’t have CRPS. Now we have nine new different treatments in the past few years. So I see how that changed my patient’s life like I always joke, yes, it makes my job a lot easier, because I have better options that are safer and the patients that didn’t respond to their treatments nowadays respond. So I think I will be excited about seeing the shift, potentially newer treatments for those patients that the treatments we have they don’t always work.

Joe Coe  01:25

And do you find that you talk to your patients about what you learn here?

Dr. Hida Nierenburg  01:29

Oh, all the time. So before coming here, I tell my patients I’m going to the scientific meeting and it’s exciting. And I’m gonna learn about new treatments. So I always talk about my patients about what’s coming. So yes, all the time.

Joe Coe  01:41

And what do you think the most important thing for a patient to know about these scientific meetings?

Dr. Hida Nierenburg  01:47

That there is hope that there’s a lot of people working how to better at the life of people that are suffering with migraines, and nobody should suffer in silence. Which is something I tell all my patients.

Joe Coe  01:59

Yeah, I think it’s so important for patients to understand there’s hundreds if not over 1,000 doctors and health care providers here in Austin, all talking about headache and migraine treatment, there are so many people that care about us that are advocating and that are pushing the boundaries of science to better understand our disease. So it’s really exciting to hear that. So you currently are working with a fellow how is that impacting your practice? And what do you do with a headache and migraine fellow?

Dr. Hida Nierenburg  02:28

So actually, she’s gonna come in July, it’s my first fellow but no, I’m very committed to making sure that she knows all the new treatments on making sure they’re up to date with whatever the newer treatments and how to better improve patients’ quality of life.

Joe Coe  02:42

For our audience, what is a fellow?

Dr. Hida Nierenburg  02:44

So a fellow, it’s what you do after residency training, so it’s a specialty training. So I always say to my patients that they say oh, there used to be the doctor that did a little bit of everything. And now we have a doctor that specializes and learns a few conditions very, very well. So it’s mostly for headaches and all kinds of headaches that are not just migraine, as some people are aware so she will be focused or he focusing learning how to be an expert in treating these conditions.

Joe Coe  03:11

Any last words for our audience?

Dr. Hida Nierenburg  03:12

I like to always tell everybody you’re not alone. And there’s hope and I’ve seen that happen from when I graduated fellowship to now I am excited about what’s there to come.

Joe Coe  03:22

Amazing. Thank you. Thank you for listening to this episode of Talking Head Pain. The podcast that confronts head pain head on. This podcast was made possible with support from AbbVie Canada. If you have any questions, thoughts, or suggestions for us, you can send us an email at [email protected]. If you enjoy this episode, please give it an honest five star rating. Write a positive review and spread the word by sharing it with your friends and family. It’ll help more people like you find us. I’m Joe Coe and I will see you next time.

Narrator  03:55

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

Narrator  00:00

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

Marta Mrozek  00:10

“The main thing that I would change, it would be to really listen to my body and not to feel like I need to perform. Like I need to be somebody for everyone else. And as you said, you know, putting the smile on our faces, it’s very challenging, and at the same time, that’s why this disease is so invisible, right.”

Joe Coe  00:34

Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host, Joe Coe, Director of Therapeutic Area Growth and Integration with the Global Healthy Living Foundation, as well as Co-President of GHLF Canada. I’ve been a migraine patient for over 20 years. So I know firsthand how debilitating this disease can be. I’m here today with an amazing advocate Marta Mrozek. She’s a psychotherapy student who lives with migraine. She also is a volunteer advocate with Migraine Canada. And in our pre-interview, I learned that she loves animals and has a dog that takes up a lot of her camera roll. I can totally relate because my two cats do the same. How are you doing today, Marta?

Marta Mrozek  01:19

I’m doing okay. Thank you for having me, Joe.

Joe Coe  01:22

My absolute pleasure. So a question I like to ask folks on Talking Head Pain is to explain in a couple of sentences, what their worst migraine attack was like? What they felt? What went through your head? Can you walk us through that?

Marta Mrozek  01:36

Well, it is an interesting question, because I’ve been living with this condition since I was five years old. So I had a lot of bad migraine attacks. But when I think about my worst, for some reason, while I kind of know why, but my thoughts gravitate toward my last week at work. And back then I worked in healthcare, I used to be an event specialist. And we had a three-day event conference. And I had this excruciating migraine pain for all these three days, 72 hours. And with all the symptoms, you know, the sound sensitivity, light sensitivity, nausea, obviously, my speech was affected. But at the same time, I had to be responsible for the registration. I was the first contact for speakers, and I had to have a smile on my face. So it was really, really tough. And to be honest, I still don’t know how I managed. But what I remember the most actually was when I said in the cab on my way home, I remember the feeling. And that was the first time I was 33 years old then, and that was the first time I felt defeated. I felt lost and so petrified. I felt like this is the end. And I just didn’t know what will happen next. And when I got home, I still didn’t know what to do. It wasn’t you know that I had an action plan in my mind. It was still my family. And with their support, I actually made the decision to take a sick leave, which because I was kind of in the denial about my whole condition that was already chronic. I thought that it will take me probably oh, you know, two weeks and I will go back to work. But yeah, I found myself on disability for over 10 years. So I think it was my worst because it changed my life. It really truly changed my life.

Joe Coe  03:25

That’s a really powerful and vulnerable story that you’re sharing. I appreciate your honesty. It’s a good reminder for folks that are listening that people might have a smile on their face and going through a lot and could be in a lot of pain, could be going through a lot of emotional stuff. So it’s really important to remember that we’re all dealing with different things and sometimes you can see them sometimes you can’t and Marta’s case, she was smiling as she was in excruciating pain at this life changing moment. So a really, really important reminder for our audience, thinking back, Marta, what you know now and where you are today, what would you want your younger self to know maybe that Marta in her early 30’s?

Marta Mrozek  04:10

I think about it a lot because, as you know, I’m psychotherapy student. So that’s a lot of going back and analyzing, but really the main thing that I would change, it would be to really listen to my body and not to feel like I need to perform. Like I need to be somebody for everyone else. And probably I would start therapy a lot sooner than I did. Because it is very tough. It is very tough. And as you said, you know, putting the smile on our faces. It’s very challenging, and at the same time, that’s why this disease is so invisible, right? But then we want to go ahead, we want to have normal lives, but we need to have a support. And I think I would probably seek this support a lot sooner. But yes, as I said, I was in denial, I just didn’t want to face it, I wanted to be as everyone else. And to be held to a certain degree, I was controlling my, you know, I felt that I control my migraine because I was taking the medication helped to a certain degree for some time until it stopped.

Joe Coe  05:18

There are two questions from that beautiful statement that I want to dig in a little deeper, can you the first one that I have for you is, can you explain a little bit more what you mean by you would learn to not perform? What is performing migraine look like to you?

Marta Mrozek  05:33

To me, it was and sometimes it still is, to be honest, it’s like putting a mask, because I find that people don’t really want you to see being sick. You know, and as I said before, like you go to work or you are with a family, and you want to be with a family for whatever event it is or even like to get together. And you put this mask on, and pretend in a way if you can, if you can, because obviously when the pain takes over, it’s not possible anymore to do it. But I think it’s very difficult at least it was for me, admitted that I am sick, because in my head was that I’m less than for some reason, like being sick meant that I’m not good enough. And that’s why admitting that I have this pain, it meant that I will not be accepted. So um, so I pretended.

Joe Coe  06:23

I understand that sometimes my friends now like to, I guess play a game. It’s not a game, but it is where if I post the picture, they sometimes comment oh, you look like you’re having a migraine attack. I could be out in the world doing anything. And the last time maybe a month ago that someone commented I was like, no, I’m just tired. So it swings in the other direction. Sometimes when you raise a lot of awareness. You often talked about the importance that you found of being in therapy and getting into therapy sooner. What was the process like for you? Did you have to see a lot of different therapists to find one that you liked? How did you find someone that gelled with you and also understood migraine?

Marta Mrozek  07:06

With me? Actually, yes, I went through a process of finding the right therapist, it was that I was thinking of working for right therapist, but back in the day, when I was on sick leave from work, my mind was set. You know, like I was admitting that I have a migraine and I need help. But I was more with a fault was that I need to go back to work. So fix me fix me now. And you know, and I wasn’t patient, it was not about fixing me it was about fixing my migraine. It was like two different things. I was not connected to my disease at all. I didn’t want to be connected to it, because it was taking away my life. And I just wanted to get rid of it. So that’s why it took me a long time to actually meet someone, a therapist that while I’m with her now that she started asking me different questions. And she started making me want to go a bit more deeper and tackle a bit more, you know, issues inside that actually answers some questions for me. It’s not even about why I have a migraine because you know, it’s genetic. Many members in my family, they do suffer from migraines, but it’s more about my relationship with migraine.

Joe Coe  08:13

That’s super helpful. And is that what drew you to study psychotherapy?

Marta Mrozek  08:18

Yes, for sure. That’s one part. But really, for the longest time, as I said, like with work I, you know, marketing, public relations, communication, it was something that I was very passionate about. So during all these years, when I was on disability, in my mind, I was going back to my job, you know, like I was going back to communication, I was going back to marketing to event planning. So when I started to feel a bit better, when I found the right combination of medications that actually started to help me get back on my feet, I tried marketing again, but I didn’t feel it. I just didn’t feel it anymore. In the back of my mind, I started thinking that maybe you know, I already started, you know, doing a bit more in a sense, like helping people, not professionally, obviously, but like through my specialists, you know, other patients if they had questions about migraine, and I sounded very healing for me as well, but also very rewarding. And at the same time, I saw the need that there are still so many of us who just are so lost in the whole system, that it’s not very set up to help us to the degree that it should. So I started thinking about counseling, maybe you know, thinking, oh, maybe if I could work in a headache clinic as a patient, something along the line. So psychotherapy just landed on my lap by pure accident as it usually does in life, you know, those type of things through friend who really made me think about it more seriously and she pushed me to apply and here I am in my second year but it’s a five year program, so I still have a long way to go.

Joe Coe  09:51

One step at a time. And your story is similar to a lot of folks that I speak with that have chronic disease and go through a process of mourning and rediscovery. And I think that that’s something we all need to understand that with these life changing diseases or diseases that impact us on a daily basis, we might need to reimagine, and reconstruct what a quote on quote normal life is for us. And that’s the beauty of being alive is that we have those choices and ability, once we realize that we have those choices, and you went through a long process, this was not something you did overnight. And folks need to hear that when they see success stories, that this is about a lot of trial and error. This is about a lot of soul searching says about going on a lot of different medications, working on a lot of different doctors and figuring it out. But you know, a different life and world is potentially possible. And we don’t have to be confined by some of the societal burdens that were given around what productivity is, what success looks like, what a fulfilling life looks like. And we can find meaning and all different ways. So really appreciate that story and process that you went through and sharing with the folks that listen, the last question, I want to ask you, I know that you’re involved with Migraine Canada, how did you get involved with an advocacy organization? And why is that important to you?

Marta Mrozek  11:15

You know, what I mentioned, when I started having those ideas about counseling, actually, my neurologist, he mentioned the organization, and he gave me this idea that maybe it’s something that I should consider when I was still kind of pushing back thinking that there is no way that you know, at that point in my life that I can be used for anything, you know, that my brain is good enough, again, good enough is like really something that it’s you know, it follows me that I like the idea, obviously, and I liked what it stands for. And because whenever I would look for the information, as a Canadian, there’s a lot of information coming from the states, but we don’t have a lot of that here in Canada. So I saw that it’s missing. So I saw the need for it. And I wanted to be part of it. I just didn’t know exactly how and what I can, you know, help with? I was still thinking maybe communication background, maybe marketing, I still don’t know, you know, I’m still like helping, but not really knowing what my real faction is. But I guess as a patient advocate, it’s more about being there and telling my story and from my point of view, yeah.

Joe Coe  12:25

it is. They’re a great organization. And Marta, you get to define your function.

Marta Mrozek  12:30

Yeah, I know. I know.

Joe Coe  12:31

So really amazing. So appreciate your time. Is there anything that I didn’t ask that you wish I would have? Or that you want to share with the audience?

Marta Mrozek  12:40

No, no, I thank you for making so comfortable. First of all, because it is the topic that I learned to talk about it. But to go deeper, you know, about more personal part of this experience. It’s tough, but it’s something that I know, I recognize that it’s very important to share with others because I know myself when you hear, when you read, when you find similar stories, there’s this like, aha moment, it’s like, wow, we know if she they can do it, or they were in the same situation. They’re like me, and then when you see yourself and others is just like it’s so empowering, you know.

Joe Coe  13:16

And that’s why we do this and I really am grateful that you found it to be a good experience and that you were comforted. And I know people listening will find comfort in your words and in the story that you share because we aren’t alone. There are so many of us are putting a smile on our face and it’s okay if we have to do that. It’s also okay, we choose not to. Really thank you for everything and for spending these moments with us.

Marta Mrozek  13:42

Thank you, Joe.

Joe Coe  13:44

Thank you for listening to this episode of Talking Head Pain. The podcast that confronts head pain head on. This podcast was made possible with support from AbbVie Canada. If you have any questions, thoughts or suggestions for us, you can send us an email at [email protected]. If you enjoyed this episode, please give it an honest five star rating. Write a positive review and spread the word by sharing it with your friends and family. It’ll help more people like you find us. I’m Joe Coe and I will see you next time.

Narrator  14:15

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

Narrator  00:00

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

Rabia Kiani  00:06

“I think I carried the embarrassment for a really long time because I didn’t want to be seen as someone who was sick. I wanted to compete with everybody else. I didn’t want to have an excuse for not being able to keep up with everyone else. And so I tried to hide it from everyone.”

Joe Coe  00:29

Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host, Joe Coe, Director of Therapeutic Area Growth and Integration of the Global Healthy Living Foundation, as well as Co-President of GHLF Canada. I’ve been a migraine patient for over 20 years, so I know firsthand how debilitating this disease can be. Today I’m here with Rabia Kiani, who is a person whose lived migraine for her entire life. Today we’re going to learn about how her personal and professional life has been impacted by migraine and the unique ebbs and flows that she’s experienced living with migraine disease. How’re you doing today, Rabia?

Rabia Kiani  01:10

I’m great. Thanks for having me, Joe. It’s nice to be here.

Joe Coe  01:14

My pleasure. So I want to jump right into a question that I asked a lot of folks, before we begin, can you explain to our audience in a couple of sentences, what your worst migraine attack felt like? What went through your head? What were you thinking?

Rabia Kiani  01:29

Oh, the worst migraine attack I had was probably one of my earlier migraines when I was much younger, where I probably didn’t know what was happening. And I thought I was gonna die. It was this feeling that my head was gonna explode. I do remember distinctly my brother being called into the room. And I just remember using my arms to hold my head really tightly together. And my brother who’s just only a couple years older than me having to come in to keep me calm. But I remember thinking my brain was going to swell up so big and just explode. I was just that much pressure and pain.

Joe Coe  02:05

Yeah, that’s the really scary thing, especially as a child, how old were you when you started to get migraines and then diagnosed?

Rabia Kiani  02:12

I was 10 or 11 when I first started having headaches, and we went to my family doctor who wasn’t terribly surprised that I was I was having headaches. I’m one of five kids and my mom had migraines. So I don’t think he was surprised that one of us was genetically going to be inclined to have migraines or headaches. It was something that was tracked, you know, is this a headache is it a one off thing? And so for a few months, it was kind of followed. And he did try to determine whether or not it was too young, kinda to be hormonal. And so it was just like, what is bringing these on?

Joe Coe  02:46

And how did it feel as a young person in school living with head pain and the related symptoms of migraine?

Rabia Kiani  02:53

To be honest, I was really embarrassed. I think I carried the embarrassment for a really long time, because I didn’t want to be seen as someone who was sick, because from the outside, I was pretty fine. But I didn’t want to be seen as somebody who was less than. I wanted to compete with everybody else. I didn’t want to have an excuse for not being able to keep up with everyone else. And so I tried to hide it from everyone. Actually, I remember that that was kind of my initial feeling.

Joe Coe  03:25

And when did you start to change that feeling in your life?

Rabia Kiani  03:29

Honestly, I don’t know if its ever gone away. You know, like, there’ll still be moments actually when we have like a family event, you know, coming up, and I won’t say that I have a migraine. I’ll just self medicate and I get embarrassed having to be that person. That’s not feeling well, that has the migraine even though I think it’s because it’s so you know, it happens still so frequently. I don’t like the reaction that I get from someone that’s like you have a migraine again? Even though I don’t think it comes from a bad place. I still have a stigma even though I know people loved me, but I have let go of a lot of friends who I haven’t been able to see because I’ve cancelled because I have a migraine. I used to make a lot of sacrifices, where I would show up to dinners and nights out even though I wasn’t feeling well medicated. And I just wasn’t valued for the sacrifice that I made. And I’ve let go of those people wholeheartedly and I do not regret that at all.

Joe Coe  04:28

I think it’s so important. And thank you for being honest about this process for people to hear that a successful woman and we’ll learn a little bit more about your career and how you’re looking to sit for the New York Bar, a successful woman who’s traveled the world who has had all these opportunities and is strong and empowered. And still because of stigma and the way society treats people with invisible diseases feels that you haven’t quite fully reconciled the fact that you can’t be totally honest without feeling something negative inside of you. And I think it’s important to be gentle with ourselves and for our audience to remember that it’s okay to not feel like you’re doing everything right or that you’re perfect because it’s a process living with a chronic disease. So I really appreciate that openness, wanted to jump in a little bit into how your migraine attacks changed and progressed based on access. In talking about you before we did the interview, you talked about in different points in your life where you had different levels of access to treatments and how the access to treatments there is a direct relationship to better outcomes for you and quality of life. Can you talk a little bit about that?

Rabia Kiani  05:42

Yeah, absolutely. So I’ll just quickly summarize. So when I was younger, what was available, I guess, back in the 80’s, and maybe it was because of my age, what was available was kind of a cocktail of medication, and it was over-the-counter medication. And that was while I was here in Toronto. When I was a little bit older, what was more available were preventatives, and that was while I was living in Australia, and there was more of a, I think, an understanding and that was in the early 2000’s. And by then I was kind of in my early to mid 20’s. And I felt that was a really great understanding of migraine, then, because I didn’t have to jump through so many hoops. I didn’t have to see a neurologist, and it was at an on-campus doctor at my law school. And, you know, we went through a few tests, and he had my history, and I was able to have a preventative medication. And it was it dramatically changed my health. And the way that I approached life. I also I was living in a part of Australia where the weather was quite consistent. And I was really sensitive to weather. And so the barometric pressure was quite consistent. I had very few migraines, but when the weather did shift, the preventative really did kick in. And I was also sensitive to hormonal migraines. And so I kind of had a really great quality of life for the most part, as I shifted into my late 20’s, my early 30’s, I had a really high stress career, but by then I was kind of back in Toronto, and my access to health care shifted again in a different way, I didn’t have access to medication and different areas of maybe medication that I would have liked to have. And so I kind of had to rely on a mishmash of medication. And I kind of had to do a little bit more on my own. Like I really had to get a bit more physical, do a little bit more yoga, things like this, to try and help myself actually, I really had to wait for doctor’s appointments quite a bit, actually. It was like a three month to six month waiting list to get access to specialists. And my career was really busy. I was really high stress. I then moved to Abu Dhabi. And again, really consistent weather there barometric pressure wasn’t so much of an issue and I had access to private health care. And all of a sudden my migraines and my access to medicine improved dramatically in a different sense as well. And I was back on preventatives that were available under their drug regulations. And my health improved dramatically. And I also started to partner it with a lot of alternative therapies because they were available in a really progressive way there. And so I was able to do things that I didn’t think were necessarily possible. I had my first son there, when we decided to consider expanding our family, I did do a round of IVF things that migraineurs I think don’t necessarily consider doing because it may trigger a lot more risk to their migraine health. And so I did have a really great health experience there because my access to a different level of drugs and alternative therapies is just available.

Joe Coe  08:39

How does it feel knowing that you have had these treatments that have worked for you, and you’ve been really successful on them, and knowing that you can’t access them in Canada?

Rabia Kiani  08:53

It’s hard. So now that I have come back, the medication that I was on, isn’t available here, it is available in the U.S. And so to get these things approved is you know, it’s a different ballgame. And again, I’m not familiar with how to get access to this kind of medication. And it is really difficult. My migraine health has declined considerably in the last few years since I moved back. And it is really hard. And it causes a lot of stress because you there’s things that you plan for you have certain milestones you need to achieve. And you mentioned like the New York bar, I was meant to sit it earlier. And after several months of you know, an influx of horrible weather that we experienced over the winter, I had to delay an exam because I literally had weeks of nonstop migraines where I was medicating and so it is really frustrating and I feel for people who get on new medication and it takes months until you actually find the right dose or I read about it all the time and are various advocacy groups where people just can’t find the right thing for them after they’ve spent years. You know how long it takes to find a medication that works for you that doesn’t have these detrimental side effects only for you to like, maybe relocate or have to, you know, you just can’t then switch it up. And it’s really frustrating. You’ve just lost years of your life trying to find something. So it’s kind of depressing to be honest with you. And on top of your physical decline. Yeah, you have days where you’re like, you’re furious,

Joe Coe  10:18

Especially when you know that this works for me.

Rabia Kiani  10:21

Yeah, I absolutely have days where I’m just, I am furious. And then there’s days where I’m just like, okay, I’ve had this for, you know, over 30 years, and I’m probably gonna have this unless like, I don’t know, like, the hormonal part is gonna kick in, and it’ll be gone in 10 years, like, there’s hope. And some as I think of my mum, who passed away last year, and I think, gosh, she had this for like, 60 years, and she was okay, I can do this for another 30 years, it’s fine. Like, you just kind of, you almost have to just keep telling yourself, like, people have it worse, like, I’ll be okay, I can hide this a little bit longer, it’s fine. It could be worse.

Joe Coe  10:57

I’m very sorry about your loss. You can live with migraine for another 30 years, but you shouldn’t have to.

Rabia Kiani  11:03

That’s really kind of you. I appreciate you saying that. It’s nice to be able to talk to someone who understands, I feel like I’d love to say that there’s some hope. First, I am a hopeful person, I’m a generally optimistic person. And I want to be optimistic, because when I see young people that are coming up and you hear their stories, you want to be able to tell them, oh, we’re gonna figure this out. You’re not going to be my age dealing with this. There’s no way because we’ll have figured it out by then.

Joe Coe  11:30

Another aspect of your story that I wanted to highlight, you talked about how you use a lot of over-the-counter medications, both as directed by a physician, but also you use the term self-medicating, and you develop what some call medication overuse headache, or a rebound headache or medication adaption headache. How did that impact your migraine journey?

Rabia Kiani  11:54

I think that’s probably one of my biggest regrets. And that goes to the fact that I was really embarrassed about having migraines. So I did, I did use a lot of medication to hide having migraines, and it was widely available, like it was over-the-counter for the most part, and it was terrible. And I distinctly remember having to go through periods of time that were really high stress. So I would medicate, medicate, medicate for like days, 10 days, 12 days at a time when I would have a migraine, and then the rebound would kick in. And I would continue to medicate, medicate, and then I would just crash. And there would be like a two three day period where I was just in my apartment, just sick, just sick, almost like like I would have my brother would show up and he’d be like, what, like you’re recovering from a really, we’re really, really bad migraine. And I’m like, oh, yeah, it’s really, really bad migraine, and it would be just horrible. And I think to myself, and it wasn’t because I was it was because I just was trying to keep up at work. It was really just that it wasn’t like I was like living my best life. It was because I was trying to maintain deadlines at work or something like that, you know.

Joe Coe  13:03

And for those who want to learn more about that topic we had on Talking Head Pain, a neurologist, Dr. Alan Rapoport, talk about medication overuse headache and his research and it’s a really tough thing because on one end, you’re living in pain, you have the migraine, you’re using the medication that’s available. On the other hand, if you have newer treatments, that might reduce the opportunity for a rebound, that will be better. But you also have access issues as many people do to get these newer treatments. So It’s a real catch 22 for migraine patients and you’re now you’re stuck between a rock and a hard place do I use the over-the-counter medication if I can get access to the medication that might not cause the same amount of rebound or medication adaptation to my migraine. So really challenging topic and then getting patients off of the over-the-counter drugs or even the prescribed acute drugs that are being used that are a little bit older and might have different mechanisms of action, but I am not the expert. I am not a doctor. Listen to the episode with Dr. Alan Rapoport. It was amazing. Rabia, before we end, is there anything that I didn’t ask that you would like to share?

Rabia Kiani  14:11

No. I mean, God just I hope that this helps somebody out there that is suffering from migraine, that they’re definitely not alone. I think we all anybody who’s out there that comes into migraine, whether it’s when they were young, whether unfortunately they’re coming into it later, we’re all in our journey somehow I think made mistakes or are figuring it out. I mean, I still make mistakes. Were thinking to myself, I could have taken something earlier and prevented the migraine instead of like trying to tough it out or we all I think make mistakes during our journey, but I think it’s just being kind to ourselves. I think that’s the key.

Joe Coe  14:48

I so agree.

Rabia Kiani  14:49

Yeah.

Joe Coe  14:50

I struggle with the taking the medication at the right time, too. It’s like why don’t my waiting but you wait because you’re like, do I really need it I get a certain amount of a month for these and is this enough you know? Should I, am I going to need more next month and it’s a game that we shouldn’t have to play. But yeah, really listening to your health care provider sharing decisions with them being open really helps and I so appreciate you coming on sharing your experience and your strength and being vulnerable with us today. It’s important for people to hear and feel that because we’re not alone. So thank you so much.

Rabia Kiani  15:26

Yeah, thank you. Thank you for engaging the wider community. It’s really kind of you.

Joe Coe  15:30

Thank you for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. This podcast was made possible with support from AbbVie Canada. If you have any questions, thoughts or suggestions for us, you can send us an email at [email protected] If you enjoyed this episode, please give it an honest five star rating. Write a positive review and spread the word by sharing it with your friends and family. It’ll help more people like you find us. I’m Joe Coe and I will see you next time.

Narrator  16:02

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

Narrator  00:00

Be inspired, supported and empowered. This is the Global Healthy Living Foundation podcast network.

Genevieve Pharand  00:06

I’d been diagnosed with migraine in 2012. But I didn’t really understand what it meant I thought migraine was just another word for headache. So as I started getting those attacks, I just thought that the headaches were getting worse. And it wasn’t clear to me at that time, what was going on and what I was heading for that but gradually migraine also affected my work and my family too.

Joe Coe  00:40

Welcome to Talking Head Pain, the podcast that confronts head pain head on. I’m your host, Joe Coe, Director of Therapeutic Area Growth and Integration with the Global Healthy Living Foundation, as well as Co-President of GHLF Canada. I’ve been a migraine patient for over 20 years, so I know firsthand how debilitating this disease can be. Today I’m here with Genevieve Pharand who is a lawyer and a member of the Board of Directors of Migraine Quebec. She had her first migraine attack around the age of 10. I’m really excited to speak with you today, Genevieve. So how are you doing?

Genevieve Pharand  01:16

I’m fine. Thank you.

Joe Coe  01:18

So I like to begin this podcast by asking all of our guests, what their worst migraine attack was like?

Genevieve Pharand  01:24

Even though my first migraine attack, I was about 10, like you said, I would say that my worst migraine attack was in 2016, about seven years ago in between the age of 10 and 43, which I was at the time, it was mainly headaches and dizziness. But in September of 2016, I got my real first migraine attack, we were invited by a company on the weekend, my ex-husband and I, all paid all activities and I ended up staying in the room of the hotel in the dark for the whole weekend with this big headache, nausea. And this was my real first big migraine attack that I got. And that started the cycle of becoming from episodic and going to chronic migraine in about two years.

Joe Coe  02:15

Let’s talk a little bit about that transition, that negative transition from being episodic to chronic. How did that feel? I know physically, you feel different, having more attacks more symptoms. How did that feel emotionally? And how did you process that?

Genevieve Pharand  02:31

Well, first, I have to say that I’d been diagnosed with migraine in 2012. But I didn’t really understand what it meant I thought migraine was just another word for headache. So as I started getting those attacks, I just thought that the headaches were getting worse. And it wasn’t clear to me at that time, what was going on and what I was heading for. But the impact is that eventually I started losing friends because I was getting those attacks first every three months, then every two months, every month, every three weeks every two weeks. And it was getting worse. And so I kept canceling movies, restaurant with my friend. And I couldn’t explain what was going on because I couldn’t explain it to myself. And then it was very hard to see them go because they didn’t understand. And over the months that went by, I just concentrated my energy on the work and my family. But gradually migraine also went back to my work and my family too.

Joe Coe  03:37

Before we recorded this, you were talking a little bit about the stages of grief that you went through. Can you explain what that means to folks around migraine? That might seem like a strange concept. We normally think of grief as when someone passes away and the stages of grief in relation to that. How did you process migraine using a similar thought process?

Genevieve Pharand  03:57

Well, just like I said, first I lost friends. After that in 2018, I went on sick leave. So I lost all contact with my colleagues identifying myself to my work. So I was like somewhere in between. I didn’t know I lost the sense of contribution. So all those losses that came one after another it was very hard to live. I was angry about myself for having this illness. And then I felt sad for losing friends, colleagues but also losing opportunities that I said that was in my work, people were getting promotions and I was on sick leave. And so I think it’s similar to when someone dies, I was losing so many things that I had to all go through those stages to finally realize that migraine was taking me somewhere else and to accept that it’s now part of me that I have to live with it.

Joe Coe  05:02

And how is it living with migraine in Canada?

Genevieve Pharand  05:05

Well, I think we’re all lucky here in Quebec. A lot of the medication is covered by insurance or RAMQ, we still have an issue of a neurologist they’re not enough for the population. But I’m lucky I have a good doctor that tried to help me. And when she couldn’t, she referred me to a neurologist specialized in migraines. So I’ve been followed by the two of them since 2020. New medications have arrived here in Canada, and I’m trying one of them right now. So I’m really grateful for everything that’s been coming our way in the last few years it’s getting giving hope to every person living with the headaches and migraines.

Joe Coe  05:47

And you took this very hard and deep and painful experience of living with migraine for so many years, and somewhat turned it into a positive by getting involved in advocacy. Can you talk a little bit about the advocacy work that you do and why that’s so important to you?

Genevieve Pharand  06:05

In 2020, I got the first medication that started helping me. I went from 15 migraine days a month to about eight or nine, so I was feeling a little bit better. And really, the feeling of not contributing to society or to something was very heavy on my shoulder. And I was a member of Migraine Quebec since 2018. And I received an email saying that we’re looking for volunteers. So I gave my name and started helping the director, she needed some help to revise some policies that needed another lawyer to intervene. So I was the contact between the lawyer and the director. And that’s how I started volunteering. So it was not really my field, but it was something I was used to doing. And from there, they asked me to be on the advocacy committee. So again, defending the rights of people is something I have inside of me. So I really enjoyed and I was really glad they asked me and I’ve been on this committee since 2020. And after that, they asked me if I would sit on the Board of Directors, as an administrator, and I was name on the board in February 2021. So it really helped me out, first, the sensation that I have are not contributing now I have something a cause. And it also helped me I say, I would say getting better because I started using my brain again, I felt I was doing something, there’s no pressure in doing anything because it’s a very a caring environment. If we have a meeting and someone who has a migraine, well, we just canceled the meeting. And that’s it, there’s no pressure. So it’s really a caring environment. So really, it helped in the emotional way. And it also helped me getting better by started using my brain working a bit at my own pace whenever I was all right, but really made me in action.

Joe Coe  08:04

That’s so important. And it’s really valuable for our audience to hear that we can find purpose in many different ways. And you’re talking about how you found a slightly different purpose that you may have not envisioned for yourself, you also discussed pacing. And if you live with a chronic disease, our pace might not be at the same pace as someone who doesn’t. And we live in a culture that we’re all looking at Instagram and social media and all these different influencers that are showing their pace might not be our pace. So we need to figure out what that is for ourselves. And it’s beautiful that you’ve been able to find that purpose and that pace in your life. It’s a really important.

Genevieve Pharand  08:49

Yeah, before I got chronic migraine, I was going 100 miles an hour, always working. And my brain stopped me from doing that. So I have to find my new pace. Now, what’s best for my mind, my body, and my work.

Joe Coe  09:04

Great point, we have to continually check in with ourselves and see if we’re doing enough if we’re doing too much, and really keep adjusting and re-evaluating it’s a really good life lesson. I’m certainly learning and I’m trying to practice it more.

Genevieve Pharand  09:19

It’s not easy.

Joe Coe  09:20

It’s not. One of my last questions for you. We talked a little bit about you being so young when you got your first attack. If you could go back and tell your younger self one or two things in relation to migraine and chronic disease, what would they be?

Genevieve Pharand  09:38

I would tell myself that, first it’s an illness. It’s not something that you can control because all the time I was in my 20’s and 30’s I was trying to control the headaches to work and take care of my family and that I wasn’t taking care of myself. I didn’t listen to myself. So I would tend to realize that I have this and I have to take care of myself to make sure that it won’t get to chronic migraine. Because really, I wouldn’t go back to that stage. It was really painful. And so I would say to myself to really listen to my body and my head.

Joe Coe  10:17

Very important, was there anything that I didn’t ask that you wanted to cover or discuss on Talking Head Pain?

Genevieve Pharand  10:25

I just want to tell people to keep hope. Because I say it migraine in my life was like a bomb exploding my social, my personal life, my professional life. And now I’m rebuilding all those aspects in my life. And we have to keep hope I never thought a few years ago that I would be here talking to you or I would get at this point to feeling better. And so we have to keep hope that things are gonna get better.

Joe Coe  10:55

Well, thank you so much for being part of that hope.

Genevieve Pharand  10:58

Thank you.

Joe Coe  10:59

And we know that your story will help and inspire others that listen, and I really appreciate the time and energy that you took to join me today. So thank you so much.

Genevieve Pharand  11:09

Thank you Joe. I appreciate it.

Joe Coe  11:12

Thank you for listening to this episode of Talking Head Pain. The podcast that confronts head pain head on. This podcast was made possible with support from AbbVie Canada. If you have any questions, thoughts, or suggestions for us, you can send us an email at [email protected] If you enjoyed this episode, please give it an honest five star rating. Write a positive review and spread the word by sharing it with your friends and family. It’ll help more people like you find us. I’m Joe Coe and I will see you next time.

Narrator  11:43

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

Narrator  00:00

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

Judith  00:10

For a strong community of people who I’ve met through the chronic migraine community have been some of the most empathetic people I’ve ever encountered. I think that people have been really giving and good at listening to other people and just really yeah, just really empathetic.

Sarah Shaw  00:24

Welcome to talking head pain, the podcast that confronts head pain head on. I’m your host Sarah Shaw, Senior Manager of BIPOC Community Outreach at the Global Healthy Living Foundation. I have been living with chronic migraine for almost 10 years and I’m very open about navigating life with my chronic disease journey as well as my experience living with anxiety. This podcast will be a window into other patients lives as they navigate their own journeys living with chronic pain, migraine and mental health. Today we are joined by Judith Klausner, an artist with migraine from Massachusetts with a love for small, intricate and overlooked things. Judith, I like to start off the show by asking everyone on if you had one word or adjective to describe your migraine attacks, what would it be?

Judith  01:10

Oh, wow, that’s a big question. I mean, the first thing that popped into my head was inconvenient, which is such an understatement. They are very inconvenient.

Sarah Shaw  01:20

They absolutely are so inconvenient. You know, you’ll be trying to like start your day and it’ll be there being like, Hey, it’s me again, interrupting your day inconvenient is a really good word.

Judith  01:30

I just feel like there was a way of amping inconvenient up like a couple orders of magnitude, because inconvenient is like, Oh, the button fell off of my favorite cardigan that I was gonna wear today. And the migraine is like, Oh, I tried to make plans for my life. And now it turns out, I can’t actually keep to any of them. So let’s completely reframe What a life looks like.

Sarah Shaw  01:48

Yeah, It’s inconvenient, but like on level 10, we’ll call it that It’s amped up, like you said, what has been your worst migraine attack? Can you tell us what that experience was like?

Judith  02:00

I don’t think that I have one particular attack. But I can point to it saying this was the worst because there’s also so many parts of migraine disease that are difficult and painful or uncomfortable, or we’re saying derailing. So it’s hard to say whether worst would be was the highest pain level, which don’t get me started on those pain charts. I don’t know a single person with chronic pain who doesn’t hate the pain chart because they just feel so inadequate. But I don’t know if I’d say that my worst migraine attack was the one that was the worst pain, or the one where the combination of pain and nausea was the most intense, or the one that happened at the time that I most wanted to be able to live in a sort of semi normal way. I have been married twice, but I have had three weddings because one of them was a COVID Micro socially distanced outdoor micro wedding. But out of three weddings. I had migraines at two of them. And so they may not have been the worst pain I’ve been in. But those were certainly times in my life where it was particularly awful to not be able to be there and experience What was happening in the way that I really wanted to.

Sarah Shaw  02:58

Yeah, I’m really glad that you brought that up. I feel like that’s something that we don’t really talk about is we’re talking about migraine inconveniencing us and derailing us but nobody really talks about like when migraine impacts like really big things like a wedding, for example. Like I think that I’m someone you know, I actually got engaged last year and like every once… thank you… and I hate to say one of my first thoughts was: Oh god, am I gonna have a migraine attack during my wedding? And so like these are real conversations and things that like happened to people and It’s not like something that I feel like we talked about about how that’s something that able bodied people don’t have to worry about right? Yeah, migraine is always there for us. It’s there for us during our hard times in our happy times. It’s just that little buddy that keeps on giving right. Oh yeah.

Judith  03:48

It’s like Clippy, the Microsoft paper clip has…

Sarah Shaw  03:51

Exactly he’s… my migraine is just like Clippy that’s such a good thing. He’s always like, Hey, It’s me.

Judith  03:57

I saw you were doing anything. Would you like me to be here? No, no, I wouldn’t. Are you sure? Cause I really think I should be.

Sarah Shaw  04:05

I see you’re trying to write a letter. Do you want me to interrupt your day? That is exactly I love that analogy that is so great. And I feel like the people the younger kids today don’t know Clippy but like I grew up with Clippy. So I I know Clippy so Well. I listen I’ve been such a fan of your work for a long time now and comes back to the you know, I know you’re an artist and but like mine stems back from the days when I first got on Twitter. And I was kind of in this isolated trying to find a community of people that were living with migraine because there was nobody my age going through what I was going through. And so I took to Twitter to just find a community and there was Mia and you and there was a couple and Angie and there were a couple other people and I found you through your book that you wrote Noah the   Narwhal: A Tale of Ups and Downs, which is a book that focuses on a Narwhal that lives with migraine attacks and I remember getting so excited the See a book that a children’s book that featured a condition that I live with? I would really love it if you could share with us What inspired you to like write the book? And also why a Narwhal?

Judith  05:12

Absolutely. So yeah, It’s interesting, because I think I’m trying to remember but I think that I ended up on Twitter, because at the time, people said, Oh, if you’re going to go into children’s literature, that’s where you have to be to network and to know people. And it ended up that while I did meet some really neat people in a children’s book world, mostly, What I found was a community of migraine people like I had never had before, I also had felt really isolated. And I didn’t even really know to look for the community. And I can’t remember how it happened. But somehow I feel like it came through me somehow. But but then suddenly, there was this other there was this world of people like me who understood this experience. And that felt so freeing, somehow, I don’t know, it wasn’t just me in a corner being like, well, I guess I’m failing at life, it was other people talking about experiencing similar things and how they dealt with it, and how you could have a life that was still meaningful. In terms of the picture book, I’ve always loved picture books. Children’s literature is something I’ve been passionate about. I mean, since I was a child, but I never really grew out of picture books. And I feel like they are an incredible medium for education and change. And the picture books that my parents chose, because my parents chose very carefully what they were giving me in ways that I really appreciate and that they help for my ideas about identity and social justice, and all sorts of things that you think like well picture books, but I was raised on swimming and unions. And I felt like that It’s It’s an incredible art form, to be able to have an impact throughout somebody’s life. And because I had felt so alone with migraines, and I didn’t see I mean, in general, I didn’t see invisible disability represented in children’s literature. And I think that that starts the process of people feeling isolated, because whenever these symptoms start to come on, and for some of its as kids, you don’t see that reflected, you don’t hear your own story places. And we know how important it is for all different kinds of identities for people to be seeing themselves reflected in the media around them. So I wanted to make something that both could help reflect a child’s experience, or could help explain in a child friendly way, a parent who was going through This, or an aunt or uncle or a family friend, because It’s hard with kids and I have spent a lot of my life working with kids, it can be hard to explain. This is why I can’t engage with you like This right now. And It’s not because you did anything wrong. And It’s not because I don’t love you, you know. And so I wanted a way also that adults could communicate with the children in their lives to say, This is how I feel. And sometimes there are going to be days that I can’t play with you the same way.

Sarah Shaw  07:28

Absolutely. I feel like if I had had a book like that growing up now I didn’t start getting migraine attacks until like my early 20s. But even like having to explain like you were saying to younger family members, I was just still like migraine attacks, the kids they didn’t understand they were like, huh, like What play with me play with me and play, like, come on. And I’m like I can’t and I think having that language at a really early age. And also I think you brought up a good point about It’s nothing that they did wrong either, you know, and giving that language to kids at such a young age. So that way they can also be aware of maybe if they could be experiencing migraine attacks that they would have the language to communicate to their parents about what they’re experiencing. And I just love that you chose a narwhal. I think narwhals are so cool. Like I think that there’s not a lot of love given an narwhals but like I’m a huge I’m like they’re the unicorns of the sea. Come on.

Judith  08:19

It’s interesting, because I feel like right around when I was writing this narwhal is kind of got their moment in the sun and they started having narwhals on everything. And you ask the reason I chose one, It’s because I think about my pain very visually, which makes sense as a visual artist. I’ve often described it as like a pickaxe in the side of my head and me and narwhal had This very visual projection of a spike coming out of his head. And that felt really applicable to me in a way that I could easily visually say, you know, there’s a line in the book about he felt like his horn was growing into his head instead of out of it. Because to me, that was an easy way of explaining one of the types of pain feelings that can come with it.

Sarah Shaw  08:55

I never thought about it like that, that’s a really good visual, I would often describe my attacks as ice pick, like a um, I feel like it was I was being stabbed into my eye and the horn represents that that’s I didn’t think about that. And nice connection

Judith  09:09

I did actually end up doing a small series earlier in the pandemic of trying to visualize the pain in my specific migraine attacks and like doing little sketches of trying to visualize what the shape of the paint was and what the texture was and what the color was to me. And that was helpful way of processing some of it and I made these, these little sculptures of they were pain portraits of What the pain looked like for these particular migraines.

Sarah Shaw  09:32

That was actually gonna be my next question. I was gonna say, Does your art get influenced by a chronic illness like migraine, but you answered it, you answered it before I could get to it.

Judith  09:41

I mean, it impacts it in so many ways beyond that. I think that’s one of the most direct was literally trying to sculpt the migraine episode, but I did a series a number of years back called “Coming out of the Medicine Cabinet” that was basically doing Swarovski crystal micro mosaic on all of my medical ephemera. So I take a lot of medications And we’re all we’re sort of taught in our culture that we should be embarrassed about medication. And that medication is a crutch, which even that is a phrase that bothers me a lot. Because if someone broke their leg, would you take their crutch away from No, that would be cruel, like why. And also, because I like most people, I have many comorbid conditions. And some of mine are psychiatric. And there was a particular stigma around psychiatric medications. And so I took all of This, my migraine meds, my anxiety medications, all of it and turned them into these like bright and glittering pieces that were intended to be shown instead of hidden away. So that was another one that was a pretty direct just taking that and putting it out there. Having chronic migraine disease is such an intrinsic part of who I am, and how I interact with the world, just all the time that anything I make, I think, is impacted by migraine. But also, the work I’ve been doing for the last few years is all pieces that are of elements in nature. So animals, plants, fungi, that people tend to think of as gross or something has been ruined by them. So mold or insects, which I love insects, people don’t like them, things like that, but sculpted really painstakingly to try to give people an opportunity and invite them to look for longer and try to see the beauty that’s there and the life that’s there and things about it that aren’t just Oh, that’s gross. Oh, that’s ruined. And to me, that’s a lot. I mean, that’s very related to migraine and my experience of it, which was having a life that for a long time, I was just very depressed. And I thought, Well, It’s ruined, I had all these ideas of the things I was going to be and do and make. And I can’t do them because I can’t live like an able bodied person. And it took a long time and a lot of processing and a lot of therapy and finding my community with you guys on Twitter, and just a lot of working through things to get to a point where I realized that it was a different life than the one I envisioned for myself. But it wasn’t ruined, there’s joy in it. And there’s beauty in it. And I need to help myself learn to see and feel those pieces of it instead of just focusing on the parts that didn’t work the way I want them to.

Sarah Shaw  11:58

Absolutely, I really do.

Sarah Shaw  11:59

You said so many like important, impactful things. I wanted to address the medicine cabinet art that you were doing. A lot of people that live with migraine have a lot of comorbid conditions, myself included, I live with migraine and anxiety. And for so long, there’s such as you said, there’s a huge stigma associated with mental health and anxiety and depression and stuff like that. And I just love that you’re giving that a spotlight for something that for so long, there’s just been This huge stigma just like migraine migraine is an invisible illness, it cannot be seen anxiety and depression is invisible. And it cannot be seen. And we’re often judged so heavily by society by workplaces. And we’re seen as quote unquote, less than, but I liked the way that you’re turning it out. And you’re saying like we’re just as impactful and creative and artistic as able bodied people, we just interact with the world in a different way. And I love the art series that you’re doing, where you’re giving a light to pieces that a lot of people tend to look over. And I feel like that’s representative of the chronic illness community of where we’re seeing less than, but really, we’re a beautiful, strong, empowering community. And I think for some of the strongest like people out there personally, I feel like I don’t know, I just I just I love What you’re doing with the art and shining a light on things that are typically not seen as amazing or beautiful or resourceful or like and it just I’m connecting to them. Like that’s me, that’s us, that’s the community.

Judith  13:33

That means a lot. And it really does that, that, you know, that is always my hope as an artist is that pieces can come like that. And people can feel their own experiences in them or have a window into other people’s experiences. And I think that, you know, like you were saying, we’re a strong community, we’re the people who I’ve met through the chronic migraine community have been some of the most empathetic people I’ve ever encountered. I think that so many people take living with these challenges. And it really impacts them to give other people the benefit of the doubt, to want to share their positive experiences and share anything that’s helped them just I think people have been really giving and, and good at listening to other people and just really Yeah, just really empathetic.

Sarah Shaw  14:14

Yeah, I agree. I absolutely agree. What advice would you give out to artists maybe just starting off on their their artistic journey that maybe they’re like, oh, I don’t know if I can do This because I live with an illness like chronic migraine like What advice would you share with them that you’ve learned along the way?

Judith  14:31

I think part of it is the definition of do this, which seems like sort of a silly answer. But in the society that we live in right now, in the late stage capitalism. If you define yourself as being an artist by being able to make a living wage by doing art, then basically no one is an artist. So I think It’s pretty important to break away from that as a definition, which is really hard and also relates to other things that I’ve struggled with in my chronic illness journey, which is that I can’t work at traditional job, the way that society tells us our value is measured by how Well we do at a career, which is defined it as a thing that pays us. And that’s been really hard. Because for a very long time, I thought, well, I’m just I’m failing as an adult, because I can’t have a job in this way, I can’t support myself financially in these ways. And that’s, that is the definition that we’re given. And I think art has for a very long time had to exist outside of that, anyway, because financially, It’s just not really a feasible, This doesn’t work Well on a podcast, because I’m just waving my hands around. I think it’s very difficult, but trying to separate doing it. And being an artist and letting yourself define yourself that way from any of the financial like nonsense is really important. Because otherwise, there are so many things that will make you feel like you’re not really you’re not a real artist, you’re not, that’s as much as you can try to just block that out. It’s also I think, there’s sometimes an idea in certain, or the idea has been pushed in at times that if you’re a professional creative, you have to have a structure about like, you work on your art X hours a day, or, you know, I know a lot with writers, It’s like, you should always put aside this many hours and write for this many hours a day. And, and that’s not a thing. I mean, a it’s not everybody’s style anyway. But also, if you have a chronic condition, often there gonna be days that you can’t do that. But that’s Okay. One of the things about art that’s wonderful is that it works on your time. And if you let it so when you feel creative, when you want to make things, make them and let yourself make things. And if you are not well enough to do it, let yourself not.

Sarah Shaw  16:36

That’s really beautiful. And I think we need more people to say those things to us to remind us to take a step back. And you know, It’s Okay, that you’re not like, I think there’s a lot of competition. And we’re with social media, too. We’re always like, comparing ourselves to What other people are doing. I’m guilty of it. Listen, I do. But I think It’s so amazing that we can be also been mentors for the next generation coming up to say, like, Hey, I’m doing this and this is okay. And you know what, if there’s a day where I cannot work. That is also Okay, because that is my body is telling me that I can’t I’m physically unable to do that. And that does not make you a failure. And that leads into my next and final question, which is, we talked about how migraine can be really isolating, looking for a community is crucial. What self care tips do you have that you do for you that makes sure that make sure that you’re being your best self? I know we talk a lot about I talk a lot about mental health. And that’s one of the things that I like to share with the listeners about what you’re doing to take care of you.

Judith  17:38

Absolutely. And actually, I think I have something that spans the last question to This question really Well, that I was thinking about before, which is I saw something recently that said, rest is productive. And I thought, wow, I wish someone had said that to me. 20 years ago, I still have so much ingrained shame about the times when I need to rest and I’ll say oh, it was It wasn’t very productive today, I just had to like lay down all day. And they will always stop me and say like, Hey, you needed to rest that was that’s not you not being productive rest was what you needed to do. And I’m very grateful that I have a partner who’s not only supportive, but actively really does help me with my mental health journey to better accept myself and those times that I need to take care of myself as being valid. And It’s really helpful because sometimes as much as it’s great and important to be able to have a lot of internal dialogue about this, sometimes having external reinforcement can make a really big difference. Because as we’ve talked about this condition is already so isolating, that sometimes coming from outside can help it feel less isolated. So yeah, I think one of the biggest things has been working on trying to really feel and not just academically acknowledged, but emotionally acknowledged that rest is productive. It’s important. It’s not what you’re doing that’s less than somehow that’s not a very that sounds didn’t quite make sense.

Sarah Shaw  18:53

But I got it, I understood it. Listen, folks, you heard it here, rest is productive, do not feel guilty about resting when your body needs to because we’ve all been in those spaces of where we push and push and push or push ourselves when we’re in the middle of a migraine attack. And 99.9% of the time, it makes it worse. I’m guilty. I’m guilty of it. So I think I’m loving This era of us reclaiming and taking a step back and letting ourselves rest.

Judith  19:20

I think It’s really important. And I do think that there is a move forward on that. I think in some ways, it seems like the younger generation, I feel real, the younger generation should I think is getting better about it, which is good. I’m really glad to see that. And I do think that that mental health is a huge part of it. I mean, because It’s all inter woven. Again, I’m doing hand things which is not but they’re inter woven hands. Oh, I spent a lot of time feeling feeling ashamed and not examining that. And I think one of the things that’s been really important for me is pulling that out into the light. Shame has a much harder, harder time existing in the light and a lot of that has for me taken the form of voicing it out loud and not only seeing it as Oh, I’m sorry, not voicing the way that give it credence, but voicing it in a way that says, This is What I’m feeling. But I’m going to say out loud that I don’t need to be feeling. And again, This is something where my partner is really helpful, because It’s generally I will say to them, and they know that they’re a sounding board and this basically, but It’s an excuse to say it out loud. If I say, I’m feeling like I didn’t do well or I wasn’t productive today, or I didn’t do What I should have today because I was resting or because I didn’t feel good. And I feel like I I feel like a slug is one of the ways I will often describe it, even though I actually love slugs. And then I will try to unpack out loud saying, but here’s why I should not be hard on myself for that. And even if I don’t feel it in the moment, the fact that I’ve been practicing saying it out loud, has been helpful and really has brought me farther towards having that those be internal processes that when I start to feel the shame, part of my brain kicks in and goes, Wait, hold on. Nope.

Sarah Shaw  20:56

I love that. I love I feel like that goes hand in hand with like unlearning and saying things one of the one of the things that my therapist like says to me, for example, when I’m like having an anxiety attack is to say out loud, I am safe. I am Okay. This is something that is the gist of the action of saying it out loud. Maybe you don’t believe it right in the second. But your brain I think starts to rewire and you know, feel more calm and feel more accepted or feel less guilty. So I’m all for saying affirmations out loud. Well, Judith, I’ve really had such a lovely time chatting with you. And you know, finally getting to meet you face to face after so many years of being you know, seeing each other’s avatars on social media. And It’s just been It’s been really great. So thank you so much.

Judith  21:40

Thank you so much for asking me to be on This and it really is wonderful to get to see as much as the cartoon avatar face is great. It’s even better to get to see your real face

Sarah Shaw  21:51

Thank you for listening to This episode of talking head pain, the podcast that confronts head pain head on. If you liked This episode, please give it an honest five star rating write a positive review and spread the word by sharing with your friends and family. It’ll help more people like you find us. I’m Sarah Shaw and I will see you next time.

Narrator  22:11

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

Narrator  00:00

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

D’Sena’  00:06

“I think since COVID and finding other people in the disability community and finding Headache on the Hill and things of that sort that I have like really found my home. That’s what I feel like. I found my home I found my people.”

Sarah Shaw  00:06

Welcome to Talking Head Pain, the podcast that confronts head pain, head on. I’m your host Sarah Shaw, Senior Manager of BIPOC Community Outreach of the Global Healthy Living Foundation. I have been living with chronic migraine for almost 10 years and I’m very open about navigating life with my chronic disease journey as well as my experience living with anxiety. This podcast will be a window into other patients lives as they navigate their own journeys living with chronic pain, migraine and mental health. Today I’m joined by D’Sena’ a chronic migraine patient and mom, and Bailey, her service dog that helps her out with her chronic illnesses. Welcome to the show D’Sena’. I like to start off the show just by asking if you could use one word or adjective to describe your migraine attacks, what would that word be?

D’Sena’  01:15

Consuming.

Sarah Shaw  01:16

Ooh, “consuming”, that’s a really, really good adjective. When we live with a migraine, it affects every part of our day, right? Our personal lives, our work lives, our family life. Do you mind going in… talk a little bit more about what that consuming feeling is like for you?

D’Sena’  01:20

Well, I live with chronic migraine. My migraine is every day, all day. So it literally consumes my life. But since I am a single parent, I feel like there is no just time to just stop and just rest.. It’s a go go. I have to do it even when I don’t feel like doing it, so…

Sarah Shaw  01:55

That’s very true. And I actually have a question to talk about parenting with your child who also lives with migraine, right?

D’Sena’  02:02

Yes.

Sarah Shaw  02:03

Yeah. Do you mind sharing a little bit, uou know, I think your son… he’s very still very young. Can you talk about what that’s like to be a mom with migraine attacks, and then also taking care of a child who’s experiencing migraine attacks? Like how has that experience been? When did you first notice that he was getting migraine attacks?

D’Sena’  02:21

So my son started experiencing his attacks when he was five. Right now he’s nine. So he’s been dealing with them for the last four years. Usually every kid wants to play and they’ll play through anything. But he gets to the point where he’s playing and then: “Okay, I don’t feel good. I want to lay down.” If he gets really nauseous,  he’s throwing up, he is going through it. And like… it just drains him.

Sarah Shaw  02:48

Yeah. Did you know… were you able to pick up like on: Okay, this is something that my son is going through and it’s definitely migraine, or did you have to kind of like wait to figure it out? Or did you know right away, you were like: I know exactly what he’s feeling because that’s what I’ve been experienced.

D’Sena’  03:04

Yeah, I knew it was migraine. I knew it was real. And I knew I wanted to see him get treatment right away because I do not want him to become chronic. So if we can get a little Zofran to stop with the nausea, we’ll take that. We can start with the Tylenol, the Advil, that’s what he usually takes, that’s fine. I will take out my toolkit and I will use everything that I’ve gotten from a retreat just to help him or to help relieve some of his migraine. And with his attacks, sometimes he’s missed school. So he’s one of those kids that actually miss school with his migraine attacks.

Sarah Shaw  03:41

That’s so rough from a really young age to, you know… we often on Talking Head Pain, we hear a lot about adults and older adults or teenagers maybe living with migraine, but not young children. And I feel like it’s a lot more common than we realize. Like, have you met other parents that have children with migraine?

D’Sena’  04:01

I think this year when we did Headache on a Hill, that was the most that I met other parents talk about them dealing with the accommodations because that was one of our asks: Hey, you know what I’m talking about? It’s not just like: Okay, well, you know what I’m talking about because you have migraines too. You’re a parent of a child that has migraines, so…

Sarah Shaw  04:21

Exactly. And speaking of accommodations, was that something that you’ve been able to put into effect within the schooling system with your son yet? Or is that something that maybe it’s not something that you’re able to do?

D’Sena’  04:32

Well, it’s a back and forth because I believe that it’s an issue with the migraine, whereas his dad is kind of like: Oh, you know, he can sleep it off. So… and now it’s difficult when one parent believes that it’s an issue and the other parent doesn’t.

Sarah Shaw  04:48

And that goes along, I think with the stigma of migraine of it being an invisible illness when you don’t physically see bleeding, or you don’t see, you know, someone with their hand cut off or a broken bone where we know that we need to get a view on… You need to be on disability if you had some of those things or a little bit more time off from work, or school. But with migraine, it’s a little bit different because a lot of the side effects that we experience are invisible to a lot of society and a lot of that stigma that comes in about it’s not that serious or it’s just a headache, and you can just sleep it off. That’s definitely an interesting struggle for especially kids at a young age where it’s sometimes hard to like… You’re a kid you just want to play, you want to see your friends, you want to live like a normal life and it’s really hard when your migraine stops. What advice would you… You said that you met a couple of parents this year at Headache on the Hill since one of the asks was about accommodations? What advice would you give to share for parents of children who experienced migraine attacks? Like what are things to look out for? How have you helped care for him? What are ways maybe for somebody that does not live with migraine that might be helpful for them caring for younger children?

D’Sena’  05:57

Well, first of all, it is a real disease. And not only with seeing it in my son, we see it in his cousin, which is my niece. She’s four and she started saying she feels it in her tummy. So I don’t know if you’re aware of Migraine Diva where she talks about, you know… she was young and it was the tummy. That’s… that’s where the migraine is first. Sometimes look out for those signs: “My tummy hurts”, you know, “I’m not feeling well” and then go through the steps of: “Okay, when we do this or do that does it make it feel better? Do we need to turn the lights down low? Do we need to… Is too much sound too much for you? Is that sent a lot for you? so that we can adjust to make them feel comfortable during that period of time. It’s just like an adult, but they’re a child and they’re learning but they gotta learn to advocate for themselves as well. So here’s their starting point, but when they get out in the real world, they’re going to have to know how to do it themselves.

Sarah Shaw  06:56

Absolutely. I think that’s some really good advice. Growing up, I think I probably was experiencing migraine attacks, but I didn’t have the word for them where I was often be super nauseated all the time. And I didn’t know that there are some migraine attacks that you can experience without the headache. I didn’t understand that was something that is common. I assume once I started to get diagnosed: “Oh my god, my stomach really, really hurts” but I didn’t have the head pain and then I realized so I started to see people and talk to them about it. Yeah, there are different types of migraine attacks that don’t always present with the head pain. You know, there’s aura, there’s vestibular migraine, there’s hemiplegic migraine, there’s so many different types of migraine attacks. And I feel like if we don’t have the resources or the education about that, from a young age that we can miss out on getting treatment as early as possible. I want to switch gears and bring it back to you and ask what was your worst migraine attack like?

D’Sena’  07:56

Oh my goodness. That’s hard to say because I started having migraines when I was a child. So I started off as episodic. But I was involved in a motor vehicle accident back in 2010, December 2010. And then I… which resulted in a TBI. I was told that it’s just a headache, it will go away. And that headache turned into like a year of never going away and it never went away. And I was put on different medications. And you know, just I wasn’t believed. So the worst is not being believed. Going back and forth to urgent care or the hospital and then saying: “Okay, you know…” with any migraine sufferer, “What are you here for?”

Sarah Shaw  08:40

That’s rough when you’re not believed. And especially if we add the added stigma being women, of being women of color to try and get treatment. I feel like it’s a lot harder. So how does that make you feel?

D’Sena’  08:51

Ah, it was very frustrating. It got to the point where it’s like, you know, I’d rather suffer in silence at home, than go there, because I’m going to be around a lot of loud people. I see the fluorescent lights. And I’m probably going to be one of the last people to be seen because ‘migraine is just a headache, it’s just a headache’. “She’s just there for a headache. Nothing serious.” But I did have some doctors that did believe me. And they would come in and say: “Okay, Well, what would you like?” Even though they have my cocktail of choice in my chart. “What would you like?” So would tell them: “Well, this is what I would normally take,” and then we would go from there. And then I would you know, go home. It wouldn’t bring it down from… I wouldn’t be at a one but at least I wouldn’t be at my 10 or off the charts, at least. I would be able to function at least.

Sarah Shaw  09:41

It took you… and I think that you bring up a really… you brought up this earlier. I think it’ll bring up a really good point about people that take medications to help knock out a migraine attack versus the people who take medications to just get you back to baseline, right? You’re like: “Okay, I’m no longer at a 10, maybe I’m at a four or five, but I can function at those levels.” And we don’t talk about that a lot about how sometimes we could with… especially with chronic migraine, we sometimes are dealing with pain and working through that. You mentioned, you’re like: “I’m a single mom, I have to work through this pain because my kid’s relying on me,” you know. That is something that we don’t talk about. And I think that that’s a really important aspect to play in terms of our treatment and care. And I want to just go back to you know how sorry, I am that you weren’t validated that you weren’t seen because that’s our health care system failing us that you should be believed we should want the doctors to come in and treat us and take us seriously. What are you like now? I know that was a couple of years ago, how has your care changed? Have you noticed a difference? Are you being believed more?

D’Sena’  10:48

I think, since COVID, and finding other people in the disability community and finding things like Miles for Migraine and Headache on the Hill and things of that sort that I have, like really found like my home. That’s what I feel like I found my home, I found my people and we can bounce ideas off of one another. You know: This is what I dealt with; or how would you handle this situation? That has really helped out. And then just having my little corner, my little space on IG with my service dog, that has helped because I’m seeing more people that deal with migraine notches, chronic migraine, hemiplegic migraine, Thunderclap migraine or TMJ, or all different types. I didn’t know there was 200 plus migraines. But like, wow, and I knew there was a shortage of Headache Specialists for sure, because at the time I was with one insurance company, and I could not go out of network, I had to stay in network. And we only had one Headache Specialist. And that Headache Specialist just like kind of scarred my experience after reading his detailed doctor’s notes that I just did not want to go back to him at all. Although I loved all my other doctors and network, I ended up changing my insurance completely just so that I could see the doctors that I wanted to see, that could help me with my migraine.

Sarah Shaw  12:21

I think you bring up a really important point that we haven’t talked about, is about insurance companies, I always call them my nemesis because I feel like with prior authorizations and different step therapy that we have to go through… And also keeping you in a bubble of you know, you only had one Headache Specialist to choose from in that insurance plan that you had to switch insurance companies to be able to see better doctors. And that’s very limiting, and it’s not fair for patients that if you’re stuck with no, maybe a not so helpful doctor that you have to either keep seeing them or just not going to see them and suffering through the pain. I’m really glad that you were able to switch and to open up your horizons to other and better care, because that’s what we all deserve. All patients deserve good access to care. It shouldn’t be: Well, the fewer than one insurance plan, you’re only limited to a certain level of care. It should be across the board.

D’Sena’  13:17

Exactly. And I think like one of the big things with seeing that prior physician I was always taught if you’re going through something or a chronic illness to bring an advocate or someone with you. Because if you’re not able to talk at least you have that person there with you that can help you and that person for me was my mom and because we’re women of color, he wrote it off as: “Oh, you know, her Mom is angry.” No, my mom is not angry she’s advocating for her daughter, “and I think she goes see behavioral health because it’s all in her head.”

Sarah Shaw  13:54

Oh my gosh, that is completely. I’m… First of all, I’m sorry that you and your mom had to go through that. As black women, there is this unfortunate stereotype that we get put in an angry corner. When we speak up and advocate for ourselves we’re seen as angry and that is not at all what it is we’re just trying to advocate for our children advocating for ourselves, advocating for our parents, advocating for our friends, and those notes stick with you and traumatize you and make you want to switch and leave or not go back to the doctor at all and we have to do better as a society, we have to do better to not put those stereotypes and microaggressions into the health care field because we need more and more people to be getting better care to make sure like you said that you… you once started with episodic and now your chronic, we have to avoid going from episodic to chronic and the way to do that is by not putting notes like that in our patient’s files. I wanted to… I know we’re kind of coming down to a little bit more time but I wanted to talk a little bit about you mentioned your Instagram and service dog Bailey; a huge fan. Can you talk about how how she supports you during migraine attacks or your other chronic illness where it’s like: What does that mean to you to have that support?

D’Sena’  15:10

Oh my goodness, it… First getting Bailey was like: Why do you need a service dog? So obviously, I have a disability. Even though my disability is an invisible… invisible disability, when I do go through certain things, it becomes visible. So she has helped me out a lot. This year, Bailey will be four and she is… we’re glued together. We are definitely glued together. Like right now she’s laying at my feet. And she’s listening to us talk. I couldn’t ask for a better dog. So I’m glad that she has helped me, she… she knows how to bring me water. She knows how to bring me my medication. She knows how to respond and bring someone if I am having a seizure, because I have a seizure condition. She alerts when I am going through like […] and I’m about to faint, she can let me know like 10 to 15 minutes: Hey, you need to sit down or you’re gonna fall down.” So yeah, she’s been amazing. I love her.

Sarah Shaw  16:10

She sounds like a great right hand dog. You know, just always they’re just near you. And she’s, you know, like an accessibility for you. She helps you live your best life, it sounds like. That’s so wonderful and so beautiful. And I’m glad that I had a chance to meet Bailey during Headache on the Hill. And she was just such a joy in such a pleasure. So I’m really glad that she’s made such a positive impact in your life.

D’Sena’  16:33

Thank you.

Sarah Shaw  16:33

So I have one final question. Living with migraine attacks, I know can feel like really isolating and lonely. What self care tips do you do for yourself to make sure you’re taking care of you?

D’Sena’  16:44

Self care. So I really like getting my nails done. So I do that at least once a month. And I think that’s like my one like relaxation thing away from like my kids. And even like my nail tech, he knows… he knows Bailey baby. So even the other day, like: Where is she, we haven’t seen her.” I’m like, well, I’m gonna bring her in the summertime when it’s not so crazy right now with dropping off and picking up the kids, but they miss seeing her. And it’s amazing when you go somewhere they ask about her and don’t have her. That is the one place that we really feel like at home. And I do. I’m a big body art person so I love getting tattoos, so that’s another thing that I do.

Sarah Shaw  17:28

Yeah, that’s awesome. I think we all need to like take a step back and really hone into the little things that like you said, feel like home feel like maybe an escape or make yourself feel better because living in pain 24/7 or even weekly or daily is a lot and I think what we forget to do is to take care of ourselves. So if you’re all listening out there, make sure that you are doing… going to the nail salon, getting your nails done, and taking mindful moments for yourself. Well D’Sena’ I’m so glad that you joined us for Talking Head Pain and do you have anything else you’d like to add that we maybe didn’t discuss?

D’Sena’  18:04

Next month is Retreat Migraine. I’m super excited about that. So hopefully some of our or your listeners will be there and I get to meet them. I am a friendly person. Don’t be afraid to talk to me.

Sarah Shaw  18:16

Yeah, you definitely are. Well, I hope you have a wonderful time at Retreat Migraine and it was such a pleasure having you on!

D’Sena’  18:23

THank you so much. Thank you for having us.

Sarah Shaw  18:25

Thank you. Thank you for listening to this episode of Talking Head Pain the podcast that confronts head pain, head on. If you like this episode, please give it an honest five star rating, write a positive review, and spread the word by sharing with your friends and family. It’ll help more people like you, find us. I’m Sarah Shaw and I will see you next time.

Narrator  18:47

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

Narrator  00:00

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

Kate Schwab  00:10

I’m so shocked by how little knowledge people have about migraine, even doctors, even therapists across the board, and I wish I had had a therapist who specialized in migraine 10 years ago.

Sarah Shaw  00:22

Welcome to Talking Head Pain, the podcast that confronts head pain, head on. I’m your host Sarah Shaw, Senior Manager of BIPOC Community Outreach at the Global Healthy Living Foundation. I have been living with chronic migraine for almost 10 years and I’m very open about navigating life with my chronic disease journey as well as my experience living with anxiety. This podcast will be a window into other patients lives as they navigate their own journeys living with chronic pain, migraine and mental health. Today, I’m here with Kate Schwab, a somatic therapist who also lives with migraine attacks. Kate, I’d like to start off by asking you if you could use one word or adjective to describe your migraine attacks, what would it be?

Kate Schwab  01:04

Whoa, that’s such an interesting question. I imagine eight years ago, I would have a very different answer, but now I’m like, kind of at a loss. The first word that came to mind was like: Relentless. And that’s less of how I feel now. But that is how it used to feel. I think now there’s more of like a flow to it.

Sarah Shaw  01:22

That’s good. Relentless is a really good word that you chose because I think when we’re first starting off on our migraine journeys, and you’re kind of confused, and you’re like: What is this pain that will not end that I do not know enough information about to take care of myself? Relentless; We can all relate to that. Now, what was the word that you chose?

Kate Schwab  01:40

I think I said flow, but I don’t know. The word isolating comes up, right. It’s inherently so isolating and overwhelming.

Sarah Shaw  01:48

Those are all good words. All good words. I like to start off the show by asking those questions because I feel like every single person is going to have a very different answer or sometimes similarities. So I like to show like: Migraine is annoying, migraine is frustrating, migraine is relentless, migraine is isolating. So I think a lot of our listeners can relate to that.

Kate Schwab  02:07

It’s interesting, and I noticed my impulse to try to make it sound nice. It was like what’s the positive?

Sarah Shaw  02:14

You can be mean to your migraine. Our migraine attacks are not always nice to us. There’s no need for us to be nice to them.

Kate Schwab  02:20

Right.

Sarah Shaw  02:21

Speaking of migraine attacks, can you share with us what your worst migraine attack was like?

Kate Schwab  02:27

Interesting. I would say my first worst one was the worst because I didn’t know what was happening. You know, I thought there was… obviously it wasn’t an emergency but it felt really confusing and scary. And I had been dealing with what I know now is rebound headaches for months that no one had told me about. I didn’t know anything about it. There’s no way for me to know. And then I remember like one Sunday morning, I was like home from college and staying with my family. And I just had… I like woke up with unbearable pain. And it just continued all day. And I had to go to the ER and that was the first time I had to go to the ER for migraine pain. And so that definitely jumps out as like the most overwhelming, and like confusing. I think we were all like really scared because we didn’t know what was happening. And the ER as I’m sure many of us know, is not like the best place to go in the midst of that. But it was also like the thing we knew to do.

Sarah Shaw  03:22

Yeah, what are we supposed to do and we don’t know what’s going on with our bodies. We’re scared. We’re in pain, we want relief. So many people living with migraine attacks end up going into the ER because there’s just not enough education or resources about what your first migraine attack feels like. Because I think every single person… I know for me, I have a very similar story where I didn’t realize what I was experiencing was a migraine attack because there was no education out there for me about it. I always thought that migraine attack means that you can’t move, that you… and some… for some people, they can’t move. But for me, I was standing up I was with my friends and the nausea just overtook me and I had a lot of pain. And I didn’t know the word for nausea. I was just like, my stomach hurts. And I didn’t know back then that very common side effect of having a migraine attack. And again, very scary, very isolating. I’m sure if you think back that that experience must have been very scary for your entire family. When you went to the ER were they able to figure out what was going on or were there sort of like confusion still about what was happening?

Kate Schwab  04:31

Yeah, definitely still confusion. I think they knew it was something pain related. Certainly, you know, a lot of neurologists are not headache experts. From what I remember they gave me a lot of IV fluids and kind of like sedate… you know, like gave me some thing to kind of be able to sleep, but I remember having… It’s actually wild. I haven’t talked about this before but I had an allergic reaction there that day to an anti nausea med in the IV. That is an odd reaction because… I’ve since learned from a doctor what it was. It was a reaction that looks like panic.

Sarah Shaw  05:06

I know exactly what you’re talking about. I was just talking with a friend about this, she had the same reaction.

Kate Schwab  05:11

And so I was in the ER having what felt like a unbelievably huge panic attack. And none of the doctors or nurses… I don’t know if they didn’t know that that was a possible side effect, or they didn’t put it together. But I was like, am I… Like what is happening? And my parents were terrified. And we just thought I was like, really having a hard time with the pain, which I was. But then years later, I was at Jefferson getting IV, like inpatient. And I had the same experience. And I was like, oh, no, what’s happening again, and the nurse said: This is fine. This is normal. And it’s a reaction… they took it out of the IV, and I never experienced that again. So it’s just like another really isolating scary part of really not knowing what was happening, and then not really even knowing what’s happening, you know?

Sarah Shaw  05:54

Yeah, that must have been so scary. And as someone who lives with like, I live with anxiety, and I’ve experienced panic attacks: You’re in pain, and now you’re having a panic attack, and nobody knows what’s going on. Oh, goodness!

Kate Schwab  06:07

Exactly!

Sarah Shaw  06:08

I’m so glad that the next instance where you had that the nurse was able to explain: It’s alright, this is a very common reaction, we’re going to give you something to help because I also went to Jefferson, and they knew that I was somebody who had anxiety. And so they already gave me that medication to help calm me down, because it’s such a common reaction. But wow.

Kate Schwab  06:29

And I think since I’ve been working in this field, clinically, part of what I notice is how often if someone shows up with anxiety, and this was not news to anyone listening to this, I’m sure it’s like, that’s kind of seen as the thing, the reason why you’re having any sort of reaction to the pain, not the fact that the pain is unbelievably overwhelming in and of itself, and I think that was like my first glimpse of that experience of like: This is a literal reaction to a medication, but I’m just kind of being placated or like told to be quiet about it. And it just really blew my mind and still blows my mind.

Sarah Shaw  07:02

I’m really glad that you shared that because I feel like that’s something with migraine, and I’ll get into this later but talking about mental health and things like you know, for so long, because our pain is invisible, you can’t really physically see that we’re having a migraine attack. Maybe your eyes, look more droopy, or you’re unable to leave the bed, but sometimes with doctors, especially as women, we’re told it’s all in your head, or we’re told that our pain… For me, I was told my pain was just anxiety. And I was like, I know what anxiety is.

Kate Schwab  07:32

Yeah.

Sarah Shaw  07:33

This is not anxiety.

Kate Schwab  07:35

Exactly. Which is another way that we’re not being seen as like experts on our own bodies and experience. You know what anxiety feels like in your body, and you’re saying that’s not what this is. You have the most information in the room about what happens in your body, and you’re having anxiety and it’s just as endlessly frustrating that there are practitioners who are not looking to patients or clients as the expert on that experience, right?

Sarah Shaw  07:59

Absolutely. Absolutely. We need more trauma-informed, mental-health informed doctors that know how to talk to patients, especially when we’re going through something that’s really scary, like not knowing… I’m thinking back to you and your family, not knowing what was going on with you. Very terrifying experience, so I hope that we can find more and more doctors to help patients, you know, get help and to get relief. So I found you on Instagram, and we’ve been following each other for a while, and I was really, really drawn to your Instagram handle @yourmigrainetherapist, and I immediately thought… felt like a sense of belonging. I speak pretty openly about my experience living not only with chronic migraine, but anxiety as well. I like to share that with my followers because I am human. I’m someone who, you know, for a while I was ashamed of living with anxiety, and since going back to therapy, I’ve kind of reclaimed it. That’s who I am. I’m a person who lives with chronic pain. And I also live with anxiety. And so I was really jazzed that there was a therapist out there that was inclusive and is talking about chronic pain in therapy. I would love to learn about what led you on this journey to create this specifically as your career path, and also what led you to start your Instagram account.

Kate Schwab  09:14

So nice to hear that. I really appreciate how you’re talking about your own experience. I think therapists in general are kind of… or in some cases are taught to be a blank slate. That’s kind of what we’re taught in grad school, etc. That’s not how I function, that’s not realistic. I don’t really think that helps anyone. So I love what you’re saying. And in terms of what’s brought me to this. I think I… way before I had a migraine diagnosis or was dealing with migraine on a more chronic basis. I knew I wanted to be a therapist and was in undergrad for psychology and then started experiencing migraine and in college… late college, and then later once I went to grad school for social work, I just was really drawn to working with connection and disconnection and found that to be such an interesting scene. And I’m very relationally oriented. So I really work on relationships with the person I’m working with. We work on what safety and connection gonna feel like here; how do we make that together? And then find that for you out in the world as well. And how do we find that internally for you? And I think that in the decade plus that I’ve been dealing with pain, I have been acutely aware of how much pain disconnects us from each other, and how… and of course, I’m going to speak as a white woman; whiteness, and like white supremacy, and the way that we’re in capitalism, and the way we’re taught to be, keeps us from each other in these huge ways, and keeps us from being able to tolerate sitting with people in pain, or just being with each other in pain, right, like, in whatever way. And that’s not specific to migraine, or physical pain, I think that shows up with trauma and relational trauma and intimate partner violence and all these other things. But I noticed that I work with a lot of queer people. And one of the last jobs I had was working at a place where we really focused on relationships and equity. And there’s just such there’s so much there about connection and disconnection and building safety. And I think at a certain point, I kind of felt like I’ve spent a decade learning everything I can about migraine, learning how to figure it out in my life, and my relationships and my own body, and I feel like I have all this information, and I just got this degree, and so like, I think there’s a thing that it felt like a responsibility to talk about this stuff more. And it’s something that I still am so shocked by how little knowledge people have about migraine, even doctors, even therapists across the board, and I wish I had had a therapist who specialized in migraine 10 years ago. And so I think that’s a big part of why I started the Instagram, I truly sorted out because I thought it’d be fun. And it would be like, you know, I could put some things up that I’m thinking about for my practice and maybe connect with other therapists. And they did not expect the amount of like interest in it that quickly. It just felt really fun. And it’s such a sweet group of people everyone’s so smart and like curious and excited about, you know. Stuff that people are talking about… It’s been, like delightful. And I think for me, it was kind of just about the sentiment I have about why I do this work is like I don’t want people to feel alone with this stuff. I think often that’s what people have had to do, is be like really alone. And that’s… I have that experience for sure.

Sarah Shaw  12:27

Absolutely. Thinking back to what you said about safety and how important it is for people to feel safe, to feel vulnerable, and that’s a lot of what therapy is, is having that safe space, but also with people living with chronic pain, living with migraine, living with cluster headaches, a lot of times we don’t feel safe because we are constantly in pain. And so knowing that there is a therapist or multiple people out there, because I see a therapist who… she doesn’t live with migraine but has had experience with chronic pain, and there’s just this level of like… you get it you understand. Like I know for me, I’ve shown up to my therapy appointments like in the middle of a migraine attack. And she is so kind and so understanding and empathetic and is like we can reschedule this, you do not have to endure this session. Like I want you to take care of yourself and I want you… and then the next time… We’ll reschedule and I’ll come back. And I was like I really needed that break. Thank you so much. And just like knowing that there are people out there that can understand I think is brings that level of safety and community. A lot of people living with migraine and chronic pain in general also live with comorbidities like mental health issues like myself. I live with anxiety and a little depression. In addition to medications to help manage my anxiety and panic attacks, I also go to weekly therapy. In fact, in a survey run by the American Migraine Foundation, patients with migraine reported being diagnosed with anxiety, almost 60%, with depression 50%, or PTSD 25%. Can you talk about how important it is to have a therapist that is also informed in their sessions on how to talk or validate with our clients about chronic pain, for instance, with neurological disease like migraine?

Kate Schwab  14:17

Yeah, that’s such a good question. I think the… One of the things I think about a lot with how important it is to understand what’s happening is; a lot of the people I work with have tried so many things, are completely exhausted, feel pretty helpless or powerless, and are extremely used to going into a provider, and not being seen, and being kind of told what to do, maybe given like a couple of seconds to talk about what they are feeling or thinking. It’s just like not a collaborative experience. And it’s not an experience. It’s about the person in front of them. And so I think that a lot of how I try to work is by really slowing everything down and figuring out what… Yeah, what do they need and what have they not been getting. And there’s such a clear impact on the body and on the mind, but on the body in this very specific way, when I see someone come in, and they have not been believed, or they’ve been dismissed, or they’ve been going through school where they haven’t had any support or resources. Your body gets so tight and exhausted, and you’re in that kind of hyper vigilant state, right, you have to take care of yourself all the time. You have to check everything all the time, because no one else is doing it for you. And what we’re taught over and over is the migraine is not something that people really are invested in supporting in a systemic way. And I don’t mean that for everyone, I think there’s fantastic people doing really lovely, really important work. But on a large scale, historically, it’s not something that people really get support around. And so that has an effect, physiologically, right, it becomes a terrifying thing to have to move through the world because no one is looking out for you. And so when I think about what therapy can offer, I’m sitting with someone and we’re talking about that, and we talk about the possibility of this being a space where they don’t have to do that, and their shoulders like fall down, right, or like a deep breath comes out or something like that, where we’re building relief and building connection, where they aren’t the only one holding it. I can hold it with them, actually, and we can figure out what they need here together. And I have found that to be really important, and really not something they’re getting in other places, unfortunately, because migraine is such a, you know, we know all the things about that, but it’s just such an underserved community. And of course, on top of that, you know, depending on other identities that you hold, you’re very used to that already. And the safety part of that is extremely complicated. And it just compounds.

Sarah Shaw  16:47

Absolutely, I remember the first time that I was believed by a healthcare provider, and I was like, I was like ready to like have my list… my long list of things. But no, this is… I understand you’re in pain, and It’s not okay that you’re in pain, and we’re gonna figure out a way to make you not be in this much pain anymore. And we’re not going to give up on you, because I had been told in the past, you’re a problem patient because all the treatments were not working for the kind of how much pain I had been in. And I remember you’re talking about your shoulders relaxing, like I just remember the sense of calm that like came over me and feeling like we talked about safe spaces, but like that safe space of like knowing; okay, someone’s got my back, they believe me, and I can like I’m not doing this fight with my pain alone anymore.

Kate Schwab  17:34

Oh, yeah, absolutely. And I do think that what we know clinically is that yes, theory is important. Yes, training is important. But the thing that is therapeutically going to make the biggest difference is if you feel safe and connected to the therapist. And so I think that’s why I’m such a proponent of learning how to show up for clients better who deal with chronic pain and chronic migraine because it is a literal safety thing, right. But I think when you take the time to learn about any identity, you’re building safety, and you’re building connection, and that is one of the most important things you can do as a therapist

Sarah Shaw  18:10

Absolutely. Since we know that living with any kind of pain, but migraine attacks, it can sometimes you know, we talked about it feeling isolating, what self care tips do you do for yourself to make sure you’re taking care of you?

Kate Schwab  18:22

That’s nice. I do a lot at this point with that. I have some really specific morning and nighttime kind of routines that start my day and my day really nicely. I mean, I talk a ton on my page about building internal safety and connection, and that’s something I’ve been lucky to work with an amazing somatic therapist myself for years at this point. And that’s been huge in just building like a really solid, safe relationship with myself. And so I lean on that a lot, and how I talk to myself and how I move through the day is really has really been transformed through that. And then I also think something that a lot of people with migraine struggle with is some rigidity, right? We’re kind of taught you have to do everything… zero, you know, one way or the other. If you’re not doing it all this way, if you’re not cutting out all these foods, you’re gonna get you know…it’s gonna be terrible. And so I think building some flexibility and some tolerance for things kind of just going how they’re gonna go has been a huge self care practice for me. I don’t know if that makes sense.

Sarah Shaw  19:26

No, that absolutely makes sense. I feel like with migraine, it’s unpredictable, and so we need to be a little loose and fluid with how we… every day is completely different. Some days I wake up without a migraine because I don’t and that’s how, you know, we have to learn how to take care of ourselves and be gentle with ourselves. And if we don’t follow the “rules” 100% not to be hard on yourself about that, that it’s okay.

Kate Schwab  19:49

Absolutely. Yeah. And that again, is like the just building safety. I think about that a lot as yeah, I’m actually going to be able to figure this out and handle this no matter what happens today. I’ve done it before I’ll be able to keep doing it, that feels so crucial and the self care as well.

Sarah Shaw  20:05

Absolutely. Well I just want to thank you for coming on the show today I’ve learned a lot and I can’t wait for listeners to hear this episode.

Kate Schwab  20:13

Thanks so much, Sarah!

Sarah Shaw  20:15

Thank you for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating write a positive review and spread the word by sharing with your friends and family. It’ll help more people like you, find us. I’m Sarah Shaw and I will see you next time.

Narrator  20:34

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

Narrator  00:00

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

Joe Coe  00:10

Welcome to Talking Head Pain, the podcast that confronts head pain, head on. I’m here today with Sarah Shaw, who is a colleague at GHLF with me. Sarah has been featured in two previous episodes of Talking Head Pain so you’ve probably heard from her before. We’re going to talk about some exciting news and changes to Talking Head Pain. Welcome, Sarah, how are you today?

Sarah Shaw  00:32

Thank you, Joe. I’m really excited to be here. I’m migraine free today, which I will celebrate every day being on here, so really excited to chat with the listeners about what we have in store.

Joe Coe  00:45

So let’s just get to it. We have been doing Talking Head Pain at GHLF for quite some time, produced three seasons, have spoken to dozens and dozens of patients and providers about migraine-related diseases… We took some time to think about how we can better serve our community. And one of the ideas that we came up with was making it bigger than me being the singular host. So we’re really excited to announce that Sarah will be co-hosting Talking Head Pain moving forward. How do you feel about that Sarah?

Sarah Shaw  01:19

I’m super excited. It’s funny, I think, you know, I was always told in college that I had a voice for radio, so I think it’s soothing that we expand and we go out and we get to connect to more and more patients in the migraine community. And I feel really honored to, you know, to help pass the mic, theoretically, hypothetically, to more and more patients in the migraine community. So I’m really excited about this change.

Joe Coe  01:44

Definitely. And I felt that it was important for you to be elevated and have your voice heard even more because you have so much to share and your connection with patients and people that live with these chronic diseases has been so deep and profound, that I’m really excited to hear what you are going to do and who you’re going to speak with, and the types of issues you’re gonna draw that out, so that will be super, super exciting and interesting for me.

Sarah Shaw  02:10

Yeah, I’m really looking forward to it. I think in terms of like… the direction that I’m gonna go in, I feel like Joe laid like a really great blueprint for Talking Head Pain and all the guests that you’ve had, and all the people that you’ve been highlighting and giving a voice to that, that were… didn’t really have a voice, that didn’t really have the spotlight put on them. And I want to continue that legacy, if that you’ve led, and also put a little spin on it in terms of; I’m very open about my migraine journey, but I’m also very open about like my mental health as well. I’m very open about the fact that I’m a queer black person living with migraine and anxiety. I’m very open talking about therapy and what I learned this week in therapy and what my therapist maybe helped me navigate. And I think that one of the things that I really wanted to dive into is; we know that people living with migraine can have mental health issues such as depression and anxiety, and we as a society often shy away from talking about issues like that. So I want to bring that front and center because mental health issues can be a comorbidity of someone living with a chronic disease like migraine or cluster headache. And I want to talk to listeners and the guests that we have on about like what they do for self-care what they do to make themselves feel better. You know, living with a chronic disease like migraine and head pain, it can be a pretty daunting task, and I want us to feel free to have open conversations about it and share tips and tricks with the rest of the community about what you do to help navigate out of some pretty scary or dark times.

Joe Coe  03:41

I so agree with that. And really look forward to hearing how you’re going to draw that out, and the stories that you’re going to share. I know that we’ll continue to do health care provider outreach, and be at medical conferences, and talk to those folks as well, so it’ll be a really interesting marriage between these very different but also similar disciplines and experiences. And I think that will be the beauty of this relationship and this new process and evolution of Talking Head Pain. As an organization, we have to continue to stay in front of the curve and make sure that we’re serving patients in all the ways possible so I think this will be a really important and cool way that we’re doing that.

Sarah Shaw  04:26

Yeah. And I think as long as we keep passing the mic to, you know, often underserved communities that typically do not get heard; BIPOC, LGBTQ which is… you’ve been doing such a great job at making sure that those voices are heard. I hope to take up the baton and continue to share those stories.

Joe Coe  04:42

And if you want your story to be featured on Talking Head Pain, you can reach out to me or Sarah. My email is [email protected] and Sara’s is sshaw, that’s [email protected], and you can reach out to us and we all schedule a pre-interview and hopefully be able to share your story.

Sarah Shaw  05:06

Yeah, we’re looking forward to it. Hope you all continue to support us and listen to some really interesting stories.

Joe Coe  05:13

So stay tuned to listen to Sarah really crush it, talking with patients and highlighting stories that are so important to our community. And don’t worry, I’m not going anywhere. I’m going to pop in every now and then at medical conferences, talking to health care providers, researchers and others about some of the new areas that we should explore in migraine. So stay tuned.

Sarah Shaw  05:38

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

Narrator  05:53

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

Narrator  00:00

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

Dr. Nina Riggins  00:09

“One of the things I am doing: I participate with American Headache Society to provide education directly from headache specialist to primary care, OBGYN, and truthfully, we can expand our information to any specialist who is interested.”

Joe Coe  00:29

Hello and welcome to Talking Head Pain, the podcast that confronts head pain, head on. Hi, I’m Joe Coe, Director of Education & Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m here today with an esteemed neurologist, Dr. Nina Riggins who is a board certified neurologist who specializes in headache medicine and traumatic brain injury. She also is a fellow at the American Headache Society and the American Academy of Neurology, and she is no stranger to advocacy, having participated in Neurology on the Hill and advocacy of that in DC, as well as Headache on the Hill, which also is in DC. Dr. Riggins, it’s so nice to have you today. How are you doing?

Dr. Nina Riggins  01:11

Thank you so much for having me here. Hi!

Joe Coe  01:18

Can you tell our audience about what you do as a neurologist? And what is exciting you in this field right now?

Dr. Nina Riggins  01:25

Thank you so much. That’s a great question. So I am a headache specialist, and I’m a neurologist. And right now it’s a super exciting time to be in the headache field of medicine. We have so much advances in new treatments for our patients. And I feel so happy that it also draws all these amazing new brain powers to our profession. I see unbelievable interest from students, residents, fellows, and education is one of my passions and as one is advocacy. How do we get all these new, amazing treatments accessible to our patients?

Joe Coe  02:14

In terms of students, what draws them to headache medicine?

Dr. Nina Riggins  02:17

I think they really can see that we can help now. So it’s amazing when students come and visit us for follow up appointments and they see improvement from before in disabling headache disease. It’s beautiful to experience together as they feel part of the team. And I always say students and any other learners [are] always welcome to join us. And one of the things I am doing: I participate with American Headache Society’s “First Contact”. This is a program who provides education directly from headache specialist to primary care, OBGYN, and truthfully, we can expand our information to any specialist who is interested. Like one of the most recent projects, we [are] working on vestibular migraine with ENT group. So this collaboration is always super exciting for me.

Joe Coe  03:24

That makes so much sense, and it’s so important because those are the folks that a lot of migraine patients are going to see. I was talking with some of your colleagues at Headache on the Hill recently about how the majority of us as migraine patients aren’t going to see them as headache specialists. I have a general neurologist who does a great job of managing me and that’s reality that a lot of people that live with migraine are either not needing to see a headache specialist because of the severity of their disease or because of where we live [we] don’t have access to that. So that program that you just discussed is so important because you know our nurses, our primary care physicians, our pharmacists, all of the people that we’re going to engage with need to know what a migraine is, and vestibular migraine, ENTs, so that we can diagnose them earlier so people aren’t living with like all of these questions.

Dr. Nina Riggins  04:18

Yes, that’s so true, and many times during my day in the clinic when I see new patients – new to me – but who had for example, chronic migraine for years, it will almost break my heart when I hear [an] adult person saying “In my childhood I thought everyone has pain every day”. And it was amazing to me to see that Headache on the Hill this year did address pediatrics [on] kids issues with migraine, and actually one of the issues was [a] letter, proposing [a] letter to the Department of Education to support our kids when they need extra resources in school to be successful in the long run, because migraine is not just a headache, it’s a whole disorder of brain networks. And it could be cognitive, it could be symptoms like nausea or dizziness, and [if the … system] can get in involved. And we do need clarified that those kids needs to support and they will succeed. This all will help.

Joe Coe  05:33

That’s so important.

Dr. Nina Riggins  05:36

I see adults and actually always great since my fellowship at UCSF, our director, now pediatric neurologist, Dr. Gelfand, when I came to Miles for Migraine teen camp, she was so welcoming, and she said “Those kids will graduate into adult clinics”, and they will be people who I will see. And that’s how I look at that. And I actually just recently submitted my project to one of AAN’s leadership programs and fingers crossed about transition of kids to adults in headache medicine. So I know a lot of work has already been done by multiple bright minds but for us here in San Diego, I have specific ideas [on] how to streamline that.

Joe Coe  06:32

That’s amazing. And I was one of those people that thought a headache was normal that everyone had it and they weren’t bad. They weren’t like debilitating headaches most days, but I just was like “You don’t get a headache?” When you realize that, as an adult, that people live without ever having a headache, really surprised me. And I think the work that you’re doing is so important to raise the awareness on all levels. What do you think some of the big challenges are that your patients face in terms of advocacy and access?

Dr. Nina Riggins  07:06

Yeah, that brings me to our next event which I will be flying [to] at the end of this week. It happens in DC, American Academy of Neurology’s “Neurology on the Hill”, and I’m extremely honored to be Captain of our California team; we have an amazing team. And we have very important issues to help our patients. So we’re always advocating for access. So for example, in my own headache clinic, in the center, I do have wonderful devices to show neuromodulation, they’re cleared by FDA, we have five FDA cleared devices for treatment of migraine. Some of them can be applicable for people with cluster, and persons with hemicrania, it’s [an] extremely tough headache and disabling and we do have devices which I would recommend, but access could be a barrier. And so we’re always advocating together for access to our passions. And this time, during Neurology on the Hill again we’ll be talking about addressing those barriers, including things like reimbursements, including things like how do we make care available to our veterans, these neurology centers of excellence. And I really love research. So in front of my eyes, here they feel bloomed. So we went from almost very few medications to offer or tending [to] someone or discussing with someone to surgery where neuromodulation device had to be implanted with neurosurgery and then person would have [leads here] and battery there. And it was whole process, [a] few hours, of trying to [titrate to ride] stimulation in the clinic up and down of those devices. Now I’m telling my patients, “You know, we can try if you didn’t like it for any reason, or was not effective. We will go to next one. We put it in the box and sent it back.” So this is so much better.

Joe Coe  09:38

That’s amazing. And where do you think the biggest unmet need for research is?

Dr. Nina Riggins  09:42

Definitely identifying biomarkers. It would be amazing. When I see a person to say, “Oh, because you have these biomarkers,  I think this medication would be the best for you.” So precision medicine, individualized plan as opposed to “Well, we have to start with this medication, we give it good trial. And then we move to the next one.” And so biomarkers research and to make it individual, make it straight out what would work for this particular person is in the future. I think different specialties do already do and progress in this direction. I see that medications for mood, our colleagues in psychiatry, they can check genetics and already predict to some extent. It’s still not perfect at all, to some extent, “Okay, this medication maybe makes more sense for this person to start with.” So that’s… I’m super excited about new treatments and identifying which treatment will work for this particular person leaving with migraine or who has a headache disorder.

Joe Coe  11:02

So our organization actually has a podcast called “Let’s Get Personal.” It’s about precision medication and medicine mostly in the autoimmune space because there’s been a lot of research and development there. So we have an audio guide, “Understanding Precision, Personalized Medicine for Rheumatoid Arthritis” and like how the present and future care of that. So I love that you’re talking about this topic for migraine because, internally, I talk to my colleagues, I’m like, “Why can’t we have this for migraine?” And I feel like we’re moving in that direction. The more that I go to medical conferences, the more I’m hearing people like yourself, say “We need to find a biomarker,” and what that means for a patient is that “We can then help you find a treatment that might work better so you don’t have to go through all of these in an ideal world step therapy edits and different fail first protocols” and hopefully insurance will get on board and not make it rough once we do find out what might work better for us. Really interesting stuff.

Dr. Nina Riggins  12:02

That’s amazing and thank you for this work you’re doing and that’s, that’s so great. I do believe that addressing things like rheumatoid arthritis and any other possible cause for inflammation or cause for secondary headache – [is] very important. So [an] example would be nowadays we have one and five people who have long-COVID. They would have headache as one of the symptoms and this headache would be so resistant and we need to learn more [about] how to treat it. And so one of the issues from Headache on the Hill, the February 14th event this year, was asking to help us to do more research for long-COVID and specifically in [the] headache medicine area.

Joe Coe  12:57

Just a clarity for our audience: you talked about the autonomic system and disorders related to migraine. Can you explain what that is and what the connection is?

Dr. Nina Riggins  13:07

So because migraine is network disorder of brain symptoms and we all know that one of the symptoms for example of cluster person even on the draw and if you just type “cluster headache picture,” it will usually show someone maybe a little bit of redness-like flash and it will show this like fire around eyes. It will show that eye may be a little bit more closed on one side; we call it Ptosis, so eyelid can little bit droop. Some people, they can have these multiple headache disorders, migraine and cluster, even hoarse voice during attacks and it’s because this autonomic neurosystem, it’s a little bit shift of water in our body and [the] vocal cords can get a little bit more full of water and some people say like “Oh now I know why I have hoarse voice during a migraine attack.” And so we use it for our treatments. So example would be … and ganglion blocks. And we have those ganglions on the both sides of basically our nose, which in the past we’d have to go with needle either from from the area of the mouth or from outside and it was pretty extensive procedure with radiology or [it] was interventional, … and now we have devices and those devices help us just make it application. It’s almost like nasal spray, but it has this excellent efficacy for some people. And I love to offer this as a result of research. A result of the calculated angle: how to get to the thin part basically in the nose for medication to diffuse without needles. So it can be very effective for some people. And I love when we can offer something without pain of needle stick but effective potentially, so we keep bringing it up for different conferences. It’s really nice thing for during some periods in women’s journey in migraine; we definitely use a lot of safer for baby medications during this period of time. And ropivacaine in nasal spray, or some nerve block with that medication can be pretty much safer as many other things which we can use during preparation to pregnancy, pregnancy, breastfeeding and so I do have special interests, and I’m thrilled when I see, during telemedicine, all these happy babies on the screen or some people come in with them. It’s like a wonderful experience. We do have PowerPoint which anyone can invite speaker from American Headache Society. It’s, it’s like inviting … or just review  online. It’s women’s journey covering different treatments in different periods of time for women, [starting with girls going to old age] and how to address it.

Joe Coe  16:46

Well I learned so much in this 15-20 minutes that we spoke. Really appreciate your knowledge and also your passion. As I was listening to talk, I’m like your patients are so lucky that they have someone that cares and that is staying on top of the research and that is thinking outside the box to make us feel better. So really appreciate all that you do and your advocacy and the work that you do to advance the mission of headache specialists.

Dr. Nina Riggins  17:14

Thank you. Thank you so much.

Joe Coe  17:16

Well, thank you so much and go get them.

Joe Coe  17:20

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

Narrator  17:36

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

Narrator  00:00

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

Susan McManus  00:06

“I think it’s really important for people to be their own advocates. And when this all first started for me, there was not a headache specialist in the Atlanta area, but I found a neurologist who I call a ‘team doctor’. She listens to me, I can bring her things and we talk it through.”

Joe Coe  00:29

Hello, and welcome to Talking Head Pain, the podcast that confronts head pain, head on. Hi, I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m here with Susan McManus, who is a migraine advocate that I connected with at Headache on the Hill. Susan has been attending the Alliance for Headache Disorders Advocacy’s Headache on the Hill since 2020, both in person and virtually. But it was a good opportunity to connect with Susan and learn why she became an advocate and the important work that she does. Hi, Susan, how are you today?

Susan McManus  01:05

Good, how are you doing?

Joe Coe  01:06

I’m doing great. I’m really looking forward to this discussion.

Susan McManus  01:09

Thank you for having me!

Joe Coe  01:13

So let’s start with talking about migraine and what your worst migraine attack is like. Can you explain it to our audience very quickly?

Susan McManus  01:22

I think what most people do not understand is that it’s not just a headache, it’s a full body experience. So there may be a migraine I have where the head pain isn’t, you know, too bad, but the fatigue is just overwhelming. And so I’m not going to get out of the chair. And I think also people don’t understand the difference between fatigue and being tired. And I tell people being tired is being tired. Having fatigue is, “I am melted into my chair. My chair has consumed me.” So that can sometimes be my worst.

Joe Coe  01:55

I’ve heard people talk about fatigue, feeling like you’re walking through jello, or that there’s a force pulling you down when you’re trying to just function. So yeah, there is a big difference between being tired and having fatigue.

Susan McManus  02:10

Yeah, that’s a good analogy as well.

Joe Coe  02:12

You have had migraine for how long Susan?

Susan McManus  02:15

I was diagnosed a little over 20 years ago. I do think that teenage Susan had it, as well as my dad, and we would just say: “We had a killer sinus headache”. And we had just recently moved to Georgia so I think that it was also our bodies adapting to the different pollens and things like that. But I don’t know for sure. I wish I could go back. I was probably having menstrual migraines. And now that I look back on it… So I officially got diagnosed a little over 20 years ago. And then I could call myself a “very highly functioning migraineur”. Because I had kids in school, I was on PTA boards, booster clubs, very involved. I substituted. You know, if I had one coming on I would take my medicine, two hours later, I’d feel fine, go about my day. And then a little over a dozen years ago, I turned chronic and that’s when life kind of halted.

Joe Coe  03:03

And did your family understand that shift from episodic to chronic?

Susan McManus  03:07

That’s interesting. So when it happened, my oldest daughter was away at college, and my youngest one was in high school. So I’m so grateful I didn’t have small children while I was dealing with the beginnings of the chronic part. So we’ll say that my daughter being away at college didn’t get it as much because she just didn’t see it. She wasn’t here. Whereas my husband and my younger daughter were still living here. But my husband, he’s the one that can really tell. Like if I go on a… like a girls trip, let’s say and I’ll send him pictures. He’ll text me. He’s like: “You have a migraine?”. “Yeah, how did you know?”. He goes: “I can tell in your eyes”. That’s a spousal thing. He has been my rock and I do have a very, very strong family support system.

Joe Coe  03:51

And then you got involved in advocacy. How did you find out about Headache on the Hill and what brought you to lending your voice in that way?

Susan McManus  04:00

So it actually goes back a little bit further. I think it was around 2016. I started volunteering with the Migraine World Summit, which led to then also volunteering with migraineagain.com. And I did that for a few years. And then it dawned on me. One thing I kept telling myself is I don’t want to think about migraine 24/7. Well, when you’re doing a volunteer job that is all about migraine, that’s all you’re doing. And I thought I had to pull myself back from that because it was just a little bit much. But that’s how I then found out about Headache on the Hill. And my first Headache on the Hill in 2020 was in person. And I got to meet a lot of the people that I worked with on the World Summit who are from all over the world, but the ones that lived in other places in the country… My roommate was from California, so we had known each other for a couple of years but had never actually met, and that was a lot of fun. We had a dinner one night… I miss those connections, although I’ve stayed in touch with a number of those people. It just was better for me to not think about it every day. So Headache on the Hill is great, in that it’s just once a year. You know, we put in, you know, our training, so the whole thing is only a couple of weeks. It’s not a huge time commitment, but it keeps my hand in the advocate pot, so to speak, and makes me feel like I’m still doing something good. I now also do Miles for Migraine, which is also a part of Headache on the Hill, they sponsor each other.

Joe Coe  05:28

That’s amazing, and small plug for Migraine World Summit. This year I’m one of the speakers!

Susan McManus  05:35

Oh, congrats. It starts next week?

Joe Coe  05:37

It does. Well, it might not be next week for the viewers or the listeners, but you can find it at ‘migraineworldsummit.com’ I believe. A really, really interesting program, and Carl and Paula are good friends and have been amazing advocates in this work. So I’m not surprised that you’ve connected with some good folks through your journeys. There was something that you spoke about, which I thought was really interesting, and we don’t hear it a lot from advocates. You talked about how you don’t want to think about migraine or your chronic disease 24/7. And I think that’s a really interesting perspective to share. Can you talk about why you don’t want to think about your disease all the time?

Susan McManus  06:22

I actually have done a few therapy sessions. And one thing the therapist had me do, because I just felt like I was having migraines, you know, day after day after day. And she said, you know: Each day just journal. Like, you don’t have to go in… I’m not a writer, like don’t go into writing all about it, but just sort of take note of: “Well, the morning was good. And I was good at lunch. But around 2pm I got hit with a migraine. So the late afternoon, early evening, they weren’t so great.” And that helped me realize that even though like we have to call that a migraine day for medical purposes, my entire day was not actually a migraine. I had some good hours. And so that kind of started the thought process of: Yeah, I don’t want to think… I don’t do the journaling anymore because it’s just… I know now, you know, I’m not in a migraine all 24 hours of the day. Sometimes I am, but sometimes I’m not. And so I don’t usually do New Year’s resolutions, but this year, I decided: I need to get out of the house more. I am a very outgoing person, I play tennis. We have a pretty big tennis league here in Atlanta that’s getting ready to start back up. So that’ll help get me out of the house. But I miss people. And so I thought, I’m going to try something this year, and I’m just going to pretend I don’t have migraine, and I’m going to try to get out of the house and do something every day.

Joe Coe  07:39

And how has that been going? Have you done anything very different that you might not have done?

Susan McManus  07:44

I got done a little shopping where I would have normally have done that online. But then yesterday, I had decided, oh, let’s do this, this and this, and I actually was supposed to go to tennis practice around 9:30 and it was a pretty day, and I was excited about that. But I woke up at about 5:30 and I was in so much pain, texted a couple of my girlfriends and said: “I don’t think I’m going to be there.” So you know, I’m trying to put a positive spin on it and do what I can. So I can’t really tell you right now. It’s still early in the process.

Joe Coe  08:16

And I think that’s important that we look to live the life that we want to live, but also know that it’s okay if we can’t, and that’s not failing, but we’re working toward engaging in the world in the manner in which we want to. So I think it’s interesting, I don’t think we talk enough about that concept in patient advocacy. And it’s hard if you are you know, chronic or if you have symptoms 24/7, or if you are like high disease burden to say I’m going to not think about it, because how can you not, but there are many of us that can not dwell on some of the negatives and what might that look like? And how might that feel? I think those are really interesting questions to ask ourselves. How does that contribute to our ability to continue to advocate so we don’t engage in or have a burnout?

Susan McManus  09:07

Yeah, I personally was having an issue with what is my purpose sort of. I was a stay at home mom, which I love that I was, like I said very involved with school and my two girls who played every sport there is, and substituting, so we were always on the go. And then when my youngest went to college, an opportunity came up to work for my brother part time but out of my home. And I really enjoyed that because I was like what am I going to do now? You know, I don’t have any more school volunteering in this. That was my job. So I worked for him part time for about four years until I just got to the point where I was working in 15 minute increments, like in my pajamas, and I was barely getting by and I just I just couldn’t do it anymore. I think I would probably qualify for disability but that’s not something I pursued but I cannot hold down a regular job, which I would like to have something to do do part time. But then tennis… like I said, tennis is coming up and then I don’t want a job interfering to get outside and play my tennis.

Joe Coe  10:07

I wouldn’t either! Let the people play tennis. So is there anything that I didn’t ask that you would want to share?

Susan McManus  10:13

I just think it’s really important for people to be their own advocates. And when this all first started for me, there was not a headache specialist in the Atlanta area, but I found a neurologist who I call a ‘team doctor’. She listens to me. I can bring her things and we talk it through. I was her first patient to try you know, all the different CGRPs that have come out over the years, the injectables, the pills, whatever. And she was so excited. Then I also have, I don’t think it’s very common… I have an ENT who also has a dental degree, and he has really helped in finding what I like to call my puzzle pieces. So along the way I got diagnosed with sleep apnea, I needed to have neck surgery like… and so we find these things that have made my life better. But him being both an ENT and having that dental knowledge I went to him because I thought I had a sinus infection, and he said, I hate to tell you this, but you’re having a cluster headache looks like… You gotta be kidding me! I’m already chronic now you’re gonna put cluster. Well ended up it was a bad tooth. I was a tooth on the bottom but the pain was up below my eye, because you never know where the nerves are going to shoot the pain. And he’s the one that found that, my ENT. So the two of them, and they know each other, and they communicate with each other, they… Like I said, I’ve created a team of doctors, and they listened to me, and will try things or say: “Yeah, we’re not doing that.” you know, if I bring them something a little bit out of the ordinary. So that’s so important because I think a lot of doctors don’t listen to the patient. And that’s exhausting being your own advocate.

Joe Coe  11:53

Well, thank you. You’ve shared some really insightful pieces of information that I know the folks that listen to this podcast and read our transcripts will find to be valuable. I appreciate your energy Susan and all that you do to make people feel better. So thank you.

Susan McManus  12:12

Thank you.

Joe Coe  12:14

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

Narrator  12:29

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

Narrator  00:00

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

Marnie Russ  00:09

I have had chronic migraine for 25 years, I’ve had migraine for 30 years, so it has been a long road to get to where I am now.

Joe Coe  00:17

Hello and welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m here with a really special guest, Marnie Russ. She’s a chronic migraine and long COVID patient and more interestingly, the National Kitten College Program Administrator. I had the privilege of hearing Marnie speak at a Headache and Migraine Policy Forum briefing on Capitol Hill about long COVID and headache. So it’s really, really a pleasure to have you on the show today, Marnie, and I look forward to our conversation.

Marnie Russ  00:54

Thank you so much for having me. I’m looking forward to talk about myself for a little while.

Joe Coe  00:59

Let’s jump in. What is the National Kitten College Program? And what do you do there?

01:04

I work at the Animal Welfare League of Arlington in Arlington, Virginia, not far from the Pentagon. We are a high functioning animal shelter that about five years ago started a program. I work with kittens and have historically done a lot of neonatal kitten care. And I knew that our community did really well with handling the kittens in our community. But outside of our borders, kittens were being euthanized every night at 9:30. And shelters have to do that it sounds harsh, but if you get a kitten in that needs, you know, constant attention overnight, you don’t have the resources, the kindest thing to do is to euthanize them. But in my mind, the next kind of thing was to create a program where they had a safe place to go if they fell into that category. So we absolutely started off bare bones. We went from saving 92 kittens a year here in Arlington last year, I think we did over 1,550. So we definitely were addressing the need. And that program exploded so quickly. And so with such force, we decided it might be something that other shelters could try and see if it works in their facilities. A lot of people don’t know but shelters are often given funding based on their live release rates. So if your live release rate is high, you are usually prioritized to get either competitive grants or or county funding or however you get your main stream of fiscal security for the year. People also don’t know that neonatal kittens are the most euthanized animals in shelters. So if a shelter was looking to increase their live release rate, they really have to pay attention to what they do with the neonatal kittens that come in. So it just it came at a good time. People obviously don’t want to euthanize kittens. So having a program was really helpful to the community and to the trappers and to everybody who helps kittens. And it’s just, it’s spiraled. So we started there. Now we go all over the country and teach shelters you know how to save them how to triage them how to create a program on a shoestring budget.

Joe Coe  02:53

When you secure by the Pentagon, I had this vision of like Department of Defense kittens?

03:01

Well, don’t think we haven’t named them after famous Generals, or we have to come up with a lot of creative names for kittens after over 1500.

Joe Coe  03:10

That’s amazing. So it seems like advocacy has been in your heart and soul.

03:15

Yes, absolutely. Prior to this, I was a lobbyist, I started out lobbying for international aerospace at a very young age. And that was amazing because I got to go all over the world. And coming from Montana, where I’m originally from, it was a wonderful opportunity. But I really wanted to get back to Montana. So I created my own little firm, I guess in 2004. So quite a while ago, 19 years ago, where I just focused on Montana nonprofits and getting money back to nonprofits in Montana. And that was amazing. And then as the government slowly screeched to a halt and weren’t passing a lot of bills didn’t make sense for me to continue to work for people that that don’t have any return on their investment. So I switched to kittens.

Joe Coe  03:57

Then I met you through the Headache and Migraine Policy Forum talking about chronic migraine and lung COVID Headache. What brought you to speak there?

Marnie Russ  04:06

One of my very best friends is the ED of that program. And you know, she and I in our 20s lived together and she knew that I had migraine because she would see me down for you know, a day or two at a time and how sick I would get so she knew I had it. She didn’t realize that I had gotten COVID. I got it in December. So I was a I was a holdout. I honestly felt like I was invincible, but I got it in December and it changed my headaches. So we were just talking about it through our friendship and how you know how we do and she was like, “Would you be interested in doing this? We need somebody to do this and you’re a perfect fit.” And I always would support her when she was doing her Headache on the Hill and stuff. I would take folks to the Montana offices and help with that, but I never really thought about getting involved at the level that I was last week and I really got a lot out of it. You know, like I really I thank her for that. opportunity because I learned quite a bit. And I learned that in a lot of ways, I’m different from migraine sufferers. And a lot of ways I’m similar in which I didn’t realize and I’ve never been in a room where I would be talking about the changes I had to make in my life and all the nodding heads. You know, that was really a first for me, and it felt really good.

Joe Coe  05:19

Who is your friend? Let the people now.

Marnie Russ  05:21

Oh, Lindsey

Joe Coe  05:23

We Love her.

Marnie Russ  05:24

Everybody loves Lindsay, because she’s fantastic. Yes.

Joe Coe  05:28

So part of your story as I was listening and taking notes, and I shared some of those notes with you. I was really touch the your relationship changed. When you develop chronic migraine? Can you share with our audience how your romantic relationships changed when you became chronically ill?

Marnie Russ  05:46

Yeah, so actually, it you know, normally, I don’t tell people initially that I have chronic migraine, and it’s not for, you know, to feel sorry for myself, but I just don’t want to be judged as high maintenance, I don’t want people to think I can’t do things, because I’ve really developed tools to make anything almost possible. It’s just that I have to do it in maybe a different way than other people. Several years ago, I got engaged to somebody who, you know, was not familiar with it. And and, you know, I would be fine. And I would people would not know, and he was no different. I didn’t mention it. But he, you know, I had, I had two weeks of stress that really knocked me down. And he at one point just said, “I didn’t sign up for chronic migraine,” which, you know, nobody signs up for it. I didn’t sign up for it. So you know, I mean, it was a tough lesson to learn. But in the end, if there’s not compassionate at that point, there’s not going to be compassionate other points. And so it turned out to be something that helped me realize what I deserve and what I want. And, and you know, what I need because I if even if I wanted to, and I wanted to my whole life, get rid of my chronic migraine, you know, I can’t. And I can make it work. And I can go through long periods where it’s just day to day management. But emotional stress is a big trigger for me. You know, I’m 49 years old, but I have to be completely alone or with my mother, those are my two choices of care when I get to a point that I can’t autocorrect myself. And, you know, I mean, there are probably people that would love me conditionally and say, you know, this is too much, because I’m not available during that time. And if I’ve previously been available can be a tough pill to swallow.

Joe Coe  07:30

I definitely think a lot of people can relate to that. For a time in my life, I thought I might run for office. And I felt like I was so public about having chronic migraine, or even high episodic migraine that people would be like, can he do that? Is he going to be present?

Marnie Russ  07:49

Yeah, I mean, I would say, you know, now that I’m talking about it, more people know, and I’m posting on my social media just to get awareness. But even my, my closest friends know, my friends who have seen it, because I have other things like, I have a super sensitivity to motion sickness. And I don’t know if that’s tied, in my opinion, I feel like it must be because it’s been my whole life. Even when I was a baby. I’m just super sensitive to it. So I always have to drive. And you know, a lot of people like that I always drive and some people are like, “Can somebody else drive?” I feel like getting the word out there is kind of doing the opposite. Like people understand me more. Mostly, I’ve proven myself. But it’s taken me a long time to get to that point, and never would have told people especially if I’m just starting a job, maybe that is information they need to know, my work performance would never suggest that I’m not anything but fully there. So I usually tell people after I’ve had the ability to prove myself.

Joe Coe  08:43

And that ties in to a phrase that you use that I really liked and resonated with me. You talked about the concept of not having the luxury to fail. What does that mean to you as a professional as someone who is developing this career in lobbying, and now in the nonprofit sector saving kittens? What is the luxury not to fail mean?

Marnie Russ  09:02

Well, it basically means that I have to put something together that fits my lifestyle. And I have not really been employed by anybody other than myself or somebody who gives me almost complete anonymity, since I was working at Cassidy and Associates with Lindsey at our lobbying firm and that was we left there in ’02, I think so it’s been a long time. I can’t do a nine to six when I wake up, I’ll wake up probably three times a week with a migraine and most migraine sufferers know that if you wake up with a migraine, that’s usually too far gone. You know, it’s so much harder to address. So I will get in enough sleep because sleep is also a trigger. And then if I wake up or I have to, like take an hour to get it under control, so I can manage so I can drive so I can function. So that for me is I have to create these jobs that fit me and my migraine, and then I have to do them so well, that they become so important that I can’t, that they won’t go away. Because I, you know, I’m a very independent self supporting woman that I like nice things. So I want to be able to, to support myself. And so at a certain level, and I, in order to do that I have to be, you know, a necessity for the people I work with him for.

Joe Coe  10:18

Then you took all of COVID in December of last year. How did  it change your health?

Marnie Russ  10:23

You know, it was really interesting, because like I said, I hadn’t had COVID. And I honestly thought that I was completely immune to it, because I’d been around so many people, and then whatever that strain was got me and I was down for two weeks. And, you know, I wasn’t totally sick, like to go to the hospital, but I was sicker than I usually am. And usually, any type of illness will give me a migraine and I didn’t get a migraine with this. I had a low grade headache in one part, the back part of my head. And, you know, I wouldn’t, it wasn’t enough, I would take a migraine pill, and that might help a little, but then I would take ibuprofen, and it would go away. And I was thinking that’s so strange, because in the past, people have said to me that if you have a migraine, you need to take your migraine pill and treat every headache as if it is a migraine because you don’t get regular headaches, your body only gets migraines. And of course, early on, I would hoard my medicine because I’d be like, I’ll just take ibuprofen, see if I can get rid of it. And then and then if I get rid of it, I save one of the pills that I would have taken. So that had been my mantra until I reached out to this one neurologist at one point that I had that said, you need to take a migraine pill immediately because you are always getting migraines. So that was great advice. But then long COVID totally changed that protocol in my life. You know, because the migraine pills weren’t really doing anything, and ibuprofen would just get rid of it. It’s hard to go around with a low grade headache all the time. Because I’m used to going around with you know, a migraine for the night, get rid of it. That for me was an interesting way to be like how many I would have to take acetaminophen three to four times a day to manage this low grade migraine. And even if I hadn’t taken it, it would have been a low grade migraine, I could have done stuff. I do lose my words a lot more and for being a public speaker. That’s not ideal. So yeah, and my number of migraines has gone down significantly, which would seem wonderful. But my migraine and I have a relationship. We’re copacetic, we know how each other works. And I don’t understand what this one means. So I’m learning as I go.

Joe Coe  12:27

Sounds that way. And we’re all learning the impact of long COVID and COVID and headache. For me, it was interesting, a lot of people that I know that got the vaccine would develop a headache, and I didn’t. And I was shocked because like you I was like I’m gonna get a headache or a migraine from this and I didn’t, which was interesting.

Marnie Russ  12:48

With the vaccines, I always got a migraine. I just Yeah, which was fine, because I would just take my pill right after I got it before the migraine came on. And after the first one. I learned that one. But yeah, that is I mean, it’s just it’s so funny that we all can have the same thing. And our triggers are so different. Our responses are so different. What works for one doesn’t work for the other. It’s more so differently in people. And that’s sort of one of the things I was taking to heart when we’re having those conversations leading up to the seminar last week. And then during the panel.

Joe Coe  13:19

During the briefing that you participated in, you talked about the difference in how your headache is now vers it was before COVID, and some of the fear that you have an uncertainty, can you explain to the audience what that fear and uncertainty is?

Marnie Russ  13:37

Yeah, the biggest thing about it is just not knowing. I did not anticipate that I would have a change in my headaches at this point in my life at 49. And I have had chronic migraine for 25 years, I’ve had migraine for 30. So it has been a long road to get to where I am now. And so I understand, like, I know that if I am super stressed at work for something that I can’t handle, I’m gonna get a migraine. I don’t understand this because it’s usually always there. And it’s changing what my migraine looks like to me. And I don’t know what it’s going to be like, you know, if, if this long COVID for me is just a temporary stretch, then when my migraine comes back, am I going to have to relearn my life, you know, it’s that much of a partner in your life. I cannot if my migraine says I can’t do something, I can’t do something. And I’ve been so lucky to have amazing people in my life. I you know, I thought about that during our conversation. And ironically, one thing that I didn’t realize until last week, was that the tendency for people who suffer from this to also have depression and anxiety and of course that makes sense. Of course it does. I’ve never thought of it. It’s not my experience, you know, maybe should have been I’ve been so fortunate. You know, my mom, if I have you know, she just knows that I’ll be like she doesn’t hear it from me like it so certain time or something she’s like, “Do you have a migraine,” you know, and, you know, I have some friends that are like that get it. And, you know, you know, if you know my future, those are the people I have to surround myself with. And it can’t be, you know, you cancel our plans. And, you know, this, you know, it’s, you know, I never want to cancel plans. I’m a super social person. And, you know, I got a lot of sympathy for the folks that struggled. Your your migraines are bad enough, but then to have anxiety and depression on top of that, it’s crippling, and I am very lucky that I haven’t had that. And I don’t know, you know, what if what if this change in headache brings across things like that, that I that I could change my life for again?

Joe Coe  15:40

Sounds like you will confront it head on like this podcast. I wanted to let the audience also know that one of your panelists, Dr. Robbins, was on a previous episode of Talking Head Pain talking about some of the research and data around headache and COVID and some of the connectedness so folks go back and look, there’s a quick interview with Dr. Robbins, it’s about 5 or 10 minutes, we were at one of the American Headache Society meetings. So I was glad that he was on the panel with you because he’s a super bright guy who shared some really, really good information. Is there anything that I didn’t ask that you would want to cover today?

Marnie Russ  16:21

One thing that I got feedback on after that panel was just how people found it interesting. And I didn’t find that I didn’t find it super interesting, because it’s been my life. But my migraine has made it so that I handle and react to things differently than most people. And it is mostly because I know what to trigger. And since emotional instability is for me a trigger for migraine, I have to look at something that other people might get upset about. And if I can’t fix it, I can’t put my thoughts and energy into it. Because it’s a risk. So we I used at the panel, I use the idea of a of an election, like often elections, don’t go your way. And people get really upset, and understandably so it can be scary, but I can’t do anything about it. And I have to move on, I have to do everything I can up to that and feel good about what I did. But when bad things happen, I think I move on faster than others. And it may come across as maybe callous or uncaring. But for me, it’s a coping mechanism. And it is something that I’ve honed to the point where I see something I have to either realize in that instant, is this something that is worth the stress or not, can I impact it? Because obviously everything is worth the stress if you’re passionate about it. But can I or can I not impact it? And that probably is credited to my job. You know, I have the neonatal kittens have a 40% mortality rate. So we lose a lot of them, but they’re better off for having us available to them. And their stories were written and we can save some we can’t save them all, but we can try. So I think because I’m able to compartmentalize these things, I’m able to have a job like I do. And that is something that I guess migraine did for me, How long did it take you to get to that point of being able to say, “This is going to make me not well, I can’t process it this way?”  You know, I think it was over time. I think I probably started doing it in my 30s but my 30s or when my migraines really started to ramp up. So as they got worse and I autocorrected it was something that I did without knowing. I didn’t realize I was doing it. I would have people say like my twin brother, he was fostering a kitten, kitten passed away. I came to help him and to take care of the kitten and everything and he’s almost in tears in the bathroom. And I’m just you know, taking the kitten and you know, doing what I need to do. And he just looked at me and he goes,  “You have a cold dead heart.” Which, you know, we’re twins we have the complete same upbringing.  We, you would think, would handle things very similarly. But, you know, I can’t be upset when they die because or else I couldn’t do my job. And, you know, he it was something that he did that one time and will never do again probably because of what happened. But him for him. He was you know, he just didn’t understand how I wasn’t crying. I wasn’t. You know, of course I didn’t want it to happen. But that kitten was gone. There was nothing I could do. So probably in my 30s about 10 years after I started getting my migraines did I really have to realize how my reactions impacted my health.

Joe Coe  19:30

Sure there’s a whole other podcast about twins and the one with the cold heart and the one with the warm heart and what you did to him growing up to make him think you have a cold. We want the twin side.

Marnie Russ  19:45

Yes. Well you don’t trust me. He would probably be mad that I told him that he got so upset. But yeah,

Joe Coe  19:52

Well thank you so much for A, the work that you do with kittens. I am a big cat person and Jasper stayed sleeping upstairs normally comes on to say hi.

Marnie Russ  20:07

You saw Skeeter came.

Joe Coe  20:09

I did. Jasper’s chilling upstairs. I heard some noise up there. So him and his sister are probably fighting but he’s up there and that’s really important work and then your advocacy that you’re doing with migraine, headache, and COVID super important so thank you for your energy. Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please give it an honest five star rating and subscribe this you never miss another one. I’m Joe Coe and I will see you next time.

Narrator  20:42

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

Narrator  00:00

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

Dr. Wayne Anderson  00:10

We might think of being in a medical clinic or a hospital, ICU, operating room. But you know what if we’re going to fight for medicine and fight for our patients that includes Congress.

Joe Coe  00:22

Hello, and welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m joined today with Dr. Wayne Anderson. He’s a neurologist with subspecialty certification in headache and pain medicine. We’re going to talk about advocacy, his life passion in neurology, and what the patient community needs to know about the good work that physicians are doing on behalf of us to increase our access to treatments and procedures that help migraine patients feel better. How are you today, Dr. Anderson?

Dr. Wayne Anderson  01:02

I’m doing fine. Thank you.

Joe Coe  01:04

So let’s just jump right in. I noticed that in your bio, and in speaking with you before the interview that you are very involved with Neurology on the Hill, and many of us in the headache community are familiar with Headache on the Hill. What is Neurology on the Hill, and how does it complement something like Headache on the Hill?

Dr. Wayne Anderson  01:22

Neurology on the Hill is very similar to Headache on the Hill, but it looks more at other neurologic topics and not just one particular disease entity. In fact, Neurology on the Hill was a model for the eventual development of Headache on the Hill. Neurology on the Hill is when a group of neurologists go to Capitol Hill and visit with our legislators and try to provide information that we think will be helpful for the field of neurology, primarily for patients.

Joe Coe  01:50

And what’s the issues that Neurology on the Hill has advocated for in the past?

Dr. Wayne Anderson  01:55

There are several issues and they tend to change each year. It depends on what is going on in the community. For example, one of the major issues recently has been step edits or prior authorization processes. And sometimes we find that there might be a treatment that we would feel is appropriate for a patient. But that treatment needs to be used only after other treatments might fail. We understand that there is a cost issue and that there are maybe older treatments and maybe less costly treatments that reasonably can be tried first, but what we would like to do is we would like to be able to maybe have fewer steps. We can try one treatment. And maybe if that treatment is not acceptable for a patient because of side effects or contraindications, we then can go to the treatment that we feel would be the most appropriate. So it is a sort of a work in progress trying to reduce our step edits and obtain the best treatments for our patients. But within the scope of what we are able to do, recognizing that it is a very complex situation.

Joe Coe  02:56

For those that aren’t familiar, we all probably have experienced what Dr. Anderson is talking about. It’s called Step Therapy and/or Fail First Hurts, where you’re forced to fail on a treatment before the one that your prescriber wants you to be on can be covered by insurance. What do you think Dr. Anderson that does the patients in terms of their treatment journey?

Dr. Wayne Anderson  03:18

So it is a problem for patients. And it does bother the neurologists who are treating these patients because it has a bit of a setup potentially for failure. If a person were to try three or four or five treatments in a row, and we had the sneaky suspicion that they weren’t going to work, we understand that there may be a treatment coming up that might be of benefit. But it is certainly disheartening to the patient, because by the time they’ve gone through one or two or more treatments that didn’t work, their expectation and hope for successful treatment is diminishing with subsequent trials. That’s one of the reasons that we really are looking towards reducing the number of steps if we can and I think that there is a strong scientific basis for this.

Joe Coe  04:04

I know as a patient who’s experienced that therapy, it can be really demoralizing, those trial periods, having to cycle through medications, that likely won’t work, but it’s part of the system and we all have to do it. Fortunately, I had an neurologists like you who was pretty savvy and helped me understand this is what’s going to happen. And here’s the process. There was another issue that you mentioned, that is another critical area of access, and that’s prior authorizations. Can you explain to our audience what a prior authorization is and how that impacts you as a physician?

Dr. Wayne Anderson  04:41

A prior authorization is perhaps somewhat of a misnomer, because it doesn’t really describe the situation adequately. If a physician wishes to prescribe a certain prescription medication or maybe obtain an MRI for example of some part of the body, we would give an authorization for that to occur by virtue of our prescription. So if you think of receiving a prescription in a doctor’s office, that prescription is the doctor’s authorization to do whatever the prescription says. So the word authorization is an unusual and perhaps unfortunate word in that. What the prior authorization is, is that in various health plans, there is a requirement to request that the health plan approve the thing that the physician had technically authorized via the prescription. So before something could be done, let’s say that MRI of some body part there would need to be somebody at the insurance company who would authorize that, in addition to the physician having authorized it on the original prescription. The word prior is kind of odd, because it just means that it needs to be done before the study would be paid for as one of the insurance benefits.

Joe Coe  05:56

Are the people in the insurance companies that are making these decisions, are they specialists who deal with the issue that the provider is prescribing the treatment or study?

Dr. Wayne Anderson  06:07

They can be, and sometimes they are not. I think that does depend on the company. And it depends on the location. In general, I do find that the people who are performing the prior authorization process on behalf of the insurance company are physicians, and in most cases, they are in an appropriate specialty to understand what I am ordering. But I do understand that that is not necessarily a uniform experience, I might actually be lucky in that situation.

Joe Coe  06:37

You’re the provider, you have the relationship with a patient, why are they getting in the exam room with you and saying that what you ordered is approved or not?

Dr. Wayne Anderson  06:47

There are a few answers to that. And of course, the one that people always want to run to is money. And and I think that that’s fair, to an extent. Not everything that we do as a physician is always necessary. And sometimes we do things that we really wouldn’t have had to do if we had maybe approached the situation differently. And the insurance companies feel that they wouldn’t necessarily wish to pay for something that they didn’t think was absolutely necessary. The problem there is that ultimately, I have to believe that when physicians are ordering something we do you think it is necessary. And I think that’s where the conflict comes in.

Joe Coe  07:29

Are you saying that there is reform to this process and things that are going to make it easier for both providers and patients to get the life saving or changing treatments that are needed?

Dr. Wayne Anderson  07:39

Certainly we are hopeful for that. I think it is a partnership, it has to look at all parties involved, all players involved, because there are frankly vested interests on all sides. And I think that it needs to be respected and understood, or we won’t be able to necessarily move forward. One of the things that we do in our advocacy work is to try to help this situation. And if we go back to the idea of step edits, for example, one of the things is let’s just say there are, I don’t know, two things you have to try before the treatment that I would prefer to be used is used. So what if the first one is contra indicated, because the person’s already allergic to that medication or some ingredients in the medication, and the second one has a side effect, it’s going to make some other medical condition worse? Well, I think that if we can explain this, then we should be able to theoretically skip right to the third step because the other two steps would be considered either unsafe, at best, or not very useful. So if we have three treatments in a row, for example, and we want to use the third treatment and the patient’s allergic to the first treatment, and the second one might have a side effect that would make some other condition that the person has worse than I think we should be able to go right to the third treatment. And one of the advocacy issues is to try to allow that to happen. We have seen a sort of recognition of general cooperation because in the headache world, for example, there are guidelines as to when we move to the newer headache medications, the CGRP medications that are relatively new. And even those guidelines do indicate that it is reasonable to try in many cases, some of the older medications that are tried and true before moving to them. So there is hopefully, this idea where we can get to the medication that is best for the patient, but sooner than before and with a better understanding and appreciation for the idea of working within the constraints of a particular system and methodology.

Joe Coe  09:45

And when you went to medical school, did you think that you are going to get so involved in policy?

Dr. Wayne Anderson  09:50

No, I think when I went to medical school, I was idealistic as I think most students in medical school are and we were going to, so to speak, make the world a better place in terms of healthcare. Well, it turns out that if that is what our idealism is, or was at the time, then advocacy for patients is a natural extension of that. We might think of being in a medical clinic or a hospital, ICU, operating room. But you know what, if we’re going to fight for medicine and fight for our patients, that includes Congress.

Joe Coe  10:27

I agree. Last question. What are you most excited about in the field of neurology?

Dr. Wayne Anderson  10:33

There are so many things to be excited about in neurology, it’s really hard to come up with one. But I think if there if there is one thing, it is the idea that we are learning more and more and more about the brain itself. We always talk about how every time we discover something new with the brain, then there’s even more we didn’t know. And I think this is really important for patients. We’re beginning to see things that are subjectively reported, that now may have objective findings behind them. It is certainly no stranger to a person, let’s just say a person with migraine headache. It’s no stranger to that person, anybody listening to this right now, that it’s been called just a headache. And migraine is a primarily genetic neurologic disorder with multiple phases, and multiple symptoms. And not every person with a disease of migraine even gets a headache. But when you take a look at the headache, and you take a look at all of the rest of it, it’s more than just a headache. And we didn’t really have any way objectively to show this. People can also have other conditions that really don’t have objective findings, look at concussion to an extent. It is primarily what people say it is because we know that the CT scan and the standard MRI are going to be normal in a concussion. So how do we know that these subjective complaints continue and become either a post concussion syndrome or a lifelong migraine disorder? Well, there is emerging imaging technology, and of one of many things to be excited about in neurology. And these very high definition MRIs with special additional sequences can show things that are associated with the after effects of a concussion, in many cases. These special MRIs, which now are commercially available in many communities, by the way, for patients, also can show changes in the brain that are associated with a lifelong migraine disorder. There can be some changes in the thickness of the cortex, there can be some changes in white matter, there don’t have to be. And some of these changes can be nonspecific, but we are beginning to see objective information for things that were primarily subjective. And perhaps that may not help us necessarily with treatment. But I do think it provides some validity to patients who have been told they only have a headache, or it’s all in your head, or you’re imagining it, because now we’re beginning to see that these things are in fact real. So I think that, to me, is one of the most important things that’s come of late.

Joe Coe  13:08

That’s really, really interesting and important, making the invisible visible, either through advocacy or through science. So it’s, it’s really nice when we get validated in this very factual matter of fact way, because as you said, Dr. Anderson, for many of us for many years, some of us who live with this disease for decades, we didn’t have those advancements. And people were pushed to the side. And you were lucky if you found the right type of doctor to treat it. So really, really, that’s super exciting to hear and appreciate that information. So if you’re a patient, you can get involved in advocacy in all different ways. GHLF has the 50 State Network of patient advocates, you can go to 50statenetwork.org. If you’re a provider, how do providers get involved with advocacy?

Dr. Wayne Anderson  13:58

In many states, and I’m in California, so it is true here, the state neurologic societies, and actually general medical societies in the state have their days at the state Congress level. And also most of the national societies. For example, for me, the American Academy of Neurology, and the American Headache Society, they have their national days in Congress, and so they can be joined and a person can become involved. Sometimes it can be done virtually if people cannot travel, and sometimes it is in person, which can be a bit more convincing and a bit more compelling, and there can be a combination thereof. For example, the recent Headache on the Hill was an in person and virtual event combined.

Joe Coe  14:51

Thank you so much, Dr. Anderson for your time, expertise, and your passion to advocate for patients and take get your colleagues energized and excited about engaging in advocacy. It’s so important.

Dr. Wayne Anderson  15:06

You’re very welcome. I’m happy to be here.

Joe Coe  15:08

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

Narrator  15:23

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

Narrator  00:00

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

Laura Laureta  00:10

Because of my brain injury, I’ve decided to give my pain some purpose and I want to help other people that are living with brain injury and migraine disease by giving them some hope.

Joe Coe  00:23

Hello, and welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. Today, I’m joined by Laura Laureta, the creator of Lit Up My Mind, a website dedicated to sharing resources about traumatic brain injury and migraine. Hey, Laura, welcome to Talking Head Pain. Can you tell me a little bit about yourself?

Laura Laureta  00:49

Hi, my name is Laura Laureta. And I am a survivor of traumatic brain injury. I live with migraine disease. I live in Denver, Colorado, and I created Lit Up My Mind, which is something I’m very passionate about. Because of my brain injury, I’ve decided to give my pain some purpose. And I want to help other people that are living with brain injury and migraine disease by giving them some hope and resources to help themselves live more fully with what they’ve been given too, so.

Joe Coe  01:25

What was it like getting a diagnosis of traumatic brain injury and chronic migraine? Did you get them at the same time? And what was that process?

Laura Laureta  01:34

No, my process was quite a bit different than most people’s with traumatic brain injury. With my diagnosis, I was in a car accident. And initially, I was diagnosed with a concussion. And you know, I was in the hospital for a few days. And then things just kind of progressed. I was let go. And that was that. But I was in incredible pain. And, you know, I started having these horrible headaches. And a lot of the doctors just kind of thought that I was med seeking. And I just kind of got written off by the doctors. And so it was actually four years of going to doctors and kind of being written off before I was seen by somebody new, different provider who was like, “Oh, wow, something really is going on with her.” And they sent me to some different providers and I was reevaluated. And so with that, I was told that I had a brain injury. And it was like with that, with those words, it was I was validated. And some doors started opening.

Joe Coe  02:53

So many people talk about that feeling of getting written off and it taking so long to get a diagnosis or to be seen as having a real condition. How did it feel? And what was different with that provider? So how did it feel once you got that validation? And what did that provider do that was different than the other providers during the four years where you were not being taken seriously?

Laura Laureta  03:18

I think it was the first time I was seen as like an actual individual. I was being heard. And my problems were real. Instead of just feeling like I was lying on you know, for so often I was going into these appointments. And when I left, I felt like I was in the wrong and that, you know, I was a bad person, almost. This person, this doctor, when I saw him, he actually made me feel like not only did I have a purpose for being there, but like I was finally being heard and the knowledge of knowing that I was going to get some help was huge. So that was very validating.

Joe Coe  04:03

And what kept you going? Four years feeling not validated, a lot of people would just stop trying to see doctors. What kept you going and what advice would you give to someone who’s feeling dismissed by the medical system?

Laura Laureta  04:18

Well, I think part of what kept me going was in addition to the head injury that I had some other issues with my body. They finally diagnosed me with some something called Thoracic Outlet Syndrome. And they after the four years they had to do shoulder reconstruction surgery on me and you know, being in severe pain and I was unable to use my right arm, you know I I didn’t really have a choice of being able to just let that go. So that was a big part of it, I let the pain kind of drive me in pursuing that.

Joe Coe  05:05

We ask all of our guests on Talking Head Paim, Laura, to describe their worst migraine attack. What was going through your head, what did you feel? Paint the picture for the people that are listening.

Laura Laureta  05:16

My worst migraine attack actually didn’t seem like a migraine attack, it was just an ordinary day. And then all of a sudden, I was having stroke like symptoms. And I know that I was unable to move one side of my body, and I wasn’t able to talk anymore. It was just terrifying. I lived in my mom’s house at the time, and we had to call 911. And they had to initiate the stroke protocol when the ambulance came out to the house. And it was just terrifying. I was unable to move, I kind of knew what was going on. My head was absolutely killing me. You know, I just I couldn’t talk, I couldn’t move my body. When I got to the hospital, you know, they did the stroke protocol, they ruled out that it wasn’t a stroke. But they also didn’t know what was going on. And so it wasn’t until about 10 hours later, that they figured out that it was a complex migraine or hemiplegic migraine. And so I would end up having probably four or five of those big attacks. Several times, I would end up going to the hospital via ambulance. And now I just I know how to deal with those on my own. And I kind of can feel those coming on. But that was definitely the worst.

Joe Coe  06:17

Yeah. hemiplegic migraine is something a lot of people don’t understand. And it it does look very similar to stroke and a lot of people and a lot of health care providers that aren’t specialized might not recognize it. So I’m glad that you got that diagnosis. And that you know what it is. You created a website called Lit Up My Mind, can you share what Lit Up My Mind is and what inspired you to create that resource?

Laura Laureta  07:08

You know, over those four years that I was struggling, I was desperate to find anything that would help with my headaches, and I didn’t know what was going on. You know, while I had the headache, I was trying to find resources. And it was really difficult. I was Googling things and not a huge amount of stuff was coming up at the time. I mean, this was 11 years ago now. I decided, you know, I had a notebook. And I was just keeping track of all of the websites that I was finding. And I decided a few years ago that there had to be a better way to help people that were in a similar situation, either they had a brain injury, or they had migraine disease, because it is so hard to keep track of all of the information that is out there and just find it. So I decided to create this website where I put all of the best resources that I have found over the years into one convenient spot. And then people can just look in it’s kind of by categories. There’s the Brain Injury stuff, there’s migraine stuff. And then each of those is broken down into categories. And there’s a lot of really good information. And because this is such a new site, I’m still kind of learning how to build a website, actually, but more is going to be coming soon. There’s a lot more, I’m going to be adding wellness and mental health information and so much more. I’m really excited about it. But because of my own headaches, you know, things are being added slowly, so.

Joe Coe  08:52

That’s amazing. And for folks that want to check it out. It’s litupmymind.com. I was really humbled and I smiled when I saw that you had listed Talking Head Pain as one of the resources on the website. What drew you to the podcast before we connected?

Laura Laureta  09:08

I watched you interview Sean, a retired Canadian Vet from the migraine support group Chronic Migraine Awareness Inc. I went on and I watched you talk to him over zoom. And I just really enjoyed it. And so I started listening to the Talking Head Pain podcast and I decided like there’s so many ways to get our resources and there’s so many ways to connect to people. It’s so valuable to not feel alone and migraine can make you feel so isolated and alone. Because I know for myself, you know so much of my time I’m laying in the dark or in a dark room and in the quiet because of my pain. And so I think it’s important that we don’t do that so much. And if it’s something like listening to a podcast, so that we feel connected to other people who have experience with the similar issue, and we can learn from their experience, you know, hearing their stories or hearing tips and tricks that might help. I think it’s incredibly valuable. And the fact that you don’t have to read, that was huge too. You know, having a headache, but being able to just sit there and listen was was a big factor, too.

Joe Coe  10:32

So Laura, I see that you run a virtual game meet up called Brain Busters, that’s a really cool initiative. Why are events like that important? And what have you learned by doing them?

Laura Laureta  10:45

Brain Busters, that’s something I’m really excited about. You know, with COVID, there was so much sadness that came with it, obviously, but so much wonderful, positive things came with Zoom. And so I took that and ran with it. And so Brain Busters was just an idea I had after a birthday celebration with some friends when we played games for my birthday. And I thought, you know, this would be a great thing to do for brain injury people, because for myself, I’m only allowed six visits with speech therapy a year. And I saw that the games that we played, have a lot of the same skills that we could build on, and practice while we played. And then add to that the community aspect. And so many people are alone, not just because of the COVID aspect right now. But in their illness or with brain injury, it’s a very isolating thing between transportation issues, because so many people with brain injury can’t drive or being limited because of their injuries. So I thought, this would be a wonderful opportunity for people to start to meet each other and have a little bit of fun. And I really, truly believe that if you can laugh a little, it will help your pain, like just having an escape just a few few minutes a day, just having that is so important. So I decided to just try that out. And you know, it’s been a big hit. We have someone from Canada in the group, we have people from all over different states. We have the core group from Colorado, and then we have people from all over and people are really responding well to it.

Joe Coe  12:44

Amazing. We’ve dabbled in some games at GHLF, and one of our organizations called Creaky Joints. We did a bingo event, which was really fun. And actually you talked about laughing and not taking life too seriously. And having fun. Our president and co founder was the bingo caller. And he dressed up as Elvis and that was quite the exciting moment. And everyone loved it. We host something called Creaky Kitchen that people can find where it’s a person in the chronic disease community, talking about a recipe or what food has meant to them or like tradition around food and the connection to chronic disease and food and just it’s a really fun way. And both of those programs came about like similarily,  because of the pandemic we wanted to make people feel not as disconnected, creaky kitchen has been going on strong. So appreciate that you do that. Sounds like an amazing group. Have you been able to with all of this advocacy with all the work that you do? Have you found the right treatments for migraine? If you have or if you haven’t, what are some of the challenges? And what does it feel like when you do find something that works?

Laura Laureta  14:01

I think right now I’m finally on a pretty good treatment regimen. I think the biggest thing that is helping me is the actual stuff that’s not given to me by doctors. Throughout the day, I have sunglasses that I wear indoors, and I use ice pack hats. I do a lot of you know I’m, I mean quiet quite a bit. I’ll use earplugs when I go out sometimes because I enjoy doing things with friends. But you know, I kind of have to have a little migraine kit with me. I have some of those ginger candies and stuff to help with the nausea that’ll come up out of the blue and that kind of stuff. So it’s those little things that actually help and I use one of the devices to help kind of take it down a little throughout the day and then And, you know, I do use several of the prescription medications daily. And then I use one of the monthly medications. So I feel like it’s taken a long time, I’ve tried so many different types of things to make different regimens. But this is finally knock on wood, something that is working for me right now.

Joe Coe  15:24

So important that you acknowledge that it’s, like multimodal and multifaceted when we’re looking at how we tackle these really hard diseases like migraine, to make sure that we’re not settling. So it’s amazing that you’ve been able to find both pharmacological and non pharmacological ways to manage and I hope your migraine bag and kit is cute, because it’s important to have fun with these things. And I was talking with another person, on Talking Head Pain, and like, I have my migraine bag, I made sure I picked one that I really like, because when I’m feeling from it, I need to get medication from it or something, I want to say, Oh, this is nice. And it’s a nice moment. I like that. For people that don’t live with migraine or chronic disease, what do you think they need to know, to make the world better for people like us?

Laura Laureta  16:26

You know, I think it’s important for people that don’t live with chronic health conditions to really listen to those that do. And to just take the time to validate the person. I think so much can happen just by simply validating, but they are going through a tough time. And that can be huge. And, and just some subtle changes. You know, sometimes when I’m out to eat with friends, I’ll ask the server if they could turn down the volume of the music in the restaurant. And if I tell them why they’re so generous, and they will do anything they can to try and lower that music. And, you know, not very many people have a problem with that. But it’s just I think people are genuinely willing to make accommodations for us, they you just need to know that you need those. So I think we need to ask for what we need and I hope that other people will just be willing to listen.

Joe Coe  17:38

I really appreciate your time and energy Laura and all that You’re doing for the community. Thank you so much for joining me today on Talking Head Pain.

Laura Laureta  17:47

Well thank you for having me. I appreciate it.

Joe Coe  17:50

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

Narrator  18:05

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

Narrator  00:00

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

Joe Coe  00:08

Hello, and welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m here at Headache on the Hill, I am getting to connect with Natalie Copeland, who is from Vermont, and this is her first time at Headache on the Hill and engaging in advocacy. How are you doing today, Natalie?

Natalie Copeland  00:32

I’m doing great. Thanks for having me.

Joe Coe  00:33

So can you tell me a little bit why it’s important for you ,from Vermont, being the first time here to share your migraine story and engage in Headache on the Hill?

Natalie Copeland  00:43

I think there’s a lot of misconceptions about migraines. It takes a lot to try to get care for migraines. So it’s important to raise awareness and give back to a community that I’ve benefited from a lot over the years.

Joe Coe  00:54

And why is this personal for you?

Natalie Copeland  00:56

I’ve had migraines and headaches for over half my life. Starting when I was in middle school, they became chronic. So more than half of the days of the month when I was in high school. So trying to be in school, graduate college and work through all of that has been a challenge.

Joe Coe  01:10

And what do you want the lawmakers that you’re going to meet with tomorrow to know?

Natalie Copeland  01:16

It’s definitely more than a headache. It affects how I function on every single level. It affects how I am able to think, it affects cognitive functioning, being able to speak, being able to think clearly and even they can be triggered by things around you. So you know, scented products and lights and everything. It’s not just something that you experience with, with pain, that it is something that you think about constantly and trying to manage.

Joe Coe  01:42

And that’s so important. And I know that they’ll be receptive to our message and look forward to the great work that you’re going to do. Thank you. I’m here today with Dr. Nahas, who is an amazing neurologist and advocate who is no stranger to Headache on the Hill. How are you doing today?

Dr. Stephanie Nahas  01:59

I’m doing great. Thanks for having me.

Joe Coe  02:00

I’m so excited to be able to talk to you. Can you explain to me as a neurologist, why it’s important to attend events like this?

Dr. Stephanie Nahas  02:07

There are clearly a lot of reasons that advocacy is important. For this particular topic of headache, and in the field of neurology, we need to raise more awareness in this primary field that is supposed to be really studying the brain and taking care of headache disorders. Now on the flip side of it, most of this is done in primary care and not necessarily in neurology, and neurologists often forget that this is really our wheelhouse. So any way that we can raise awareness and bring credibility to the field, a field, which is, by the way, often forgotten and stigmatized professionally, not just personally and socially out out in the public. So these are just really scratching the surface of why it’s so important for us to be here.

Joe Coe  02:48

And we’re going to be speaking with some of our elected leaders and officials this week. What are some of the takeaways that you want them to hear from us?

Dr. Stephanie Nahas  02:56

First and foremost, I think they also need to be aware of just how big a problem this is. People think of headache as something trivial, that you can take something simple for and move on. But in reality, we know that for a lot of people, that is just not the case. Particularly with migraine, it affects up to a quarter of households in America. When people hear that statistic, they’re kind of floored by it, because they didn’t realize how common it is. And they also don’t realize that it’s more than just a headache. There are so many other symptoms that occur during the attacks that can cause incapacity even more than the pain does. And furthermore, it’s not just about the attacks, it’s about living with this problem, living with this disease that can strike at any time, and how costly it can be to society.

Joe Coe  03:41

I so  agree and what do you want them to take away from our meetings?

Dr. Stephanie Nahas  03:46

I want them to take away that headache is serious. It needs attention, and it needs to be fixed.

Joe Coe  03:52

Great. Thank you so much for your time and all that you do for patients, I really appreciate it.

Dr. Stephanie Nahas  03:57

Sure. Thank you.

Joe Coe  04:00

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

Narrator  04:15

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

Narrator  00:00

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

Kelsey Feng  00:10

Disability is very much a hidden thing. It’s a taboo topic. It’s not something that we want to be seen as. Like, it seems something that seems like lesser than. That’s something that I want to change. Like it shouldn’t be like viewed as a bad thing.

Joe Coe  00:28

Hello, and welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m really excited. I’m here with Kelsey Feng, who is an amazing migraine advocate who you may know on social media as Kelsey’s Migraine. We’re gonna have a really fun discussion. How are you doing today, Kelsey?

Kelsey Feng  00:54

I’m good. Surprisingly, no attack yet. All the fingers crossed.

Joe Coe  01:00

We’re going to knock on wood, and we’re going to not have an attack today. I  feel it for you. I just start out asking all of our guests, what is their worst migraine experience? Can you sum that up in like three sentences?

01:14

I struggle with this one because I feel like there’s always one that tops the other one, I think I’m gonna go with the latest one I had, it was about end of December into January about like two weeks, the status attack, I don’t typically get them too often. And I think that constant head pain just kind of made me really out of it. I didn’t realize how out of it I was until I ended up going to urgent care. And once they like gave me their mix of meds, I was able to like, clear my head, I realized just how out of it I had been for the two weeks because I was like, “Oh, this is what normal feels like,” like, I forgot what normal felt like until I was brought back to it and was just like, amazed.

Joe Coe  02:04

I know that experience when you when that veil lifts, and you feel that lightness that you’re like, “This is how you’re supposed to feel.”

02:12

Yeah, I didn’t even realize that I wasn’t in it until I like was able to get out of it. And then was like, oh, that’s what baseline is like, I just was completely in that migraine pain, like, phase that I forgot what that was. And I think that when I was brought back  to like, I guess, reality. I felt so much better, but also was a little concerned about what happened in the last two weeks. Yeah, I work full time. So I was like, I don’t know how the emails have been going out. I don’t know how I’ve been responding to people the last two weeks. So hopefully it wasn’t weird. Hopefully it made sense.

Joe Coe  02:54

Don’t look back, just that happened. And we’re just gonna go forward, we’re not gonna look back at those emails. And if you didn’t hear from people by now, it’s fine. Right. So I want to switch gears a little bit. I heard you talk before and I followed you on social media. Can you talk about how you talk about pain and chronic disease in the Asian community? Has that been something that you have struggled with? And do you see any lessons that might help others that are listening?

03:24

I think so in the Asian community, or I want to say East Asian communities specifically, talk more in that space. It’s not talked about, like pain is one of those things that we, we hide, like, I don’t even express it that much. Just so I’m so used to hiding the pain. And like, you look like you’re perfectly normal, nothing’s going on with you. And that just like disability is hidden, and we’re not one of those people who express it. I want to change that. Disability is very much a hidden thing as a taboo topic. It’s not something that we want to be seen as, like, it seems something that seems like lesser than, that’s something that I want to change. Like, it shouldn’t be like, viewed as a bad thing. It’s something that just happens or like, is daily life, it should be normalized. And I think the community, the Asian communities, it’s heavily stigmatized, especially with older generations. And I can’t speak on behalf of like, if you live in those countries specifically, but at least in the US, it’s not viewed as something that’s Okay. And I think my generation, I’m kind of in between, I’m born in like 96. So I’m like, kind of millennial kind of Gen Z I’m not really sure. I fall like that with this. Trying to bring light to the two I guess how bad it is.

Joe Coe  04:49

Is that one of the reasons why you created Kelsey’s Migraine?

04:52

Yeah, so I it’s actually Kelsey’s Migraine.

Joe Coe  04:57

Kelsey’s with an S. Yeah, actually. I’ve seen you point out “S” before I’m sorry. So for those that are listening, it’s Kelsey’s Migraine.

05:07

Yeah, I, sometimes I hear and sometimes I don’t sound like oh is the S in there? So one of the reasons I guess I decided to make Kesley’s Migraine was because it was not seen in the community like I, when I went on Instagram, when I was looking for support, I only saw white faces for anything disability related. And not that that’s necessarily a bad thing, because there was a lot of great content out there. But I felt like there was nothing representing me, my community and like, how our experiences vary based on that. I think the only thing I saw was true Shruti’s content. So, Chronically Meh. I love our content, like I think it’s fantastic. But she’s also not East Asian. So it’s a little bit different. I based, like I can grab a lot of, you know, there’s generational trauma, there’s a lot of things that she’s been focusing on that differs from migraine that I relate to, but it is different. I’m speaking on because I’m lighter skinned. I obviously I cannot be white passing. But I’m lighter skinned. So there’s a privilege that comes with that as well. That’s different. And I know from her perspective, her varies from mine a little bit, just as we I mean, she’s in Canada, is that, but it varies from me too, because what her traditions are may not necessarily be the same as what the traditions that were passed on to me  are.

Joe Coe  06:33

You’re going to be going to Headache On The Hill. Why is advocating for migraine so important to you?

06:42

I think it started as I wanted to help people. I think I went through, I think it took me eight years, almost a decade to get a migraine diagnosis. And a lot of that range from medical trauma, doctors not knowing what was going on. I saw a doctor like every year prior to migraine becoming chronic for me, I always check mark that like headaches spot. Like what was going on, like, you know, the intake form. And no one brought it up. No eye doctor. No, like any kind of doctor, I saw a primary care doctor said anything about it. So I just kind of thought, all these years, it was just a headache. I didn’t, I thought I had low pain tolerance. And it took for my roommate to point out that it was not in fact normal to not function with a headache, that I knew something else was going on and was like, oh, maybe it’s a migraine. Went from there. But because it took me so long, I didn’t want that to happen to anyone else. I didn’t want them to know that like, you know, family saying the same things like it’s just a headache, like you’re just being dramatic or like just take like over the counter meds, and it’ll be fine. I wanted to also do it from my like family. I have family members who also have migraine who don’t even realize that they have migraine.

Joe Coe  08:08

It’s really important to be that voice. And I’m wondering, as I’m listening to you speak, knowing that Headache On The Hill is going to have one of the most diverse classes of advocates attending this year, why is it important as a person in the BIPOC community, as a person in the LGBTQ plus community to be at these events and to advocate?

Kelsey Feng  08:33

I think it’s important. I mean, the biggest reason I see is showing that this is not like a middle aged white woman disease, despite it being advertised that way. Besides it being represented that way in the media. I wanted to show that like it affects everyone, and it affects everyone. It’s not the same symptoms in everyone. It also affects queer BIPOC communities even more so than white communities, because we have we’re multi marginalized, there are things that impact us more than what you know, just primarily whites cis straight communities I have to deal with, like we, you know, have greater rates of income inequality, so many things. And I can’t pull them off the top of my head. But you know.

Joe Coe  09:28

Yeah, it’s compounding and I it’s really important that we have these conversations and I as you were speaking, I’m thinking about the portrayal of migraine and how we have this podcast that I’m this elder, millennial gay guy that’s doing a podcast with an East Asian. I think your Gen Z actually even be millennial on the cusp. Yeah. Millennial rising. With this diverse different experience, and we’re able to have these really important discussions. And I know that if I didn’t happen upon this work by chance, I wouldn’t be as well managed, as I am today. And I hear, we see research about the impact that our attendees have on disease, we could see adverse childhood events, we could see all this stuff that that really, really determines some health outcomes that we don’t have control over living in a society that’s racist, misogynistic, sexist, all the things that we that we could put out there, homophobic, it doesn’t make us feel better. So I read the research, I’m like, Thank you for validating what many of us know, because we live it. And it’s important that we’re out there.

10:56

Yeah. And there’s even things that I hope to change, like, even within the migraine community and the research that’s being done and like, there are more statistics on black people, indigenous people, even Latinx people than there are actually Asian people. And like, I would like, you know, numerous statistics, to be raised, like, Let’s do, I don’t know how I would do it, but necessarily, but like maybe some of the patient advocacy organizations or nonprofits that help with finding, you know, headache specialists, or anyone who’d be willing to do the research and find newer statistics on it, because a lot of them are like, I want to say, like a decade or two old, like, they’re not anything recent. And I don’t know if the reasons that there are not statistics on Asian American in the studies, because it’s also heavily stigmatized, like disability is heavily stigmatized. I don’t know, if they don’t want, there’s part of it, like not wanting to admit that you have a disability, people not seeing migraine as a disability, or just, in general, like not reaching these communities, because it’s not targeted, like, you have to know which community, where they are and where they live and how to reach them. Like, maybe at least for older generations, like some of them still don’t have access to the internet or know what’s going on out there. And then meanwhile, some of them do and like, just don’t, you know, they need it in their email, sometimes they just need it, they don’t be on social media. The migraine community is within the disability community. And that is its own little hub. Like it doesn’t expand to just like the general populace as much. And the general populace isn’t necessarily accepting of disability at all, like they tend to be like, they have their parking spots or whatever. And they and like, don’t really think there’s so much more than like, a parking spot that they gave, like, two in a lot that they’re, you know, can we more than two disabled people coming to an establishment. So I think that needs to change. And I hope one day that will, I mean, maybe I can be the person that starts it, but.

Joe Coe  13:15

I think you already have. I think so I think, you know, having conversations and consistently pushing on, you know, social media and the platforms that you’ve developed are important. Admittedly, I haven’t thought much about the East Asian community when I think about marginalization in the migraine community. So it’s important to hear that and I know that there are researchers and organizations that listen to this podcast and you know, let’s let’s really hear what Kelsey is saying, I think it’s so important. I look forward to seeing you there.

13:52

Yeah, I’m excited to  meet a lot of you in person as well. We all know each other online, but actually getting to meet face to face will be very cool.

Joe Coe  14:00

Amazing. Well, thank you so much for all that you do. Kelsey, and it’s Kelsey’s Migraine with an S.

Kelsey Feng  14:07

Thank you.

Joe Coe  14:10

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

Narrator  14:24

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

Narrator  00:00

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

Dr. Jono Taves  00:08

A couple months ago, I had a lady that was going to fly out. And she just kept listening the podcast and she was like, “You know what, I actually implemented some things that you said, and I feel like I’m good, so I don’t need to come out.” So we’d like to get paid for what we do. But that’s great, too, that the podcast can have that much of an impact.

Joe Coe  00:23

Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. Today, I’m joined by Dr. Taves. He’s from the Novera Headaches Center. Dr. Taves and his team specializes in physical therapy for people with migraine and headache. He’s also the host of The Headache Doctor Podcast.

Dr. Jono Taves  00:47

Yeah, thanks for having me, Joe. It’s an honor to be here.

Joe Coe  00:50

I’m so excited. I came across you on Tik Tok and Instagram. And then we cross paths via email. So I’m really happy that you’re on Talking Head Pain today. So let’s kick it off. Getting into the nitty gritty about physical therapy, can you talk about the connection that you see or know between the neck and how it may affect migraine?

Dr. Jono Taves  01:12

It’s definitely a good starting point. So a little bit of my story is I obviously went through physical therapy school and at the Mayo Clinic, I started to get exposure to what’s called manual therapy. So in one of your previous podcasts you had on another physical therapist, Sam, and I loved what he had to say. So he mentioned manual therapy, and he talked a lot about the sensitivities that the musculoskeletal system has. So when I say that I’m talking about muscles, tendons, joints, the way our bodies move. So as a physical therapist, what we’re trained in is how to understand diagnose and correct movement problems. So virtually in any setting, whether it’s in the hospital, or outpatient, when you’re working with a knee replacement, we’re trying to get people moving better. So that’s essentially what physical therapists do. So when it comes to treating something like migraine, or someone that has chronic headaches, tension headaches, he had mentioned cervicogenic headache, those those types of presentations, we can find things as far as how the body moves, that are dysfunctional, they’re not moving the way they should. And so when it comes to the neck, we actually our neck is tasked with holding up and mobilizing this 10 to 12 pound head, so about the weight of a bowling ball. And there’s specific joints within the neck that especially high up in the neck, the head sitting on the first bone, the first bone sitting on the second bone that allow us to nod and rotate, they do most of that movements. And so one of the common things we find with lots of types of head and facial pain is that the upper part of the neck, these two joints can be restricted. And so going through the process of like I said, being a manual therapist meaning I using my I use my hands, we’ve found that this treatment approach can be really helpful for people that have head and facial pain. What Sam talked about were a lot of those sensitivities, the hypersensitivity that people have. And so treating this from a from a hands on manual approach has seemed to be really successful. And so I’m excited about that because I know that migraine is just such a debilitating disease, it’s a it’s an issue that so many people suffer with. So having this approach as an alternative as something that can come alongside what our healthcare system is already doing. I get really excited about it.

Joe Coe  03:18

Yeah, that’s amazing. I love that discussion with Sam about the physical therapy, it wasn’t something that I really considered as a migraine patient. And it blew my mind when he mentioned that we might be over stretching our necks. Because that’s like the first thing I do when I feel an attack. I feel really stiff. And I stretch and I’m trying to like work that out. And I’ve been really conscious of that since since that discussion. Really interesting advice.

Dr. Jono Taves  03:46

Yeah, actually, that I agree with completely, because in one of my TikToks, at least one of my most popular ones, I tell people, if you pull your head like this, and you’re sort of, you know, cranking your neck to one side, that’s a very, very commonly prescribed type of stretch. And it’s actually intuitive for people to just pull their head to the side when they feel shoulder tension or neck tension. I actually don’t agree with that especially. Well, I mean, there are situations where that might be a good stretch. For most of our patients, most people that work with us, the the nuances of what’s actually happening in their neck, make this just general stretch to the neck actually something that can increase the amount of tension and stress through the neck. And so we want to get a little bit more specific than that. But I totally agree with what Sam was saying.

Joe Coe  04:32

So for those who can’t, who are not watching the video of this, Dr. Taves is pulling his neck to one side and stretching like you would when you feel tense. Yeah, intuitive, very, very natural feeling. What would be a good way for someone to stretch, I’m a little tense right now Dr. Taves, how should I stretch?

Dr. Jono Taves  04:54

I’m going to start with sort of an overarching principle. Okay, if you’re feeling stress or tension in the moment, there are definitely things we can do. And we’ll get to that. But what I like to talk about is like the pre stress and tension, because movement is so important to our daily lives. And the more we move, so our bodies are intended to move. And like I said, these joints in our neck, they want to move, they want their full range of motion. So oftentimes, we get to the point of having the stress or tension in our neck, because we’re not giving our body the things that that it wants to do. And so finding yourself breaking up your day with regular walks, having an actual exercise routine. I know he talks about that a lot, too, that can be really valuable. And so that can prevent the body from getting into this state of just everything hurts and it’s tight. And it feels like it’s achy. Joe, you sitting there right now, one thing that I tell people to try to do as little as possible is sit so you can tell that I’m standing here. I’m a big believer in standing desks. I feel like, you know, our world is on a computer. Nowadays, it’s digital, most people are working at a computer. And so I think standing desks are a great option for people just to get their their body and their musculoskeletal system working to some extent. And so there you go, and you sit up a little bit straighter, right. And so good posture is a wonderful thing, everyone should consider their posture when they are sitting. Because they know oftentimes, it’s unavoidable. Like, we have to sit right. But what I say is the neck’s posture is the best posture. And so if you’re sitting and you’re slouch, that’s Okay for a period of time, but then I want you to sit up and I want you to bring your shoulders back. The other thing I want you to do is bring your head back. So oftentimes, we see a lot of tension and pain that can be generated from these little tiny muscles in the back of the head called the suboccipital. Suboccipital, meaning they’re just below the occiput, which is the backside of the head. Joe, are you familiar? Like if you push there, is that sensitive on you? That feels alright?

Joe Coe  06:57

Yeah.

Dr. Jono Taves  06:57

Okay, good. How about right there, kind of to the side. For the listeners, if you take your finger, you run it up the side of your neck, just before you hit the base of your skull, there might be a little fleshy part that’s a little sensitive. Oftentimes, people that have had in facial pain, that have migraine will have sensitivity there. And intuitively, they might think that, you know, someone should massage it, they’ll have a spouse, significant other, start to, you know, massage that or put pressure on it. And that’s that suboccipital area. So one thing you can do in sitting or standing or just throughout your day, is just take your head and sort of glide it straight back like it’s your chin is sitting on a shelf, glide it straight back. And in addition to that, maybe even tuck your chin a little bit. So for those of you watching, it looks a little bit like this, it’s kind of awkward, you make a double chin, and then you just talk a little bit. The goal is to feel a bit of a stretch in the back of the neck. And I when I put this on my social media channels, I have people all the time, say like, oh, yeah, that feels like a good stretch. And so that’s just a little tip. As you’re sitting there, Joe, trying to make you more comfortable during our interview. You can try that out.

Joe Coe  08:06

What was interesting was that I definitely felt in the back of my neck. I also felt it in my chest. A little bit like it was opening my chest.

Dr. Jono Taves  08:13

Yeah, yeah, the chest is another area that we want to hit on as far as improving posture, and a lot of people have stress tension through their chest. So any sort of pec stretch throughout the day is also a good thing.

Joe Coe  08:24

So what’s your thoughts on strength training? I know that there’s not a lot of research on strength training, and migraine. I know there’s a lot of research on cardiovascular training and migraine and how it’s beneficial. What do you see in terms of strengthening muscles around different areas? And is there research that you think is going to happen in that field?

Dr. Jono Taves  08:44

There’s a few thoughts I have there. If we’re actually treating a patient and trying to get them back to an exercise program, specifically strength training, there are some foundational things that we want to work on first. And like I said, the, the mobility in the upper part of the neck is one of those things we want to at least evaluate, screen for, and then start treating. We want to bring down the level of tension because if you go into a workout and your body is already in this state of increased stress, depending on the type of exercise or lift that you’re doing, it could be a trigger. And so a lot of people that strength train that have migraine, find strength training, actually as a trigger, and so that can be kind of deflating, because going to the gym is obviously a healthy thing. That’s something we want to do. So on the other end of it, we coach people in how to how to actually lift to some extent but what lifts to watch out for so general principles are the shoulders tend to carry a lot of stress and tension. Now that’s intuitive for for people, I’m sure listening, the the way the shoulders function is in a resting position. You’ve got a few different muscle groups, like this levator scapula, which runs from the top part of your scapula up into the upper part of your neck and the upper trap, which makes up, the upper part of the trapezius runs from the shoulder blade up into the neck as well. And so if you’re carrying shoulder tension, that that tension is anchoring on your neck, and so there’s a level of stress that’s coming from the shoulders, and sort of adding stress to the neck. Now, if you go into the gym, and you do things like shrugs, shrugs might actually be aggravating for someone that has migraine, or has tension through their neck or has tension to their shoulders. And so what we want to do is actually restore proper function resting position of the shoulder so that when you do those exercises, you’re actually getting the benefit of strengthening the muscle without adding tension. And so exercising in a dysfunctional way. When I say that, we’re Joe, do you understand what I mean by that? Definitely. Okay. So exercising in a dysfunctional way can actually be aggravating, exercise is good. And strength training is good, we just need to sort of get the foundational pieces, right. And then the other element is building up a tolerance, so that the body gets used to the type of lifting that you’re doing.

Joe Coe  11:03

That’s so interesting. And I lived through that I was getting triggered whenever I was doing back and trap exercises. And I connected it to migraine, because I’m getting migraine attacks after doing that. And I really worked on functional movements with a trainer and yeah, building up shoulder stability and strength. And that was super helpful. Because it’s good. They tell you like I really like working out but I don’t like getting migraine attacks. So had to realize what worked and what didn’t work. And the trap was definitely an area that aggravated me for a while it doesn’t anymore to your point, once you build up that tolerance.

Dr. Jono Taves  11:42

Yeah, and actually this is, this is kind of a subcategory of this conversation. But I just did a podcast on exercise induced headaches, or exertion headaches. And in that category, a lot of people will have exercise will be a trigger, especially weight training. And part of that is this sort of valsalva maneuver, the pressure that’s increased through their system, Sam talked about this a little bit too, but the sensitivities that people with migraine go through will lead to sort of a hypersensitivity, or the brain perceiving hypersensitivity of like blood vessels within the brain itself. And so that increased pressure that can happen during a lift. So if you find yourself, you know, in the benchpress, and the weights down, and you hold your breath, and you’re pushing up, all of that stress and tension can be triggering for the neck. And for those sensitivities that are already there.

Joe Coe  12:30

Breathing is so important. Yeah, you gotta breathe, I have to remember to breathe and be fluid with the breath while you’re doing the movement. And that’s part of the fun is that mind body connection, and takes me away from all of the crazy stuff that’s happening in the world. What advice would you give to someone who’s nervous about seeing a physical therapist? Because some of us might not really even know what that is.

Dr. Jono Taves  12:56

It’s a really good question. So there’s, there’s an assumption in the question, the assumption is that the physical therapist on your street will know exactly what to do with you. And unfortunately, that’s just, that’s not true. And so physical therapy does not look the same across you know, anyone that has the DPT or the PT behind their name. That’s the unfortunate thing that I am trying to change. And so if someone is pursuing physical therapy, so with what we do, we do this manual therapy, hands on approach with most of our patients, obviously, there’s a lot of other stuff like talking about general exercise, and the importance of movement, in lifestyle, and then specific exercises that can help reduce this amount of tension. But when it comes to manual therapy, or hands on to address some of these issues within the neck, finding a good manual therapist, I mean, a Google search calling the office say hey, does this person treat the neck? You know, that would be a question to ask. And then when you go in to see a physical therapist, it can be a little bit stressful, like it’s natural for that to be there. If you’re going to see a provider and you’re and you and they’re working on your neck, because the neck is sort of this area that oftentimes people think I don’t want them to screw it up, right, a couple things there. The neck is really resilient, the body is very resilient, but your body will also tell you if it’s helpful or hurtful. And so if you leave and you just like men, now I feel awful. That rarely happens in our clinic, and that would be something to listen to. Okay, so that’s a way to evaluate your session. The other thing that that can be kind of supplemental, if you can’t find a good physical therapist is actually finding a massage therapist that can focus on muscle tension through your shoulders, potentially they can do some work on your jaw because we see a lot of jaw issues with patients as well. But I would say a physical therapist that says that they’re competent in treating headaches is going to likely have the ability to help in some extent. When it comes to neck tension, shoulder tension, things like that. And then if you’re just going to a general physical therapist that and you walk in and you say hey, I want you to help with my migraine. And then if you make pass that in, they’re like, Okay, I feel like we can help you because they may not even have competence there, what they might do is provide a just a framework for you to get back into exercise, and more specific stretches for like posture, how to stabilize your neck, things like that. And those can be really helpful. So I don’t want to say like just going to a general physical therapist isn’t warranted because it could be. But as Sam said, as well, in our profession, it’s hard to find physical therapists that are really confident in this area.

Joe Coe  15:27

And I think that was my big hesitation, as a patient in even considering physical therapy as an option, because I didn’t view the ones that I’ve seen as being really competent. And talking to someone like Sam and yourself, I’m like, wow, there’s all this information that’s out there that we can use that can help us just feel better, be more active if we want to be. I think a lot of us do and are sidelined by migraine. Yeah. So it’s really important to know, and I appreciate that you’re taking that on in your industry. Because if it could help people, we should try it.

Dr. Jono Taves  16:07

Yeah, absolutely. I mean, whatever. Whatever it takes to just give people a better quality of life. Yeah, and medication definitely has its role. We like to complement medication come alongside people that obviously it’s like, if medication works great. If something else works great. I mean, people just go through the process of trying to find an answer. And so we probably fall a little bit more into the alternative approach. And I would say that’s just because it’s lesser known, not because we’re doing any quackery, but as as we try to grow and develop and educate physical therapists, I hope that there’s this very prominent presence of physical therapists within the headache, and migraine space, because of all that tension, and the sensitivities that happen in the neck and the shoulders. It’s a natural area for us to be in because of these movement problems we see.

Joe Coe  16:59

Well, you’re definitely all welcome, the competent ones, on Talking Head Pain, there’s a space for you here. Wanted to switch gears a little bit and talk about your social media and your podcasts. So you are super active on Tik Tok, which is like a really interesting space for medical information. There’s a lot of misinformation. There’s a lot of maligning of TikTok, some government agencies ban people from being able to access it. What have you learned by being on Tik Tok? And what are some of the the most popular pieces of content that you produce?

Dr. Jono Taves  17:35

Yeah, TikTok is, I would say, it’s, it’s been a challenge, because it’s gotta be really short. And it’s got to be, at least in my world, kind of high intensity, I have to sort of say, Hey, do you have this problem, and here’s something you can try. And so it’s funny, because people will watch a minute video, and then they want me to, you know, fix all their problems. And well, you know, it’s like, oh, I had 30 seconds, you know, so, but the ones that did really well, and that do really well, are when I am able to sort of communicate in a way where people know that I’m speaking to them, and they think, Oh, this is me. And then what I’ll provide them is with some little solution, or tip or trick, and the reason that the videos do well is because oftentimes, people will try it and be like, Oh, my gosh, I feel that. One of my more popular videos was actually going back to this neck stretch, where you just pull your head to the side, I talked about doing a nerve glide instead. And Joe, if you can, if maybe I can angle the camera here, but you take the palm of your hand, and you put it down and back kind of away from you if your Iron Man and you’re gonna blast off, right. And then what I want you to do is tip your head the opposite direction, and then just depress your shoulder, do you feel any sort of like burning nerves, stretch sensation on your arm, maybe it’s in your elbow, your hand should be open, your fingers should be extended. And then I want you to kind of depress your shoulder until you feel it and then just relax your shoulder and repeat that 10 times or so. What that’s actually doing is stretching a nerve that’s obviously running from your spinal cord all the way down to the tips of your fingers. Now that nerves should glide and move from our shoulder all the way down to our fingertips. And that tension that we’ve been talking about that builds up can easily impact the mobility in that nerve. Whether it’s a pec stretch for posture, this is one of the other beneficial things you can do to take stress off the neck into the shoulder because that nerve tension can build up over time. And so that can be really therapeutic thing to do. And that’s that’s getting that same type of stretch without cranking on your neck and potentially aggravating things that are there.

Joe Coe  19:44

I like that and I did go on your TikTok and try that after we spoke the first time and what’s so interesting is is that the side of my neck that’s tighter I definitely feel it more intense. Yeah. So it is doing something my my right side.

Dr. Jono Taves  20:00

Keep it up, Joe,

Joe Coe  20:01

But you can’t fix me in a minute. Why not? That’s That’s messed up, I need TikTok to solve my problems.

Dr. Jono Taves  20:07

I know that’s, that’s the expectation, but I’m happy to help people. And it is a great platform. I mean, yeah, as far as like, the instability of the platform itself, I get a lot of benefit off of it. So I don’t know what the risk reward is there. Maybe I’m ignorant of the risks on it. But it’s been a great platform for us to get the word out and try to help people. And yeah, if I, if I can help someone in 60 seconds, great, you know, I can go home happy that day.

Joe Coe  20:32

And you’re also the host of The Headache Doctor Podcast, what has been the most interesting episode that you produced?

Dr. Jono Taves  20:40

Yeah, the most interesting episode, we’ve repeated it a few times. And essentially, it’s me talking about the connection between the neck and head and facial pain. So when people come into our practice, we screen and assess for the same things, kind of regardless of the diagnosis that they come in with. Obviously, we take it into consideration what they’ve received going through our healthcare system and a bunch of other information. But one of the things that we commonly see that I believe is overlooked in our health care process is movement of the neck. So if you think of the neck as being a problem, let’s say you have headaches, you have migraine, and you intuitively think my neck seems to be playing a role in this. Well, if you go to your primary care doctor, your neurologist, the imaging that people are getting is is an x ray, it’s a CT scan, it’s an MRI. Now, those are still images. Now, if you think of outside of the MD world, who would you go to for your neck, it’s probably going to be a chiropractor. And a chiropractor is also going to take an x ray well, so there’s different types of chiropractors. So I don’t want to paint with a broad brush. But for the most part, they’re going to look at alignment, which is still looking at a still image. And it’s not necessarily so what’s missing is this understanding of movement and how the neck should move, and especially the nuances in the upper part of the neck. So essentially, what I’m doing in the most listened to podcasts is I’m, I’m connecting this neck problem to head and facial pain. And a lot of people that have that intuition of my neck feels like it needs to be worked on. They like that they love it. It’s like this is something that I have not heard before. And it’s that novelty and the fact that you know, it has been overlooked that people, they love it, they reach out and they say, you know, either how do I find this in an area near me, which is always a hard question to answer, just like we said earlier, because it’s not so prevalent. But to that, you know, we help them just once they understand how their neck can be connected, how to manage that, in some sense. So we can work with people virtually, but we love to work with people in person. But the podcast itself, we actually a couple of months ago, I had a lady that was going to fly out. And she just kept listening the podcast and she was like, You know what, I actually implemented some things that you said, and I feel like I’m good. So I don’t need to come out. So sometimes, it’s, you know, we’d like to get paid for what we do. But that’s great, too, that the podcast can have that much of an impact.

Joe Coe  23:00

You’re gonna put yourself out of business.

Dr. Jono Taves  23:01

I think so. Yeah, I’m sharing too much.

Joe Coe  23:04

I think you should rename that stretch to the Iron Man stretch. Oh, yeah, that cue really helped because now I feel like Iron Man blasting off. I like that.

Dr. Jono Taves  23:14

Yeah, that’s a good idea. Joe.

Joe Coe  23:16

Trademark it on Marvel might have a problem or Disney don’t listen Marvel Disney, I don’t want to get sued Was there anything that I didn’t cover that you wanted our audience to know or hear?

Dr. Jono Taves  23:31

I just actually recorded a podcast on it today. But there’s a lot that can be done as far as self management. And I just don’t, I don’t know if people with migraine and then other you know, any type of head or facial pain, I don’t know if the permission is given or the the knowledge is there to really know what to do. And so that would be my message of I try to empower people when it comes to self care, obviously in person care is great. And we can we can help solve those problems there. But as far as like, feeling hopeless, and like there’s nothing left to do and, and kind of feeling victim to migraine. I would like to sort of add a layer of self management when it comes to the physical aspect and managing tension that I think can really be beneficial.

Joe Coe  24:21

I love that, it’s so important as migraine patients that live with this disease for a long time. I had it for over 20 years, that we provide ourselves every opportunity to feel better. Yeah, that we afford ourselves the ability to seek out different types of treatments and I know many of us have to exhaustion but it’s it’s important to stay open and to realize that the toolkit to use a cliche is vast and that there are so many different ways that we can work towards our health and wellness and it’s great that we have doctors like you, Dr. Taves, that are pushing the boundaries, holding your colleagues accountable and keeping them honest about migraine treatment, which is really important and that you’re sharing this with our audience and also through the work that you do professionally and on social media and in your podcasts. So we appreciate it.

Dr. Jono Taves  25:20

Yeah. And I appreciate you Joe for giving me the opportunity because I’m passionate about what I do and I hope your listeners find it helpful.

Joe Coe  25:26

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

Narrator  25:43

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

Narrator  00:00

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

Alan Kaplan  00:08

I failed over probably up to about 60 medications and devices so far, and I started looking around for alternatives. And I started reading about psychedelics and the possibility you know, them being helpful in treating pain.

Joe Coe  00:22

Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. I’m here today with Alan Kaplan. He’s the founder of a new organization and website called NDPHaware, that stands for New Daily Persistent Headache. It’s a project that started under clusterbusters.org, which is a nonprofit organization that we’ve worked with and been friends with for a very long time. So I’m delighted to connect with Alan to talk about this new initiative and nonprofit organization that is developed. Hi, Alan, how are you today?

Alan Kaplan  01:02

I’m good, Joe, thanks for having me. Appreciate it.

Joe Coe  01:05

My pleasure. So can you tell our audience, they might be familiar with what new daily persistent headache is? Can you explain when you first started to get headache and how that feels? And if that was your worst attack?

Alan Kaplan  01:20

New daily persistent headache, for definition purposes, the way I look at it new, and the way the International Classification looks at it, it’s basically a headache that kind of comes out of nowhere, something you’ve not really had previously, that’s not from a different headache condition. So kind of comes out of nowhere, at least for me, it came out of nowhere. And most people remember the onset or near abouts the onset. For me, it’s around the first or second week of December of 2017. I could celebrate or some other people say crack-aversary of your of your headache. Daily meaning it’s every day, it’s 365. Persistent meeting it’s 24/7 and headache is just one part of the description as far as the symptomology and how it presents. As far headache pain, you get a lot of similar symptoms that people would have a headache diseases like migraine with photophobia, sound problems, so barometric pressure changes, nausea, what else I get? Neck, shoulder pain, brain fog, word finding things like that. As far as what was the worst headache or its experience with this, it’s kind of hard to say cuz I look at it as I’ve had one headache for the past 1,820 some odd days since this thing started. And the only difference really is how the pain levels just kind of bounce around. I could be a 2, 4, 6, 10. And back down the scale all on the same day, as far as pain levels go.

Joe Coe  02:57

How is living with this for the past five years impacted your day to day life?

Alan Kaplan  03:03

Oh, I say somewhat dramatically, affected my work. I was working at the time when I developed us. And I kind of lasted about two years of having it where I finally realized I just can’t function at this level. The level I want to function I with my job and I was getting close to retirement ages anyway. So figured, probably a good time to bow out. It affects your family, how you deal with your family. Affects your friends, the activities you do, you know, I cancel a lot of things. I’m at the point right now, after five years where I don’t make a lot of plans. I have plans in my head, but I don’t necessarily voice them until I know I’m ready to do something. I might plan a trip or might plan to go to a concert and things like that. But, you know, any given moment, I get hit with a spike. And that’s the end of the plan. So it’s it’s, it’s difficult.

Joe Coe  03:54

And is there any understanding for you or others, what happens that one day you don’t have a headache and then the next day you have a headache that lasts for five plus years?

Alan Kaplan  04:06

They don’t know exactly what causes NDPH to have their headache diseases. Mine like I say it came out of nowhere. There a lot of people in the community where it could have been a result of a viral infection, concussive event, stressful event in their life. COVID is coming up lately over the past almost three years since COVID started and that seems to be a potential cause. I know you had Dr. Robbins on and he spoke to that recently. And something we do hear about.

Joe Coe  04:38

The prevalence. You’re a man with this disease. A lot of the people I talk to in the migraine community are woman or woman identified. Is it an equal prevalence in men and women? Does it skew like cluster, more men?

Alan Kaplan  04:54

Well, if you go by looking at the support groups and Facebook groups, it’s like 80% women versus 20% men that are engaged on the support groups. But I think it’s probably closer to 60-40, 50-50. I don’t think anybody is immune from it. We are in the process, one of our goals with NDPH aware as an organization, is research, education, advocacy. And what we have coming up is a formal patient of based survey that’s going to be coming out in the spring that will give us more data, something that’s pretty well lacking with NDPH. As far as I know, there has not been a patient survey out there ever. There was a doctor in Houston, Dr. Evans, did a study a few years ago, which was a more of a chart study, over a 10 year period from his patients, but nothing where the patients themselves are getting the chance to be heard. So when that’s done, we’ll have a lot more information.

Joe Coe  05:58

How did you find the support groups? And did you feel that the social media around it resonated with your experience?

Alan Kaplan  06:06

Yeah, well, you know, Facebook, of course, as a million million groups, and you know, just as search on that, and there was a couple of NDPH support groups, the big, there’s two big ones on Facebook right now that are basically as the go to, for people with NDPH. There’s some overlapping into the chronic migraine groups as well. You know Google, of course, you know, you can find anything you want on Google. And so, but the Facebook, things used to be the most responsive, and it was a good place to start, just understand what was I going through, why do I have this, you know, I didn’t ask for this, you know, it’s not something I would have, you know, put on my wish list for anybody. And, you know, but the support groups, if you get the right people, you can get a better understanding of what the disease is all about, like people asking about medications and things like that happen. You get deeper into, you know, like you said, How’s it affecting your life, you know, was, you know, how do you cope with that, you know, what kind of different strategies are available to help, you know, get some kind of relief.

Joe Coe  07:11

And why did you start a website and organization, NDPHaware.org?

Alan Kaplan  07:17

It’s my third year, I was kind of running out of medications. I’ve gone through pretty much everything that they throw at people with migraine, and other headache diseases. There’s no approved medication for NDPH that the doctor can prescribe. So if you have NDPH take this, that’s not the case. So we’re basically borrowing medications or anybody else, CGRP medications that are new out there these days, and much injectable or IV, or whatever it might be plus all these old standards back from years ago, with the triptans and things like that. I failed over probably up to about 60 medications and devices so far, and I started looking around for alternatives. And I started reading about psychedelics and the possibility of them being helpful with treating pain, chronic pain. And I started going that route. And in February of 21, I had a psychedelic experience, which the next day, my pain levels were dropped by 50%. And I was like, “Oh, this is insane, it’s great. What do I do? How do I do with this information? Who do I talk to?” And I started to Google found other doctors that talked about headache doctors, that talked about psychedelics and pain. And then I started saw the information about Cluster Buster. And I reached out to Bob Wald, and Eileen Brewer, and they were looking for other people with other diseases that may have had positive psychedelic experiences to help treat their pain. And some of the patients from Cluster Busters use psychedelics to help manage their cluster headache, as well. They’ve actually have a pretty robust community around that. Because of that, we got connected and then we just kind of started my advocacy. That was a year ago, June of 21, when I first met up with Bob and Eileen. And then, you know, I went to a conference where they took me to a CHAMP conference that year, and then the August we kicked off NDPHaware. So it’s kind of born out of my experience and gave me a vehicle to launch a way to find research, find scientific data that can help us deal with this disease.

Joe Coe  09:34

Eileen and Bob are great. I consider them friends. And one of the one of the first people I interviewed was from Cluster Busters, Joe McKay, and he talked a bit about his experience with psychedelics and how that has helped. And there seems to be, it’s a really burgeoning area of exploration in many different ways. So it’s really cool that you’re putting your stake in the ground to help move the needle for headache patients.

Alan Kaplan  10:05

I believe. Yeah, I believe it’s, there’s, there’s something there, you know, for pain. There’s a lot of what everybody’s saying is more towards the mental health side of using psychedelics, and there’s some talk. And there’s been more over the past few months about how it relates to chronic pain. And I want to treat it basically, at this point, I’m trying medications here and there. But basically, I don’t have anything in my toolbox that’s prescribed medication that I can use. And, you know, this is kind of what you’re left with, when you’re dealing with a 24/7 pain condition, and you need relief. And if you can find it, like anything else, you go where you find it. And if it helps you use it, regardless of whatever the consequences might be.

Joe Coe  10:50

Just a reminder for our audience to discuss all the medications that you’re taking either prescribed or not prescribed with your healthcare team, so they know what’s going on.

Alan Kaplan  11:02

Which is, which is what I’ve done, this stuff needs to be treated with respect.

Joe Coe  11:05

Definitely. So what has this work taught you?

Alan Kaplan  11:09

Patience, I guess is probably the first thing when this was first getting started. And I first met Bob and Eileen, and it was like, it just seemed like the, you know, the wheels just kind of grinding rather slowly, the gears are grinding very slowly moving forward. And then all of a sudden, once things are in place, things starts ramping up. So by the time I met them until the website got was released in August, this past August, it just seemed like it was taking forever to get things done. But then everybody says this is just a very slow, nonprofit, it’s a very slow process, in general. And so you get patience, you learn that, and can start building up your team and and sort of figure out what to do and how to do it. And very interesting, it’s been an interesting ride so far. And since I’ve kicked off the website, and the organization has been a lot of positive feedback from the community and, and from doctors that I talked to, when I was at the Cluster Busters conference and had a few doctors there and to try to get some help, really, and support. And it’s very rewarding. So you know, the patience is key, and learning how to deal with yourself, you know, and understanding how to manage the new lifestyle that actually we’re going to call it a lifestyle. And no particular one I mean, I would guess would be the more be more apropos for that. But I’m excited. I never did anything with nonprofit, except write some checks for donations here and there. But I think we got we have something going forward here that hopefully, it’s going to pay dividends for the community. And hopefully, can find some relief as we get some solid research into it.

Joe Coe  13:01

Well, I really appreciate that you joined me today and that you gave me your first interview. Oh, thank you. Yes, it’s gonna go down in history of NDPHaware.

Alan Kaplan  13:14

I hope so.

Joe Coe  13:15

You heard on Talking Head Pain first.

Alan Kaplan  13:18

Well, thank you, Joe. I appreciate it.

Joe Coe  13:21

Well, yeah, I really appreciate your work. And it’s important. And, again, what I think is, the big takeaway from the discussion is is that even with diseases where we don’t feel like there’s a lot of innovation or that there’s a lot of options, there are people like Alan who are pushing the boundaries, who are seeking out these physicians to help inform research and education around misunderstood diseases. So we really appreciate that work and look forward to watching me grow.

Alan Kaplan  13:54

Thank you. We’ll have to do a part two.

Joe Coe  13:59

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

Narrator  14:14

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

Narrator  00:00

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

Alicia Wolf  00:09

It does take a mind shift perspective to go from why me into what can I do to make myself happy.

Joe Coe  00:20

Welcome to Talking Head Pain, the podcast that confronts head pain head on. Hi, I’m Joe Coe, Director of Education, Digital Strategy at the Global Healthy Living Foundation and a migraine patient for over 20 years. Today, I’m joined with Alicia Wolf, who is known on Instagram and in the migraine world as the Dizzy Cook. She is the author of two books, “Dizzy Cook: Managing Migraine with More Than 90 Comforting Recipes and Lifestyle Tips,” and “The  Mediterranean Migraine Diet: A Science Based Roadmap To Control Symptoms and Transform Brain Health.”  Please know that food and diet can be sensitive topics and could be triggering for some. We approach this conversation with care and empathy, but wanted to alert our listeners in case this is an issue for you. The conversation that I had with Alicia was so rich that we broke it up into two parts. Elease enjoy part two of our conversation. What is the recipe for life and happiness as the Dizzy Cook?

Alicia Wolf  01:18

I would say just like not giving up. I mean, there were so many times that I just told my husband, I was like, “I don’t think I can get through this.” I mean, I know that they say God never gives you more than you can handle. But this feels like way more than I can handle. And I’ve said that so many times in my life, like I remember getting through chronic vestibular migraine. And then once I got through that I had infertility and how to go through IVF and all of that. So I’ve just felt so many times in my life, like why me? Why why is this happening to me? And I think that it does take a mind shift perspective to go from why me into, “Okay, what can I do to make myself happy despite living with this, what brings me joy?” And when I first got sick, my therapist had me write down all of the things that I found a lot of joy in and to go through that list and to see if there were any opportunities for me to find joy in those. And so one of the things was cooking, I liked working with animals. So I kind of looked into volunteering for different animal shelters or even just like making phone calls. That’s kind of how I got involved with vestibular.org. I, you know, wanted to help other patients. So I was making phone calls for them for a little while, which kept me off screens, which was kind of nice. But the cooking part of it, I always came back to because it was the one thing I could control in my life. And so I knew if I put these things together, and maybe not. Not everyone feels that way, including you now. But I felt like if I put these ingredients together, I could somewhat figure out how things were going to turn out for me at the end of the night versus like you wake up with migraine, you don’t know what kind of day it’s going to be. So at least like cooking brought me some stability in my life. And it was something I really enjoyed. Because at the end of a really hard day of fighting with insurance, like I could sit and just chat with my husband, and over like a really comforting meal or chat with my family. And it was just something that really brought us back together and made me feel like a somewhat normal person. And I think there’s a lot of healing that can be found through food and through even mindfulness that can be found through cooking or baking for some people. And so that’s what I really loved about the whole experience and what I tried to convey with my recipes and everything online.

Joe Coe  04:14

Maybe that’s my struggle with cooking, mindfulness component, because I struggle with that. I don’t like to be mindful.

Alicia Wolf  04:22

You know, what really helps is good music. So I always start with like really good music that I love. And then I always make myself like whatever you can tolerate and no people will tolerate different things, but I always like to start with a good drink. So whether that’s a mocktail, even just kind of putting those ingredients together and making it in a fun glass like it sets the tone to not feel like what you’re cooking is going to be just for eating or consuming. It makes it more of an event or an experience, I guess. So if you can find ways to make it fun, then I think it it becomes more enjoyable.

Joe Coe  05:04

So interesting because I’m the total opposite. When I was in Italy, I was like, I love that you could just go up to a bar, get an espresso, drink it in 30 seconds, and leave. As opposed to like sitting in a cafe shop, relaxing, appreciating the moment. And so I might do that. That’s a good, around the holidays, that seems like something I could try on and see. I’m open to new experiences.

Alicia Wolf  05:29

You’ll have to update me.

Joe Coe  05:33

So I want to just dig a little deeper about your cooking, do you have a favorite recipe or one that means something very special to you?

Alicia Wolf  05:42

Yeah. So actually, a lot of the recipes in my first book, and then some online, I have one online called Lazy Lasagna. There’s one in my first cookbook, that is these chewy ginger cookies, and a celery seed dressing, and these are all recipes from my grandma, Mary, who is 100 years old now. And they were not migraine friendly, because that’s not how she cooks. She’s a lot of like, the store bought ingredients and everything like that. So we had to tweak them a little bit to make them a little more migraine friendly. But they’re some of my favorite recipes, because they remind me of her. And she had six kids and was not a fussy cook. So that’s what I love about those is it just, it just makes me think of family and kind of brings back those memories of like going to her house and eating. And so like things like the celery seed dressing, she used to put like a cup of light sugar in. And instead I’ve replaced that with much less sugar as well as like replace it with honey. And it’s so it has a lot of the same flavors, but not quite as not quite as sugar heavy. So just things like that, that we kind of work together on and I don’t know those just bring me a lot of joy. And again, I think that’s part of the joys of cooking is it can it can bring up those memories inside of you those really good moments. And so like when you’re having a really bad day, it kind of transports you back. It’s like that scene in Ratatouille. I love that movie Ratatouille. I don’t know if you’ve ever seen it. Have you seen it with the that this rat who like loves to cook. And the whole premise behind is that like anyone can cook. And so there’s this scene at the end where the the rat is trying to cook a spectacular meal for this famous food critic. And he ends up serving him ratatouille. And everyone’s like, “Oh, it’s like a peasant meal.” But the food critic, he takes one bite of it. And it like transports him back to when he was he’s like skinned his knee or something like that with his mother. And she made him your hearty bowl of ratatouille. And he like drops his fork because it brings back those memories for him. And I just like such a moment that I love. Because you can tell like, sometimes when people eat those certain foods, like I’m sure if you have one of the pasta dishes you had in Italy, it just brings back those memories for you of like a really fun evening, you know.

Joe Coe  08:34

Cooking and eating. I love eating, the cooking part. But I appreciate the eating and the people that do it. And around the holidays, we talk a lot about how food brings us together and we’re talking with my colleagues about like what traditions we do and you talking about your grandmother made me think of my great grandmother who would make these this dessert on Christmas Eve called struffoli, which is these round honey balls that are kind of fried it’s an a, an Italian southern Italian thing. And my cousin makes them now. I obviously didn’t get passed the recipe because my family. Although, they have given me Thanksgiving as the holiday to do which is like a cooking heavy holiday but I gotta catered. Yeah, I can’t I can’t do that. I just remember once getting a turkey and I was like I’m going to do this and I looked at the turkey and I was like I don’t know what to do here. This is aggressive. I can’t do this.

Alicia Wolf  09:38

To be fair, turkey’s are very hard for a lot of people. That’s why I recommend roast chicken.

Joe Coe  09:44

I would you know what and I like chicken better so maybe something here but it’s so um I so it’s a unifying thing. It’s a comfort thing and you know thinking about traditions and you know you talked about in different ways about Joy and about having power and, and I think of cooking is chemistry and science with passion, which is important. So it’s that control, you have X ingredients, and you are going to make something. And I just haven’t found the right music yet, but we’re gonna we’re gonna try it out. I love music I dance in my kitchen all the time. Not while cookingm but we will shift.

Alicia Wolf  10:29

Yeah, so like, what’s your favorite song like maybe start with that.

Joe Coe  10:33

Depends on the day and I have some really bad music taste that we won’t subject the audience to. Last question and other like deep hitting one. You’ve said you traveled a lot, and you’ve taken cooking classes throughout the world is there an area that you find most attracted to when it comes to cooking and cuisine?

Alicia Wolf  10:55

Oh, gosh, you know, they’re all so different. So where I’ve taken classes, I’ve taken classes in Italy, I’ve taken some classes in Thailand and in Japan, as well, which I mean, their level of cooking is crazy. I’ve taken classes in Dallas. And then both the probably the last ones I did, I think this was actually after I got sick too. We went to bone actually in Burgundy, France and did a little intensive course there. And that was truly amazing because we went from shopping in the market and even like sourcing, just sourcing local ingredients to how to put together these really amazing meals. But they’re all made from very simple ingredients. And that’s what I really loved about a lot of these courses is it’s amazing the flavors that can come from just a few really good quality ingredients. So whether that’s picking up fresh herbs or you know, really taking time to talk with your butcher about what kind of chicken you’re getting, how it was processed, you know, I’m a big fan of using air chilled chicken even more than organic just because of the way it’s processed. And it goes through chambers of air rather than being dunked in water. So it doesn’t absorb that solution, which makes it cook, and, and brown even more beautifully than your normal traditional chicken. So just things like that, that you kind of learn about, you know, even just starting with a really good quality ingredients can make a huge difference in how your meal is going to turn out. So it doesn’t have to be something super complicated with all of these spices, and all of this time and effort, you know, do you start with a good piece of meat or vegetables and just grill them and serve them with you know, lots of fresh herbs and stuff like that they can, they can turn into a really wonderful thing. So I would say that last class was, was probably one of my favorites, I mean that they have some of the best food in the world around Burgundy. And it was not like in other parts of France where it can be super pretentious, but just really really good hearty food. So that’s I’d love to go back there and take you know a longer class there as well.

Joe Coe  13:34

It’s amazing and you are making me again think of Italy, I had was a simple tomato mozzarella salad with basil and olive oil. And it was I’ve had it a million times in my life. And it was just like the mozzarella that they used, the oil, the tomato everything just was like a little bit better. And even the salt, like it was just I said I was having all these pasta dishes and all these different meat and fish and I was in Sicily and in all these different very different types of meals. And that was one of my favorites. Just a basic, very simple tomato mozzarella salad. And you’re right.

Alicia Wolf  14:17

I mean that’s what I always bring back home from my trips are actually salt and vinegar if they have like a certain type of vinegar that I really liked but olive oil too if it’s it’s a place like that like around Italy where you can get really good quality olive oil, you know. That can make such a difference even in your salads. All you need is a drizzle of olive oil and it’s delicious.

Joe Coe  14:40

So I have salt from Sicily, and I just got salt from one of the salt mines in Vienna. So um yeah, so I have Yeah, my Yeah, exactly. And my brother’s like why do you keep buying salt? I’m like I happen to be in places that they produce salt and I’m like, why not? International array of salts. I say it’s because I’m a salty person I need more salt. Well this this was so nice. I’m so glad we got to connect and talk about salt and dancing in the kitchen and vestibular migraine and all the things. I really appreciate all the work and passion that you bring to our community and that you help people find purpose through a creative endeavor such as cooking that sustains and nurtures us.

Alicia Wolf  15:32

Thank you, I appreciate that. That’s a really kind compliment.

Joe Coe  15:35

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

Narrator  15:50

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

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