“Talking Head Pain” Episodes
Check out episodes of “Talking Head Pain” with Joe Coe below and be sure to subscribe for access to future episodes.
This week on Talking Head Pain, Joe talks with Tom Dabertin, Executive Director and CEO of the National Headache Foundation (NHF). Tom uses his experience of having migraine since his teens to inform the work he does with NHF. Join Joe and Tom as they talk about the lack of headache specialists, being a father while dealing with migraine, and Tom’s role as the Chairman of an annual Pierogi Festival.
Making a difference: A conversation with the National Headache Foundation
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:09
Welcome to Talking Head Pain, the podcast that confronts head pain, head on. I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation. I’ve been a migraine patient since I was a teenager and so has today’s guest, Tom Dabertin. Tom is the Executive Director and CEO of the National Headache Foundation, and through his work is advancing migraine care and bring important information to those who need it. Hey, Tom, how you doing today?
Tom Dabertin 00:36
I’m doing great job. And thanks so much for having me as a guest.
Joe Coe 00:40
And how are you feeling today, Tom?
Tom Dabertin 00:42
You know, I’m feeling pretty well. I am an individual who not only works in the area of headache and migraine, but I actually have had migraines since I was 17 years old. I still remember the very first time that I had a migraine headache. I was actually at a basketball practice in high school. And my coach told me I needed to grin and bear it. And I remember the sharp pain through my head and the the auras and the sensitivity to sound. It felt as though the basketball was literally pounding against my head. And remember that I went home and slept for hours. And that’s, that’s my first experience with migraine. I am fortunate that as I’ve gotten older, my migraines have been less severe as far as headache pain, for example. There was a time and a place where you could pile all the world’s pillows on my head and it would still be too loud and too bright in the room. And I am lucky in the fact that now, my migraines generally are kind of a low grade migraine where I have some impact to my vision. I get the auras, for example. But I don’t get the full on sharp headache. However, after I have a migraine, I still I still have some of the same symptoms. I’ll feel somewhat nauseated during it. But afterwards, I need to sleep. I feel as though I’ve run a marathon for days and just have a, you know, a huge need for sleep and just totally, totally mentally and physically worn out from the from the episode.
Joe Coe 02:27
I can certainly relate to that feeling, especially after. We don’t talk about that a lot the physical and emotional impact that we have to now address after a really intense attack. I want to circle back, you talked a little bit about being teenager developing migraine and playing sports. Did that impact the rest of your high school and college life in any significant way?
Tom Dabertin 02:55
It did. I remember having migraines when I was in college, and you know, remembering trying to study for exams and how difficult it could be. The fact is, is that you know, I’m I’m going to be 62 years old this summer. So, back in the night, late 1970s when you told someone you had migraine, and especially if you were a male, I can remember one professor saying to me, “Nice try. My wife gets migraines, men don’t get migraines.” And so so they just didn’t understand. But you know, times have changed. And I think there’s a more widespread understanding that migraine exists. There is still a lot of misinformation and lack of knowledge on how it affects the individual and what the triggers are and the treatments and the preventative. So there’s still a lot of education that needs to occur out there. But it’s certainly better than it was 40, 50 years ago.
Joe Coe 03:57
You mentioned that you dealt with migraine while in college. Do you have any advice to give to students that are in college who might be away from family support and other safety nets?
Tom Dabertin 04:09
Sure, first and foremost, go to your student health center and seek treatment. Don’t wait. Don’t wait until you get home to see the family physician. We are working as part of the foundation’s initiatives, we have a program called Migraine University, where it’s an outreach program to both students and to practitioners at Student Health Centers throughout the nation’s college and university system to better educate those practitioners and better educate patients. Check when there is a health fair on campus, there’s probably a pretty decent chance that we’re going to have a presence or we’re at least going to have information available for you to better understand your circumstances and your situation. And remember this- migraine for example, it differs in every individual. So the symptoms that I may have may not be the same symptoms that you have. And make sure that you you talk to that health services facility to the staff there and seek some, some treatment Don’t don’t try to. Don’t try to live with it until you get home to visit the family physician.
Joe Coe 05:25
I hope so. And that’s why we do the work that we do and that you do at the National Headache Foundation is to make it better. Did you find that it took a significant amount of time to get diagnosed or after that episode on the basketball court? Did you see a doctor and they tell you that it was migraine?
Tom Dabertin 05:42
You know, I did go see the family physician, the family physician actually just said, “Well, it’s probably stress. And you know, or it might be sinuses,” and didn’t understand that it was migraine. It wasn’t until I actually sought some treatment at at a teaching hospital in Chicago at the University of Chicago, that I actually got relief. And they were able to explain there were certain, you know, there were certain things that I could do to avoid migraine and also to be treated. And I don’t recall what the prescription was that they gave me. But it was just a, you know, it was a miracle drug because otherwise, I had these very, very sharp, sharp pains in my head. I used to liken it to if you took a hot poker and ran it through the roof of your mouth out through the top of your head. That’s how sharp the pain was. And it was really unbearable. Yeah, I remember one specific incident, my son was about five years old. And I can remember him coming into my bedroom. I was you know, trying to sleep off the migraine and had you know, terrific pain. And I remember him being upset and said to me, you know, “Daddy, you don’t want to play with me?” And I’ll never forget that, because I was close to my kids. And it was just heartbreaking. Because he, you know, here he’s five years old, and he didn’t understand. And I guess that’s a personal story that a lot of individuals with migraine can can attest to that. It’s not just the pain and the, you know, the physical the physical exhaustion, it’s the the interruption to family life. I would do anything to play with my son and to be to enjoy those those times. But in that one case, I couldn’t function, I couldn’t stand up, I was unable to, to, you know, obviously go out and play with him on a on a beautiful, sunny, sunny day. So and you know, for a five year old, he didn’t understand that.
Joe Coe 07:50
How did you reconcile those feelings of A, needing to take care of yourself and not being able to and seeing your five year old wanting you to be present?
Tom Dabertin 08:00
Well, it really was the motivation for me to go see someone and get some professional treatment. And that’s, you know, that’s one of the shortcomings associated with migraine is that not enough people go out and seek professional treatment and there’s not enough individuals who provide professional treatment. So the National Headache Foundation has two really key programs as it relates to practitioners. One is a long standing program called the Added Qualification in Headache Medicine. We provide a certification for those practitioners who focus on headache. Sadly, were one of two organizations that provide that certification. And if you add up all of these headache specialists in the United States, it’s less than 1000. And you’re looking at a population of about 40 million with migraine and another 12 million with chronic headache disorders. The ratio of practitioner versus patient is just off the charts and we’re working to we’re working to promote that specialization. At the same time, we also realize that most practitioners, most physicians, for example, if you look at physicians, nurse practitioners and physician assistants, physicians usually receive less than two hours of total classroom training as it relates to headache. And not a lot of continuing education out there. So the National Headache Foundation this past September launched a program called Primary Care Migraine, and it’s a two hour training, two credit hours for those practitioners to be able to they can download it on their computer, they can watch it on their phone. It’s downloadable both Android and iPhone, and you can watch it on your phone. You can watch it on a computer. You can start and stop, there are four modules. When you complete the training you’ll have two hours of CE. You’ll also have a terrific diagnostic tool set; the seven most common symptoms of migraine. And there’s also a full listing of all the acute and preventative therapies that are currently approved by the FDA for the treatment of migraine. Our hope is to get this out to as many people as possible. Now we’re, we’re already certified for, as I mentioned before, physicians, nurse practitioners and physician assistants. In fact, the American Academy of Physician Assistants has certified us, in addition to the certification that we already had, but we’re working with right now with a number of entities to become certified for pharmacists and pharmacy technicians. And we believe that that certification will be available sometime in late June, early July. And we think that’s important because this day and age, a lot of people use quick clinics, urgent clinics that are located in retail pharmacies, and when those clinics aren’t available, or because they are there, a lot of individuals will seek out the advice of a pharmacist or a pharmacy technician and ask them about OTCs. There are plenty of good OTCs out there, over the counter medicines. But unfortunately, there’s a lot of misinformation so, you know, over the counter pain medicines for muscle aches is not going to do much good for migraine headache. And unfortunately, again, because of the lack of training, sometimes those errors are made. So what we’re trying to do is expand the availability of that training now to pharmacists and pharmacy technicians.
Joe Coe 11:54
It’s amazing and working with primary care and pharmacists is so important because so many of us that’s the frontline of health care. And we’re likely not going to see a neurologist, let alone a headache specialist. I was treated by my general practice provider until two years ago, and relatively well but felt like I needed to step it up. Big fan here at GHLF of Walgreens. So anything that we do with pharmacists that we can raise them up we love because they do such important work. In addition to identifying different issues, but also in getting us access to our treatments, like the specialty pharmacist or the retail pharmacist will help you navigate copay assistance programs and all these other things that as a chronic disease patient, as someone living with a disease like migraine, it’s one less thing that we have to do. So I think that work that the National Headache Foundation is doing is is really great.
Tom Dabertin 12:53
Yeah. And we’ve been partnering with Village Medical, which is the operator of the urgent clinics inside Walgreens and also with Kroger, Kroger Little Clinics, which is Kroger’s urgent care facilities and with the Convenient Care Association, so that we can make sure that we’re providing the kind of education and the kind of information that those practitioners really need to serve the larger population. Again, we know that it’s going to be a long time before we can substantially increase the number of headache specialists in this nation. But if we can raise the bar for primary care, and the 650,000 primary care practitioners, including pharmacists, we can make a tremendous difference and positive difference in the treatment of migraine and headache disorders.
Joe Coe 13:50
I want to dig a little deeper about your Why. Why do you feel passionate about this work and why do you choose to lead an organization such as the National Headache Foundation?
Tom Dabertin 14:03
Well, I spent 20 years prior to coming to the National Headache Foundation as a certified management consultant. And I worked with a lot of not for profits. And so I know the not for profit industry well. I also held a very senior position at the Museum of Science and Industry previously in my career. And so I enjoy the not for profit space. I’ve worked in the private sector, I’ve worked in government, I’ve worked in, in not for profits and to me not for profit management and leadership is the most challenging because unlike the others, you just can’t go out and increase revenues. You have to be strategic in what you do. And so I find it very, very challenging and I find it extremely rewarding to be able to make a difference. The fact that I’m able to make a difference in the lives of people who are affected by migraine and having had migraines myself, I can understand firsthand of what they go through. I want to make sure that the next person that has a five year old for example, doesn’t have to doesn’t have to give up that day that they can go out and they can enjoy the day with their children and with their family and do all the things that we want to do instead of endure my another migraine attack, so, to me, it’s very rewarding to be able to know that I can make a difference.
Joe Coe 15:26
That’s really amazing. And thank you for that difference that you’re making. Let’s have a little fun now. I read in your bio that you created the Pierogi Festival in Indiana. Can you talk to me about the Pierogu Festival and what brought you to that?
Tom Dabertin 15:42
Sure. So Pierogi Fest actually is a very well known festival, draws all kinds of national attention. We just recently were named by MSN as one of the best festivals in the United States. Last year, we were named by Reader’s Digest as one of the 15 best festivals in North America. We’ve gotten similiar honors from Yahoo, from the Wall Street Journal, from TripAdvisor and from Oprah Winfrey Magazine. So we’ve gotten a lot of acclaim. It is a festival that is run exclusively, it’s run and organized by volunteers, about 600 volunteers. And it’s held in a small town called Whiting, which I grew up in and my family has lived in for over 120 some years. And it’s located just outside Chicago. And when we originally came up with the idea, we had no idea that of course Pierogi Fest would be so so popular, but it was really a way to celebrate kind of have a fun celebration of ethnic heritage. And one thing about Pierogi Fest is whether you are Polish, Slovak, Italian, Hungarian, you can be your roots can be from South America, from Africa from Asia. People enjoy the festival. It’s wacky, it’s fun, it’s entertaining. And we have one of the best food menus of any festival in North America. Saveur Magazine, which is a food cuisine magazine pointed that out some years ago that our menu is so exhaustive and the reason why is because we limit the number of duplications. So with the exception of pierogis, and maybe a few other East European dishes, we you know, we limit the number of people selling say elephant ears, there might be only one elephant ear vendor, even though we draw over 350,000 people.
Joe Coe 17:38
Now I have a couple of questions about pierogis. What’s the most unique pierogi that you’ve come across?
Tom Dabertin 17:45
So you’re asking actually, when it comes to pieorgis itself, I always say that I don’t eat them so I can save them for everybody else to savor. I have never been a huge fan of pierogis, per se. I think the most unique that I’ve seen is we had alligator stuffed pierogis at the festival. And that was up through the pandemic. I don’t know if we’ll see it. We did have we did have kind of a soft launch last year of the festival again. So I would think that we’ll have alligator stuffed, we’ve had- the ones that are probably most interesting to me, you can bake them, you can fry them, you can boil them, there are so many ways to cook them. I’ve seen them even cooked on an open grill. But there was there’s also fruit stuffed pierogis. And they’re kind of deep fried. It’s kind of almost like a deep fried donut with a jelly inside kind of like a deep fried Pączki. And so those are very popular. But the mainstays that you know, the the cheese and the meat and sauerkraut are still probably the three most popular versions.
Joe Coe 19:01
I don’t know why my head goes to potato.
Tom Dabertin 19:06
Potato is right up there. I’m sorry, I left potato out.
Joe Coe 19:10
Yeah. I hate potato. So is this scandal? Are we breaking news that you don’t really pierogis?
Tom Dabertin 19:17
Well, it’s actually documented. It’s been documented before that I don’t really pierogis. It’s kind of a fun, it’s kind of a fun twist. Again, Pierogi Fest is fun. It’s designed to be a little quirky, and a little outrageous. And so it’s kind of fun that the chairman doesn’t eat pierogi and I have been interviewed a number of times over the years and been asked why I don’t and again my answer is I’m leaving them for you and everyone else
Joe Coe 19:43
That is very noble of you, Tom. How will people find out more information about the National Headache Foundation? Amazing. And I’ll also remind folks that National Headache Foundation has a podcast called Heads Up and I had Lindsay on the show a bit ago, and I was on Heads Up and it’s, you know, if you if you’re into podcasts, and you’re listening to this one, you can go over to Spotify and Apple and all those fun places and type in Heads Up and subscribe there too.
Tom Dabertin 19:50
You can go to headaches.org. We have a great website. We have lots of materials, lots of learning opportunities. I do want to mentioned that we’re shortly going to be launching a series of both live forums and training videos for veterans and for those in the military, because we know that that those who serve this country with their lives are affected by migraine, more so than the general population. And so we’re doing some veteran centric training videos that will be hosted on our website and other social platforms. And those will launch shortly. And you can go to our website though and pull up all kinds of information. You can even pull up a list of individuals who have completed either the AQH certification or the UCNS certification, which makes them headache specialist, or at least they you can find out if they’ve completed the primary care migraine certification. Yeah, it’s really it’s been a very successful program. Lindsay does a great job. And, you know, it’s, it’s amazing. Again, thinking back to my own situation in the 1970s, there was really nowhere for me to get information. What’s great about this point in time is that we have a more educated population than ever, you can go online and you can pull up information on just about anything. If you’re, you know, if your dishwasher isn’t working correctly, you can pull up a video that will tell you what, what’s wrong with your dishwasher. Well, what we’re trying to do is provide information that people can pull up and find out what’s wrong when you have those severe headaches, when you have that nausea, when you have those auras, when you have that sensitivity to sound. We want to we want to give people information. And that’s really our key our key mission, whether the information is for certification for practitioners or information for veterans or information for general the general public.
Joe Coe 22:06
Amazing. Well, I’m all out of questions. Was there anything that I missed that you would want me to ask?
Tom Dabertin 22:12
No, you’re such a great host. You’re so thorough and do a fantastic job, but we’re very pleased to to be able to talk to listeners about the things that we can offer. And we’re looking forward to some continued success with our different programs. And, and once again, I think it’s just key for everyone to understand how many people are affected by migraine, and by chronic headache disorder. It’s not, it’s you know, it’s not just something that maybe your partner or your spouse or your child has. The fact is, is that it’s 52 million people over age 18 that are affected. It’s a huge, huge number of individuals in this nation and and it’s our goal at the National Headache Foundation, to try and educate everyone on how those how those headaches can be avoided, how they can be treated, how they impact, can be reduced and we’ve got we’ve got a pretty, pretty large encompassing mission and a lot to do but we’re proud to do it.
Joe Coe 23:22
Amazing. Thank you so much for your time.
Tom Dabertin 23:25
Thank you.
Joe Coe 23:27
Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain, head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.
Narrator 23:43
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this episode of Talking Head Pain, Joe is joined by fellow migraine advocate and friend Alicia Torborg. Alicia serves as the Executive Director of the Association of Migraine Disorders, an organization built on the pillars of research, education, and awareness.
Listen along as Joe and Alicia discuss research being conducted by AMD, the duo’s perilous journey hiking Camelback Mountain, the history behind #ShadesForMigraine, and Alicia’s most rewarding moments working in migraine advocacy.
Climbing to new heights: A discussion with the Association of Migraine Disorders
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:09
Welcome to Talking Head Pain, the podcast that confronts head pain, head on. I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation. I’m also a migraine patient, have been so for 20 years, so I know what it’s like to live with this disease. This week, I’m speaking with Alicia Torborg, a dear friend who’s also a migraine patient and the Executive Director of the Association of Migraine Disorders. It’s an amazing organization focused on migraine research, education and advocacy. I’m here with a really good friend and powerful leader in the migraine community, Alicia. Alicia, how are you feeling today?
Alicia Torborg 00:47
I am feeling well today, as a matter of fact.
Joe Coe 00:51
That’s great. And can you tell us a bit about what you do and your connection to migraine?
Alicia Torborg 00:56
So I’ve had migraine for most of my life. It started when I was about 10 years old. It has come and gone and taken different shapes over the years. And as I got older, they were no longer calling them migraines. They were calling them tension headaches, and they were debilitating. They were every single day. You know, at one point they were- I was going on about five months of chronic pain every single day and nothing was helping. I saw a bunch of different doctors, a neurologist, homeopath, chiropractors, I did yoga, changed my diet, did everything I could possibly think of and nothing was helping. So finally I said, “Let me talk to an ear, nose and throat doctor and get allergy tested, maybe there’s something I’m allergic to.” And he had asked me a ton of questions and finally had said, “They’re definitely still migraines, and we should treat them as migraine.” So, you know, we started a different regimen of medications. Everything is you try and see what works. And you know, some things helped and some didn’t. But I worked closely with him as a patient-doctor relationship over the past few years. But after about a year, I had said to him that I was going to be changing careers. My background was in finance and banking. And I was going to go out on my own and do some program management. And he was asking me more about what I did. And he said that he needed an Executive Director. So here it is seven years later. And if you had ever asked me five years ago, where do you think you’re going to be in five years, I never would have said in the nonprofit world in migraine, ever. But here I am. And it’s been such a rewarding, terrific ride. I still have migraines, though.
Joe Coe 02:38
I think many of us can relate to that. Tell us about the Association of Migraine Disorders. What’s your mission and what do you do?
Alicia Torborg 02:45
Yeah, so they were established in 2012. And like I said, he’s an ear, nose, and throat doctor. So many people say, “Why is he leading this organization? Why would an otolaryngologist be doing this?” But he was seeing so many patients that were coming in saying, “I’ve got to have sinusitis, you know, I’ve been on antibiotics, but they’re not helping. I get scans and they show I’m clear,” but they kept being treated for sinus infections, when in fact, so many of them were migraines. So he started this organization, this foundation in 2012. And our focus is to expand the understanding of migraine through research, education, and awareness. So we’ve got different programs under each one of those pillars.
Joe Coe 03:27
I am a big fan of your organization and supporter, you do amazing work. Can you talk a little bit about the comorbidity project that you recently launched?
Alicia Torborg 03:38
So, we recently hired, she’s an RN, and she’s got a background in writing and an interest for just researching. So we have found over 75 comorbid conditions that are common to have with migraine, ranging from endometriosis to anxiety and depression, even Alzheimer’s. But there are 75 of these conditions. So what we’ve done is written about the correlation between these two and then given suggestions on what type of doctor you should see when you have both of these conditions, medications you should consider and avoid. But we also align with allied partner organizations. So we realized that we may not be the expert with depression or mental illness. So we engage with these allied partners and work with them. They’re all thrilled just to be working with us that there’s a, you know, more of an interest in these conditions.
Joe Coe 04:33
Many of you may not know Alicia and I are from the same county in New York. It is the smallest county in New York. And that means that we share a special bond and I got to live that bond with Alicia and some of our colleagues at the Association of Migraine Disorders during a hike in Scottsdale, where I thought they were taking me out to kill me. It was a very intense hike. I said, “Yeah, I could do that.” It was an actual hike. In New York when I think hiking, I think like an incline, you go up a little bit, you know, in the forest. This was a pretty intense hike. Can you talk about your history doing this at the American Headache Society meeting and, and what was the hike like that you took me on? You could explain it better than I can.
Alicia Torborg 05:22
So several years ago, we started this hike with the founder of AMD, who happens to be about six foot four, very long legs and my other partner at AMD, who was also blessed with height. I am not, I’m five two on a good day if I really stand up tall. So I went for half the hike with them. But I was with another person who just wasn’t quite comfortable going to the top, which I think is equivalent to 180 stories. I would have to fact check that I’m not positive. But so I had gone halfway up once before. So then I got Joe and I said, “Joe, we have this fun day, and it’s adventure, it’s a great adventure. Come with us, you’re gonna have a blast.” So Joe did and I think you and I are probably comparable in size. We went up this hike with these other two, and I would say they would be qualified as athletes. I mean, they’re both pretty athletic. You and I are in good shape, Joe. But so we went up this hike that was perilous. I mean, it was climbing hand over hand, crawling up rocks. It was above my skill set. For sure. We did it and I did it in running shoes. Like really wrong, wrong choice for for the for the hike, I was thinking New York hike. Now I have hiking shoes for next time. Just so the audience can really feel what I felt, I get to the mountain. It’s Camelback was the name of the mountain. And there are signs that are like, “It’s not too late to turn back, you could die.” And I’m like this is really comforting. But then I said, “You know what, if this is my time, and I’m gonna go out on a hike, I’ll be with good people in a beautiful place. And it’s meant to be.” So we did it. And it was really it was really cool and a great bonding experience and something that I definitely cherish and brought me closer with your organization because I literally felt like you guys had my life in your hands. I trusted you and you did a great job with it. I had such a great time, really fond memories.
Joe Coe 07:40
What are some things that you have you learned in the past seven to eight years of doing this work professionally? You’ve been a patient, you’ve been a person living with migraine for so long, professionally, what has been some of the most rewarding moments for you in this work?
Alicia Torborg 07:58
I would say over the past few years, I joined this council, Disparities in Healthcare Advisory Council. And they would each month, they would have experts come in and really teach us about different cultures. And I was so eager to, to learn. You know, I feel like I’ve lived somewhat of a sheltered life, some would say a privileged life, that I had so much to learn. But I would also come to these meetings saying, “I can’t change the world. I’m only one person.” It’s easy to get overwhelmed, and put your hands up and say I can’t do anything. But I would go to these meetings and say, “What’s the one thing I can do? What is the one thing I can walk away tomorrow and do something personally or professionally?” And I realized there were so many things I could do professionally, you know, to help. And you think like with this little organization, this little nonprofit, what can you do? But it’s inviting scientists, you know, people of color to you need to have a seat at the table, you need to be involved in, in research. We need more scientists that are from diverse backgrounds, and less people that look like me, and you know, more color, more background. So one of the things that we had done is we created this, they’re called Health Care Provider Kits and they’re really to help clinicians diagnose and treat migraine. So I know with me, like I said, I have good health insurance. I’ve always had good employment, I live in a nice area. It was really hard for me to find a good doctor. So imagine being indigenous and living on a reservation. You can imagine how difficult it would be to find appropriate health care. Imagine not having medical benefits or a good job or a car to drive yourself to it. I mean, there are so many people that obviously have so much less than I do, than we do. So we really made it our goal is to get these free educational tools out into the hands of clinicians, not just doctors, but nurses and psychiatrists, and dentists and people who work in clinics and emergency rooms and in on reservations, get these materials out to these people to help diagnose and treat people, which, by the way, migraine is so much more prevalent in these communities as well.
Joe Coe 10:23
I love what you said, Alicia, about the one thing that we can do. I think that’s something that we all can think about in different ways. We talk about really hard topics working in healthcare. People are feeling isolated, alone, people are struggling to get access, people are struggling once they find a good doctor to be able to afford and find the right treatments. So we often are fighting all these different battles and putting out all these fires. And as advocates, I think it’s important to take a step back like you did and said, “You know what, I could focus on one thing, and what’s the one thing that I can be impactful and do.” And I think that is a really good way to tackle these larger problems because you’re one thing adds onto my one thing, adds on to the National Headache Foundation’s one thing and the American Migraine Foundation’s one thing and it’s just a way that we all build and and do this work collaboratively. And I think that’s a really smart and sensitive way to approach it. So you didn’t talk about one of my favorite programs that you guys do, which is Shades For Migraine. Light sensitivity has always been one of my issues. Even when I’m not having an attack I’m light sensitive. You see right now I feel fine. I have all of my lights off, just natural lighting. So when I came across Shades For Migraine, doing this work at Global Healthy Living Foundation, I was like that is a cool event. You ask people to wear sunglasses to raise awareness around migraine. Can you talk a little bit more about that event, how it started, and how many people you reach?
Alicia Torborg 12:07
Sure. So and I’ll back up even a little step before that. So many of our programs, like you’ve heard me talk a little bit about research, a little bit about education, they are so important to us, they are pillars and to my core, I believe they’re just so important. They’re serious programs, so you don’t get a lot of laughs in those programs. Like it’s good, serious work. Shades For Migraine, it’s a fun program. It’s easy to participate in. The only ask is wear a pair of sunglasses, take a picture, share it on social media. And it can be anyone. It could be kids in a school, it could be your parents in an assisted living, or you know, anywhere. It could be a Headache Clinic. It’s just really raising awareness about migraine. So we have these purple sunglasses, which you’ve seen, I know you have some. They are kind of the signature symbol for it. But we say any, you know, sunglasses will do but we’ve recently unloaded 15,000 pairs of sunglasses. So now I can add manual labor to my to my resume. You’re getting ready for the hikes and all the physical activities by lifting sunglasses, it all it all ties together. Right. But it is such a fun campaign. A few years ago, prior to COVID, we all went down to Times Square and we’ve gone to the Today Show. We try to get on the Today Show every year. We’re out there in the square first thing in the morning. And you know, we’ve met Al Roker and Hoda and just have always had a great time. But we went to Times Square a few years ago and handed out 1000 pairs of sunglasses. And we brought a local newscaster with us and they were on tour buses and just interviewing people on the streets. And it was amazing. It was- people were crying. Some people we interviewed were actually crying because they could not believe that there was so much attention to a disease that really does not get a lot of attention. I love the event. It somewhat inspired a conversation I had with a fashion designer that we work with for New York Fashion Week around arthritis, Michael Kuluva and his line, Tumbler and Tipsy. Said to him last year, I was like, “You need to do something for migraine. Can you design a shirt,” and he’s like, “I’ll design a pair of sunglasses.” So he designed a pair of sunglasses for the fashion show last year that I got to wear. It was remote modeling so everyone modelled from their their locations because it was during the middle of the pandemic and Shades For Migraine inspired that. Because migraine and sun and light and sensitivity and sunglasses, that’s something that people can relate to. And you guys have done an amazing job in amplifying and creating this really fun, like you said, grassroots campaign that’s super accessible. Most people have a pair of sunglasses that they could grab and put on. There isn’t, you know, a large entry to participate, you just do it, raise awareness, and feel good and feel proud of living and thriving with a chronic disease. So I love Shades For Migraine, I’m a big fan. Is the website shadesformigraine.org? It is.
Joe Coe 15:20
So I encourage folks to go to shadesformigraine.org and definitely support that program. It’s a really great one.
Alicia Torborg 15:37
Thank you. Yeah, it’s fun. And we have people participating internationally. So in many different countries, and people just love to be part of it.
Joe Coe 15:45
I meant to ask this earlier, I like to start the episode with, if I’m talking to someone that has migraine, if they can remember what their worst migraine attack was like. So for you, what was that like? How did you feel? What did you think?
Alicia Torborg 16:03
I can remember back to being a child. So I was about 10 years old, and they would come and they were so terrible. And they would start with an aura. And I don’t really get auras that often anymore. But they would start with an aura. And then I would get this unbelievable pain. This was a recent realization in my life. Teachers used to ask me, “Are you being bullied?” And I would say no, because back in New York, you never told on the kids that were bullying you. But I totally was, I was being bullied and I was being chased home from school. And I wonder if that had anything to do with like, that anxiety, I wonder if it had anything to do with the actual migraines or not. But it’s funny, I never would have told on anybody either. Now as an adult, I’m thinking, gosh, if I told them them, they would have gotten in so much trouble. These were like New York City cop’s kids, like strict parents. Those kids would have gotten in so much trouble had their parents known that they were chasing this little girl home from school. Those were the worst. Like, emotionally, they were terrible times but the physical pain and the nausea and the sickness that I would endure. I can remember begging my parents to take me to the hospital, or to the doctor so they could put me to sleep. And they would give me some kind of a shot that would literally put me to sleep.
Joe Coe 17:25
Well, that’s really- well, I’m sorry that you experienced that as a young person. And we fail our young people as a society by allowing a climate that creates bullying, and it happens to this day. That concept in adverse childhood events and trauma is something that is really of interest to me. I wrote a little bit about it in a Medium piece that I published a couple months ago around language and stigma. And I too wondered, like you do, as an adult looking back, did being bullied as a gay kid in Rockland County, did that impact, did that create more stress and make me, if I was predisposed to having migraine, had me had migraine attacks earlier or more intense. And I wonder that and there needs to be a lot more research on that connection. And it’s something that I’ve publicly called for researchers to look at. I know our organization, as does yours, would would like to see some more factual as opposed to anecdotal, because this is us, you know, bring our stories here around that. Because I think that a lot of people share that experience. And if you are living in a culture that is putting you down, or if you’re being bullied or if you’re not feeling safe and secure, what impact does that have on you if you are predisposed to having migraine? That’s a really interesting research question that that should be addressed.
Alicia Torborg 18:57
I imagine there’s a connection between stress and anxiety and, and migraine or other diseases, too. Was there anything that I didn’t ask that you would like to cover? I only say, advice to people is to always be looking for something. I know with me, I always try to think like, “Why do I have migraine right now,” or, “Why am I in such a bad cycle?” Is it something I’m doing, eating, stress? Something, am I doing it? Is it environmental? I’m always looking for reason. And sometimes there’s just not a reason. Or maybe there is and we just don’t know. And we may never know what the reason is, just your luck or genetics or whatever it is. But I’m always looking for the next solution, something that works. And it’s combination therapy, it’s maybe it’s glasses, maybe it’s neuromodulation devices on top of medications and supplements. But I know it can be so easy to get frustrated and just sit in the dark and just be like, “Oh gosh, this is my life.” You know. That’s one piece of advice. My other advice, and this helps me so much is, and not everyone can do this all the time too and I totally get that if you’re vomiting, you’re not going to go out and go for a walk. You’re just not, you can’t, it’s not reasonable. But I can’t tell you how many times I’ve really felt bad, like, the pain is bad. I’m in a dark place. And I make myself go out and go for a walk. And like, you know, I could lay in bed and that’s all I think about, or I could be outside in nature with my dogs. And at least I’m enjoying that walk with my dogs or my kids or just by myself. And it takes my mind off it a little bit. And sometimes the endorphins just help. So those are the two things that really seemed to help me. Really great pieces of advice. We discussed a little bit of the second part in an episode that we did with Dr. Lindsay Weitzel on Outfoxing Your Migraine, and it surprised me that she was talking about how she or someone that she works with will listen to music, or go under their covers and watch a TV show and listen to it if they had the light sensitivity or vice versa, to distract their mind from some of the pain. And it seems so counterintuitive. But I’ve definitely tried those tactics if I’m not feeling great. And I’m able to go out for a walk or listen to music, or do something that I know makes me feel good. And if you have to stop, you stop. And I’ve certainly done that too. But it’s the your point, Alicia, is the trying. And I think what I’m hearing you say is is that we need to provide space for ourselves to give ourselves the gift of doing all that we can to make ourselves the best possible version of who we are. And that comes in all different ways. Right. I agree.
Joe Coe 21:46
Well, this was so nice. Thank you for being so open and sharing and really appreciate your organization and all the hard work that all of you do day in and day out to support migraine patients and the people that love us. So thank you.
Alicia Torborg 22:20
Thank you, thank you. It’s important work and I’m so passionate about it. So I feel blessed that I’m able to do this. So thank you for listening. Thank you for having me.
Joe Coe 22:33
Thank you so much for listening to this episode of Talking Head Pain, the podcast that confronts head pain, head on. If you liked this episode, please give it an honest five star rating and subscribe so you never miss another one. I’m Joe Coe, and I will see you next time.
Narrator 22:49
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this episode of Talking Head Pain, Joe is joined by Nicky Smith, a migraine and dizziness advocate who was recently featured as a contestant on the hit trivia show Jeopardy. Nicky shares their experience about having chronic migraine and dizziness as well as why it was important to discuss the conditions on the national stage. They also talk about the importance of building a strong community of migraine superheroes.
Vestibular Migraine for 100: A Jeopardy Contestant Raises Awareness
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:10
Welcome to Talking Head Pain, the podcast that confronts head pain, head on. I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation, and I’ve lived with migraines for over 20 years. Throughout my journey, I’ve rarely seen migraine discussed on national TV. But today’s guest brought migraine awareness to one of the biggest stages in the world, Jeopardy. Nicky Smith is a patient advocate and debate coach and a recently featured contestant on Jeopardy.
Nicky Smith 00:39
For migraines, I’ve gone to witch doctors, I’ve done healers, I’ve done everything imaginable. Grand Master Danadoost. Like I’ve, I cannot s**t on any form of science or astrology or anything. I’m open to anything.
Joe Coe 00:55
Who is Grand Master Danadoost?
Nicky Smith 00:57
Grand Master Danadoost, he’s a guy that just like, does readings and is like a Master Healer, and he’ll give you his CD and he’s up in the hills in some mansion in the middle of nowhere Bay Area. You know, Murrin Napa area. And that was just very bizarre. And he’s just, you know, the, the witch doctor actually knew a lot about me that I don’t think I told them. So that was actually interesting, but she wanted to kill a good amount of animals behind me. And I don’t know if I would have really believed it. So, a lot of people said I should have done it in retrospect, but you know, she’s still there. Probably. So who knows?
Joe Coe 01:33
Well, I mean, we’re kicking off Talking Head Pain talking about animal sacrifice. This is a new area of exploration for us. So thank you. I’m really excited to talk with you, Nicky. How are you feeling today, Nicky?
Nicky Smith 01:48
You know, dizzy. But beyond that, you know, yeah, getting by, getting warmer, so not a fun migraine trigger. But in many ways, life is good. So I’m good.
Joe Coe 02:01
Some of us may have seen you on Jeopardy, which is really exciting. How was that experience being on Jeopardy and using that platform to raise awareness?
Nicky Smith 02:11
Yeah, it was definitely intense. Imagine, you know, the brightest light you can imagine right over your head right in front of you, you know, moving lights, moving cameras, all that. Pretty sure I blacked out through a good chunk of it. I don’t remember a lot of it. So it’s funny watching yourself later on TV and being like, “Oh, at least I got that answer right.” Things like that. The interesting part is I had so many people, even in the migraine community, you know, that work with migraine organizations being like, “You look so normal up there, you look like there was nothing going on.” And in my head, you know, obviously rooms spinning just, sharp like razor pick in the head and throughout the spine, you know, super dizzy, super nauseous, super fatigued, but you can just look completely normal. And so I think just people to see that, that someone can you know, you’re on live TV look like everything’s under control, but in your brain is chaos. So that was interesting. But just you know, the best part about it was being able to talk about the condition, having so many people reach out and talk about how isolating it is, how they’ve never heard dizziness, or, you know, vertigo or even like, yeah. How often you even hear the word migraine on TV or in movies? I think other than Lucille Ball and Arrested Development, the word Vertigo is, other than that Hitchcock movie, which isn’t really even about it. So just to be able to talk about a condition that’s so prevalent, that affects so many in such a horrible way, and that’s not mentioned at all was great just to have so many folks be able to connect. And you know, we’re able to, I’m planning to start a support group in the Bay Area from this, I’ve been able to just get, share and connect with so many folks with resources from this. So that was the best part about it. But Jeopardy, you know, it was a whirlwind. I can, you know, get them more into that. But it was definitely a blur, to say the least.
Joe Coe 03:48
That’s so interesting. A couple of things; one, and I won’t say what episode it was, but I recorded a whole podcast that I don’t remember doing. I can see myself, I hear myself, I’m like I was there. I did it, but it was during an attack. And you know, it’s amazing Nicky, what we can push through living with a chronic disease that we’ve lived with for so long. I definitely want to dive a little bit more into the experience about Jeopardy, but I created a little Jeopardy game for us to play which is more on the gay side than the Jeopardy side. I’m going to call it “Category Is” and if you could just answer with a sentence or a word, we can maybe dive into some of these questions a little bit more, but I thought it might be fun if you’re willing to play “Category Is” with me.
Nicky Smith 04:39
Oh yeah. Oh, I’ll play anything. Oh, all the games.
Joe Coe 04:44
Category is, the feeling you had during your worst migraine attack.
Nicky Smith 04:48
It’s when I first had my major you know, vertigo migraine attack. Geez, 11 years ago now. I was in my office. I was starting my PhD program. And it just felt like someone picked my chair up, spun it around 1000 times, and just kept smashing my head into the ground while they were spinning. It was like, you know, like Thor or something, picked up my chair and just whirled it around with such ferocity and anger and pain and chaos. And then I just remember calling the nurse hotline and being like, “Hey, I can’t really see anything. I can’t sit still or stand still. Everything hurts. My head keeps moving. My body keeps moving. It feels like they’re going in different directions. I don’t know what to do,” you know, you feel like you’re dying. You’re like, “This is this is horrible. Why won’t this stop?” And they always go, you know, “Come to the ER right away.” You get to the ER, and then they, you know, so but it’s it’s that was yeah, the first attack was the scariest because I didn’t know. You know, I knew I knew vertigo existed. I thought okay, the room spins. But it was just such a violent, chaotic, horrible. Just just the worst thing I could imagine that I wish upon no one. And then you learn that that’s, that becomes your norm. You know, as you said, you find a way to push through it and that it literally is my norm but when it first hit, it was just horrendous. Yeah.
Joe Coe 06:15
We’ll do one more. And I guess this is for Double Jeopardy. That’s the right term.
Nicky Smith 06:21
There you go.
Joe Coe 06:21
I hope I don’t get dragged for my lack of Jeopardy knowledge.
Nicky Smith 06:25
You’re good. You know, I didn’t even, I hadn’t watched the show for a year and a half when they call me. The only reason I watched it before was for the initial audition to get on the show. I can’t watch Jeopardy. It moves so quick. I told him I’m like, “This show is way too dizzying. I can’t watch it.” So I don’t blame you at all. But hey, whatever. Yeah, go for it. Got to talk about migraine on it at least.
Joe Coe 06:48
Amazing. So category is, what it means to be a queer person navigating the medical system.
Nicky Smith 06:54
Yeah, I’m, you know, in a lot of ways I quote unquote, pass. You know, doctors just look at me and go, “Oh, how’s he going?” Or, you know, they’ll assume my partner of anything, or they’ll assume gender, they’ll assume gender of a partner, or they’ll assume this. And, you know, it can it’s that, like, million little cuts, and you just, you know, in some ways, kind of go, just give up. And for me, I you know, I navigate with a family where I don’t really, you know, care to educate them about things like pronouns and stuff. It’s just, they’re, they’re isolated, and it’s just not their, their world, they don’t really interact with it. And I would just, it’s just, I have so much, so little spoons and energy. So I really kind of control who I think I can you know, educate and, and change. And things with doctors, you only try so many times, and you go like, “Alright, just fine. Misgender me, call me what you like.” So that’s, that’s one aspect of it. I mean, the other one is just the cost and the fear of life in general with, you know, being queer and being disabled. You know, your employer can fire you for really any reason under our system, they don’t have to say it’s because you’re queer/disabled, they can say, “Oh, because you came in a minute, late that one day,” or, “Because you looked at me slightly weird,” which for someone that can’t look at screens, and does tons of Zoom meetings, I mean, I guess I’ll say this now, that’s why I look away from the screen, because I can’t really look at screens long at all. And so literally, you know, an employer or a doctor couldn’t make up any reason for not wanting to see you again, and not wanting to support you. And when so many treatments that we need aren’t covered by insurance. I mean, right now, I paid I think $6,000 out of pocket, just to see one provider, which isn’t their fault they’re not covered. They’re a great provider. But the treatments they provide that we need, insurance industry doesn’t care about dizziness and doesn’t want to treat it preventatively because it’s so subjective in their mind. And it’s, you know, a lot of people they view it as people complaining to get meds or what have you. So I think you add that with queer folks who generally disproportionately have more difficulty finding stable jobs, stable housing, stable health care. I’m, you know, privileged in infinite ways, but I think it’s especially true for fellow like queer and trans folks, especially folks of color, low income folks. You know, folks with disabilities. So I think just, you know, navigating the relationships with the doctors, hopefully finding ones that are at least kind and patient, and then just finding advocates and organizations, hopefully, that can help you. Because that’s a difficulty too, especially with our insurance, gatekeepers to our care. And just, I try my best to share resources with folks so that we can hopefully find our ways around how this system, you know, excludes us and doesn’t want us to provide the care, to get the care that’s needed. But it’s definitely exhausting. That’s that’s a good word for it. You know, they wear you out to the point where like, “Should I keep trying treatments, or is this just going to be the rest of my life?” That’s a pretty horrible position to put someone in with a chronic disability like. The system basically pushes them to the point that they go, “Should I just give up forever and accept for the rest of my life, I will see the world just through a chaos spinning, horribly, pained, fatiguing, nauseating, just forever drunk on a boat that’s spinning down a hill.” And that’s a really bad place to put humans in through a system that’s supposed to provide, you know, health care and treatment.
Joe Coe 10:32
It’s interesting about talking about gatekeepers. I was on my colleagues podcast, The Health Advocates, and I shared about my experience getting on migraine treatments, and how I was on the phone with our insurance company for like, the third or fourth time. And I finally said, after getting pushed around for over a month, “What’s the cheat code? What do I need to say?” Because it kept getting pushed back based on a doctor not checking this box or this not like it was this bureaucratic nonsense, like it was no real reason. Except they were delaying the treatment because it saves them money in the short term. So I asked what the cheat code is. And there was a really good episode on The Health Advocates around the cheat code for insurance companies and basically asked them like, “What do you need me to do exactly?” So yeah, that’s a really powerful how you describe that. We’ll stop playing this game, we’ll get back into the serious interview, standard podcast, I read a little bit about you, Nicky, and there’s a couple of areas that I thought were really interesting to explore. You are really connected to X-Men. What was it about X-Men and Marvel that drew you to that universe?
Nicky Smith 11:46
So, so two things I’ll say before I forget. One, that cheat code, you found, if you wrote that down, or you remember any of it, if you would be down to put that, you know, in my Twitter, @NickySmithBucks, Nicky, N-I-C-K-Y. I have a doc, and this is just a you know, I have a document link that anyone can add to, anyone can view, anyone can share. And I try to put any resources on there that I’ve heard about that, you know, I’ve tried and then other folks have added. And I think having like that cheat code on there, you know, for example, there’s things like when you appeal something, you can say, “Hey, this treatment that I need here isn’t close enough to me elsewhere.” And that’s like, for example, a coded language that insurance companies will go, “Well, I guess you can’t drive 50 minutes away, fine, we’ll let you go to this practitioner closer to you.” There’s like certain languages like that in the appeals that I just think, as you mentioned, you know, or, or numbers, you can press to skip the automated system. So we don’t have to hear the music. And then people talking over the music, which is, I think a big migraine trigger is having to hear two things at once. And I love that hospitals don’t realize that when you have to listen to their, “We’ve won the best hospital program in the past five years.” And they’re doing it over super loud jazz music, and it’s like, great, I have to listen to this on for an hour to make sure I can complain to your insurance company that you’re not covering me or what have you. So yeah, that’d be great to share that stuff. But yeah, in terms of the X-Men thing, I realized that a doctor, the first neurologist that I saw for vestibular migraine sent me a resource list over the UC, like, University of California San Francisco Hospital messaging system. And no one told me I had access to that messaging system. I didn’t know the messaging system existed. And then six years later, when I was looking for my medical records, they said, “Oh yeah, go to this message, this system.” I see the message, they sent every single thing that I wish I had tried right away, and I had to wait six years to see it because no one at the hospital mentioned, “Oh, we’ll be sending you a message with with what you should do post treatment to actually help yourself.” And so I went you know, “Screw this,” which I wish I did earlier on and I got every single book about migraine, vertigo, dizziness, the brain, neurology. Anything I could find, and I read probably like 150 books in a summer. You can get them all free from your library, you can request them from other libraries through the loan program. And one of the books talked about how migraineurs are considered the some of the original superheroes because when a storm was coming or the rain was coming, the person with migraines in the in the group or in the tribe would stop and kneel and just grab their head and like or point up at the sky and then rain would come, you know, a few hours later. Then and then people would know, “Oh, we have to stop and we have to set up camp because rains coming because our superhero let us know that the rain was coming.” And so I like the idea that you know, migraineurs are considered the original superheroes but also like, you know, I get that the superhero movies are dominating everything. And they’re they’re crappy a lot of ways. But when you think of X-Men, all of them have different, you know, disabilities, quote, unquote, that are viewed they’re viewed as freaks. I think X-Men just their whole, they’ve always just been kind of like the freaks. They, there’s a lot of community there. There’s the school, there’s the education of each other, the education of the young folks. And I think that’s like the best thing, like the queer community and the chronically ill community, the disabled community can do is make young, is helping young folks not feel isolated. Is to help young, like educate and advocate with young folks. Is to have our community be able to assert ourselves in the world, and advocate for ourselves. You know, we’re superheroes in that way that we’re able to survive this. Like, if you were to give, I at least say if you’d give, like my nausea, or my fatigue, or my body pain, or my head pain, or my dizziness, even my congestion, even my tinnitus, my phantom smells, my like, if you were to give any of my conditions to anyone else, they would fall on the floor, roll around, scream, cry, say, “I’m gonna die,” call 911, say, “You need to come get me now.” And just the fact that there’s so many of us that live with that constantly, for over a decade or years, is like, I don’t get you know, I’m, I’m whatever. The young people and other folks that are even, that are more screwed by our system that they need the platform that should that that should be front and center. And I’m just saying there’s so many of us that survive like this. And that’s like, you know, the fact that we can survive, that is just is a beautiful thing. It just shows how powerful the brain is. And how powerful our community is. It’s like infinite people have helped me in infinite little ways. And it made life worth living with this, you know, so, and that’s a lot of fellow queer folks, a lot of fellow disabled and chronically ill folks, you know.
Joe Coe 16:39
And that’s super interesting. I always felt connected to that story. Because as a, as a gay person in a fairly conservative area, X-Men used their their differences, and it was a strength and it was something that they drew power on. And while they were marginalized by the community, they created their own. And they were celebrated, which was really, really empowering. And I think that Nicky, you said, it’s so well, talking about the connections between the chronic disease community and the LGBTQ community and how we often build our own systems of support, because we might not have it within our homes or within the medical system. We aren’t heard, we aren’t believed, we aren’t empowered to, you know, take control of our lives. So I think that story with the X-Men is a really good one and really interested me. So I’m glad that you like that, too. Do you have a favorite character?
Nicky Smith 17:40
Yeah, you know, it’s funny, like Storm is just the hair is so great. Just the fact that your condition gives you such cool hair. And if my hair wasn’t pink, I have tons of you know, the salt and pepper. So if some day, I just get that natural, like streak silver streak through and you know, Halle Berry. Great. And I don’t know who plays the new young Storm is great, too. And, but also the dude that puts on, I think Evan Peters plays him, where he puts on the glasses and just runs around and like messes with the cops and the military. And I always forget that dude’s name that can run really quickly. That’s just how I like, see the world is I feel like and how I move in the world. I feel like there’s multiples of me every time I take a step that stay behind me because I have you know, such dizziness where the world is moving. It feels like I’m still moving behind me. And so I’m like the least cool version of that superhero. But I just love that. The idea of being able to, you know, move at the speed of light, all those things. When you know, I’m moving at the- light scares me. So yeah. But those, what about you?
Joe Coe 18:45
Storm is my favorite too.
Nicky Smith 18:46
There you go.
Joe Coe 18:47
Storm, and you’re talking, Storm is amazing. And who doesn’t want to control the weather? I mean, like.
Nicky Smith 18:51
I know for us too. Yeah.
Joe Coe 18:54
Like Storm. No, go away. And I think you were talking about Quicksilver, Magneto’s son.
Nicky Smith 19:00
Yeah, what a great name.
Joe Coe 19:02
Amazing. I love, you’re the second person that I’ve had on Talking Head Pain that we’ve talked Marvel, so I might do a spin off one day. Want to just, last couple of minutes that I have with you want to turn back to Jeopardy. And I read that you’ve received a lot of messages from fellow migraine patients after seeing you on Jeopardy. What were some of those messages and how did that make you feel? And has it given you a different purpose or outlook during your migraine journey?
Nicky Smith 19:35
I used to be really big into organizing and advocacy. And then my chronic, you know, vertigo and vestibular migraines hit me, and it was just impossible to keep organizing. And I was bedridden for months. I can’t really do you know, like protests and marches really anymore. I can’t. I used to speak in front of thousands of people. That sounds pretty horrible now. And I used to do tons of screen work, you know, emailing thousands of people and coordinating meetings and just doing endless this kind of stuff. And I just, I just can’t really anymore. But I’ve tried as best as I can to, you know, share resources and do things with folks, you know, who have had brain injuries, I’ve had a concussion, who have these conditions. You know, I only know of a couple people that have had vestibular migraine, you know, 24/7 for over a decade. And it’s just but I hear, you know, cases about, like, especially kids with this. And it’s hard to tell a kid, you know, “Hey, get out of bed, this is your new normal.” But there are kids that I know that, you know, I’ve heard of, that are just they can’t go to school, they’re bedridden with this condition, because, you know, how are they, how are they gonna want to go to school if there’s constantly dizzy? How do they think they’d be able to go to school? And just parents feeling super isolated and alone with this. And the young people in general feeling isolated, and alone with this, and scared. And so I know, when I went to Jeopardy, I think initially, they were like, “Oh, you could talk about how you walk your cat,” and things like that. And I was, like, I knew the best thing that could come out of it is just being able to say the words, “migraine and dizziness,” and you know, “chronic dizziness” on TV. And like, no exaggeration, I’ve probably gotten like 500, 600 messages. It’s only been a couple of weeks at this point. It feels like it’s been so much longer for in every way from people throughout the world. And like the number one thing is, “I’ve never heard anyone else with this condition talk about it. I feel so isolated and alone with it. This is, I can’t go to the grocery store, I can’t do this, I can’t do that. It feels so isolating.” And just be able to connect people to resources, people connected me with resources, like I’m seeing a physical therapist now that’s helped someone with their episodic dizziness. And the physical therapist is seeing me on a sliding scale. And, you know, because my case is unique, which is, you know, a gatekeeper thing like, “Hey, my case is so unique. Will you see me for less maybe,” you know. But just like seeing all those messages, being able to connect people, being able to like, I think it energizes you. And I think, you know, a lot of people talk about the fear of being an advocate, and the fear of, of reaching out and being public with stuff. And I think it, yeah, I’m in a privileged position and lucky position to be able to do that. But I think a big thing for a lot of us is how fatigued we are. And how just debilitating our condition is. And I’m shocked by you know, the messages I’ve gotten, and the support I’ve gotten. I think that’s that enlivens you and energizes you to want to keep doing this work and reaching out to people, which then makes it a stronger community so that when you do have an attack, or when you do when you aren’t able to fully be there, other people can step up because they know what you’re going through. Like from Jeopardy, I would say the greatest experience, like one of the greatest experiences in the entire history of my life, is I finally met another human face to face with vestibular migraine. And it’s because they saw the article someone wrote about me on Jeopardy, and they’re like, “Oh, my God, I live like 10 blocks from you.” And there’s someone else with episodic vestibular migraine that lives five blocks from me. And I thought that was like maybe there was someone in Palo Alto I heard about, you know that as this, but I’m able to look, I mean, I look away from people’s eyes all the time, because I’m so dizzy. But for a half a second, be able to look in the eyes of someone that knows what you’re going to like face to face, that knows what it’s like to have, like constant dizziness for years, is like really just, you know, affirming and moving and, and supportive. And just to know that exists. And we’re out there.
Joe Coe 23:43
I think it’s a good lesson that we can make an impact. We can be on Jeopardy make an impact, or we could be on our school board, or we could be at the grocery store. It doesn’t really matter where we are, we could find ways to make change. And I think that your story, Nicky, really highlights that. I would be remiss or I need to ask, is there any like juicy tea about being on Jeopardy that we don’t see? Like, any behind the scenes drama that we should know about? Anything fun?
Nicky Smith 24:16
Yeah, the first little thing I’ll say is I really appreciate what you do and your organization. In terms of Jeopardy. You know, the funny thing about award shows is there was all that controversy in, I think was the 50s and 60s, with how rigged they were. And so then they heavily monitor them now and surveil them, and there’s like, you know, kind of like Ernst and Young wandering around and making sure everything’s legit. And you’re always mic’d all the time. And people, you go to the bathroom, people are kind of there. Everything’s just really monitored. I always forgot that I was mic’d. And so I’m up there on stage. I forget I’m mic’d. And I’m like, “Oh, I wish LeVar Burton was our host,” or I keep saying things kinda sh***ing on the show a little bit being like, “Oh, I really I missed, I don’t know why they didn’t pick LeVar Burton,” or something like that. And people kept having to come up to me like, “You’re mic’d.” And it’s like, oh, yeah, you know, you go to the bathroom and forgets like, “Oh, you’re mic’d,” you’re like, always mic’d. So that’s, you know, pretty funny in my view. I mean, the stuff we were talking about to, the other genderqueer person and I on stage, we were talking about just really like, kind of radical anti-capitalist history. And then they do this kind of Overheard on Jeopardy YouTube segments, and they’re like, “What are you talking about?” And we’re like, “We’re talking about abolishing the prison industrial complex,” and they’re like, “Oh, okay, yeah, we’re looking for more lighthearted, contestant chat for our YouTube channel, basically.” So, you know, it’s pretty funny. I always say you put me in any situation and inevitably talk about destroying the system created or something. So I don’t know, it was definitely very, very bizarre and funny. Another funny thing is that you come up on on set, in Sony Studios, and you see these huge posters for what Sony Studios is promoting. And they had The Good Doctor, and I’m on the spectrum, and I looked at that I was like, “F**k that show.” But then, of course, they asked a question about The Good Doctor on Jeopardy. And you’re supposed to, like, know that stuff. You’re supposed to know Sony Studios is going to ask questions that they promote, like, at the time your episodes coming out, so whatever. So that’s, you know, just dorky stuff like that. I mean, you do your makeup and, and hair at the Wheel of Fortune studio, which is super small, and then you go to Jeopardy. So that’s kind of funny. They tape five episodes in a day, so you have to bring multiple pairs of clothes. So it’s the illusion that it’s a new day, but really, it’s just go go go hair again, put on a different shirt and run out if you win, so yeah. It’s definitely a lot of like illusions and you know, they do a lot of cuts and things people mess up it’s it’s definitely pretty funny. Yeah.
Joe Coe 26:47
I love the hot mic, Nicky. Throwing shade at the host.
Nicky Smith 26:52
I know, I you know and the nice thing about Ken is he, you know, I you know, whatever. They’re like. Hey, Ken, if you listen to this and you want to reach out and you want to donate go for it. But like a lot of the people on the show and stuff, I mean when you mention that you have dizziness or migraines, everybody knows someone with migraines. Most people know someone dizziness, it’s the number two reason people go to the ER and urgent care. Like and then they just go, “Oh you have this,” and you connect with them and you connect with everyone with it. And so I think that’s something to learn from anything as you mentioned like people on your school board, people at your work people, you know. Everyone you know knows, odds are knows someone with migraine, knows someone with dizziness, or has those symptoms. And if you talk about the symptoms, they go, “Hmm,” and for example, these Prism glasses are like a godsend. And the person I met with vestibular migraine, she’s had it for years, she has never even heard of Prisms. And these, you know, and just stuff like that. Like, you know, I constantly talk about my Prisms. For people with brain injury, like I’ve had people with learning disabilities, with migraine, with you know, dizziness, what have you. There’s so many resources out there that we don’t know about that can help us and just yeah, you know. I hate to say don’t give up but like literally there’s so much stuff out there. And the system tries to make us give up as we talked about before but there’s there’s endless stuff coming out that you’re promoting or that you’re you know, making folks aware of and stuff so yeah. Thanks for what you do.
Joe Coe 28:20
Well, thank you for joining us today. This was fun Nicky. We you know went into it. We started with animal sacrifice and we ended with building a better community together so I think we really, really run the the gamut and it’s been an amazing discussion. Thank you for listening to this episode of Talking Head Pain, the podcast that confronts head pain head on. If you liked this episode, please leave an honest five star rating and subscribe so you never miss another. I’m Joe Coe, and I’ll see you next time.
Narrator 28:57
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this special episode of Talking Head Pain, Joe speaks with Dr. Eric Kaiser, a professor and neurologist at the University of Pennsylvania. Learn about sleep and cannabis research presented at the American Headache Society, and the inspiring work being done to better serve LGBTQ headache and migraine patients.
American Headache Society Scientific Meeting: Sleep, Cannabis, Health Disparities + Other Research Highlights with Eric Kaiser, MD, PhD.
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:10
Hi, this is Joe Coe, host of Talking Head Pain, the podcast that confronts head pain, head on. I’m here with Dr. Kaiser, and he’s going to share some really interesting research that he is come across at the American Headache Society’s annual meeting. You’ll also hear from him about some of the work that he’s doing to help address the health disparities in headache and migraine care that are related to the LGBTQ community.
Eric Kaiser 00:39
Hi, my name is Eric Kaiser. I am soon to be assistant professor at the University of Pennsylvania, where I am a headache specialist and researcher focused on studying photophobia and migraine
Joe Coe 00:53
It’s such an interesting topic, Eric, and I’m really glad that I get to talk to you today to hear what you’re hearing about the state of migraine research for patients at the American Headache Society Scientific Meeting.
Eric Kaiser 01:06
Well, thanks for having me. I’m excited to talk about some of the thrilling research that’s going on here
Joe Coe 01:13
So can you give us some examples of things that you think patients should know?
Eric Kaiser 01:17
Yeah, I think there’s a lot of exciting research that’s happening, both kind of at the preclinical, as well as the clinical stage of things. For instance, this morning, there was a really exciting talk that was using some pretty exciting technology to look at how sleep maybe, sleep disturbance particular, leading to increased aura and using rodent models to be able to be able to demonstrate that and I think it could lead to really a better understanding of how sleep and headache might be interlinked between them. And then there was another great study that was done that looked at cannabinoids. So this includes how THC and CBD may be able to decrease light sensitivity, using a rodent model, I think will have real great applications for patients as well. There was another interesting clinical trial that looked at using artificial intelligence to be able to identify patients who may have atrial fibrillation, which could increase the risk of stroke and found that people with migraine with aura have higher rates of atrial fibrillation that hasn’t been detected. And that may be a factor that leads to increased risk of stroke for those individuals. And then this afternoon, there was a really interesting kind of discussion about how we may need to adapt what outcomes we look at in clinical trials to really better represent the patient experience and how they may respond to preventive and acute medications in the real world.
Joe Coe 03:01
So it seems like there’s been a lot of ground covered in the past couple of days at the American Headache Society. How do neurologists and other health care providers prioritize how they absorb this information? How do you approach a conference like this?
Eric Kaiser 03:16
Yeah, I think it’s, I think, you know, being present and attending meetings is really where you’re getting some of the cutting edge research, sometimes things that haven’t even been published yet. And so it’s really exciting to be in that space and, and then to be able to talk with those people in real life as well.
Joe Coe 03:35
It’s amazing and so important that people are here doing that work for us, as patients. I was reading your bio, and I thought it was super interesting that you did some work and awareness around the LGBTQ community and migraine, headache, and neurology. Can you speak a little bit more about that work?
Eric Kaiser 03:54
Been working with a number of collaborators from across the country, to try and outline this kind of state of the scientific literature as it relates to individuals who identify as transgender and gender diverse. And think about how, really the lack of research that’s out there, and how this population is being underserved, and both from a research and a clinical perspective. And so having kind of initial discussions of this is what the state of the literature is, this is how we can provide a more welcoming and affirming clinical environment to increase access for gender minority patients. And then what things should we be thinking about as it relates to potential effects of headache and gender affirming hormone therapy. And where do we go from here? How can we increase research in this area? What can we do to improve our clinical practices for really the stigmatized population?
Joe Coe 05:08
If you live in the US and you want to stay in touch with Talking Head Pain, text the word HEADACHE to 1-845-285-1563. That’s HEADACHE to 1-845-285-1563 and you will receive headache and migraine related resources, giveaways, and the latest Talking Head Pain episode releases.
Narrator 05:32
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this special episode of Talking Head Pain, Joe speaks with Howard Rosen, the CEO of the American Headache Society. Learn about the history behind the American Headache Society — and how the research presented at their meeting helps patients and providers alike.
American Headache Society Update: A Brief Discussion with AHS CEO Howard Rosen
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:10
Hi, I’m Joe Coe, host of Talking Head Pain, the podcast that confronts head pain head on. I’m here at the American Headache Society’s Annual Science Meeting in Denver, and I’m with the CEO of the society, Howard Rosen. We’re going to hear from Howard about what the society does and how they’re helping neurologists and patients.
Howard Rosen 00:30
Howard Rosen, I’m the CEO with the American Headache Society. And my role is really one in which it allows me to work with talented, dedicated individuals who support the society, and also physicians and other providers who are volunteers.
Joe Coe 00:53
That’s amazing, Howard. And for those that don’t know, what does the American Headache Society do, and how does it help neurologists help patients?
Howard Rosen 01:01
I’m very proud of our mission. It’s to improve the lives of people with migraine and other headache disorders. So we’re a professional society, yet our mission and core goal is to improve the lives of people with headache disorders. That, to me, is an awesome mission to work as a part of. We’re largely an organization of neurologists but I think it’s important for your listeners to know we have primary care physicians, we have nurse practitioners and physician assistants, we have those with dental degrees, we have researchers, we have clinicians. And thanks to this sort of new phase of migraine, we have more than 2000 people who call themselves members of the American Headache Society.
Joe Coe 01:51
That’s amazing. It’s such a great point to bring up the other healthcare professionals outside of neurology that treat so many of us. Really, really critical. So we’re here at the American Headache Society’s Scientific Meeting. What research, Howard, do you think our listeners would find to be most impactful or exciting?
Howard Rosen 02:12
It’s very difficult question to answer. It’s almost like of your children, which is the favorite. We have, you know, hundreds of abstracts submitted to this meeting. We have four days of content. So I think from my perspective, I’ll offer three examples that are more illustrative of the broader set of data that we’re seeing. We have a study looking at the prevalence of migraine remaining stable, yet the disability has increased in the US population. It’s really interesting, from my perspective. We also have one that looks at children in the disability of headache during the COVID period. Again, sort of what’s happening in and around headache that people are experiencing today and most recently. And then I think the third group, I would say is, your listeners should know that there is a tremendous amount of new data on new therapies, new treatments that are either currently on the market or on the near term horizon. I think, you know, while there’s never a good time to be a person with migraine or another headache disorder, this is one of the best times because there are so many tools available today.
Joe Coe 03:33
And that hope is so important for us to know that if we’re on a treatment that’s not working, that there are other options, or if we haven’t found the right treatment, that there are scientists and researchers and neurologists and others that are fighting to get that for us. Howard, is there anything else that you think our listeners should know about the American Headache Aociety, this meeting, that we didn’t cover?
Howard Rosen 03:54
I appreciate that question. And I don’t think it’s a 30 minute interview. But what I would say is our organization, I think even healthcare professionals who aren’t part of the society, is made up of clinicians who really care about patients. And there is this sense of we can do more and need to do more. Our objective here at this meeting is to not only educate people who are interested in headache, but grow the number of physicians who focus on headache as part of their practice to meet the needs that we know that are out there.
Joe Coe 04:36
If you live in the US and you want to stay in touch with Talking Head Pain, text, the word HEADACHE to 1-845-285-1563. That’s HEADACHE to 1-845-285-1563, and you’ll receive headache and migraine related resources, giveaways, and the latest Talking Head Pain episode releases.
Narrator 05:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe talks with Robert Cowan, MD, about research on chronic/episodic migraine and how access barriers harm patients.
American Headache Society Update in Under 5 Minutes with Robert Cowan, MD
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Joe Coe 00:10
Hi, this is Joe Coe, host of Talking Head Pain, the podcast that confronts head pain, head on. I’m here in Denver attending the American Headache Society’s Annual Science Meeting. I got to catch up with Dr. Rob Cowan to learn from him what he’s hearing about migraine and how it impacts our patient community.
Dr. Robert Cowan 00:30
So my name is Rob Cowan, and I’m a neurologist at Stanford, doing exclusively headache medicine and headache research.
Joe Coe 00:39
That’s amazing. And we’re here in Denver at the American Headache Society. What are you finding most insightful or interesting?
00:46
Well, today is still the first day, so we’ll have to see. But I’m seeing some some very hopeful trends, hopeful for patients. In particular, I think we’re starting to see that the notion of episodic versus chronic migraine is not a black and white situation, you know, it’s not like being pregnant. You either have have you have episodic, and then suddenly, you go from 15 days to 16 days. And now you have chronic migraine. We’re starting to understand that it’s a process and we’re starting to look more carefully at the slope of that curve, if you’re increasing your headache frequency. One of the big changes we’ve, we’ve seen recently is we now have medications that have an indication for both chronic and episodic migraine, which I think is smart. You know, most of us are much more worried, and patients are much more worried if they’ve gone from four headache days a month to nine headache days a month, than if they’ve gone from 14 Headache days a month to 16 Headache days a month. So I think that’s a very positive trend. We’re also seeing increasing attention to the hoops that we all have to jump through to get new medicines. Traditionally, we’ve had to try older, more familiar medicines, which have a weaker evidence base and more side effects than newer medicines. And that’s largely because of the economics. Insurance companies don’t want to pay for expensive medicines if they can get away with cheaper medicines.
Joe Coe 02:27
So you’re talking about prior authorization and step therapy?
02:30
Yeah, exactly. Exactly. There’s a very interesting poster at this meeting by Meredith Barad, from our group. And what they did is they actually looked at the evidence base for the tried and true the, you know, propranolol and nortriptyline medications, and compare that evidence base, looking both at efficacy and side effect profiles with the newer and obviously more expensive medications that require a prior authorization and a stepped trial of these older more familiar medicines.
Joe Coe 03:10
And what did they find?
03:12
What they found and you know, you should you should talk to Dr. Barad about this because it’s her work. But what they found basically is that the evidence for the older medicines is much weaker, the side effects are much worse, and probably, and they didn’t go this far but I can because it’s not my study, probably it turns out in the long run that, not only is it worse for patients, but it ends up costing more. You spend more time with comorbid illnesses, you spend more time in the emergency room, more time visits, more experimentation with medications, rather than going to the best medication first.
Joe Coe 03:51
Amazing. Well thank you so much for your insights. I’m sure our community will appreciate them.
Dr. Robert Cowan 03:56
Absolutely.
Joe Coe 03:58
If you live in the US and you want to stay in touch with Talking Head Pain, text the word HEADACHE to 1-845-285-1563. That’s HEADACHE to 1-845-285-1563 and you will receive headache and migraine related resources, giveaways, and the latest Talking Head Pain episode releases.
Narrator 04:21
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
When migraine had her down for the count, Cat got back up and fought back. She drew from her martial arts training and experience living with migraine to create her non-profit Chronic Migraine Awareness, Inc. In this episode, Cat joins Joe to talk about what she’s learned during her journey and the advocacy work she does around the globe.
EXTRA- Martial Arts and Migraine
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Cat 00:10
Discipline I thought was, you know, push ups and jumping jacks and, you know, taking yourself to the gym every day. And I learned that discipline also allowed me to be able to endure living with the pain of migraine.
Joe Coe 00:24
Welcome to Talking Head Pain, a podcast that confronts head pain, head on. I’m Joe Coe, Director of Education and Digital Strategy at the Global Healthy Living Foundation, and a migraine patient for 20 years. One of the things I love about doing this podcast is getting to hear from people like you, our listeners. And today I wanted to start by sharing one of your comments. FloVon says, “This pod and its host have given me the resources I need to discuss my care plan with my doctor in a more direct way. Migraines can upend your world and it’s so nice to have a guide through the world of treatment, and how to get what I need to live a more normal life.” I totally agree. And thank you so much, FloVon, for that positive review. If you like what we’re doing here on Talking Head Pain, please go over to Apple Podcasts and give us an honest five star rating. And wherever you’re listening, be sure to hit that subscribe button so you never miss an episode. Like FloVon said, migraines can absolutely upend your world, and learning to live a happy and healthy life with migraine can lead someone on a deep and profound journey. This is the experience of today’s guest, Cat, the founder of Chronic Migraine Awareness Inc. Cat is one of my closest friends in the advocacy community and one of its most inspiring members. Before we get into the episode and hear directly from Cat, please be aware that throughout this episode, there are discussions surrounding suicide and mental health. If you’re struggling with suicidal thoughts and need someone to talk to, know that you’re not alone. Please call the Suicide Prevention Hotline at 1-800-273-8255. I am here with Cat from Chronic Migraine Awareness. Cat is an amazing advocate and a longtime supporter of GHLF. We love Chronic Migraine Awareness Inc., and is just a good friend and I’m really excited to talk to Cat today to learn more about her organization and her story. So Cat, how are you feeling today?
Cat 02:27
I’m doing pretty good today. It’s a rarity especially being this time of the year but so far so good.
Joe Coe 02:34
What about this time of year is rough for you?
Cat 02:37
I think it just the seasons in general I find a lot of, I have a lot of weather triggers. Whether, you know, I can feel the barometer pressure dropping or changing. And I feel that in my head. So that just aggravates the symptoms that I might be feeling already. And I typically for some reason, this time of year, March, is where it peaks and then I’ll sometimes I’ll get a pop and it will just get better. That’s where I’m at right now. Like, so far so good. We haven’t gotten to the point where it’s horrible. And if it gets better from here, I’m golden.
Joe Coe 03:13
I’m glad that you’re having a good day today and that it’s being spent with me.
Cat 03:18
Absolutely. You are my favorite, Joe. You were the only podcast I listened to.
Joe Coe 03:23
Well, thank you. So Cat, when were you first diagnosed with migraine? How long have you lived with it?
Cat 03:28
I didn’t get diagnosed until 2003. And it was mostly because of my sensei, who I was, I was taking martial arts, Kempo martial arts. And he also has lived with migraine since he was a child and he was able to recognize the symptoms in me. But I would say the first time that I had something that I knew was a migraine was when I was about 12, 13. And I felt like this knife in my head. And then I lost vision peripherally, it was I mean complete tunnel vision. And then I couldn’t feel my left hand. And I went home and I told my dad and he said, “Take an aspirin and lay down.” So I took an aspirin and I lay down and then I threw up and I slept and you know, I felt okay, I guess. You know, whatever my normal was back then. And I didn’t have another migraine like that until the year 2000. So as far as I knew, I only had two migraine at that point. But what I have learned since then, is that I’ve had symptoms going back to maybe like seven. I remember, you know trying to learn to read and the words disappearing on me. And my mom getting so mad at me, you know because I wasn’t reading the words, I didn’t see them so I couldn’t read them and she would get so frustrated. And then you know brain fog and just you know so many like, like things that you can have. I didn’t know you could have a silent migraine and that’s probably what I was dealing with for years until by the time 2003 came around, it was just so bad that you know, I was already chronic.
Joe Coe 05:06
Two questions, follow up to that. One, what’s a silent migraine?
Cat 05:10
It’s a migraine without the pain. You have all of the other symptoms, you have the aphasia, which is like where you forget your words. You can have, you’d be very lethargic, you just, I call them my jello days. Brain fog, did I say that already? Because that’s how brain fog works. Like I said, that is pretty much all the symptoms you could have, you know, maybe even have the nausea and stuff like that. But you just, you don’t have that agonizing pain that people think of when you think of a migraine.
Joe Coe 05:41
And that’s important for the listeners to know that migraine can be more than head pain, and often is.
Cat 05:47
I mean, really a migraine, and I say this and dating myself in the phrase, that it’s a canary in the coal mine, because it really is a signal that you have something else going on that you need to pay attention to. Some other you know, underlying issues that you know, might, your body is literally screaming, you know, ding, ding, ding, you know. “Warning! Danger, Will Robinson!”
Joe Coe 06:10
How did your sensei help you?
Cat 06:13
Well, he was the one, he like, I started getting light sensitivity. I wore glasses my whole life. And in 1999, I had LASIK surgery, so I didn’t need glasses anymore. And then after that, I started noticing, “Wow, my eyes are really sensitive to light.” But they were always sensitive to light, but I never paid attention to it before. It was once, it’s sort of like you know, when you get a new car, and then all of a sudden, everybody’s driving that car everywhere, you know. So once I, once I kind of called attention to a symptom, I was like, “Wow, this is happening more and more and more.” And like I said, once I understood all of my, put it all together, I could go back to childhood. So you were having it back then too. You just didn’t know that’s what it was.
Joe Coe 06:50
Do you still practice martial arts?
Cat 06:53
I haven’t, I had to quit in 2009. I was working on my third degree black belt at the time. And it just got to be too much; the screaming, the throwing, the getting hit. All that stuff. You know, I just I couldn’t, I couldn’t do it anymore. I miss it. miss it so much.
Joe Coe 07:09
Sounds like it was a large part of your life.
Cat 07:12
I was doing I did it for eight years. It really was a lot of fun. My kids were in it, my husband was in it, you know, my husband, Chris. You know, and it was, we would we would just go there and laugh and have so much fun. And you know, every other shot is a hit to the groin. So what’s not funny about that, you know.
Joe Coe 07:30
Took me a second to register what you were saying. And I was like, “Oh, yes.” That doesn’t sound like fun to me, but to each their own. One other question about martial arts, was there anything about martial arts that helped prepare you to live with a chronic disease?
Cat 07:47
Absolutely, yeah, actually, I have a tattoo on my back of a lotus flower. And, and the Kanjis for the school, which is respect, discipline, and self control. And when I when I started, you know, I thought oh, respect is, you know, bowing, and yes, Sensei, no Sensei. And I learned, no, that the respect was about the respect that I had for myself, and that I was deserving of good health care, and that I deserved to be healthy and be able to enjoy life and do those things. Discipline, I thought was, you know, push ups and jumping jacks, and, you know, taking yourself to the gym every day. And I learned that that discipline also allowed me to be able to endure living with the pain of migraine. In 2013, I was planning my suicide because it was so bad. And, you know, there’s many times where I thought, after, you know, going through this whole series of attacks from migraine, I felt like I had ranked up. Like, you know, by now, I think I should be like, sixth degree or something if there was a black belt for migraine. And self control, you know, there’s a lot to that too. Again, I thought that maybe it was you know, not punching people in the face when they pissed me off. But, you know, it’s more about learning, when to talk and when not to talk, when to listen. And, you know, and also to it, how to use the energy that people are throwing at you to give it back to them in a positive way or a way that, you know, you don’t necessarily have to take a punch to the face, you can just divert it and change it and just change that flow of energy. So and going on again, still rambling about the flower is that the lotus flower represents the struggle that you have to do, you have to, to become the person, the beautiful flower. It has to struggle up through the mud and the water in the muck.
Joe Coe 09:54
That whole discussion around discipline, respect, that really is applicable to, to our diseases. And it’s about respecting our bodies and ourselves and our boundaries. I think that’s a really important aspect that we don’t talk about a lot.
Cat 10:11
You know, being a woman, you know, there’s, there’s a side to that where, you know, a doctor or any man tells you this is what it is you go, “Okay, well, you know, I trust you, you know,” but we have to be able to stand up for our selves and say, “No, I don’t accept this.” The first diagnosis I had, when I went, the doctor said, “Maybe your ponytail is too tight.” You know, and if I had just listened to him, you know, where would I be right now, you know, maybe I would be dead. So you know, again, that respect is, we deserve it. You know, this. There’s no reason why we shouldn’t be living our best lives.
Joe Coe 10:46
I’m deeply glad that you’re here. And I have a really important question to ask. Have you watched the reboot of Karate Kid on Netflix?
Cat 10:54
I have tried. I’ve tried.
Joe Coe 10:58
Not a fan?
Cat 10:59
It’s really corny. Although, you know, fun fact. My Grandmaster was actually a consultant on the original Karate Kid. So the whole wax on, wax off. That’s my system. It’s the Kempo system.
Joe Coe 11:12
That’s so interesting, because I was gonna ask you, if you were like, Cobra Fang, or Cobra Kai, I don’t even know the name, Eagle Fang. And, but it was a fun, it’s a fun show. It is corny.
Cat 11:24
It’s corny. Yeah,
Joe Coe 11:25
It’s fun. You’re like, “I know that that’s not accurate cause I practiced it.” So I want to talk a little bit now about how you’ve turned all of these negative experiences of living with migraine into something positive. You founded a nonprofit, you’re going into your 10th year, right?
Cat 11:45
Yes, yes.
Joe Coe 11:47
Can you tell us about Chronic Migraine Awareness and what 10 years of doing this you’ve learned and what it means to you?
Cat 11:53
Going back, you know, like I said, almost 10 years ago, I was also you know, planning my suicide. So when people were thinking- I was suicidal at that point anyway. You know, and somebody had suggested to me, you know, like, “Oh, well, well you’re miserable, and suffering and struggling to find help, you should start a nonprofit.” And I thought that was a terrible idea. So I did it. And I found also out that I think one of the things that really struck me after I had to quit Kempo was that I was left with nothing. I wasn’t a wife, I wasn’t a mother, or a sister, or daughter or cousin or friend. Like all of those roles that I was before, all taken away from me. And I was living in my basement cave, which was also my laundry room. And I felt like “Okay, well, now I have no purpose, and I’m a burden, and what am I doing?” But within this, my search of trying to find help for myself, I found all of these other people like Dorothy going into the wizard, you know, trying to find the wizard. Everybody looking for a new brain, said, “Oh, come with me, well, we’ll just you know, we’ll see what we can find together.” And those people, they supported me. And also I found that I did some, I did have something to offer, despite being disabled and being, you know, stuck. I mean, really, it was just my computer, it was just a keyboard. And because of that I connected to so many wonderful people. And then that also, of course brought me to you, which I have my my first friend in the coalition community. It’s been fantastic. And to know that, even if I was able to help one person, and I’ve helped more than one person, I’ve helped thousands of people. We have 50,000 people in, like, you know, globally. We’re in Canada, Australia, New Zealand, UK and Ireland. I mean, plus, those are major groups that we have, but then we really literally have people all over the world. So that’s, I mean, that makes me feel good to know that despite being disabled, I still had something valuable, valuable to contribute. And now we have other people doing the same thing within the community. If you want to hear from one of Cat’s moderators and members from Canada, Sean McAvoy, I interviewed him in season one of Talking Head Pain, about his experience in the military in Canada and being a man with migraine. And your organization, Cat, does such amazing work. I see what you do in the Facebook support groups and the community that you build and that is so important. What have you learned by doing that in 10 years? Is there a common theme that keeps coming up every year that you see? People still need the same things. They need to know they’re supported. They need, there’s a lot of caregiver burnout for the people that they’re with. So, it’s trying to live with your own disease and making sure that you’re getting what you need but also the partner that you’re with, whether it be husband, wife, whatever, you know, mother, father, brother or somebody, you know, best friend. I have, one of my best supporters is my best friend and she did things for me like taking care of my kids when I couldn’t, you know. She went on a little trip on a vacation, she would take them with her like, those things matter.
Joe Coe 15:20
I totally agree. It’s the heart of chronic disease. It’s, you know, finding support. People feel very confused. Even with such a common disease like migraine, that there’s so many, like outliers, or differences and access issues around the treatments and finding the right doctor. I know my inbox gets flooded since I’ve done this podcast from friends and people connected to me that are like, “Oh, I need help here,” or, “I don’t, my doctor is not doing this. And I heard you talk about that.” And it’s really surprising how much information is still missing. And Chronic Migraine Awareness fills a very big void in that by being on the frontlines and being on the grassroots, talking to people that are on the internet looking for information. So I thank you for all of that work.
Cat 16:22
Thank you, Joe, I appreciate that. I appreciate that you appreciate us. I would say one, one of the other things that we have been able to do is start an advocacy group, which is ARMS. And it stands for Advocates Removing Migraine Stigma. And stigma is a huge part of why we don’t get the help we need. Because we’re ready just to like you said, it’s not just a headache, it’s, it destroys lives, it destroys, you can’t do your job, you can’t be who you want to be. And, but also too, I think that you know, people with as far as advocacy goes, that some people feel like you have to go and you know, stand on a platform and give speeches, but you can just you can be an advocate by just speaking up for a friend, you know. Going to those appointments with them, or, you know, defending them against family family is like the worst when it comes to trying to get them to understand something new. So if you are a friend of somebody who has migraine, you can stand up for them and defend them. Or if you have migraine, you can also, you know, do things, you can take it small, you can just share graphics on on Facebook, or if you want, you could do big things like join the 50 State Network. And also, we go to Headache On The Hill, with Zoe, that’s a big part of that, you know, too. There’s, there’s so many ways to advocate however you want to do it. If you want to just do a little thing. You know, like I said, just you know, share a pen, share a graphic, or something. Or if you want to be a big mouth like me, and you know, get up and tell,you know, tell people that this is stuff that’s going on, there’s a place for you to do that, too.
Joe Coe 18:05
Thank you so much for the plug for GHLF’s 50 State Network. Folks can find more information about that at 50statenetwork.org. And that’s the advocacy arm, much like ARMS, of the Global Healthy Living Foundation. So Cat, how do people find information about your nonprofit? Where would you direct folks to go?
Cat 18:26
Well, you can go to our website at chronicmigraineawareness.org. We have, you can find everything about our organization there. Also you can go onto Facebook and we have private support groups, so they’re closed. If we know that family is trying to get in, we don’t let them in. So you have a private place to vent. And we have groups for men, women, moms, we have an off topic group so people can just talk about whatever. We have our main group where people could just discuss just the facts, you know, the nitty gritty of medicines and whatever. And then we also have a craft group for those people who like to do things partly to maybe like for their own mental health but also too, they’d like to create. And then we are able to sometimes use these the crafts that people are making and they donate them to us and then we can be able to distribute them out into the community.
Joe Coe 19:21
That’s a lot. That’s amazing. I didn’t know you had a crafting group. I don’t craft so why I don’t really know about it. Oh, my craft is different.
Cat 19:31
Your craft is in the word.
Joe Coe 19:33
I have a different craft. My craft is my face for radio. It was, as always, such a delight and pleasure to speak with you. Your energy and passion, I always feel it. And the collaboration, support, and just knowing that there are people like you, for people that are listening out there that have been through really tough times and have ways to help you throw it. Thank you so much Cat, for trusting us and for sharing your story. Cat ‘s story teaches us that you can find meaning and happiness in the most fascinating of places. She found her is in a martial arts dojo. Meanwhile, I find my happiness through advocacy and this podcast. So I leave you with a question today. Where do you find your meaning and happiness? Thank you for listening to Talking Head Pain, a podcast that confronts head pain head on. If you enjoyed this discussion, please give the show an honest five star rating and subscribe so you never miss an episode. I’m Joe Coe, and I’ll see you next time.
Narrator 20:44
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
The way Jaime Sanders expresses herself is the key to managing her migraine. Whether it’s fashion, makeup, or hair, Jaime owns her unique identity, an identity which provides her an outlet for advocating for others with chronic illness. In this episode, hear why Jaime calls herself the Migraine Diva, and how it touches everything from her migraine advocacy to the need for self-care.
“I really try not to focus on what happened yesterday, or what needs to happen tomorrow,” says Jaime. “I need to reserve my energy for the 24 hours that I’m currently in.”
Season 2, Episode 5: Jaime Sanders, the Migraine Diva
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Jaime Sanders 00:09
The great thing about the headache and migraine community is that they are willing to learn and listen and do better. I just wish there was more representation. And there was just more than my voice speaking on this because it will make a bigger impact.
Joe Coe 00:22
Welcome to Talking Head Pain, a podcast that confronts head pain head on. I’m Joe Coe, Director of Education and Digital Strategy at GHLF. I’ve lived with migraines for over 20 years, so I understand what it can do to your life. Today, we have The Migraine Diva, someone who I consider to be a longtime friend who has officially anointed me Migraine Diva Number 2. I wear that title with pride. So how are you doing today, Jaime?
Jaime Sanders 00:56
I’m doing okay, I’m having a bit of a rough morning. But I’m here like I always am.
Joe Coe 01:02
We’re gonna make it better, I think, I hope, after our conversation. So what is the tough morning for you?
Jaime Sanders 01:09
Well, this particular morning started with a really severe occipital neuralgia attack around three or four o’clock this morning. And it’s been ongoing ever since. So what that feels like for me is intense pressure at the back of my head. And this time it’s on the right side. Feels like somebody’s drilling into the back of my head and like stabbing at the same time. It’s really intense. There isn’t much I can do for it. But it’s flaring up because Botox is due and I get that next week. So it’s rearing its ugly head. So I’m just gonna have to deal with it until next week, I guess.
Joe Coe 01:48
I get Botox next week too. We’re Botox twins! So I want to know, Jaime, what is a Migraine Diva?
Jaime Sanders 01:57
Migraine Diva for me is a way for me to hold on to my identity. And for me, that’s someone who loves creative outlets, specifically makeup and hair and all of that stuff that I identify with that just allows me to create different personas or express the way I’m feeling on a particular day. And that’s something I’ve always loved since high school; fashion, makeup, hair, I just always loved it. And it’s not for any vanity reason. It’s just a great outlet for me. And so when I started my blog, and I was trying to think of what to call it, that kind of popped in my head, I’m like, you know, that sounds like it’s glamourizing migraine, but it’s really about my own self identity. And you know, living with chronic migraine and intractable migraine, you really lose yourself within the disease because you’re dealing with it nonstop 24/7 365. And so I really needed to start to pull back from identifying with my disease and personifying my symptoms, and really learning to recognize that I am still the same girl I was back in 1993 with the same passions and love for creative things. So that’s where that comes from. And that’s what a Migraine Diva is for me,
Joe Coe 03:23
I love it, and I want to know what is a Migraine Diva tip for someone to look good and feel good?
Jaime Sanders 03:30
It’s whatever drives you, whatever your passion is, whatever your love for something is just don’t give up on that. It could be anything. It’s just taking that time to do what makes you feel good and really pouring into yourself. I think that will make anybody a diva because you’re prioritizing your own needs, your self care, making sure your whole. That’s what is important to anybody, regardless of your race or your gender. It’s taking care of what makes you you and fulfilling your needs and making sure you’re okay by whatever means that is. Go ahead and do it.
Joe Coe 04:08
So you talked about your passion being makeup and hair and fashion. What are some of the trends that you’re loving right now in that world? And what are some that we should maybe steer clear of?
Jaime Sanders 04:21
Okay, so I’m gonna be honest, I don’t really follow any trends.
Joe Coe 04:24
You make the trends?
Jaime Sanders 04:26
Yeah, you can say that. I mean, I know what looks good on me. I think I do pretty well with making colors work with each other. Honestly, what my trend is usually is loungewear and lots of pajamas because I spend so much time in the house. But that doesn’t mean I can’t sit at my vanity and beat this face to the gods. Okay. I’m not a big follower of trends like I was back in high school. I mean, I used to love Isaac Mizrahi and then like watch all the supermodels like Naomi and Linda Evangelista, all of those icons. But I really don’t have time for that. I don’t have the budget for that. I just wear what makes me feel good, what makes me feel confident. And I really try, I think what I’m doing more now, is trying to wear more bright colors like the orange I’m wearing today. Like I usually wear darker colors, especially since I’m a bit overweight, black and dark colors are my friends. But I’m trying to brighten up my wardrobe. So that’s what I’m trying to do just trying to incorporate more colors and be more vibrant. And then that gives me an opportunity to play more with the different palettes I have and wear brighter colors on my face that I normally don’t. So that’s my trend.
Joe Coe 05:40
I love that. And for our listeners who may not know what beating your face is, it’s not actually beating your face. It means putting on really good makeup. I recently told my sister in law, I sent her to a makeup artist for a wedding that she was attending. And I said, “Tell them that you want your face beat.” And she goes to my friend, “I want you to hurt my face.” My friend was like, “Oh, sweetie, you meant beat your face.” We don’t want our faces to hurt when we have migraine. But we like a beat sometimes, get a little color, get some freshness there. So yeah, and your makeups looking amazing today, by the way.
Jaime Sanders 06:19
Thank you. And let me tell you, it’s a struggle for me to apply a face of makeup because I have trigeminal neuralgia also. So touching my face with any of my makeup brushes, just applying makeup. Right now I have so much pain around the side of my face. And putting on eye makeup causes this eye to just run. Trying to put on liquid eyeliner and mascara is like troublesome because I have like black streaks going down my face. So it takes a while. It is a painful process for me. But I endure it because usually the end product is worth it, so.
Joe Coe 06:55
But I think it’s important that we acknowledge that, for some, putting on eyeliner is going to be a big task. For others. It’s something that people take for granted. And we need to be gentle with ourselves around what we do to make ourselves feel better. So find that inner Diva in you, like what you were saying about earlier, Jaime. Defining that for ourselves is so important when we live with chronic disease. And it’s one of the reasons why I’m drawn to you and your energy, because you impart that spirit and that wisdom in all the work that you do.
Jaime Sanders 07:28
Yeah, that’s important for me, because it keeps me in line with what I discuss and what I share. Keeps myself accountable for taking care of myself. You have to walk the walk, not just talk the talk. So it’s a great way for me to practice what I preach. And sometimes we’re not always good at taking care of ourselves and putting ourselves first and doing what we need to do to make sure that we’re in a good, safe, protected space. And specifically living with chronic diseases, so much of our time is occupied with managing that and doctor’s appointments. And that’s outside of what your life looks like whether you’re in a partnership, you have children, you’re in a career, or you’re in school, it doesn’t stop life from happening just because you have a chronic illness or disease. So it takes a lot of energy to manage and balance all of that. I try to make sure to let people know that it’s not necessarily always about the huge accomplishments that you have throughout the day. If you’re able to do something that you weren’t able to do the day before, make sure that you congratulate yourself on that because it’s the little wins that really make a difference. And really not the big victories all the time. Because personally for me, I don’t have a lot of those. So the fact that I was still able to get out of the bed today and managed to put this face of makeup on and sit here and look and sound intelligent. That’s a big win for me, because yesterday, I wasn’t this way at all. So it’s important for me to make sure that I give myself grace, and just take it one step at a time and one day at a time. I really try not to focus on what happened yesterday, or what needs to happen tomorrow. I need to reserve my energy for the 24 hours that I’m currently in. Having that mindset is not only helpful for how I paced myself, but it’s also a way for me to manage my mental health and not spiral down into that anxiety of oh my gosh, this is going to happen and I’m not prepared for it, which can then trigger the depression and I have to be very mindful of where I let my mind go. So just staying focused on the day that I’m in really helps me get through each day of the week.
Joe Coe 09:50
So true. It’s really important to celebrate the small victories like you said, and we don’t do that as a culture enough. Cheers when we drink a glass of water, like that’s an accomplishment. We’re drinking more water, which is what everyone says to do. And it’s not easy to do. So cheers when you have a cup of water or a glass of water. Jaime, something about you that’s so unique in this community is how vulnerable and real you are about, not only your struggles with migraine, but also mental health, depression. And you started to talk about that. How has being an advocate and being a visible force in this community, as a migraine patient, as a black woman, both positively and negatively impacted your mental health?
Jaime Sanders 10:37
Positively, I think what it has done for me, and I think for a lot of the community that doesn’t feel like they’re represented, say, in like support groups or advocacy groups is, it validates their experience and their journey. It was important for me specifically as a woman of color to highlight what it’s like for me, for my family, what legacies I come from, and what I’ve had to learn growing up, and how that impacts the way I interact with the healthcare system. It’s very different for marginalized groups. And that just was not being talked about. And I felt like I needed to make sure I uplifted those voices, because if I’m going to be in this space, and advocate, I have to make sure I’m true and honest about those experiences that just are not discussed. I also wanted to make sure that I use this opportunity to talk about communities that were just completely ignored. It was my responsibility to do that. And especially since growing up, I received my health care at a federally qualified health center. And I saw low income marginalized communities get great care. And that specific center made sure that everyone that worked there, from housekeeping up to the board, represented the community that they were working in. It was extremely diverse. And I was able to see physicians and dentists and nurses of all races. And that really informed the way I saw healthcare growing up from the age of 5 to 18. That’s a very impressionable part of your life. And I knew what those communities needed out of those centers and what they got from them, and how important it was to have that level of care. And I saw that was lacking in the migraine and headache community. And I wanted to make sure that these groups I was affiliated with or working with knew that it’s more than just those that you seem to target, which are those with commercial health insurance and have access to transportation and healthy grocery stores and are able to manage triggers because they have access to healthy foods. There is such a larger community out there that is so neglected, we have to make sure that we’re reaching them as well. So being able to bring that to the table has been extremely positive for me. But on the flip side, it has been extremely burdensome and exhausting, because I tend to be the only chocolate chip in the cookie a lot of the times and not having other BIPOC in the room that can speak to what I’m speaking to and support that and have the safety of that understanding is frustrating.
Joe Coe 13:37
It is important to hear that Jaime’s perspective isn’t an indictment against any individual or group. But her sharing her experience and the countless others who push against institutional racism. When we personalize these perspectives, it often decreases our opportunity to hear it. Please listen with an open heart and mind.
Jaime Sanders 13:57
Unfortunately, a lot of the time, who I’m dealing with are mostly white and female, and they’re doing great work. But I don’t always feel like it’s a safe space for me to talk about how this has impacted me as a black patient advocate and not seeing the diversity in leadership. When you look at websites, you don’t necessarily always see a history of work in marginalized communities. So when we’re trying to get BIPOC to buy in, and they go and look at these events or organizations, they’re not seeing themselves. So that’s the frustrating part for me, and it’s going to take a lot of work. But I’m not the only black person with migraine out there with a voice. And retelling my story as much as I had over the last two years, specifically the trauma of dealing with implicit bias and overt racism, retraumatizes me. So I need to protect myself and I think that’s something my white colleagues don’t ever think about when they asked me to talk about it. I’m like, well I have to relive it again. And that’s not an experience you’ve had to deal with. But the great thing about being in the headache and migraine community is that they’re willing to learn and listen and do better. So there is safety in that, I just wish there was more representation. And there was just more than my voice speaking on this, because it will make a bigger impact.
Joe Coe 15:20
Definitely. And that leads to my follow up question. You made me think of a statement that I heard around politicians, white politicians shouldn’t be going to black churches denouncing racism, they should be speaking in their white churches denouncing racism. And I think that statement is really powerful and applicable to the migraine world. White organizations and people like me need to do the work with our colleagues to create the environment that makes it less of a burden for you to share your story. And we might not need your story all the time, we might need to work on our implicit bias without that story, because it’s not your responsibility to educate all the time and to educate us. What would your needs be from allies in this work for around health disparities? I could think of it as a gay man, but as a black woman, what would organizations need to do to be better allies to you and others?
Jaime Sanders 16:20
I think it honestly starts with leadership. There just isn’t that voice. There isn’t that culture of diversity, equity, and inclusion in executive leadership. And so without those experiences, and those voices, there’s going to be a disconnect. And I would just love to be able to see that progression. And it’s going to take time, if you’ve never done this before. But I think it’s a self education. I think, like you said, too many times our white allies go to their BIPOC colleagues or friends to help them figure things out. And like I always say, “I didn’t create this problem. I don’t know how to fix it. And I’m not here to help you fix it. I’m just here to make you aware that it exists.” But really taking those initiatives to research different organizations that are BIPOC led or focused, instead of asking me, “Well, do you know of any organizations?” I’m like, all it takes is a Google search, and you need to start reaching out. That’s, I think, a difficult thing to get people to do. I mean, they really have to be motivated to do that. All I can do is say this is what’s helpful for us. This is what we seek in our allies. And most importantly, not to immediately get defensive when we talk about what we see and what can be better, and not use it as an opportunity to say, “Well, this is what we’re doing.” Okay, that’s wonderful. But I’m telling you, as a black woman, from a black family, from black history, there’s always more that can be done. And especially we need our white allies and our colleagues and organizations to really do better at educating the engaged patient population in this specific community, because it’s majority white and female. So when we discuss issues around race, there is a lot of white women centering their experiences on those articles, or those posts or those podcasts, which needs to be quelled. It’s not about I’m a woman. So I experienced this too. You don’t have the intersectionality daily of being a woman or man and also being from a marginalized group, or a historically disenfranchised group. So it’s not about your experience, and nobody is making it less important. But we need to be able to feel safe to talk about what we go through, and how our experience is so much different just because we walk in with this color on our skin. And people are already perceiving us a certain way. And they already made up in their mind how they’re going to treat us before we even open our mouth. I would really love to see a more inclusive patient population and support groups that really make people who feel othered welcome.
Joe Coe 19:17
I’ve done a lot of thought about these topics and what I could do individually, what GHLF can do as an organization. I think what happens oftentimes with really well intentioned people, does that, you use the word centering are stories, we personalize it. So we hear something and either something bad happened to us so it’s the same and we reduce the experience or we’re like, “We never could have implicit bias. That’s not how I was raised. That’s not what I believe.” And a shift for me that has really helped me understand this in areas that I have a lot of privilege is A, I’m going to lose anything by listening to the experience. I don’t lose my experience, I don’t lose my position in the world, I don’t lose anything. I potentially can gain a really nuanced and rich understanding of a topic that I might not understand. So depersonalizing it and making it not about us, when we are providing space and we then say, “Well, our organization does this, or I have done this, or I have this experience,” it inadvertently negates what that person just took all that energy to share. So it’s natural for us to do that, especially people that are doing good work. And these organizations that you’re working with are doing good work, you wouldn’t work with them. I know you, you wouldn’t work with them. And we’re not doing enough. Because we’re not really putting in the mental work that it takes to say, “All right, I can be uncomfortable here. I’m not going to die as a white man hearing this perspective. And if I need to wait a week to share my perspective, I can wait the week to share it.” It doesn’t need to happen right then when that person is vulnerable and sharing their experience of implicit and explicit and overt bias because it negates it. So I think that’s a lot of the soul searching that we need to do. And it’s a process for those folks. And then there’s people that we’re never going to reach and we have to cut ties. When GHLF put out a statement around Black Lives Matter a couple of years ago, we got a slew of emails, people were like *noise*. And I was like, unsubscribe. This is a not negotiable topic. Black Lives Matter period. There isn’t a debate here. It’s not and, it’s not but or it’s period. And if that’s not vibing, with you, this isn’t the right space for you at this time. There are other spaces that are right for you. And organizations need to decide for themselves and there is no right or wrong answer. It’s what we need to decide what our ethic is and what we choose to do. So it’s so important to not waste your energy, as white organizations, as white people, because you’re giving us a gift. And we need to take that gift and act on it and not go back to the people that gave us the gift and say, “Oh, you gave us a gift, can you give us another gift?” To pay black people for their work. That’s something that we do at GHLF. It’s just the right thing to do. Hire black people, you talked about promoting and having leadership that’s really important. We’re seeing large companies do that, which is amazing, that that’s starting to shift. And that’s really important. So we could talk about this for days, I’m sure. Was there anything that I missed that you wanted me to ask or anything that you wanted to add, Jaime?
Jaime Sanders 22:47
I want to really encourage organizations to seek out the black disabled advocates that are active like on Twitter. They’re such a great group of people, and they’re filled with so much diversity. I think it doesn’t matter what your disease state is, or your level of disability, just having as many voices in the conversation is what’s going to enrich that community. It’s more than just our one specific area of advocacy, we really need to look into what so many other people’s experiences are and what their challenges are and how they may overcome that and what they’re doing to support themselves. And using that as educational tools to make better programs, more diverse programs. And I don’t think we have enough voices really speaking to their experiences, specifically in those groups. And when it comes to policy work, really reaching out to those BIPOC specific health organizations, and seeing what their focus is on state and federal policy and whether they align with your work and what you’re trying to achieve in your goals. And really starting to create these relationships, and really investing and working with organizations that historically have always worked with those groups of people in communities, and really trying to follow what has worked for them. And letting them speak honestly and openly about wherever gaps may be, where you need to correct things, and how you can do things better and take that constructive criticism and turn it into something beautiful for people that may feel left out in the work that you’re doing. And I know that these groups are not intentionally doing these things. I think it’s just if you don’t know about it, you’re not going to do anything about it. So it’s just about making yourself more mentally available to think outside of your own comfortable space. And think of, “Well this is what I know but let me try to think of other people in other situations, and see what I can do to bring that in.” It’s very easy to forget that there are millions of people out there that aren’t able to hop in a car and drive somewhere, who don’t have grocery stores that have to go to the corner store, the gas station, their neighborhoods are filled with fast food restaurants. If you don’t live in that type of environment, and it’s not a safe environment, how would you know how to even get into that community and do work there and get them to trust you and the work that you do, and that you really care about them. It’s about starting with those organizations that have historically already been there and have been doing that for years, and just learning the ropes and just being humble along the way.
Joe Coe 25:42
And it’s a deliberate process, because we would go with the tide, and not make change. And that would be easy. It’s walking against the tide and being deliberate in these actions, and thought processes that you’re talking about Jaime. And it’s something that we need to do better at as migraine organizations, as a country, as a world, another world is possible. And we can make that. It’ll take a lot of work from people like me, and others to do it. We need to listen with open hearts and minds, and then take that and act. And I think that will build a lot of small victories into larger victories, like we talked about. This is why I love talking to you, Jaime. We can go from talking about makeup, to institutional oppression. And it all is connected. And it all makes sense, because our lives are complicated. And we are these amazingly wonderful, diverse, unique people that live in a really interesting time. And we can make some great change together if we listen to folks like you.
Jaime Sanders 26:56
Yeah, we really can. And, you know, it’s all my heart to say that, I just want to make sure that all of the organizations I work with, understand that this is nothing personal. I’m not singling anybody out. It’s just what’s obvious. And we just always need to do better and just increase our diversity. And I’ll always be the touch point for that. But I just want to make sure that they understand that I love them. And I wouldn’t work in this space if they weren’t great organizations and great people. I just have to speak to what I see, and what can be done better. And just know that I’m here to help us get to a better place. And I think this leads into that what I was talking about earlier about not feeling protected, because you don’t always feel safe to be this honest. And I always am worried about backlash. But I think the topic and the discussion is way more important than that. But I do want to reassure those folks that I work with that I love you guys. The work that we have been doing over the last two years has been great and amazing. And it’s really going to create a lot of change. But we still have a long road ahead of us. And these are the things we still need to work on. So that’s just what I was speaking to. And I don’t want anybody to feel like they’re not doing the work because they are.
Joe Coe 28:23
Definitely, and I everything that you’re saying, we need to hear at GHLF, too. I would include any organization needs to hear it. So it’s about that not taking it personal. It’s important to hear.
Jaime Sanders 28:37
Yeah.
Joe Coe 28:38
And there are truths that we could take. Any organization listening to this today can learn something from what you said, that’s doing amazing work. We can do better. So I just really value your time, your energy, your passion, your vibrancy with your color choice today. I mean, I did the total opposite. I’m like, let’s mute it down, Joe. Because I was so excited to talk to you. And I really value and honor and respect your experience and your energy and your work.
Jaime Sanders 29:14
I really appreciate that. And and same to you. I mean, you’re such a passionate person, and your voice and your commitment to things that matter really motivate me and really inspire me and I feel very grateful to be your friend and to have you in my corner as I hope you know I’m in yours. So I think it was Kismet that we met and I knew immediately you were Diva Number Two so please wear that crown with pride, with your head held high because you deserve it.
Joe Coe 29:48
And if anyone has any backlash for Jaime, my email is [email protected] You can give it to me. I could take a little backlash.
Jaime Sanders 29:59
Thank you, friend.
Joe Coe 30:01
Thanks for listening to Talking Head Pain, a podcast that confronts head pain head on. If you enjoyed this episode, give us a rating and write a review on Apple Podcasts. It’ll help more people like you find us. I’m Joe Coe, and we’ll see you next time. This season of Talking Head Pain is made possible with support from Amgen, sponsor of the Global Healthy Living Foundation.
Narrator 30:28
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Before migraine, life was good for Cannon Tekstar. She had a big career with travel, people reporting to her, and invitations to parties. But when migraine struck, it all turned silent, including support from her so-called friends. In this episode, Cannon shares how living with hemiplegic migraine forced her to re-set her career and how she uses social media to support others living with migraine.
Season 2, Episode 4: From Skyrocketing Career to Re-setting With Migraine
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Cannon Tekstar Hodge 00:08
Prior to migraine, I had a really big career. And everyone who has chronic migraine feels that loss of their past life and I definitely have experienced that.
Joe Coe 00:20
Welcome to Talking Head Pain, a podcast that confronts head pain head on. I’m Joe Coe, Director of Education and Digital Strategy at GHLF. I’ve lived with migraines for over 20 years so I understand what it can do to your life. Today I have to delight to talk to Cannon, otherwise known as the Migraine Babe on TikTok. Cannon shares how migraine impacted her career and how she’s using social media now to support others living with migraine. So really nice to meet you, Cannon. Where are you from?
Cannon Tekstar Hodge 00:53
I am from Fort Worth, Texas. I grew up on a- I split my time between a farm and Fort Worth growing up as a child. And I had a really kind of idyllic childhood with chickens and goats and cows and peacocks and horses.
Joe Coe 01:08
And how are you doing today?
Cannon Tekstar Hodge 01:10
I’m doing great. It’s been a busy day. It’s been a productive day but I had a good walk at lunch, went to the park with my dog, and we we had some good times and here I am now talking to you.
Joe Coe 01:22
So we’re going to be talking about head pain for Talking Head Pain. I would love for you to talk about what migraine means to you and your worst migraine attack.
Cannon Tekstar Hodge 01:32
Migraine for me is so much more than head pain. It is a neurological disease and it is a dysfunction of the nervous system. And my life with migraine is quite different than most because I have chronic hemiplegic migraine which is one of the rarest subtypes of migraine with aura. In terms of my worst migraine attacks, I’ve had some different varieties. I’ve had some big slammys, as like think of them, or big baddies where I will pass out. That happens about once a year. Once I was in California, I passed out in the UCLA Santa Monica Emergency Room, really nice emergency room there, they have private rooms and they turn out the lights. It’s the nicest emergency room I’ve ever been to. But I also passed out in New York several times. I’ve done it in urgent care. I’ve done it at home on the floor in the bathroom, I’ve done it in the emergency room. I also get cyclic vomiting during these big baddies. That’s when I typically would need an IV to rehydrate. So that’s pretty tough. My scariest attack was a hemiplegic attack that really closely mimics a stroke. I usually know the difference between my hemiplegic attacks and a stroke because when you have hemiplegic migraine, you know to kind of look for the symptoms. And you see how they kind of act in stages and phases and you know when to act fast. So this was one where everything happened instantaneously. And it just was like, snap, my words slurred, everything seemed warped, I had paralysis, I couldn’t smile, and being unable to smile was a new symptom for me. So as soon as you have a new symptom during one of these episodes or attacks, that’s when like the little spidey senses go off and you know that you have to pay attention. And because this was happening instantaneously, and because I had this new symptom where I was unable to smile, I knew that I needed to get it checked out to rule out stroke, because I know that I have such a high risk of stroke. So I called 911, and the EMTs came and my blood pressure was super duper high. I usually have really low blood pressure. They were like yeah, we’re pretty sure you’re having a stroke and the ambulance drove me the one block to the hospital again. I lived one block away from the hospital and the stroke team was ready for me. And that one took a while to recover from but I returned to baseline that day. The IVs worked and everything. Usually my auras come in stages and phases, but I have intractable auras so I have auras all the time. I haven’t been without some level of hemiplegic migraine auras since 2015. But those are kind of my worst migraine attacks.
Joe Coe 04:07
So interesting for me right now, personally because I live with migraine, as you may know, and I’ve been getting more dizziness and close to fainting, and my tingly spider senses went off and I spent a day in the ER recently. And we also have private ER rooms in Rockland County, who knew but we did. And they turned me they turned the lights off for me, which was really nice. Once you get out of the actual ER waiting room into a room it was very good. So it’s important, what you’re saying when you feel something different to take notice and to get help. Do you find that a lot of people struggle with going to the ER or taking the new symptoms seriously because you don’t want to be seen as like exaggerating or being dramatic?
Cannon Tekstar Hodge 04:57
Absolutely. And there’s so many times when I don’t want to go. I will go to urgent care so many more times than I will go to the ER just because I never want to put too much stress on the emergency staff, especially right now in the middle of a pandemic. And I also don’t want to put myself at risk. But I do find that I will avoid going to the emergency room as much as possible. And usually the reason I go is because my neurologist sends me. She sent me in April because she wanted to rule out a blood clot because I had developed a new aura. And it was kind of mimicking a blood clot. So she wanted to rule that out. And NYU is super duper careful. And so she was like, “You need to go right now?” And I did. And it was fine. It was nothing wrong. It’s just another aura. That’s just how it is.
Joe Coe 05:48
Cannon, you’ve mentioned auras now two or three times, can you explain what an aura looks and feels like for you?
Cannon Tekstar Hodge 05:56
When most people think of migraine auras, they imagine the visual auras. So seeing flashes of light, or seeing black or brown spots, having some sort of impairment with their vision. That is the one aura that I don’t get a lot of. I think at the end of the day when I close my eyes I kind of have this disco show going on. But other than that I don’t really have visual auras. My auras are more motor and sensory. I have a lot of paraesthesia. I have constant paraesthesia, or tingling, in my legs primarily from the knees down. I also get paraesthesia in my hands and on my face. And then I get ataxia, which is kind of having difficulty walking and with movement and feeling really weak. I call it baby giraffe trying to drink water legs, if you have that visual. And I have a lot of difficulty walking. Some of my other auras, now I’m trying to think, I will get a stutter. I have a terrific stutter, and I will stutter through anything. And then I also get transient aphasia, which is when I will have difficulty thinking of words or I mix up words and I do this all the time. And because I have intractable auras, these symptoms are some things that I live with every second of the day, and I have lived with every second of the day since 2015.
Joe Coe 07:21
Auras can be part of migraine in a big way. So I asked Dr. Peter McAlister, a Board Certified Neurologist and the Director of the New England Center for Neurology to describe some of the most common types of aura.
Peter McAllister, M.D. 07:35
The most common aura is a visual aura, that is having 20 to 30 minutes of zigzags if it’s in the sensory section of the brain. But the less common ones are very interesting and can be quite scary. The second most common aura, if it’s in the sensory section of the brain, is a tingling or numbness. And that can be one side of the body, can go up to the face, can involve half the tongue, which certainly can be very scary and a lot of folks think they’re having stroke. One can also have that aura in the motor cortex. That presents very stroke-like with weakness, and there is a subset of migraine called hemiplegic migraine, where one side of your body gets weak. One you can have the aura in the dizzy and balance center, one can have it in the language center. So these are neurological symptoms that are not dangerous, fully reversible, and part of the migraine in about a third of those who have migraine disease.
Joe Coe 08:34
It’s really important for people to understand that auras can be all these multifaceted things that happen to people and not only a visual representation. I’ve learned that from people with epilepsy, that it could be like a feeling of deja vu, or something like that. And I think it’s important for people to acknowledge that because it helps us better manage our disease if we understand that this weird feeling is part of migraine.
Cannon Tekstar Hodge 09:04
Absolutely. And I do get this strange bit of tingling, or twinginess as I like to call it, on the right side of my head. And that’s usually my first indicator. I’m tingling all over all the time. It can be difficult for me to distinguish one from the other. And a lot of times I like to keep moving and I like to keep busy. So I’ll just keep trucking along until I realized that I can’t walk or talk and then I’m kind of like, oh boy, it’s time for me to take my meds.
Joe Coe 09:34
I heard that you had to travel a lot because of migraine and potentially your career. Can you talk about how it’s navigating employment and travel with migraine?
Cannon Tekstar Hodge 09:44
Prior to migraine, I had a really big career and everyone who has chronic migraines feels that loss of their past life and I definitely have experienced that. And it’s heartbreaking to see who you were before your chronic illness and who you become, and all of the experiences and all of those things that you lose as a result. And so after I kind of was used to working again, and I had adopted some healthy work life balance habits and all of those things, I got a job in New York back in the fashion industry working for an American designer in the city. And I was with that designer for several years before there were COVID layoffs. And once I was back in New York, I was assigned to a headache specialist at NYU, and I’ve been with her since and she has been absolutely incredible. I was freelancing at the time, I had lost my job due to migraine, and I just packed up my place and I moved to California. I saw that UCLA had started a migraine program. I knew that UCLA was one of the top neurological hospitals in the country. And while I was at NYU, which is another top neurological hospital, I just wanted to see if a change of pace and different lifestyle could be helpful for me. And what I learned in being a patient at UCLA, and their approach to patient care is very different than NYU, they feel much more clinical. But what they really did is they taught me that my approach to treating migraine didn’t have to be reliant upon just one preventive medication. I needed to target all of these different symptoms. And there was nothing wrong in needing to take multiple medications, and get Botox, and try different kinds of diets, and do meditation. And so I kind of had this catalogue of things that I was doing to manage migraine and I since I was unable to work at that time, I did everything to optimize my life for migraine. They taught me more about preventive medications and how these different medications could address my symptoms than any other place. The effect that it had on my life was transformational, I no longer needed to wear sunglasses inside. I was not as light sensitive as I usually was. I wasn’t as sensory sensitive, so I wasn’t as sensitive to any other levels of senses, including loud noises, other things. I still am very sensitive to flashing lights and vibration. But other things don’t trigger me so much. It took my daily pain from being at like a seven, it took my daily baseline pain to a four. We looked at it in what are some different symptoms, and how can we target those symptoms of preventive medication since. So that’s how my headache specialists here in New York and I approached it as well. Once I got my symptoms under control in California, I was able to apply for a job and I got a job working for a communications firm. And it was a really simple job. I was way too qualified for it. And I’ve been very lucky to have access to both UCLA and NYU. And one of the reasons I work so dang hard is so that I can continue getting the care that I have at NYU, because I need that insurance. I can just get very angry when I think about our medical healthcare system. But I work really hard so that I can stay with my doctors and get the treatments I need to treat this really gnarly disease.
Joe Coe 13:26
What makes you angry about the healthcare system? You talked about getting angry, get angry with me. What angers you?
Cannon Tekstar Hodge 13:33
I get so frustrated. There are only 700 headache specialists for at least 35 to 40 million people who have been diagnosed with migraine, there’s probably more in the US who have migraine and they don’t even know it. And there’s only 700 headache specialists to treat them. I have more access and more privilege than most and it is so unfair that so many people don’t have access to medications they need. And it’s so unfair that they don’t have access to the treatments they need. I want to punch the wall when I think about step therapies and what the, you know, insurance companies make patients go through in order to get a gepant, which won’t put them into rebound. Everything about it seems to set migraine patients up for failure. I was so lucky that I lived in New York and had access to NYU. Had I been and my hometown of Fort Worth, I don’t know if I would have been able to function. I don’t know if I would have able to ever maintain a career or have any of the opportunities that I have had. In working with my last job in fashion producing all of the social media behind fashion shows, going on work trips to Spain, all of those different things, I never would have been able to do that. I probably would be put on one medication and I wouldn’t have been able to well walk out the door, which is how it is for so many people. NYU has an entire appeals team, they work on all the prior authorizations. My doctor doesn’t even work on it. There’s a team that does it. I have access to these medications, and I have, I’m able to live this life, but most people don’t. And so that’s why I started my TikTok account was to share so much of what I’ve learned to people who don’t have the access and privilege that I have.
Joe Coe 15:27
We’re gonna get to TikTok. I have questions about that. So yeah, you were talking about prior authorizations and step therapy, or what we call at GHLF, Global Healthy Living Foundation, Fail First Hurts, because they force us to fail on something first and hurt before we get what we need. I remember calling my insurance company and they kept denying a very simple treatment because the doctor didn’t check the right box. And then the doctor didn’t give the right amount of information on how I failed uncertain triptans and I’m like I finally said to the insurance company, “Can you tell me what the secret code is? Can you just tell me what magical combination of words we need say?” My neurologist will do it. It’s so frustrating. I, like you, have a lot of privilege and knowledge. And it’s like, if I’m struggling to get access, I can’t imagine what someone who doesn’t have the resources that I have or that you have struggle. I’m right with you with that anger. Before we get the TikTok, I want to go back to your job because I think it’s important for folks to hear about that loss. And you talked about the loss of your past life, and the loss of your job. What did that feel like? Especially being a younger person, these are supposed to be like the best years of our career.
Cannon Tekstar Hodge 16:49
I think I was 32 when I was diagnosed with chronic migraine. And my career was skyrocketing. I had started social media for a luxury store in the city called Bergdorf Goodman. And I had done that for five years. And then I had accepted a job as the head of social for a startup. And that’s when my migraine disease had kind of chronified and morphed and to vestibular migraine and the bottom just fell out. It was the most humbling time of my life. And usually when, you know, I hear people now say that they’re humbled when they get an award or when they’re honored, I’m like, “You have no idea what it’s like to truly be humbled.” Because when you lose the ability to walk, and you have to have a physical therapist teach you how to walk down the hall again, after you had the most fun life in the world. That’s humbling. I also have gastroparesis. And the things they make gastropresis and GI patients go through is truly humbling. And then also the whole process of going from having this big career and being in the process and going to parties all the time and having people contact me all the time and invite me to stuff, then just the silence of not really hearing from people. And so many of my friends and acquaintances no longer communicating with me because I wasn’t trendy. That was humbling. Also, when I was able to get a job again, my salary was so much less. I think I took it was like a $40,000 pay cut the next job that I had, just so I could start working again. That was incredibly humbling. And going from overseeing teams and having teams of people reporting in to me and then being kind of back at the bottom of the totem pole. That was incredibly humbling. It took me seven years to get my career back to where it was before migraine and the job that I started in August. I’m back to overseeing teams and doing all of that. I worked at an agency before that as well. So I guess it took me about six and a half, seven years to get back to this place. And to be making as much or more than what I was making when I was 32.
Joe Coe 19:15
Congratulations.
Cannon Tekstar Hodge 19:16
Thank you.
Joe Coe 19:17
Important. What would you go back and tell your newly diagnosed self if you were able to?
Cannon Tekstar Hodge 19:22
I would really emphasize a headache specialists more than anything else because I just had a general neurologist. And I think had I had a headache specialist from the beginning, it may have prevented my migraine disease from becoming so gnarly. Unbeknownst to me throughout my 20s I likely had chronic migraine. It was migraine without aura, but I thought it was sinus infections. And in hindsight when I think about it, it’s now very obvious to me because I was throwing up and my head hurt and it was constant. I was using over the counter meds daily and likely was a medication adaptation headache. And my general practitioner at the time just would dump on my sinuses and tell me that I had a sinus infection. Had he known how to recognize migraine back then I would not be in the situation that I’m in today. So I think getting proper care as early as possible is so critical.
Joe Coe 20:27
What Cannon is bringing up here is really important. So I asked Dr. McAllister to explain why migraine attacks often get misdiagnosed as sinus infections or sinus headaches, and how we can tell the difference.
Peter McAllister, M.D. 20:39
There was a study from the Mayo Clinic some years ago, that took patients who thought they had recurrent sinus headache, or were told, in fact, by their primary care or other doctors that they had sinus headache, and they had them see both a board certified headache specialist and an ear, nose and throat doctor. They had scans of their sinuses, they had scopes put up their nose, etc. And it turned out that nine out of ten of those who were diagnosed with sinus headache did not have sinus headache and the vast majority were in fact migraine. And here’s the overlap. A good minority of migraine sufferers will develop what we call parasympathetic drive. What that simply means is it’s a turn on of not just pain nerves, but nerves that actually line the sinus cavity and are in the nose. And so if one has a socked in pressure feeling around the eyes, the mid-face, or the nose, they tend to go there and say “Oh, that must be sinus,” not realizing that the bad nerve in migraine is the trigeminal nerve. Well, the trigeminal nerve supplies the sinuses and supplies sensation to the nose and around the eyeballs and the upper teeth. So when that turns on, one can feel like a sinus headache. The fact is, if you look at the ENT literature, sinus headache is not a severe one. It’s usually focused over the medial aspect of the eyebrow. And it’s usually associated with other symptoms of acute rhinosinusitis, such as snot coming out your nose, swollen glands, malaise, blood tests that would show an elevated white count, a low grade fever. If you don’t have those things, and these are recurrent, you have migraine by and large. And I have had, here’s an extreme case, asking a woman in my office in a new consult if she has migraine, and she said, “No, but I have sinus headache every month around my menstrual period.” And of course a bit of education led her to understand that that pressure feeling in her mid-face and nose was actually a menstrual migraine.
Joe Coe 22:45
There are so many people being misdiagnosed and so much general misinformation on migraine all over the internet. So Cannon decided to use her social media presence to help people get facts. You’re the Migraine Babe on TikTok. And can you talk a little bit more about what Migraine Babe means to you and why you created this account and why you use TikTok?
Cannon Tekstar Hodge 23:08
You know, I created the TikTok account for several reasons. One, I’ve been involved in migraine advocacy on social media since around 2016. I’ve worked in social media since 2009, so it’s a very comfortable space for me. And in 2016, I helped run the group Migraine Strong and I did that for several years. So I have a lot of background in migraine education and helping communities with migraine. I took some time to myself just because it got to be self care, essentially. And as I was going on to TikTok to study the platform to see what it’s like, because I work in social media, I would see so much misinformation about migraine. And the accounts that I were seeing getting a lot of visability were accounts that were pushing things that don’t have any peer reviewed studies confirming whether or not these treatments are effective. It was a lot of holistic quote unquote cures, here’s a migraine cure juice, which would be ginger and a lot of sugary fruits and maybe some spinach in there. And that was supposed to cure a migraine attack. And I know that there are people who swear that it helps them and then, you know, other people are saying it’s placebo but there’s nothing that’s showing that this is helpful. So I wanted to create a space that was actually sharing accurate information. I think at the time I only found one pain management doctor who was giving out accurate information about migraine but he constantly referred to it as headache. And that just made me so angry because headache is just one of the symptoms of migraine disease. And so I had all of this information in my head. So I just had to kind of get over my own video insecurity and being shy on camera and think of a way to communicate migraine facts to community. It took a while. And then I kind of realized that, I don’t know if it’s horrible or if they relate to it, but people really love to see when I get my hemiplegic migraine attacks. And it’s really easy for me to record, because I’ve worked in social for so long. And all you have to do is like, prop your phone up against a lamp and hit record and edit it later when you’re not feeling so bad. And because my attacks are so physical, it’s impactful. And so it’s a way of showing that migraine is much more than what you think of. I mean, yes, I am so much of a migraine stereotype in that I’m a white woman. But often people have had that image of a woman kind of holding her head and her brows are furrowed in pain. And my attacks are not like that at all. I can’t really walk, I can’t speak clearly, I can’t hold on to things. And so this is a way of dispelling so many of these misinformation about migraine and misinterpretations of what migraine is. And also for the hemiplegic migraine community because that’s a much smaller community and people who are just diagnosed with hemiplegic migraine, it is so scary. And to see that you can have hemiplegic migraine and be active and you can have you know hemiplegic migraine and be productive. And so those are some of the reasons I started it. And it’s kind of grown from there. And I have built this lovely little community as people who now really want the facts and they want the research. And I dedicate almost all of my free time to research. I’m not a researcher, I’m not a scientist, but I am constantly reading NIH studies. I am listening to all of the podcasts that I can about migraine disease. I am going back and I’m listening to videos from the Migraine World Summit. And it’s so important that I share accurate information because I know so many of these people, they don’t have a headache specialist. And so I want to be able to give them the tools that they need to self advocate because at least if they’re going to their GP, they can say, “Here’s a study that is talking about this medication that can be really effective. I’m interested in this, can we have a conversation about it?”
Joe Coe 27:41
Is there anything that I didn’t cover that you feel is very important?
Cannon Tekstar Hodge 27:45
One thing we didn’t really go through is how genetic migraine is. I think a lot of people forget that. And I know a lot of advocates are trying now to change the language, rightfully so, to migraine and migraine disease rather than using migraine in the plural when referring to attacks. Because the more we talk about migraine in the singular and as a disease, the more that society will see it as such, and will begin to understand that this is something that is primarily genetic. Yes, you can get migraines from comorbidities or from TBI’s, but primarily it is something that runs in the family. And I think what’s so critical about that is because of the misinformation surrounding migraine, oftentimes people think that migraine is this isolated incident that happens due to something that you did to yourself. And it is so important that migraine patients, especially those who are new to migraine, whether it’s episodic or chronic migraines, that they know that migraine is not their fault, and there’s nothing that they did in their life to cause migraine disease. Yes, there are triggers that we have and that that can provoke an attack, but the disease is there regardless.
Joe Coe 29:06
One of the first things I did as an official advocate for migraine, and I didn’t want to come out publicly with migraine, I thought it would impact my career, I thought there was a time that I thought I might run for office. And I’m like, “Will they use that against me and say I’m weak and I wouldn’t be able to do it.” One of the first things I wrote as an advocate was an article called, “What If Life Was The Trigger?” Because everyone’s saying, “Well, if you do this or if you do that,” to your point earlier, Cannon, I think we feel, and we internalize as migraine patients, a lot of these feelings that we are in control of this disease in some way. And in some way we are, we can manage things differently and in some ways, but in a lot of ways and most ways, we probably can’t. And we can’t beat ourselves up about that. So I want to leave our listeners with something to remind ourselves about being compassionate to each other. And using our skills like we have seen you use, Cannon, your social media skills, your calling, you found your way to advocate and you’re using it for good. And we all have a skill and we have something to give, and what can we give to make this world a better place. And I think that’s what people get from listening to your story and the work that you do. So I so appreciate your time and energy being on here today.
Cannon Tekstar Hodge 30:29
Thank you so much. Thanks for having me. This has been quite a delight and an honor.
Joe Coe 30:36
Thanks for listening to Talking Head Pain, a podcast that confronts head pain head on. If you enjoyed this episode, give us a rating and write a review on Apple Podcasts. It’ll help more people like you find us. I’m Joe Coe, and we’ll see you next time. This season of Talking Head Pain is made possible with support from Amgen, sponsor of the Global Healthy Living Foundation.
Narrator 31:04
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
It’s a revelation that reflects the depth of migraine pain. Shruti Suresh says during her worst migraine attack, she overdosed on pain meds and revealed she’d have rather die than feel the pain. Today, Shruti is a migraine advocate, shining a light on the emotional and mental health issues surrounding migraine. In this episode, Shruti talks about the systemic nature of migraine, and how we need to address all areas of health when living with chronic disease.
Season 2, Episode 3: Mothering, Migraine & Mental Health
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Shruti Suresh 00:08
You can’t understand it unless you’ve experienced it. It was very intense. I had to push myself to take care of my daughter, who just turned three, and just felt very stressful because there’s a lot of mental health also included in this.
Joe Coe 00:23
Welcome to Talking Head Pain, a podcast that confronts head pain head on. I’m Joe Coe, Director of Education and Digital Strategy at GHLF. I’ve lived with migraines for over 20 years, so I understand what it can do to your life. Today I’m talking with Shruti about the deep impact migraine can have on your emotional and mental health. Shruti’s discussion reminds us of the systemic nature of migraine, and how we need to address all areas of health when living with chronic disease. Welcome Shruti. I’m so happy that you’re on our show today. Looking forward to talking about migraine with you and learning about your experience.
Shruti Suresh 01:03
Thank you so much. I’m so happy to be here. And I really appreciate all the work you guys have been doing.
Joe Coe 01:09
So I’m reading that you run a Instagram page called Chronically Meh. Can you tell me a little bit about that Instagram page and what inspired you to create it?
Shruti Suresh 01:21
Frustration is what inspired me to create it. So I moved to Canada in October 2019. And you know how healthcare is over here. It’s it’s universal health care, so you have to wait a while to get your card. And it takes a while longer to see a doctor. So the weather change really aggravated my migraine condition. And I wasn’t able to see a doctor, I wasn’t able to see a specialist. My GP said it’s not migraine, although I had been dealing with it for like, nearly 20 years. And I couldn’t find any help. So it was very frustrating. And for the first time in my life, I was able to find a support group. And that got me thinking that there are so many people out there who can relate to what I, what I’m going through. And I felt so alone, so there must be more people out there who feel the same way I do. So maybe sharing my story and my frustration, this my life, would probably help at least one person feel a little less alone. And that’s the reason why I started it.
Joe Coe 02:23
It’s really important. And I respect that so much because we have to build our own communities when we feel like we don’t have one. Is that also why you created Migraine India?
Shruti Suresh 02:35
Yes, coming from India, migraine is not fully understood there. It’s just a headache, something that women go through. Most neurologists do prescribe all these regular medications for migraine, but there’s nothing more about it. I was never taught that we can actually take vitamins or you know, I had to include other management methods in my toolkit. So it was hard for me because I felt so alone in this all my life, had people telling me that I exaggerate, that I’m trying to seek attention. And I really know how many people are actually suffering with this in India and there’s nothing, there is no association, there’s no foundation, there’s literally no awareness about it, which is why I created that page just to get the conversation started.
Joe Coe 03:18
How does it make you feel when people tell you that you’re faking or just seeking attention?
Shruti Suresh 03:24
I believe them initially, because I was told that for a very long time. So my mother actually believed me when I said my head’s aching, etcetera, etcetera. I started off with abdominal migraine, I believe. Because I’d see my stomach shaking, I feel dizzy, I feel like throwing up. It was very confusing. And the doctor said, “No, she’s just faking it. She doesn’t want to go to school.” And I was at the top of my class, why wouldn’t I want to go to school. So my mother realized it’s migraine, and I had a lot of headaches. But she didn’t say anything because she also went through it. And she really fought for me, advocated for me. But eventually doctors kept convincing her and my dad that it’s not anything serious. And it took a very long time. So even through that, even after I was diagnosed, people just went on saying, “No, you’re just faking it. It can’t be that bad. Don’t try to get out of everything just because you have a headache.” I did believe them. It affected my confidence. It affected my self esteem. Pretty much everything. So I went from being at the top of my class to not even bothering if I get through. I did get through because I’m super hard on myself. But I’m still trying to get over it.
Joe Coe 04:33
So why is it that so many doctors don’t take migraine seriously? I wanted to get some answers from a leading neurologist. So I sought out Dr. Peter McAllister. He’s the Director of the New England Center for Neurology. Dr. McAllister, for Shruti, we hear that many people like her don’t get treatment or diagnosis for migraine due to doctors misdiagnosing them or, in her case, downplaying her symptoms as not serious, especially in her childhood. What kind of effects can that have on a patient and on the medical system as a whole later?
Peter McAllister, M.D. 05:08
We have some reasonably strong evidence to suggest that early and proper treatment of migraine disease, likely effects outcome later in life. If one has childhood migraine, and indeed 10% of school aged children have migraine, ideally, that would be diagnosed properly, and the proper medications, lifestyle adjustments, sleep, hygiene, etc, would be instituted. If not, what tends to happen with any medical condition that’s not treated is it tends to worsen. And I’ve had children and teenagers who were not taken seriously by health care professionals who have gone from low frequency episodic migraine, a few a month, to a high frequency episodic migraine state and into chronic migraine. And as we know, chronic migraine is associated with much more comorbidities, anxiety, depression, you name it. So that is not a place you want to go. So I think like any medical condition, migraine needs to be recognized, not downplayed, treated properly, and the outcomes down the road will probably be a whole lot better.
Joe Coe 06:19
I asked Shruti to recall her worst migraine attack and describe what the pain was like at the time.
Shruti Suresh 06:24
I remember this year, it was on February 8th. I had had migraine for quite some time, the attacks were going on and on. And I still couldn’t get to see my specialist who I’d been waiting to see for over a year. And I was really frustrated. I tried to do everything possible. I tried to take all medication that the GP had given me, nothing worked. And I ended up overdosing on pain meds. So I ended up in the hospital. That is the worst thing for me to feel so powerless and so hopeless and to be in that situation. After which, the hospital sent me home with over the counter medication. That’s it.
Joe Coe 07:00
I wondered if this was the right approach to take. I asked Dr. McAllister why a provider would tell a patient with chronic migraine to take over the counter medications.
Peter McAllister, M.D. 07:09
Over the counter medications, particularly the non-steroidal anti-inflammatories and the ibuprofen or acetaminophen caffeine compounds, have limited utility in migraine. If you think of migraine as a brain disease, these are nonspecific treatments. If one has one or two moderate severity migraines a month and Excedrin Migraine or a few ibuprofen work, then that’s fine. But the majority of patients, and certainly the ones I see here at my center, have more significant disease. Not only are over the counter medications generally ineffective, but if you take too many over the counter medications, it can lead to something called medication overuse headache, what we used to call rebound. The brain of a migraine sufferer gets very used to certain compounds quickly. And when you take enough of them, when you go to sleep at night and your blood level drops of that medication, you wake up with a headache. And you say, “Huh, what did I use? Oh, yeah, Excedrin or Motrin,” and you take it and you feel a bit better, but all you’re doing is feeding the withdrawal, and you’re getting yourself into a terrible cycle. So sometimes I see patients in medication overuse, and while we do a lot of interventions, the first thing we do is get them off of the offending agents. Shruti says her worst migraine attacks would leave her in a state of despair.
Shruti Suresh 08:33
Feeling like I’d rather die, and I haven’t said this before, I’d rather die than feel this pain. Because nobody believed that it was that bad.
Joe Coe 08:42
That’s really sad and anger inducing that you lived that experience. You would rather die. That is something that we hear a lot from people that are living in pain and don’t see an end to it. It’s something that we have to really highlight is a reality for people with chronic disease and that there is support. If people feel that way, call a suicide hotline. But can you talk a little bit more about what that felt like? Like, why did you get to that point and how?
Shruti Suresh 08:48
Yeah. I think it was a lot of things. So I’m here in Canada away from my family, it’s COVID, stuck with my husband. We didn’t get to socialize, we didn’t have much of a social circle. And it’s just my husband and I. My husband didn’t get migraine. I mean, he’s never experienced it. He hears me talk about it, but you can’t understand it unless you’ve experienced it. It was very intense. I had to push myself to take care of my daughter who just turned three. And just felt very stressful because there’s a lot of mental health also included in this. Feeling that hopelessness and despair and frustration and anxiety that comes along and trying to be a mom and a wife and not fail at that and not feel like, “Oh my God, I didn’t do the dishes today. So he’s probably gonna think I’m not good at this, or I’m not being a good wife,” and things like that. And eventually, it was actually the doctor who’s supposed to be validating and helpful. And he ended up saying, “No, I think it’s just stress. I think you’re just stressed. I can’t refer you to this specialist, I can’t refer you to that one.” And I started feeling it. I’ve always had these thoughts. Every time my attacks get worse, I have suicidal thoughts. It’s been there all my life. I’ve always managed it because it’s obviously the brain trying to escape. But this time I recognized it, it got intense. I called all the hotlines, I was directed to IVR recordings. There was no human being on the other end of the line talking to me about it. I just felt incredibly hopeless. I don’t remember much after that. I just woke up in the hospital the next day.
Joe Coe 10:55
What would you tell someone that’s feeling hopeless?
Shruti Suresh 10:58
That they’re never alone. That there’s always at least one person out there in the world who feels it all. And just sharing that or reaching out and talking to them can actually help you feel a little less alone. And I think that the loneliness is what eats at us. Feeling like you’re the only one who’s dealing with this and acting like this and exaggerating, that is a lot to bear. So if the loneliness is taken out of the situation, it’s easier to manage migraine. If the mental health part of it is balanced, you’re able to cope, then you can deal with the pain.
Joe Coe 11:33
And who is that person or organization or group that helped you feel not alone?
Shruti Suresh 11:40
It’s a Chronic Migraine Support Group Canada on Facebook. I have no idea how I stumbled upon it. I think I was just looking for something. I never even knew that there was a support groups for migraine. I felt shocked looking at all the stories there on the feed because people keep posting whatever they’re feeling. And the first story that day, I saw this lady who had said, “I’ve been going through this for years, my doctor doesn’t want to refer me to anybody else. I don’t have anybody else. I don’t have anyone in my life. So I went back to him and I said, ‘Can you please help me with physician assisted suicide?’ And he gave me the number. For migraine. He actually said we can’t do anything else. So here’s the number.” And that really struck me because nobody should be in that position. And that is what helped me understand that there are so many other people feeling the same way I do.
Joe Coe 12:33
Can you talk a little bit about how it is living in Canada with migraine? You spoke about the weather, but how have you found care in treating your migraine in Canada?
Shruti Suresh 12:43
I think it’s great that the government is offering us universal health insurance. I think not many countries do that. And this is great. But I’m not happy about the fact that I have to wait for a year, year and a half, seven months to see a specialist if I’m really in need of help. Just because I’m not emergent. I’m not happy that when I go to the ER, they send me back again with OTC, so that is something that I’m still struggling with. We have a lot of rules around healthcare. They cannot refer me to a doctor outside of this radius where I live. A lot of things that make it so difficult for you to go and get help when you want to. And this is not something I experienced in India. In India, it’s completely different. Like I can walk into a clinic right now and demand help. And they will help because there are so many doctors. I understand the differences. But yeah, that’s something I really miss. And I think that is what led to me feeling at my rock bottom. And it shouldn’t really happen to anybody.
Joe Coe 13:45
We agree. Can you talk a little bit about how migraine has affected your work life and working?
Shruti Suresh 13:52
I have been a workaholic forever. I think I get that from my dad. I love working. I’m a content marketer, I used to love writing. I’d work 20, 21 hours a day, nonstop and I loved it. Never really got tired. But then I’d work myself to burnout and end up with intractable attacks for months together. And so I’d have to take off time from work, sabbaticals, maybe switch jobs. And I switched about eight or nine jobs within four or five years. No big breaks in between. And over time, it’s just the pain, the anxiety, everything that comes along with it. I didn’t really notice that my memory was fading, that I had brain fog, that I was actually struggling. And then when I did understand and when I did recognize the signs, it scared me so much that I completely lost my confidence. I am really good at what I do. But I felt like I was nothing. So I refused to go back to work. I was so happy that when I got married, I got to move to UAE and over there I was just not ready to go back to work. And then when I got back to India, I moved back because of the weather, migraine just aggravated. I easily got a job. And I stuck to it for three years. At the end of which I was still feeling all these things. I was still burning out, but I just held on for once because I really, really loved what I did. It was crowd funding for healthcare. It was telling people stories, and that kept me going. And when I had to move here, I was more than happy to take a break. And I have to say this, I don’t think I’m still ready to go back to work, which is terrible. I really worked hard to learn, I have worked hard to do what I do. And right now I feel like I suck at pretty much everything.
Joe Coe 15:43
I would disagree because you just flipped that script. You’re telling your story to help people, as opposed to telling other people’s stories to help people, which is a really powerful thing to do. And not everyone can or is willing to do that. So I would give yourself more credit.
Shruti Suresh 16:00
Thank you. There’s one part of the brain which says this, but the migraine side of it says no, you know what, just stop doing whatever you’re doing, and I am still not okay, because it’s social anxiety. A lot of things that I haven’t been able to explain to anybody, just a whole lot of mental health combined, you feel tired all the time. How do you justify that? How do you explain that to someone? I look okay, I look fine, I don’t look sick. I don’t know what sick is supposed to look like. But I feel sick pretty much all the time. That is really hard to explain. For me, when I make a commitment to work, I want to fulfill it 200%. And if I’m not able to do 100%, I quit that day, the day I realized that I can’t. So I’m that kind of a person. Even with academics, I was pretty much like that. It was difficult for me. And it still is difficult for me. Because I know now that any moment, today, I won’t be able to give my 100%. I cannot make commitments. And so I don’t want to commit
Joe Coe 17:00
Has that crept into other parts of your life?
Shruti Suresh 17:03
Every part of my life, especially motherhood. I didn’t really think about migraine when I decided to have a child, which a lot of people do. I don’t know why I didn’t think about it, maybe because I was in India. And that time, I was told that whatever I was feeling was normal. But after I had her, I’ve had that fear, you know, maybe I can’t commit to this. Maybe I’m not going to be a good mom. I’m probably not going to be a good wife. I can’t tell you how many times these thoughts just plagued me middle of the night, I’m just sitting up thinking, “What will happen if I run away today? Because I don’t think I’m making my husband happy. My parents are not happy. So my child’s probably gonna grow up and hate me because I’m going to be in bed most of the time. Or I’m irritated and annoyed.” Because mood disorder comes along with it. I get annoyed when there’s a lot of noise, when people are moving around a lot, when people are eating. These are things people don’t understand. Because they think again, “Oh, you’re just being irritated and you’re just being too picky. You’re just exaggerating again.”
Joe Coe 18:01
Shruti is describing depression, a condition that’s very common for migraine patients. Dr. McAllister is very open with his patients about how depression can affect their migraine and vice versa.
Peter McAllister, M.D. 18:14
Depression can present as we all think of it with sadness, tears, hopelessness, etc. But sometimes it presents quite a typically. And that can occur in men and women. But I’ve found over the years that men can sometimes present in atypical ways such as having irritability, or mood changes, or short term memory difficulties, or appetite change, or sleep disruption. Sometimes once I hear that, and I suspect it may be depression, then I go into education mode and tell them what they may be up against. And occasionally, we firm up the diagnosis after we’ve treated it and they feel better. I find that I enjoy spending a great deal of time with patients, particularly on the first consults, and really get to know them. I get to know their lifestyles, their work habits. I ask about marriage, I ask about exercise, and it’s just bundled into all of the things one should ask in a very open and non-confrontational manner. And I get patients to open up and tell me things that perhaps other doctors may not just by being conversational and non-judgmental.
Joe Coe 19:22
I asked Shruti if she’s ever worked with a professional around mental health.
Shruti Suresh 19:26
I have. I did it when I was a child, but at that time it was not coupled with migraine. I’ve come to understand that my migraine comes from stress, which is actually from C-PTSD, complex PTSD. And I’ve still not able to work on that issue again, because mental health is expensive here in Canada. It was easy for me in India, but at that time, I didn’t know it was just depression and a little bit of anxiety and relationship issues which I was working on. And I had to keep pausing my treatment because I had to move or go to college. But here, I think the only thing that’s stopping me is the cost. It’s incredibly expensive.
Joe Coe 20:06
Seems to be the case in the States as well. It’s really, really hard to get proper mental health treatment. Folks are inundated, and it takes months and months to make appointments, let alone have insurance cover it. It’s a challenge. So we relate to that. But it’s good that you acknowledge it, and that you know that it’s there. And naming some of our challenges is the most important thing and breaking some of that stigma around it. I think that we’re taught to don’t talk about mental health, because people might judge us.
Shruti Suresh 20:38
I don’t think I ever heard people say it, I’m sure people said it, but with mental health, primarily because mental illness runs in my family, they’re very prone to depression. People, generations going back, get triggered by something or the other. And that way, we kind of mess with the future generations. I was always very much aware of the fact that something was not right within me, that I was not, I wouldn’t say normal, but I was not like others. That I did not take issues just like others, that I had these very low moments, that I had these anxiety inducing moments for nothing. I could be walking on the street and hear an ambulance and go into a panic attack. No idea why. But I was aware of this. And I consistently sought help for it. Because when I don’t acknowledge it, I will end up in the hospital worse. That’s what happened in February where I acknowledged it, I did seek help for days, for weeks. And when I didn’t get it, I just, I lost it.
Joe Coe 21:36
Not easy to share that. Hopefully, it’ll help people that are listening to seek help to talk about this. Find the right person, you don’t have to tell everyone, but you can talk to a friend, you could find support online, who could try to work with a professional, all really positive things. My last question for you, how do you feel about diversity and representation in the migraine community?
Shruti Suresh 22:06
Migraine treatment is focused on Caucasian population. I probably don’t have much of a basis for this. But a lot of my friends from back home are in the US doing migraine research, which is very funny. None of them have migraine and other than me, but I gather from them that a lot of the research and the subjects and everything is directed towards the Caucasian population. And I feel that the rest of us are underrepresented. For example, all this treatment that’s available here are the alternative methods like Allay lamp, or the green light therapy, or anything, right. Tens devices are not available in India. They’re not available in countries where you have other races, you don’t have that. Also, when it comes to diversity, I’d say that women are three times less likely to get medication, when they go to the hospital for migraine. My husband went to the hospital with stomach ache. He had kidney stones the first time and then he had acidity the next time. They gave him morphine for both. I’ve been to the ER several times. And it takes a lot for me to go to the clinic, takes a lot more for me to go to the ER. And they sent me home with over the counter. And I think it has to do with me being a woman and me exaggerating.
Joe Coe 23:27
Do you feel that it’s important to see Indian women represented in migraine stories? And is that something that you’re working on?
Shruti Suresh 23:34
Yes, I do. I’m trying to find them because none of them believe that they have migraine. The people who are spoken to they say that their families are not allowing them to go get a diagnosis because they think it’s just a headache. You know, your grandmother had it, your mother had it, you have it. It’s not a big deal. So I find it difficult to find Indian women to talk about this so that we can represent it correctly. But yeah, that’s the case today. And I think that’s something we have to work on fixing.
Joe Coe 24:03
Was there anything that you would have wanted me to ask that I didn’t ask you?
Shruti Suresh 24:07
There’s just a lot like a whole life experience of it. Which kind of hit me when I got here. That’s when I first realized, “Yes, I do have this problem. My problem is valid. Everything that I’m feeling is connected to migraine; C-PTSD, or mental health and migraine, my personality changing and everything.” It was a lot for me to digest. It is still a lot for me to process. And I’m still trying to figure out what I want to talk about and what else I need to bring awareness to. So discussing this with other people helps me process it better, because it’s taken me so many years to get to this point.
Joe Coe 24:47
Well, I really appreciate your time and energy and I know living with migraine and as a migraine patient myself, it’s not easy to do a lot of these things and we have to really budget our time and energy so I appreciate that you budgeted time and energy for Talking Head Pain.
Shruti Suresh 25:02
Thank you so much for this opportunity.
Joe Coe 25:06
Thanks for listening to Talking Head Pain, a podcast that confronts head pain head on. Do you relate to Shruti’s story? If so, send us an email to [email protected] Or better yet, include a short video or audio clip, and who knows, whatever you share might be included in our future episodes. If you enjoyed this episode, give us a rating and write a review on Apple Podcasts. It’ll help more people like you find us. I’m Joe Coe, and we’ll see you next time. This season of Talking Head Pain is made possible with support from Amgen, sponsor of the Global Healthy Living Foundation.
Narrator 25:52
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Living with migraine as a teenager can be complicated. You’re often misunderstood, teachers wonder if you’re lazy, fellow students question accommodations. In this episode, meet Ellie Donner-Klein, a young professional whose own experience dealing with migraine and getting a proper diagnosis as a teen propelled her to now advocate on behalf of others navigating life with migraine.
S2:Ep2- From Teenager to Migraine Advocate
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Ellie Donner-Klein 00:08
It’s really difficult trying to navigate an academic space where you’re trying to strive for excellence, for learning, to set yourself up for a good future. And then at the same time, be battling a chronic illness that is invisible, so people don’t see it.
Joe Coe 00:22
Welcome to Talking Head Pain, a podcast that confronts head pain head on. I’m Joe Coe, Director of Education and Digital Strategy at GHLF. I’ve lived with migraines for over 20 years, so I understand what it can do to your life. Today, I’m speaking with Ellie, a young professional who shares how she advocated for herself as a student. Listen to how migraine changed the trajectory of her life and what she is doing to help others. Hi, Ellie, welcome to Talking Head Pain. How are you doing today?
Ellie Donner-Klein 00:53
I’m doing great. Thank you so much for having me.
Joe Coe 00:56
And where are you located?
Ellie Donner-Klein 00:58
I’m located in Washington, DC. I’m from California originally. And then I went to college in Connecticut and then promptly moved to DC right after. So I’ve been here for about three years.
Joe Coe 01:06
So what do you do in DC, Ellie?
Ellie Donner-Klein 01:08
Currently I’m working at at health information technology company doing marketing and business development. And I recently just joined them. I was doing health policy consulting right before that.
Joe Coe 01:17
So Ellie, how is your current job helping you handle your migraine attacks? I know that it’s often a struggle to discuss migraine with your employer.
Ellie Donner-Klein 01:26
My current company is absolutely fantastic in terms of helping me kind of live my best life. My boss is extremely supportive of me taking the time that I need. When I was interviewing, and also when I’ve been starting, she didn’t even blink an eye when I was like, “Oh, I have chronic migraine, you know, there may be times that I may not be able to do my job in the same way. But I will always be able to communicate and create contingency plans and health plan, you know, in my absence, to make sure that things work the way that they work.” And she was like, “Okay, I’m absolutely sure that it’s going to be totally fine.” When I was talking with our director of HR when I was onboarding, I told her, I was like, ‘Hey, I have chronic migraine. Can you tell me a little bit more about some of the accommodations that can be made in the office?” She was like, “Oh, we have all of these different things. But also we have a restroom. Typically, it’s for nursing mothers, but like anyone can use it. And it’s very little light, you can turn off the lights, there’s a chair, there’s a nice sofa, we have all of these different things.” But also, one of the most important things is that I actually have flexible working hours. So as long as I’m making my hours per week and per month, I can choose when I can work. And as long as I’m communicating that with my boss, my team, there are no issues.
Joe Coe 02:30
It was really great to hear, Ellie, that your employer is so supportive of you living with migraine. How was the conversation with your employer during the interview process? I think that’s very interesting.
Ellie Donner-Klein 02:41
I’ve been a patient advocate since I was 18. I was diagnosed at 15. And I became chronic very soon after that. And so I went from being pretty able bodied to very disabled in a very short period of time. So my decision when I was starting to interview for internships in college was I’m just going to be very straight up. And I put my blog and the advocacy work that I was doing at that point. I was doing my blog and some social media. And also I just started attending Headache on the Hill, my sophomore year of college, and I’m just very open about it. I put the link in there. And I say, “You know, this is what I do. You know, I’m also kind of a freelance writer with this as well. Here’s all the places where my writing has been featured.” And I try and emulate that migraine is a part of me. It’s a part of who I am, it’s part of you know, it’s shaped my trajectory and shaped where I am currently like I would not be in this position had I not gotten migraine and had my life not fundamentally changed. And I have had a couple conversations that have not gone so fantastic.
Joe Coe 03:41
Can you say what the conversations that haven’t gone fantastic what they are like?
Ellie Donner-Klein 03:46
Some people may not fundamentally understand what’s going on. They may understand that you’re in pain. And they may understand that you’re not doing your job in the way that they want you to be doing your job. But it can be really difficult having those conversations that didn’t go well and feeling like it’s your fault, feeling like you didn’t reflect what you need, or educate them enough about what is going on with your migraine attacks or what you need, whether that’s workspace accommodations, whether that’s teleworking. It was really crushing for me, you know, I had been an advocate for about five years at that point. I have a great understanding of chronic pain and migraine. And I’m really great at talking about it to other people, especially those who don’t really have an understanding yet. And all of a sudden I found myself in a situation where I had no accommodations. And I had to basically figure out like how do I best take care of myself while trying to keep my job because I needed to keep my job. I need to be able to pay my bills, I needed to be able to get my medical care. And it was a really difficult process. And I still think to this day, one of the most important things I took away from that is that you’re not going to be able to have everyone be on your side. Not everyone is going to understand. The most important part is how do you best protect yourself? How do you put up some those boundaries, put up some of those barriers and say, “You know what, I’m in a lot of pain, I need to go home. If you need me, I can work from there. But if you were very staunch in your position that you don’t want me teleworking, that’s okay too. And I will come back tomorrow, and we will recalibrate and figure that out.” So it was very difficult process for me.
Joe Coe 05:17
Ellie were so lucky to experience that. I have a similar experience at Global Healthy Living Foundation. As you can see, and the people listening can’t see, I’m doing this interview pretty much in the dark, because I have a migraine today. I’m light sensitive. And I’m able to do these adaptations and not get judged. And I think that that’s really important because like you said, Ellie, it doesn’t make us feel like we are not being productive. We are productive in different ways. And we have to embrace the ways in which we can be productive and do things in the manner in which we are able to do it. Because we have a lot of value to give, as you said, you have a lot of value to give to your employer. What was your worst migraine attack like? How did you feel? What went through your head? How are you emotionally?
Ellie Donner-Klein 06:03
My worst migraine attack, I think was when I was a junior in high school. This was the first really prolonged attack that I had experienced. Previously, my attacks had ranged anywhere from four days to about a week to a week and a half. And this attack lasted basically the entire spring semester of my junior year. So about four and a half, five months. It was one of the worst things I’ve ever experienced, because I don’t remember a lot of it. I was in so much pain, that my memory just wasn’t working. And it was really difficult because I was in school and I was trying to you know, I’m very ambitious person. I love academics. And all I wanted was to be a normal kid doing normal things. You know, I used to play soccer, I used to play violin very seriously. And all of a sudden, I was experiencing central sensitization. I had allodynia, getting into the shower hurt. My mom is a is a doctor and she had no idea. I was like, “I can’t take a shower because it hurts me.” She was like, “What are you talking about,” she was like, “Just turn the water cooler.” I was like, “The cold water hurts, the warm water hurts, the hot water hurts, everything is hurting. I can’t tell you how to change this or what’s going on.” And at that point, as well, I was also experiencing severe fatigue. Washing the dishes would put me down for hours. In addition to that, you know, I was trying to go through school. But the migraine attacks were so severe and the pain was so severe. And also I was also intractable. So medications weren’t working either. So at that point, I was unable to read, write, or focus, which doesn’t really bode well when you are trying to get through high school. So dealing with that, and also trying to deal with getting a neurologist or headache specialists that could help me because at that point, I think I had seen 10 doctors at that point, who kind of just went, here’s medication, try it, come back in three months. And no one really understood just how difficult that was for a 16-17 year old kid to basically not have her life anymore and lose everything about her identity, and also be in such severe pain that days blended into each other. Coupled on top of that there is also dealing with professors and dealing with the school about absences and miss work. So it was a lot of stress.
Joe Coe 08:20
It’s really important for people to hear that experience and also that you had such a resource in your mother being a physician, and it still took over 10 doctors, and I think that’s the challenge that we all face. I’ve often wondered, oh, if maybe I knew a little bit more about medicine, I can get treated faster. But it seems like even with that there’s a really big gap in understanding migraine as a disease and how it manifests with people. And those symptoms that you talked about, a primary care physician might not recognize as migraine symptoms right away. Did you find during that younger experience that there were people that either really understood what you were going through, or really didn’t understand what you were going through?
Ellie Donner-Klein 09:04
Yes, it was very kind of polarizing experience. I had some teachers who were absolutely amazing, understood that, you know, they knew me before the attacks started or, you know, when I was episodic. And they really understood that this was an illness. This was a disease that I was experiencing, and I was experiencing severe disability. And they didn’t hold that against me. They didn’t say, “Ellie, like you’re not doing your work. You’re lazy.” They understood, no, Ellie wants to do the work. She wants to do things. She’s just physically unable to do that right now. And I was very lucky. I had a guidance counselor who really advocated for me because there wasn’t really a framework at my school for people with disabilities at that point. I mean, this was almost 10 years ago, and my school just hadn’t really had to deal with anyone going through what I was going through or if they did, it wasn’t really public knowledge. And so there were a couple of times that I did have to deal with teachers telling me that they weren’t going to give me accommodations because I didn’t deserve them for multiple reasons. One of the reasons, which I now laugh about, is that one teacher had told me that, you know, it wasn’t fair to have a test be pushed because other kids have extracurriculars as well. And I just sat there laughing going migraine is not an extracurricular, it’s not at all. And in fact, I can’t read or write, which means that I cannot prepare for a test. And additionally, my memory was so bad at that point, because I was in so much pain that I was like, how am I supposed to remember all of the US presidents, in order by year, if I can’t even read the book to get it done? It was a really difficult experience. And I think that’s part of the reason why I started talking about my experience online through advocacy, because I didn’t know anyone else like me. And I was the only person at my school, in my friend group, and the migrant community, which was alive and well, but I didn’t really see a lot of younger people in it. And so I was like, I don’t see anyone that looks like me in this space, really. And it’s really difficult trying to navigate an academic space where you’re trying to strive for excellence, for learning, to set yourself up for a good future. And then at the same time be battling a really difficult and severe chronic illness that is also invisible, so people don’t see it.
Joe Coe 11:14
If you had to give a student or family one piece of advice for navigating student life with migraine, what would that advice be?
Ellie Donner-Klein 11:24
My advice would be, especially if you’re seeing a doctor, and you have a doctor who can provide documentation, you are entitled to reasonable accommodations. There are reasonable accommodations that can be made. I got lucky in the sense that I found my champion soon. And I had one in college as well. I, when I was picking which college I was going to attend, having a very good office of disability was paramount. It was actually a lot of the reason why I chose the college that I did. So finding a teacher, a guidance counselor, someone who is receptive and open to learning about migraine, about what’s going on with you, is really important.
Joe Coe 12:02
So why is it that so many doctors don’t take migraine seriously, I wanted to get some answers from a leading neurologist. So I sought out Dr. Peter McAllister. He’s the Director of the New England Center for Neurology.
Peter McAllister, M.D. 12:15
Once you get your head around the idea that migraine is a medical condition, it should be no different than getting someone accommodation for asthma or diabetes or Crohn’s disease or any other chronic medical condition. So I think part of what doctors do, in addition to taking care of their patients, is to advocate for them. In high school, there is a process and a program known as a 504 plan, because it was a statute number 504. And it allows for reasonable accommodations for those who have a chronic medical condition. And many times patients and their parents have no idea that migraine would qualify for that. What it does is it codifies that they have the condition, and it allows them to have flexibility. If the child misses school because of a migraine, they’re allowed to make up work. If they miss an examination, they can repeat it. They can have more time to get homework in if they’re in a really bad cycle, etc. I advocate, in those who have significant functional disability, for their migraine to get on a 504 plan. Because as I say, migraine isn’t your fault, you did nothing to deserve it. And you might as well take advantage of these programs. Now many universities will allow the 504 to transition into college. So I often am asked to write a brief letter that someone has high frequency episodic or chronic migraine, they’ll occasionally miss some classes to have those excused, etc. So I think that patients and their parents should call out their doctor to make sure they’re advocating both in the high school and college level.
Joe Coe 13:53
And one follow up question. Folks might not know what functional disability is, can you give a brief definition of that?
Peter McAllister, M.D. 14:00
When we think of disability, we often think of crutches or wheelchairs, etc. Functional disability means the disease process, that is the attack of migraine, has caused you to miss something that’s important to you. So functional disability centers around missing work, missing family obligations, missing social obligations. I’ve had patients who have missed vacations. The occasional patient who has missed most of their wedding day. What we say is that the good news is migraine is a non-lethal condition. But the toll that it can exact on one’s life can be quite profound and functional disability is that.
Joe Coe 14:41
Migraine has affected Ellie in her life as a student. And I also wondered if it’s had an impact on either her faith or in her relationships.
Ellie Donner-Klein 14:49
It’s impacted me in all aspects of my life. To be honest, I felt like I was a very different person before I got sick. Starting with the faith. So I’m Jewish and I am very proud to be Jewish. And I have, you know, it’s been a very big part of my life. You know, I grew up going to synagogue every Friday, and I went to Jewish camp over the summers. And once I got sick, it completely changed my relationship. I couldn’t go to services, and I couldn’t handle the lights. And I did one summer at camp, I think this was when I was episodic, just turning chronic at that point. And it was really, really difficult because I wasn’t allowed to keep medication on me, for good reason. I mean, I understand you’re a young kid, I was 15, almost 16 at that point. So I had to go to the infirmary every single time. And obviously, when you’re at camp, and you’re hiking, and you’re doing other stuff, it can take a long time for you to get to the infirmary and get the medication. So my attacks were not great. They actually really got in the way of my experience. And so I didn’t actually return to camp after that. Part of that was for that reason, but also, because, you know, I kind of wanted to see what else I could do. I went to France next year for a study abroad program, and also had similar issues there. My relationship with spirituality and migraine really changed, I think, when I got to college, because I just was not able to put time into going to services and doing the things that I wanted to do because I need to take time to rest. I was a full time student, I was managing clubs, and I, you know, I was in a sorority, and I needed to take care of myself and prioritize my work and what I was doing. And it really made me question who I was and what I was doing, because I was like, well, if I’m not going to services on Friday, what am I doing? What does that mean, for me, as a person who identifies as Jewish, and who feels like Judaism is a major part of my culture and who I am? And what I quickly realized was, there are a lot of ways to be spiritual, there’s a lot of ways to live your life, your faith, and, you know, through some of those tenants that I grew up with, doesn’t necessarily need to be that I need to physically be in that spot. And I think releasing myself from that expectation of feeling like I had to be somewhere to do something was really critical. And the other place that I think really was really key as well is that fasting is a part of Judaism. There are some small fast, there are some slight longer fasts, and the biggest one, generally, at least I’m reformed, is Yom Kippur. And when I was younger, I used to fast, A little bit before my Bat Mitzvah and then after my Bat Mitzvah, I used to fast. And as we all know, sometimes with migraine, fasting can lead to migraine attacks. And it was really difficult for me, because I felt like I was letting my family down, I felt like I was letting the people around me down. And I really struggled with it. But one of the tenants in Judaism is, you know, you’re not supposed to harm yourself. And if you are sick, you are not supposed to fast on Yom Kippur. If you have an illness you’re not supposed to, to fast. And even though that’s there, and a part of my religion, it was still really difficult for me to internalize that, and to say, it is okay for me to eat. And it’s okay for me to do what I need to do to keep myself healthy and, okay. It’s been a really interesting thing for me, especially, you know, with the rise of virtual services as well, it’s been a lot easier, you know, I can control my environment a lot better. I can have the lights off, I can have the sound down. You know, there are a lot of different ways. But I think what I’ve learned is that your religion and your faith is not bound to a specific space. You can really live your life in a lot of different ways embodying some of those really important values and tenants by prioritizing your health and what you need, and not feeling guilty for not being able to worship or live your life in the same way that the other people in your community are.
Joe Coe 18:46
So powerful. I want to bring up a concept that I know you know, tikkun olam, healing the world. So as a migraine advocate, how are you healing the world?
Ellie Donner-Klein 18:58
I am healing the world by talking publicly about my journey. Part of the reason why I started my blog was because I wanted other young people to know that they weren’t alone and better understand that there are other people who are going through similar issues, whether it’s migraine or another chronic illness. There’s a whole community of us out here that loves and supports each other through some of the hardest points of our lives. The other thing is that when I was 19, so my freshman year in college, I actually had a blood clot. I did not get care for four days. I went to the ER and I had a doctor tell me that I had slipped on my arm wrong. And then that it was peripheral neuropathy and refused to run tests. So four days later, I ended up back in that same ER and had to advocate for myself, and they refused to test me because of the notes in the file. And I ended up having to say, you know, “I’m gonna leave. I’m going to leave if you’re not going to treat me.” And the doctor was like, “Where are you going to go?” I mean, I went to college in the middle of Connecticut. So she was like, “Where are you gonna go and it’s midnight.” It was like, “I don’t know. But if you’re not going to treat me, I’m gonna leave, I need to take care of myself and you’re not helping me in any way, shape or form. You’re refusing to run a test.” So she ran a test that came back that I had a blood clot in my right brachial vein. This is in February. So if I had fallen, it was little icy, like it could have just launched become a pulmonary embolism. It was then when she came back after that CT scan, and said, “If you hadn’t advocated for yourself, I would have never known that this was here.” And I just burst out in tears. Because it was in that moment that I realized even more that me as a white woman who was you know, I was in college educated, my mom’s a doctor, I armed with medical literacy, I understand how to talk about my health, and I had been doing things for a long time. And I was like, if I’m still struggling to get the care that I need, there are so many other people that English is not their primary language, that they don’t know what’s going on with them, they may be having invisible pain, but doctors may not understand what’s going on with them because you need to be able to translate what’s going on with you to be able to get that medical care. But if you’re in pain, and also racism also plays a part in this as well, and you have black or brown skin, there’s a huge history of systemic and medical racism as well. That experience really cemented to me that there is a much larger conversation than I need to be taking a part in. That addressing health equity and addressing health disparities is something that needs to happen. And specifically also in the migraine community, it is people who are privileged and who are white, who need to be able to start talking about this in a way so that we then we can really truly support our BIPOC community and members. We’re all experiencing varying levels of the same thing. But adding in access social needs, income inequality, also with this in migraine treatments. So that experience really helped me realize I wanted to start making changes in the world. At that point, I didn’t really know exactly how and so that’s when I kind of ramped up on the advocacy. And so when I was working in health policy, I was working to advance social determinants of health policy. At my current job, I’m actually part of a Health Equity Task Force. And we actually just released our first blog couple weeks ago that I co-wrote with one of my co-workers, talking about the role of health IT and the role of data in making sure that there’s gender affirming language, that sexual orientation, that race, language preference, ethnicity, disability status is all included in our clinical documents that are sent every single day. We’re doing some of that work internally. And it’s actually it was really rewarding for me to actually start doing this at my current company because we work with a lot of different entities across the United States in healthcare, and us saying, okay, in some of our markets, people aren’t really sending gender, race, language, any type of health equity data that needs to be sent. And so I kind of see my role with tikkun olam in two things which is one, to be a resource and support for people who are either just starting on their marketing journey or need someone who understands what’s going on and can talk with them. You know, one of my best friends from college became episodic our senior year. We moved in together in DC, and she’s been chronic for the past two years.
Joe Coe 23:12
Chronic versus episodic migraine. That’s a concept that many people don’t understand. But Dr. Peter McAllister says the definition is rather simple.
Peter McAllister, M.D. 23:22
We somewhat arbitrarily call those folks who have 15 or more headache days per month, of which at least half of them are migraine or migraine like, chronic migraine, and those who have 14 or less headache days, we call those episodic. And the question is, why? There’s very little daylight between someone who has, say, 13 or 14, versus someone who has 16 or 17. But it’s the extremes, it’s the ends of those that make a big difference. Those who have one or two or three migraines a month are very different, we found, from those who have 17, 22, 28 migraines a month. That latter group is more likely to have more significant functional disability, more likely to be depressed or anxious, or have a history of trauma, they’re more likely to be overweight or obese. They’re more likely to have a lower socioeconomic status, because even if they’re good at their job, calling in sick repeatedly tends to get one fired. So we’ve identified a more disabled group from a less disabled group. It’s not to say that episodic migraine isn’t awful at times. But certainly having one or two that you can treat with an acute medication is really a different animal than those who have more than 15.
Joe Coe 24:41
Whether you’re chronic or episodic, it’s important to get a diagnosis and get on a good treatment plan. We have to wrap up but before we do, I want to ask you, how would people find you, people that want to connect with you?
Ellie Donner-Klein 24:56
People can find me in a lot of different ways. I’m very active on social media. People can find me on Twitter, on Instagram, I also just made a Tik Tok a couple months ago too. I’m on Facebook as well. And most of my writing is through my blog, which you can find by searching Chronic Migraine Ellie. I just bought my own domain, which was a huge milestone, and hoping to launch that by early next year. So that’s how people can find me and I’m always very responsive to DMs and other messages. That’s part of the reason why I really love being in the migrant community is being able to reach out and support other people and be a part of their lives and their treatments.
Joe Coe 25:30
Twitter, Instagram, Facebook is Chronic Migraine Ellie?
Ellie Donner-Klein 25:34
Yes, both my Instagram and my Facebook is Chronic Migraine Elley, and then my Twitter is Migraine Ellie. And I think I’m also Chronic Migraine Ellie on Tik Tok as well.
Joe Coe 25:45
This has been such an important discussion to have with our community. We often don’t hear about how migraine impacts students, how migraine impacts our relationship with faith, and how migraine impacts the ways in which we find employment. So by talking about all of those different topics, you’re helping to raise awareness and to amplify voices of people who likely aren’t heard, and need to be heard more. So we hope that our audience appreciates your energy and your story as much as I do. And I know that people have a lot to learn from you and with you, and I appreciate your time and energy.
Ellie Donner-Klein 26:27
Thank you so much for having me. It was a pleasure being on today.
Joe Coe 26:30
Are you a student or young professional living with migraine? I want to hear from you. Send us an email to [email protected] Better yet, include a short video or audio clip, and who knows, whatever you share may be included in a future episode. Thanks for listening to Talking Head Pain, a podcast that confronts head pain head on. If you enjoyed this episode, give us a rating and write a review on Apple Podcasts. It’ll help more people like you find us. I’m Joe Coe, and we’ll see you next time. This season of Talking Head Pain is made possible with support from Amgen, sponsor of the Global Healthy Living Foundation.
Narrator 27:18
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
When you think of migraine many of us don’t think of or see Black men. In this episode, meet Qasim Amin Nathari, who takes us on his migraine journey while getting deep about the intersections of race, masculinity, and faith when it comes to managing migraine.
S2:Ep1- #BlackMenHaveMigraineToo
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Qasim Amin Nathari 00:08
It’s very rare that I see or hear Black men in the space. And I don’t know if that’s just the thing about the Black man and we don’t want to talk about our pain and we have to be strong and tough, but me, I’m going to talk about it. I don’t buy into the stigma that it makes you any less of a man or makes you any weaker.
Joe Coe 00:24
Welcome to Talking Head Pain, a podcast that confronts head pain head on. I’m Joe Coe, Director of Education and Digital Strategy at GHLF. I’ve lived with migraines for over 20 years so I understand what it can do to your life. Today I’m talking about Qasim Amin Nathari about the unique challenges he faces living with migraine as a Black man. From his treatment in medical settings to navigating his faith in chronic disease. Qasim, how are you doing today?
Qasim Amin Nathari 00:53
I’m doing good, Joe. How are you?
Joe Coe 00:55
I’m great. Where are you located?
Qasim Amin Nathari 00:57
I’m in Jacksonville, Florida. The Sunshine State.
Joe Coe 01:02
And how are you feeling today?
Qasim Amin Nathari 01:04
Today I’m doing good today. Today’s a good day. You always grateful for good days.
Joe Coe 01:09
What does a good day look like for you?
Qasim Amin Nathari 01:11
Good day for me is when I’m even manageable in terms of migraine pain. Of course the perfect day is when I’m pain free. And I do get those. I’m fortunate you know that through my management I’m able to squeeze out an occasional completely pain free day. But for me a good day is when I’m at least able to function enough to get my normal day to day routine done. My writing, research, those things that I would do on a normal day that I just can’t do during migraine episodes because of you know, obviously managing the pain, the lack of focus, and all the other things that come along with the challenges about migraine, particularly when you’re like me, I’m chronic severe. I’m not intractable anymore, thank God. But I’m chronic severe. So I have more not so great days than I do great things, but I’m grateful for the good days.
Joe Coe 02:02
I am too I know the feeling as someone who lives at migraine myself. I want you to think about your worst migraine attack or your worst day. What was that like? And how did you feel?
Qasim Amin Nathari 02:13
My worst migraine day ever. I can vividly remember it because it was one of the few times over the more than two decade journey that I’ve had with migraines, I’ve been in the emergency room a handful of times. I’m not one to go to the emergency room. It’s just a bad experience. And as I commented the other day on another blog, the emergency room is probably the worst place for a person who lives with migraine because of just the level of care or lack of care and sometimes just a lack of empathy. So for me the worst migraine day ever was back in 2009, when I had been in an episode for three day. Nothing that I did would get me any relief. And finally I just gave up and went to the emergency room. And before I was even seen beyond signing my name and things like that I was there for almost eight hours. After I waited all that time, finally was seen. You know what they treated me with, Joe? They gave me an Imitrex.
Joe Coe 03:14
Probably could have taken at home.
Qasim Amin Nathari 03:16
Could have taken it at home. I had taken it at home already during the preceding time before me coming there. Obviously it didn’t work, which is why I walked into an ER. So my suggestion of the IV treatment that I had received once at another hospital that worked effectively was kind of a Compazine. I had a whole protocol that I had worked on with another doctor before I moved to Philadelphia and like the attending at that particular emergency room really wasn’t even trying to hear like listening, “Yea. Okay, okay. Okay.” Left came back. Imitrex and some water. Take this, follow up with your doctor. That was it.
Joe Coe 03:52
Like Qasim, hundreds of people living with migraine often have terrible experiences in the emergency room. Dr. Peter McAlister is a board certified neurologist and the director of the New England Center for Neurology. When do you tell your patients to visit an ER and what do you tell them to communicate when they’re there?
Peter McAllister, M.D. 04:12
I look at the emergency room for a migraine patient as a really bad idea, by and large. Emergency rooms are very important for acute care, car accidents, heart attacks, gunshot wounds, etc. But it’s no place for a person with migraine disease. It’s loud, it’s bright. Again, going back to the stigma of migraine, you may get some personnel there who have no idea of the disability of migraine and not treat it seriously. Often, hospitals’ emergency departments will use nonspecific medications and things like narcotics, which really studies have shown do no good. They can dull you up and make you tired to go home and fall asleep on your bed but you wake up with a migraine the next day. So almost always one should try not to go, in fact I consider it failure on my part, if one of my patients tells me that they had to go to the emergency room. My job is to give them acute medication and a backup plan and a rescue plan such that they don’t have to go to the ER.
Joe Coe 05:14
Qasim says that when someone shows up at the emergency room with a serious migraine attack, he wishes emergency room personnel could view the condition with greater urgency.
Qasim Amin Nathari 05:23
For a migraine patient, and this is not to over exaggerate, the pain of a person who’s at the highest level of migraine can be equivalent to what a person may feel that is sitting in an ER that got shot. You just don’t see the blood. So because it’s an invisible pain, it oftentimes can make people tend to just be, I’m trying to be fair, I don’t want to say dismissive, but it doesn’t move them, it doesn’t give them a sense of urgency around your care and your treatment. So I want them to know that because you can’t physically see the pain, the way that I describe it is as bad as it is. And I need to be treated the same way you would treat a person who needed to be triaged because they were bleeding, you didn’t want them to bleed out. I would expect the same kind of treatment.
Joe Coe 06:08
That’s really powerful.
Qasim Amin Nathari 06:09
And the other parts of this, Joe, is that I would want to be acknowledged that as a Black man, because I know something about my migraine protocol that I’m not just subconsciously looked at as the person that just wants to come in there and get a higher level of opiate or drug. And that happens sometimes, you know, where Black men and women of color that have been in you know, severe migraine episodes, and are treated the same way. And I kind of wonder, sometimes, it has to go through my mind, because we living in America, we don’t frame everything or view everything through the lens of race. But it’s sort of reality that we have to accept, and oftentimes wonder that with my resume, my credentials or things that I’ve been blessed to do in my life, that if that was presented to somebody, and I was of a different complexion, if I would be treated with more of a sense of urgency, if I went and went in and say, “Oh, yeah, I ran a communication department for a major city. I put together a communication mechanism for a mayor who’s now a US senator.” If I went in, as we say, flexing, then I might be treated differently than just a person who’s just coming in pretty much at the mercy of the hospital staff, who just humbly seeking some care to get out of the pits to this horrible episode that I’m in.
Joe Coe 07:21
And that must be a really hard balance between knowing a lot about your disease, knowing that structural racism is real, that the studies show and prove exactly what you said. But also being vulnerable in an attack, how do you balance, wanting to advocate and educate with needing to get these physicians and other practitioners kind of on your side to get the treatment that you need in that moment?
Qasim Amin Nathari 07:48
I’ll be honest, Joe, it is no balancing act. I press on, even in the worst pain. I like to use this term. I’m politely relentless, when it comes to advocating for myself, particularly in those moments. And honestly, there’s been a few times that I’ve been successful in being able to do that. But there’s other times like I actually went to a neurologist for one visit here when I moved to Florida, that I was referred to by my new primary here at the time. And my experience with this one doctor was so bad that I told my primary, I’m not going back to him, let’s find another neurologist. And the reason the experience was so bad, Joe, is because I was trying to give him my experience with a medication that he was insistent that I try again, because they’ve made some improvements to it. And I said, “Listen, I appreciate you. But I’ve studied the improvements that they’ve made in this medication. And the improvements aren’t significant enough to make me think that I’m going to have any different outcome than what I had when I took it before. So I’m kind of reluctant to try that. Can we try something else? And then if we have to circle back to this, this remixed version of the same medicine that I tried years ago, and I’m willing to go back to it. But I don’t want to start with that. I don’t want my baseline to be a medicine that I tried before, that had horrible side effects and a horrible outcome for me.” And he was just adamant, “Oh, no, it’s completely different. You know, you need to forget about what you went through before. Almost essentially it’s a new medicine,” is what he try to tell me and I’m in my mind, I’m like, I did enough research. No, it’s not they just rebranded the medicine already know this.
Joe Coe 09:20
Qasim, says it can be difficult to have a two way conversation with a doctor, because often it feels like the doctor already made up their mind about treatment options.
Qasim Amin Nathari 09:29
Sometimes in those spaces, and I love doctors. I have developed some good relationships with doctors. But you know what has been said about doctors sometimes. They have this complex sometimes that once they’ve made a decision in their mind is shared in terms of you being able to give input, but the ultimate decision that they consider to be the right decision is the one that they’ve already called out in their thought processes. So there’s not really much input you can give other than just being heard, you’re not going to really, for me, I don’t see that you’re really influence their decision in one way or another.
Joe Coe 10:04
Can you talk about stigma about being a Black man with migraine? When we know that the picture an image of a migraine patient is not a Black man, it’s not a Black person. It’s a woman in their 40s and 50s that’s white, that has a career. How do you address that?
Qasim Amin Nathari 10:23
It’s difficult. It’s a challenge. And honestly, it’s a work in progress. I’m still trying to figure it as I go. I think one of the things that has worked for me is that I haven’t really been all over the place in the migraine community in terms of treatment. So other than the one bad experience I mentioned in ER, and then the other doctor that I mentioned previously, my circle has been pretty small. So I don’t have to navigate the stigma as much as I would, if I didn’t have a certain level of care, meaning if I were just underinsured, and was going to just random doctors, because I’m grateful that you know, I have good insurance. And I’ve been able to develop relationship, particularly with a couple of neurologists, over the lifespan of my migraines, I haven’t had to deal much with the stigma, but invariably, it does pop up. And for me, when I’m in those spaces where it has popped up, I’m always even just advocating for the next person. I’m not just there in that moment, although it’s my pain. I’m always thinking, what can I say or do at this moment that it would be a teachable moment for this person, so that if they have to encounter somebody else after me that is maybe not able to articulate or advocate for themselves in the same way, what would they do?
Joe Coe 11:42
And that’s really important, because you talked about sometimes we have to flex when we have this knowledge and our experiences, but not everyone can flex in the ways that you and I can flex with medical providers. So really doing that work for the next person when we can because sometimes we can’t and that’s okay, too. But when we can, it’s really, really important. I heard something very exciting that you’re starting a initiative, a hashtag on social media, #BlackMenHaveMigraineToo. Can you tell us a little bit more about that hashtag and why you felt you needed to create it?
Qasim Amin Nathari 12:19
Well, first and foremost, I’m going to give credit where credit is due. I’m creating the hashtag, and I’m creating the not for profit organization by that same name. But the actual term Black Men Have Migraine Too is actually the title of an interview that my friend and colleague, she’s my shero, in the migraine advocacy space, The Migraine Diva, Jamie.
Joe Coe 12:42
Oh, we’re know Jamie so well. Jamie is a personal friend.
Qasim Amin Nathari 12:46
She’s a warrior. She did an interview of me and she called the interview “Black Men Have Migraine Too.” It’s on her blog. And that interview resulted as a result of one morning, part of my morning routine while I’m up writing after I’ve, you know, said my prayer, have my tea, what have you. I’m always watching Good Morning, America. I’m watching and they’re doing a segment on migraine, which is rare, you know that in most of those shows, they rarely ever do segments on migraine. And lo and behold, they’re doing this segment with Dr. Jen Ashton and her guests, one of the people featured that day, was this woman who was known as The Migraine Diva, Jamie. So I was just blown away by you know, her advocacy and her passion around this. And I actually tweeted her and Dr. Jen, how I appreciated the segment and being in that space to be able to bring so many people into the awareness of migraine. And from that point, Jamie contacted me, and we forged a bond around our shared experience and she interviewed me. We did a very extensive interview, which I would recommend everyone go to her blog and read it because it really gives a lot of insight on a number of variables. So for me, it started to become clear. As I became engaged in the migraine awareness and advocacy space, that something had to be done because for far too long, the face of migraine has traditionally been what it’s been. Middle aged straight white women. Even in the advertising until you started to see a Serena Williams and Whoopi Goldberg. I’d never seen a Black person or a person of color in a migraine commercial. So for me after she did this article, immediately that title stuck in my mind, and I said, you know what, I’m going to own that, and we’re going to run with it. So my goal now is to try to do as much advocacy on behalf of Black men and people of color in general, but we have a lot of people in that space. But from my knowledge and based on the research I’ve done and I’m continuing to do, I don’t see a lot of people involved and engaged in that space, particularly focusing on Black men. And I think that’s really tragic, because in doing research, I found so many high profile Black men who lived with migraine. So I think that at this point, you know, we need to do more advocacy. And we need to even have the pharmaceutical companies move the needle, in terms of even featuring some of these people in their commercials. There’s no reason whatsoever that I can see that I see a Serena Williams commercial. And I don’t see a Dwayne Wade commericial.
Joe Coe 15:18
Very true.
Qasim Amin Nathari 15:19
He wanted to wear tinted goggles and a competition committee ruled against him. They said that he had an unfair competitive advantage. Meanwhile, the lights of the American Airlines Arena was triggering migraines for him during games. So we’ve seen all these things done. So I think for me, we need to get high profile Black men that have lived with the challenges of migraine, we need to get them more visibility. Thus, also maybe having more Black men who maybe don’t even know that the headache that they’re having is migraine. The awareness needs to be brought more to the forefront.
Joe Coe 15:54
The way that we build communities, they’re so powerful and beautiful with the migraine community. So I really appreciate you doing this work that is so needed and so devalued. We need to really find ways to amplify and spread your message because it is so important. I have another question. You were talking about getting diagnosed, what type of doctor first diagnosed you?
Qasim Amin Nathari 16:18
I was first diagnosed by a general doctor, my primary at the time. I was just having these headaches. And I had experienced headaches enough to know that these weren’t normal headaches. And as I started to describe the nausea and other things that was going with them, he told me all those sounds like migraines. So he diagnosed me and that was my first introduction to beta blockers. He had me on inderal. And then ultimately I’ll follow up with a neurologist. But it wasn’t until 2003 after I had my first hemiplegic migraine that I went full consultation with a neurologist, and I was diagnosed as having migraine disease. Then by 2005, after just having two bad years, I had a horrible two year run from 2003 to 2005. And in 2005, I was doing some research. I was always reading books about migraine and I came across this book called “What Your Doctor May Or May Not Tell You About Migraine,” and it was written by Dr. Alexander Mauskop. And when I read the book I’d go to the back of the book, I find that he runs a place that was called the New York Headache Center. And by this time, I’m back in New Jersey. So you know me, I’m going to write an email, I’m going to get to see this doctor. When I wrote him outlining what my situation was, two days later I got a call back from his office said he wants to see you. And then after my initial visit with him, that’s when I was diagnosed like, chronic severe. So from 2005 up to now I’ve been living with chronic severe to the point now that I’m you know, classified as being disabled, I couldn’t work full time anymore.
Joe Coe 17:57
It’s important for people to understand that you likely will get diagnosed in a primary care setting. Particularly more marginalized folks, we’re not seeing specialists.
Qasim Amin Nathari 18:07
For sure. Because again, most people that are underinsured, you’re not going to be able to afford just being able to go to a neurologist and pay out of pocket. In fact, one of the thing that interrupted my treatment years ago with Dr. Mauskop is that his practice had went to a new insurance practice. So I was treated by him for about a year, maybe a year and a half, then he offers went to all cash. And at that point, I had to stop seeing him. Because I didn’t have the insurance that I have now.
Joe Coe 18:38
We often don’t hear about how chronic illness and pain impacts relationships with faith and how faith can help chronic pain and diseases like migraine. You talked about being religious and praying earlier. Can you talk about how your faith and living with migraine intersects?
Qasim Amin Nathari 18:57
I think now, at this phase of my life, I’m more spiritual than I am religious. I’m a Muslim, I believe that I’ll always be a Muslim. But I’m more spiritual because sometimes when folks talk about religion, it gets bogged down in theology and doctrine. And for me, it transcends that. But certainly faith has played a role. But I’m gonna tell you something, Joe, it’s particularly tricky when you’re a Muslim who deals with a chronic illness. Part of the understanding of Islam, the doctrine of Muslims, is that any type of pain is an expiation for sins and shortcomings. So what oftentimes happens is that I don’t talk about pain a lot, but when the conversations will come up invariably around migraines or whatever, if I’m around one of my Muslim friends, one of them may invariably remind me of that part in that aspect of the faith. Like, you know, that’s the expiation for your shortcomings, you know, for your sins. You deal with the pain now, it lessens the pain, you’ll have to deal with it in a life that come. And that’s good, that’s a noble reminder from a faith perspective. But when you’re going through that on the ground in real time, you kind of would like to maybe have a little bit more of an empathetic conversation around this pain. So that becomes an issue, to the point that many people that are Muslims and they have any type of chronic illness, they won’t share their story a lot, they won’t talk about it, because it’s one of those things that it just kind of becomes ingrained in your indoctrinated with the idea of like, just live through it. Just keep pushing, persevering. A person may make a supplication or pray for you, you know, you know, pray to God shows you mercy in your pain. And then we’ll move the conversation on. So for me, I started to know that I had to really do a lot in terms of my own self care, my own self affirmation, because it’s not really but at least within my circle of Muslim friends, and don’t get me wrong, I have, you know, the few friends I have I considered good friends, they’ll call and check on me. But I don’t think you’re going to be able to have the same conversations with Muslims around pain that you may have with a person that may not be in that space.
Joe Coe 21:08
How do you navigate different religious or spiritual practices like fasting with migraine? We know that that could potentially be a trigger.
Qasim Amin Nathari 21:16
It was the issue for me when Dr. Mauskop first told me in 2005, believe it or not, my first visit with him was during the month of Ramadan, the month that Muslims traditionally fast. And after we went through my medical history and all that, he said, “When I tell you something,” he said, “I know you’re not going to like it, because I know that your faith means a lot to you.” And he said, “I can see that about you.” He said, “The first thing you’re going to have to do, you’re gonna have to stop fasting.” He said, “You can’t fast anymore.” And I looked at him, I’m like, why, he said, “Because fasting is a major trigger for you, you’re in like that worst percentile with fasting would be an immediate thing to send me into severe episodes.” So I had to come to terms with that. But then it made me delve more into how we understand the options to fasting as a Muslim. And I started to read and be more cognizant of the things that you can do outside of fasting and still observe Ramadan, if you can’t fast you feed certain number of people that are poor or less fortunate, and all these other things that you can do. And it also made my practice of the month of Ramadan, a more spiritually rewarding practice for me, Joe, because I wasn’t fixated on a whole idea of just getting through a day without eating or drinking. I started to see what other benefit I could get from that particular month of worship and month of reflection, and all those things that don’t have nothing to do with it. So once that part was removed from my life, and from my practice as a Muslim, then I became more in tune with the other aspects of spirituality that didn’t have anything to do with the quote unquote ritual of fasting.
Joe Coe 22:54
Qasim had to recalibrate how he connected with his religion, since he realized how much of a trigger or strain fasting had in regards to his migraine attacks. I asked Dr. McAlister, to explain the science behind why certain things like fasting could potentially be a migraine trigger.
Peter McAllister, M.D. 23:12
It turns out that the stressors in life can precipitate migraine, and it’s usually the change or the drop off that triggers it. For example, dropping barometric pressure during the storm, the migraine brain is more sensitive to it. The change in estrogen during a menstrual period, the migraine brain is more sensitive to it. And the same thing goes for fasting. So when we fast, we get hypoglycemic, our blood sugar drops. And that drop is felt by the migraine brain and can be a trigger. And we also get dehydrated, although water is certainly allowed in passing, but often it’s not adhered to. And dehydration can also be a trigger. Many patients who talked to their spiritual leader, the religion allows for medical conditions to have an exemption from fasting. So either one can fast and take migraine acute medication as needed, or speak to their spiritual leader and probably they can get an out.
Joe Coe 24:12
Qasim is Muslim. I asked him how the doctrines of his faith come into play when he brings up the subject of migraine.
Qasim Amin Nathari 24:19
You’re going to always have a few friends and people that tell you well maybe try fasting every other day, people who just want to include you in the process. So now they want to give advice in terms of what it is you have to do. So you can cave to that out of peer pressure. But I was one even as a child, I was never moved by peer pressure. So I’m obviously not going to be moved by one now. So I was able to navigate that, but it comes up, you know, people would bring that up in conversations, you know, maybe kind of maybe do a couple of days out the month to get the reward. No, I believe that I worship a compassionate God. I’m still going to get the reward. He’s already given me the prescription on what I can do if I can’t fast, it’s been clearly outlined. So I don’t need to do anything to make an outward show of my faith. I don’t need to wear my faith on my proverbial sleeve and put myself in jeopardy fasting when I know that there’s something that’s detrimental for me. But that process can be an evolution for anybody in any phase when you have to revisit, or realign your life with something that has before then, been a principal part of your faith expression.
Joe Coe 25:20
You just inspired me if people ever asked me what I’m giving up for Lent, it will be unsolicited medical advice.
Qasim Amin Nathari 25:28
I like that.
Joe Coe 25:29
I really appreciate your time. Was there anything that we missed that you wanted to cover?
Qasim Amin Nathari 25:34
No, other than the fact that I really appreciate you having me on. Again, you know, it’s very rare that I see or hear Black men in this space. Although now because of the past couple of years since connecting with Jamie, I’ve been involved. And she’s given me entree and invited me into people, while I’m not the only Black male in that space. But to be honest, other than a few doctors, I actually have been only patient even still. And I don’t know if that’s just the thing about the Black man. And we don’t want to talk about our pain. And we have to be strong and tough. So you can’t get most of us in but me I’m going to talk about it. I don’t buy into the stigma that it makes you any less of a man or makes you any weaker. And I think that in order for us to really be able to spread the word and raise the awareness of this being the challenge for many men that they bear silently. The only way we’re going to be able to break that stigma and overcome that obstacle is through conversation and just being honest and forthcoming and the only way that you’ll get help is by actually just sharing what it is you’re dealing with and seeking proper medical diagnosis and care and then you can improve the quality of your life instead of just living in grin and bear it as they say. That can’t be the path forward. And I think that we all want a life is better than that.
Joe Coe 26:49
You mentioned you have a podcast, where people find that?
Qasim Amin Nathari 26:52
It’s called “From All Aspects with Qasim Amin Nathari. And you can find me out on any social media, Twitter, Instagram, under Amin Nathari. And on my website, aminnathari.com.
Joe Coe 27:04
Thank you so much.
Qasim Amin Nathari 27:05
Joe, appreciate you. Thank you so much.
Joe Coe 27:09
Qasim’s story has something we all can learn from. I would love to hear from you about what from Qasim’s story you found to be most impactful and insightful. Send us an email to [email protected] Better yet, include a short video or audio clip, and who knows, whatever you share may be included in a future episode. Thanks for listening to Talking Head Pain, a podcast that confronts head pain head on. If you enjoyed this episode, give us a rating and write a review on Apple Podcasts. It’ll help more people like you find us. I’m Joe Coe, and we’ll see you next time. This season of Talking Head Pain is made possible with support from Amgen, sponsor of the Global Healthy Living Foundation.
Narrator 27:59
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Migraine as a child. Migraine on vacation. Migraine at work. Whatever their age and wherever they are, people around the world struggle with migraine. In this episode, we hear from a leading migraine advocate who shares his journey and how he now helps people overcome the stigma of migraine.
“I would get these periods I sort of called them like a honeymoon response, where you’re so hopeful that it works that it actually does for a period of time,” says Carl Cincinnato, Executive Director of Migraine at Work and co-host for the Migraine World Summit. “But then you kind of run out of “hope-ium.” And all of a sudden you go back to your baseline of regular attacks.”
EXTRA- Finding “Hope-ium” to Fight Migraine
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Carl Cincinnato 00:09
I would get these periods I sort of called them like a honeymoon response, where you’re so hopeful that it works that it actually does for a period of time. But then you kind of run out of hope-ium. And all of a sudden you go back to your baseline of regular attacks.
Joe Coe 00:26
Welcome to Talking Head Pain, a podcast that confronts head pain head on. I’m Joe Coe, Director of Education and Digital Strategy at GHLF. I’ve lived with migraines for over 20 years so I understand what it can do to your life. This podcast is a two way connection, and I want to kick it off with one of your comments. This week we heard from writergal54304. And she shares, “One of my favorite podcasts to listen to while I’m cooking or working out. The content is always related to me as a person who lives with migraine disease. The uplifting banter between the host patient provider is why I look forward to tuning in to each episode. This is one happy listener.” And writergal, I’m one happy host. Thanks for your review. We invite you to go to Apple Podcasts, write a positive review and leave an honest five star rating. And wherever you’re listening, make sure to click the subscribe button so you never miss an episode. In this episode, I’m talking with Carl from the Migraine World Summit. Carl’s a longtime friend and powerful advocate for people who live with migraine. In this episode, we discuss hope, relationships, and learn about the most powerful takeaway Carl has received while producing the Migraine World Summit. I’m really excited to have you on Talking Head Pain, Carl. For those that don’t know, Carl is the cofounder of Migraine World Summit, and a world renowned migraine advocate and leader. So really delighted that you are joining us today for this discussion.
Carl Cincinnato 01:59
Thank you for having me.
Joe Coe 02:01
How are you feeling today?
Carl Cincinnato 02:03
Pretty good. I’m actually just recovering from COVID. I want to be really honest with this audience. My son came home from daycare last week. And now the whole house has been living with that. But it’s just another chapter in my health story. And I’ve tackled worse before. So we’re gonna get through this together too.
Joe Coe 02:21
Have you dealt with any of the headache related COVID symptoms.
Carl Cincinnato 02:26
It’s funny, actually, you mentioned that. I did have a tension headache from the virus. And actually just yesterday, I realized that, I didn’t realize it at the time, but actually did have a migraine. And it’s probably the first migraine I’d had in quite a while in a couple of months, actually. I’m in a position where today my migraine condition is so much more under control than it’s ever been in the past. And so I’ve been really lucky in that respect. And there’s been some intentional action taken towards managing it that way. But I’ve been really fortunate as well, there’s no doubt. But yesterday I noticed that, yeah, I had sort of sensitivity to light, pain behind my eyes, and just sort of the aggravating factors that don’t irritate me when I have a tension headache, were playing a role. And so it was kind of cueing me that actually this is a migraine, but it was a lot more mild. And it wasn’t nearly as severe as it has been in the past. So it was kind of a good news story in that sense that it was a migraine, but it was very manageable and relatively mild.
Joe Coe 03:21
So interesting, because when I got my booster shot, one of the things that you’re hearing a lot from folks is headache and migraine after vaccination, and I did the booster shot, not the two original doses. I did get a headache and I took an over the counter medication, my headache went away. And I was like, this normally doesn’t happen. This is different I kind of like this. Is this how the world is when they get quote unquote, regular headaches. It was really interesting that that over the counter medication worked really well which hasn’t been my historic experience.
Carl Cincinnato 04:01
Yeah, as the same for me like I kind of see them as lollies now I used to throw them down so frequently when I was younger, that I’ve never sort of used them anymore. But yeah, maybe there’s something there maybe taking a bit of time away from them. And particularly if it’s only a tension headache. I say only a tension headache. They can still be disruptive. But yeah, it’s nice to be able to feel relatively normal and respond like other people do.
Joe Coe 04:22
Definitely. So I want to learn a little bit more about what makes Carl tick, and how you got involved in this crazy migraine advocacy and education world. So can you tell me a little bit about your migraine story?
Carl Cincinnato 04:38
Yeah, be happy to. Migraine for me didn’t really become a problem until I was actually underway in my career. So I landed a job, a graduate position, at Unilever, which is kind of like the European Procter and Gamble. It’s a big I call it FMCG company, Fortune 500. And I was playing sport at a work event, would you believe, and it was touch football it wasn’t tackle. But I went to score and had to dive to try and make it without being tagged and landed on my shoulder and damaged some nerves in my shoulder that kind of linked up to my neck. It was painful at the time, I thought I’d broken my collarbone or something. But I recovered from the actual acute injury. But within 18 months after that injury, I found myself getting frequent debilitating migraine attacks. Now, up until that point, I’d maybe had one migraine a year, if that. It was something that I kind of swept under the carpet just like everyone else that we know, has migraines that respond to two Tylenol, or very rarely get them and don’t even worry about it. That was me right up until sort of my early 20s. And then all of a sudden, I was getting these attacks that were occurring at the worst possible time, I would have a meeting and the nerves for the big meeting would trigger an attack. I remember colleagues were saying to me, “Carl we’ve just finished, we’re going to go get some lunch, you want to come.” And I was like, “I’ve just got something to finish just quickly, I just need two minutes.” And the sort of stress of that thinking, “Okay, let me just wrap this up,” was enough to trigger a migraine, and then I couldn’t go to that lunch and it ruined the day. And I had to kind of make excuses. And so I experienced the full gamut of emotions and isolation and pain and depression that you get from chronic pain that’s out of control. And the fear and shame of having something that was so invisible, and no one really sort of saw or understood. It was awful. It was the most miserable experience of my life up until that point and ever since. Having gone through that I was sort of stuck in that place for a while. At that point, like I went and saw a doctor, of course, as you do. Doctor didn’t help. So I went to see a specialist, saw a neurologist, and I thought we’re sort of making some progress. And so we did that for a while. And that sort of ticked along. Long story short, fast forward seven years and I was still getting chronic migraines. I had spent thousands of dollars each year speaking to the so called specialists, the best people that I could find and that I could throw money at. I went and saw four different types of optometrists, including a behavioral optometrist, an Irlen Syndrome specialist. I got tinted lenses and glasses and all sorts of tests done, I started Ayurveda practitioner that look at your eyes and your tongue. And I did the whole gamut just like everyone else. We all try everything you can think of. And we’re still getting nowhere. I would get these periods, I sort of called them like a honeymoon response, where you’re so hopeful that it works, that it actually does for a period of time. But then you kind of run out of hope-ium. And all of a sudden you go back to your baseline of regular attacks.
Joe Coe 07:53
Wow, I can’t help but think about the term hope-ium. What provides hope, who takes away our hope, and how do we fight back against migraine? Carl, in such powerful way, describes how many of us feel, and I hope that you find ways to bottle up your own version of hope-ium, as he called it, or find a way to take the baseball bat and hit back.
Carl Cincinnato 08:15
Over time, it’s kind of like a form of torture, where you’re attacked on every front. You’ve got the physical element of migraine where it’s a brutally painful attack, crippling pain, used to vomit from the pain itself. Nausea and vomiting is super common in migraine. And so physically, it’s awful. It’s really painful, it’s disruptive. But then the other more insidious attack is the psychological element of it, which I think doesn’t get spoken about as much. And that’s the constant knife edge that you walk on as someone with chronic migraine, where something as harmless as a change in weather could trigger an attack. And that’s just an awful way to live. It creates a perpetual cycle of anxiety and stress and attacks, that then feeds on itself. So that it gets just worse and worse. It creates like a downward spiral. It was the most difficult thing in the world for me to crawl out of. And I’m so fortunate today that I have but I know that in doing so, I left behind a lot of people who are still trapped in that dark room. And I got support from places where you wouldn’t traditionally have thought. It wasn’t from the doctor. It was from other people that had migraine. And so when I did crawl out, I felt this overwhelming sense of gratitude. And since then, I’ve wanted to sort of pay forward some of the support that I received to other people, not only because I felt like I owed them, but also to help people in the future that suffer from migraine, that they didn’t have to go through the same thing that I went through or that others are still struggling with and also to support the next generation. We know migraine has a genetic component. I’ve got a son now. I hope to have another child in the future and I want my children to have a better future if they’re going to have migraine as well. So that’s kind of my story. It’s kind of what’s led me to do what I do today. I wear a couple of different hats, but I’m all consumed by helping people with migraine.
Joe Coe 10:13
And you’re very effective at doing that, Carl. Do you bottle up hope-ium? And where’s your supply from now?
Carl Cincinnato 10:22
Yeah, I mean, it’s funny. When I was in chronic pain, and was experiencing high levels of anxiety. And because I had a chronic health issue that was out of control, I was depressed. I think that’s a really healthy and normal reaction to a bad situation. And like most people under torture, it’s usually only a matter of time before you crack. And I’ve likened migraine to getting hit with a baseball bat in a pitch black room where your attacker has night vision goggles, can see exactly where you are, and can whack you at regular intervals. And you just never know when it’s coming. First time you get hit, you fall to the ground, you crawl back up, you sort of put on a brave face. The second time you get hit, you might feel a little bit dizzy, you may vomit from the pain, but you get hit time and time again over weeks and months and years. And you just end up in a corner rocking back and forth, you are a mess. And I think that that’s normal. And when I spoke to Professor Dawn Buse, who’s a specialist psychologist that focuses on migraine, she told me that one of the most liberating things that I’d ever heard, and she said, “That that’s normal. Carl. Like, you’re going through a really difficult time with chronic pain, you’re allowed to feel that. You shouldn’t be ashamed of feeling that.” That was a really important message for me to hear at that time. And that’s why I’m sort of sharing it now. Because I think that it’s normal to feel depressed when you have pretty awful situation. And you shouldn’t let that feeling make you feel worse, to come back and answer your question about hope-ium. Hope-ium is really important. It was something that I sort of held on to and I think it’s really dangerous if you lose hope. And I would always try to maintain that the glass is half full. I can’t say honestly that I always felt that way during the most difficult times. But that’s where having people around you. And having a support network. And being able to reach out when you really need it is so important.
Joe Coe 12:18
The visual of being beat up with a baseball bat is sticking with me. Have you ever taken the bat and beat migraine back?
Carl Cincinnato 12:28
It’s funny, it’s like I never consider myself like a migraine warrior, to be honest. I’ve never sort of thought about it in the way of me sort of attacking back. But I think that that can be helpful for some people, if that motivates them. But for me, it’s about trying to find the healthiest version of myself and working towards that. Whilst knowing at the same time that no one’s perfect. When I was a chronic migraine, I was really, really strict with everything. And I needed to be to kind of crawl out and I was doing all the things that I needed to do, both from a medication and lifestyle and supplements and trigger management perspective that I could, as well as tracking. Did all of it for three months, I was super, super strict, and people did understand. Since I’ve gotten better, I’ve learned to find a bit more balance. And I think that’s the right thing for me to do where I’m at now, because I’m sort of low episodic. This isn’t necessarily something I would encourage people to do who are chronic, but now like, you know, if I want to I can drink alcohol, I can have some rubbish food and stay up late and that’s okay. I can’t do everything all at once. Like I can’t have a terrible food, have a deadline. a 6am start the next morning, and then go out drinking all night like that would trigger a migraine. I’m not superhuman, but I kind of know what my limits are. And so I can be quite dynamic in how I choose to let my hair down on certain occasions like a wedding or a birthday, for example. But by and large like you know Monday to Friday, I try to maintain a pretty healthy lifestyle and exercise and do the things that you’ll hear the experts on the Migraine World Summit tell us but we should be doing. I try and walk the talk to the extent that I can.
Joe Coe 14:02
About how old were you when you first started getting chronic migraine?
Carl Cincinnato 14:06
I was in my early 20s. But my first migraine attack was before I was 10. I remember getting stomach pain when I was in grade one and I had no idea what it was. And it was only later when I learned about pediatric migraine and how it can sort of manifest as stomach pain and cyclical vomiting syndrome did I realized it was most likely migraine.
Joe Coe 14:29
Did you find that as your symptoms intensified in your 20s that it impacted your social and romantic life?
Carl Cincinnato 14:38
100%. Yeah, it just pulls you away from everyone. It kind of creates this massive barrier between you and the rest of the world. I had seven years of chronic migraine. The turning point for me was when I worked at Johnson and Johnson. I had a holiday with my partner at the time and we went to a destination in the northeast coast of Australia, to the Gold Coast. And I had a migraine attack every single day of this holiday that was for her birthday. Ruined the holiday. I came back from that trip and I resigned from Johnson and Johnson. I left the biggest healthcare company in the world, to ironically take care of my health. To this day, unless they’re listening, they don’t know that that was the reason why I left. I was still at that really bad place, still ashamed. It was still out of control. And I don’t know why I left. And I started documenting my experience. I started writing a blog because I thought, once taught, twice learnt, and I could apply my learnings in the topics that I was interested in, and I felt like I needed to learn more about and that helped me heal. That was part of my recovery. And that’s when things started getting better.
Joe Coe 15:47
Can you tell me a little bit about the work that you do now through Migraine World Summit? What’s the objectives? How are you helping people?
Carl Cincinnato 15:55
Yeah, so the Migraine World Summit, the goal is to reduce the global burden of migraine, it’s a pretty lofty goal. But basically, we just want to help others. And we know that information is power. There’s actually been research to suggest that even if you just tell people more about migraine, they can do better in terms of managing their condition, in terms of managing the anxiety of an attack. If you know what’s going on, if you’ve got a broad idea about what’s happening, then it just makes it like okay, this is the aura phase, this is normal, it will pass and then I’ve got the migraine attack. And you know, I should time my treatments appropriately. And I should take my treatment before I get into the full swing so that it’s more effective. And if I have gastroparesis, I should take something to address that and avoid oral medications. We know that if people have a good foundational knowledge for migraine, that it can really make a difference and, and potentially turn the tide. So that’s where the Migraine World Summmit comes in. We have each year 32 experts that feature at the event. And we cover a range of different topics that have been voted on by our community. And so it’s really just an opportunity for people to watch and attend for free. And hopefully find out, it just needs to be one thing, just one sort of idea, or one sort of lightbulb moment that can unlock something for you, that can help you turn the corner.
Joe Coe 17:17
How many years has it been around?
Carl Cincinnato 17:21
This is our seventh year. We started in 2016. And it’s grown into the largest event for migraine headache patients in the world since then.
Joe Coe 17:29
Amazing. And in those seven years, what has been the most interesting thing you’ve learned?
Carl Cincinnato 17:35
One of the things that sort of sticks with me the most was that comment from Dawn Buse, the professor and psychiatrist, about it being okay to be depressed. And when you have chronic pain, being depressed is a normal reaction. And I think that’s a personal one for me, because it was just something that I really needed to hear at that time when it wasn’t going easy for me. And I think that that’s probably the case for a lot of others who watch it. There’s probably something different for a lot of different people. But I think the nice thing is that we do cover a range of different topics and we have new topics each year. But we also have recurring topics and experts talking about things like chronic migraine. Like, chronic migraine we’ll cover every year because it’s good to hear a couple of different perspectives from some experts on how they approach it and what they do and what they look for and what chronic migraine can look like and what other things like chronic migraine that actually chronic migraine like there’s a host of conditions that present this chronic migraine but they’re not. And you might have the wrong diagnosis, for example.
Joe Coe 18:31
Is there anything that I didn’t ask you that you would like me to?
Carl Cincinnato 18:34
We haven’t really spoken about the stigma of migraine. But that’s, I think, a large part of why I kept it hidden in Johnson and Johnson because I was so vulnerable and ashamed. And I think that that’s part of our challenge. I heard a wonderful story about someone who is part of the Migraine World Summit team who took the opposite approach. And she told her employer about migraine. And her supervisor didn’t know much about it. And they reacted really well. She sort of spoke about what it felt like, what happens during an attack, and after that conversation, they made these accommodations for her. They were far more understanding when she got hit with an attack. And it just made everything like just easier. She didn’t have to hide it, she didn’t to fake. All of that takes energy. Paula Dumas, the cohost with me on the Migraine World Summit, said that lies make you sick. And I don’t think hiding migraine’s a lie. But it does take an extra energy to do. And when you’ve got a limited number of spoons, it’s nice to be able to have one that you don’t need to use it all day, every day at work. And so I think that for change to happen with stigma and with migraine, for migraine to get a proportionate amount of funding that it deserves. And right now it’s not even 10% of where it should be. For those things to happen, we all need to talk about it. And I don’t think it’s fair to ask someone who’s in a very vulnerable position that maybe has a hostile supervisor to start coming out, I think that’d be the worst thing is if you brought this up at work, and it didn’t go down well, or if you lost your job, which is not legal, by the way,
Joe Coe 20:10
Getting fired wouldn’t help with your migraine attacks.
Carl Cincinnato 20:13
No, it wouldn’t. And it’s illegal to do that. But there are people like that. And we’ve all worked for good bosses and bad bosses. And we know how it works with bad bosses. So I would say exercise judgment, but we need people to come out and talk about it. We shouldn’t hide it from family and friends, we should be prepared for the snarky comments about isn’t it just a bad headache, and come back with a correction. We need at least a vocal majority of people doing that. I don’t think until we do that will things really, really change. There’s so much great work happening with Headache on the Hill and advocacy and policy happening at the federal level. There’s things happening at state level as well that I know the Global Healthy Living Foundation have done and training advocates, which is brilliant. But we need more, we need people to sort of talk about it. And we need the stigma surrounding migraine to be dismantled. It’s not something that a quick awareness campaign and an ad or having a celebrity will dismantle. It’s talking to your peers about it, sharing the facts about it, and sharing your story about it. So I think if there’s one message that I’d like to leave people with that are listening to this, it’s to maybe have a chat to someone about it. You might be surprised, because you might hear that, “Oh, I get I get migraines too.” Well, I have migraine as well. And it may just improve your quality of life by not having to kind of hide that thing about you. You may find another opportunity, it may open a door, it may open you to something that helps you turn the corner. So I think that for change to happen, we need to kind of be part of it.
Joe Coe 21:43
So true. 100% agree. It’s one of the reasons why we started Talking Head Pain. I and my organization didn’t feel like certain voices are being heard, that I didn’t see LGBTQ people, I didn’t see a lot of men, we didn’t see BIPOC folks, we didn’t see working class people, people that don’t have a formal education that can’t access some of this like very technical information. So we really are in agreement with that perspective, that we all have to do what we can where we can.
Carl Cincinnato 22:16
Yeah.
Joe Coe 22:17
And also know that it’s not always our responsibility, someone else can do it. It’s not always, you know, our job as people living with the disease to be the advocates, we have to find allies. It’s great when we have an employer that, like the Global Healthy Living Foundation, that would let me go take naps in the middle of the day when I needed to do that, because they knew that that would ultimately make me more productive and happy and healthier, which is a radical, but shouldn’t be a concept in our society. So really, really agree with your perspective. Thank you so much for taking the time to share it. I think that the way you share your story is so powerful and unique and something that I hope fills up people’s hope-ium and that people feel better after listening to this.
Carl Cincinnato 23:07
It’s been an absolute pleasure, Joe, thank you so much for having me.
Joe Coe 23:12
Thank you for taking the time to listen to Talking Head Pain, a podcast that confronts head pain head on. If you enjoyed this episode, please give us a rating, write a review, and share it with someone who needs to hear it. I’m Joe Coe and I’ll see you next time.
Narrator 23:31
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Although it’s been framed as a “middle-aged white woman’s disease,” migraine doesn’t discriminate; it affects one in seven people across all genders and race. But the right diagnosis is often more difficult to find for people in marginalized communities.
In the second of a two-part episode, Sarah Shaw and her doctor Courtney White, MD, discuss the need to educate the medical profession, especially in Black, Brown, and low-income communities, on the many symptoms of migraine so they can better serve patients in the BIPOC and LGBTQA+ communities.
EXTRA- Part 2: TikTok Migraine Doc
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Dr. Courtney White 00:09
The biggest thing I’ve learned from patients is the medical system is not fair for anybody, but especially for low income people, for people who may not be in the medical field themselves.
Joe Coe 00:24
Hi, I’m Joe Coe, host of Talking Head Pain, a podcast that confronts head pain head on. In the last episode, you heard from my colleague Sarah and her amazing neurologist, Dr. Courtney White about the real life implications of living with migraine as a marginalized person. Let’s pick up this conversation where Sarah talks about how she first learned she had migraine, and how Dr. White is pushing the medical profession to better serve migraine patients.
Sarah Shaw 00:52
I found out that I was having a migraine attack from my pharmacist, which is amazing, I’m glad that she was able to tell me. People from Black and Brown communities, sometimes they are not able to get to see a specialist. And sometimes their only interaction is maybe they go to the primary care doctor one time a year. And for the primary care doctor to be like, I see that your symptoms you’re talking about that, sounds like it’s not just a normal headache, it sounds like that’s migraine. That would be amazing if we can get more education, and more resources in front of primary care physicians, OBGYNs, pharmacists, that the communities that we both belong to most likely frequent the most. I’m all for, like you said, a headache specialist, but sometimes transportation issues, other things like that are barriers to care. So I absolutely agree with you on that.
Dr. Courtney White 01:41
Yeah, there’s only about 700 headache specialists in the country. So getting to a headache specialist is definitely not easy. I know my particular institution, we have a bunch of different projects going. But one of them is educating emergency physicians, especially Black and Brown communities, that’s where they go when they have migraine attacks. But ER is the worst place to go when you have a migraine attack. There’s bright lights, it’s loud, there’s a lot going on and it’s not the ER doctors job to be able to diagnose you from that one attack, their goal is to treat you, make sure you’re safe, and then send you home. But we want to be able to say hey, if someone has come in their symptom seems typical of migraine, they respond to migraine treatment that’s done in the ER, here’s just a little information so you can bring it back to your primary doctor, you can bring it back to your OBGYN and just like bring it up so that maybe this can be discussed a little bit more. So that’s one project we have. We’re also trying to work with other primary care physicians GYNs and family medicine in the Greater Philadelphia area to create a network so that the doctor can talk with a headache specialist just to get some advice, and then be able to care for the patient themselves. Because again, there’s a lot more family medicine practitioners, primary care practitioners than there are headache specialists. So it allows them to be able to care for patients with this while also having access to the experts in that particular field. The third thing our institution is doing is we’ve actually created a year long course, that advanced practice practitioners, such as nurse practitioners and physician assistants, as well as physicians in other fields who don’t have a, did a year fellowship in headache medicine, can do this online certificate course so that they can now practice evidence based headache medicine in their own communities. So my institution in general is trying to take care of this issue of lack of providers having the knowledge and being able to teach them so that it’s a little bit easier to access.
Sarah Shaw 03:35
Those are all great resources and great information that that you just share with us, especially the part about Tik Tok. As I was thinking, like I remember when I first started off on my migraine journey, as weird as it was Reddit was the place where I got all of my migraine information from and now, obviously, I’m connected with GHLF and my doctor, but that’s where I first started out. So it makes sense that especially for the younger generations, they’re on social media, they’re looking for resources. So why not put the best of both worlds. I often call you the Doc that Toks, on there because if I’m thinking about it, too, that’s where people that may not have access to doctors, they may be getting their information from there first, obviously, we want them to go to the doctor, we want them to ask the questions, but you’re just a great resource out there to help, to break through the fog and at least have them start somewhere so that then when they get ready to go to their primary care physician and or they are going to see a specialist that those educational resources are out there. And I wish I had that when I had first started off on my journey six years ago. And speaking of what I’ve learned, what has been one of the most important things that you have learned from your patients.
Dr. Courtney White 04:45
So the next thing I was going to talk about, you know, social media has helped me as a provider to really hear the experiences of people with chronic illnesses and just hearing the stories that people talk about their experiences with other providers. It’s changed how I have interacted with patients. I think, not that I didn’t already have empathy, but I really have a better understanding, hearing the stories from other patients. I remember one particular patient, she had connective tissue disorder, she it was, you know, related to her migraine. You know, I said with her, I was like, oh, yeah, we’ll do this map. But I know but you know, because your connective tissue disorder, we’re not going to do that she was like, most people don’t even know about this disorder. I’m thinking, like, I follow at least four or five people on Twitter who talk about this. You know, and their experiences and why these treatments are typically, you know, obviously, everyone’s an individual, but it kind of makes me more aware. And I think the biggest thing I’ve learned from patients is, the medical system is not fair for anybody, but especially for low income people, for people who may not be in the medical field themselves. Even being in the medical field yourself can sometimes be a challenge, and being able to find those cracks in the system and try to figure out ways around them. I don’t think I as an individual could change the whole healthcare system. But for an individual patient, what can I do to make their experience better, because I too, have had experiences, poor experiences with providers. And sometimes it’s not until I disclose that I’m a physician that I sometimes get appropriate care. And it really shouldn’t be that way.
Sarah Shaw 06:13
I absolutely agree. It’s like that whole thing of me showing up to the doctor’s office with sweat pants on and getting kind of like dirty looks and rushed out. And it shouldn’t matter what kind of job you have, if you are on disability, where you come from, everyone deserves access to care. Speaking of the relationship that you have with your doctors, and the relationship I have with you, what does a good provider patient relationship look like?
Dr. Courtney White 06:37
I think it’s a partnership, more than one person telling the other person what to do. And that goes both ways. So a doctor should never tell the patient, like you’re doing this because I said so because I’m the doctor. The doctor should explain this is what I’m recommending, because of XYZ. At the same time, a patient that you know is going to get the most out of it is, one, being able to speak their concerns or if they’re not able to do something, or if they didn’t respond to something because we’re not going to know if you didn’t take a medication because you couldn’t afford it or something like that. Now it is on the part of the clinician, of the provider to be able to create an atmosphere, that a patient will be comfortable bringing up those concerns, but it is on the patient to take those recommendations, give them a try. If it doesn’t work, kind of report back why it didn’t work, things like that is a partnership where both parties are able to talk freely and clearly as two humans, and not have that hierarchy, but also have that mutual respect for each other.
Sarah Shaw 07:35
I absolutely agree with having this partnership. And before, pre-Dr. White, I didn’t feel like I could have those conversations about quote, unquote failing a medication either, like I felt ashamed, like it was something that I did wrong, that you know, was my body not reacting and so I often would not say anything to my previous doctors, because I felt like it was my fault that I would get shamed. And it’s so important, like you said, to create that safe space, to let the patient know that it’s not their fault, if something isn’t working.
Dr. Courtney White 08:10
And I will definitely say it’s not that you failed the medication, the medication failed you. Again, it is on more the part of the provider to create that space. I think another thing that is super helpful for the relationship is understanding that a lot of things are out of both the patient and the doctors hands with the healthcare system with the way insurance authorizations are so the open communication should go both ways. You know, a patient should feel comfortable being able to say, Hey, I stopped this medication because I didn’t like how it made me feel. And the physician should also say this is what I want to do. But I may not be able to because of XYZ reasons. Or this is going to take a while to get you approved for this, I have to do this extra work. Please understand that it’s not going to happen overnight, it might take a couple of weeks, it’s the system. Open communication is going to be the key to any beneficial patient doctor relationship.
Sarah Shaw 09:05
Yes, transparency is so key. And just, I’m someone who just likes to know like ahead of time, and even if it’s not ahead of time just letting me know about what’s going on. And that’s something that I know that, like has happened between the both of us. Whenever I started a medication, or if our nemesis insurance gets involved, which it has so many times like, got to do a prior authorization. That’s something that a lot of people may think is mundane, but it’s so helpful for me to know on the side that it’s not something that I’m doing wrong or there’s an evil being at play that is preventing it from moving along. So I do, and patients, appreciate that communication and transparency. And I want to know why a podcast like Talking Head Pain is important specifically for people that are part of the Black community, part of the Queer community. Why it’s so important to talk about migraine within those intersections.
Dr. Courtney White 10:01
Any kind of way of getting information out is super helpful. And people do a different ways. Some people go to Tik Tok, some people go to Twitter, some people listen to podcasts. So this is another medium in which we can educate. And we can advocate and to let people know that migraine is real. And also, this is a great opportunity to say that migraine does not discriminate, and that even though it’s been framed as a middle aged white woman’s disease, that’s not the only population. So it’s very important to talk about these disparities, because doctors get taught that not only is migraine one specific way, but only one specific type of person. And that is not true. There was a study that was done called the American Migraine Prevalence and Prevention Study, where they asked people about symptoms they had with their headache, and they kind of calculated whether they had the diagnosis for migraine based on the actual clinical diagnosis and the criteria for the diagnosis. Then, these folks were asked, has doctor ever told you had migraine? And what they found was there really was no difference in people who had the symptoms and probably had migraine. And in fact, it may have actually been a little bit higher in Black communities. However, being actually diagnosed, it was always middle aged white women or white women in their 20s and 30s. So I think it’s very important to really talk about the fact that people are not getting the diagnosis, because it’s not framed as such. There are a lot of groups, it’s been talked about from the physician level with the American Academy of Neurology, the American Headache Society, all the way to patient advocacy groups, where we’re talking about when we discuss migraine, when we show pictures in different media, who are we showing, and we want to make sure that people can see, oh, someone who looks like me can have this condition. And I think that will also empower communities as well. This disease affects men, women, non binary people, all races, there is no discrimination. This is a very, very common disease that affects one in seven people. And we need to talk about it more. And we need to really empower people to get the right diagnosis and treatment and advocate for themselves so that they can live their best life.
Sarah Shaw 12:07
I know that everyone listening could not agree more. And I’m glad that I finally figured out that migraine does not discriminate, because I’m going to tell you, I did not realize, you know, I was like, oh, this can’t be migraine because only white people get it. And that is not the case. So everything that you’re saying is so true. And I hope people out there listening, I hope that this does help them understand that, as Dr. White said, this is not your fault. This is not something that you did to yourself, and that it does not discriminate. So please make sure to follow what’s going on with your body and speak to a doctor. On that note, I just want to thank Dr. White for sitting down and having a tea hour with us. It was so great to chat and talk outside of the doctor’s office.
Dr. Courtney White 12:55
Thank you so much for having me. It was a real pleasure.
Joe Coe 12:57
And I just want to say that if people could see me nodding throughout the whole discussion, it was so powerful. And I know that you two, are people that I look up to as inspirations and real leaders in this really important discussion, particularly when we’re trying to reach people that are hard to reach. I think about my experience as a gay man. If I didn’t work in this field, I wouldn’t be on good treatments right now, I’d be on okay treatments with my primary care physician who’s a smart man, but not on great treatments, and there are great treatments out there. And there are great neurologists and there are great family practice doctors that with the right education, like you said Dr. White, can really impact our lives as migraine patients so I really appreciate the energy and the devotion that both you and Sarah share and really happy that you both were able to do this special episode of Talking Head Pain.
Dr. Courtney White 13:56
Well, thank you so much for having us, Joe. It’s, this is great. The work that you’re doing to spread the word and spread awareness is insurmountable.
Sarah Shaw 14:04
I just also want to say thank you to Joe for being a great teammate and helping, amplifying and passing the mic to the voices that really need to be heard.
Joe Coe 14:15
I am Joe Coe, host of Talking Head Pain and I will see you next time.
Narrator 14:21
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
As if migraine isn’t tough enough, imagine being a person in a marginalized community who must convince their doctor that their symptoms are real? Sarah Shaw went through six doctors before finding Courtney White, MD, who not only advocates for migraine patients but is one herself.
In the first of a two-part episode, Sarah and Dr. White discuss their migraine journeys, racial disparities in treatment, respect of the patient, and using social media to educate the BIPOC and LGBTQA+ communities.
“I am a neurologist and a headache specialist. I am also someone who does have migraine disease,” says Dr. White. “And I’ve gone through the experience of having difficulty finding a physician that would diagnose me and then treat me appropriately.”
EXTRA- Part 1: “Please Believe Me, I Have Migraine”
Narrator 00:00
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
Dr. Courtney White 00:09
I am a neurologist and a headache specialist. I am also someone who does have migraine disease. And I’ve gone through the experience of having difficulty finding a physician that would diagnose me and then treat me appropriately.
Joe Coe 00:23
Good day or good afternoon, depending on where you are listening from. I’m Joe Coe, host of Talking Head Pain. And I’m here with two very special people. You may have heard Sarah Shaw’s episode, Black, Queer and in Pain. We have with her today her neurologist, Dr. Courtney White, to really have a real discussion about that relationship, some of the challenges that Sarah has experienced and some of the insights that Dr. White has developed as she practices neurology. But you may also see Dr. White on Tik Tok and Twitter. So we’re really excited to have both of you here. And to have Sarah be the special host of this Talking Head Pain episode. So Sarah, I turn the mic to you.
Sarah Shaw 01:12
What an honor. Thank you, thank you, Joe and thank you Dr. White for joining me here today for my inaugural hosting episode. First thing Dr. White, what was your tea of choice today?
Dr. Courtney White 01:25
So I have a London Fog that I got from Starbucks before coming here. It’s Earl Grey tea with steamed milk and vanilla.
Sarah Shaw 01:33
Yum, I’m a huge also tea aficionado as well. My tea was a Earl Grey with a splash of cream today. It’s a, as we know, sometimes caffeine can trigger migraine, but I cannot go without my tea. So
Dr. Courtney White 01:49
I hear you. Yeah, without without at least one cup of tea, the day’s not happening.
Sarah Shaw 01:54
So, I just want to thank you for sitting down and talking with me about the intersections and a lot of just different things that, for both of us. Sitting in a room with you at my doctor’s appointments, for me, that has been one of the first times that I actually was in a room with a another Queer Black Neurologist. And that, for me was just mind blowing of just having like feeling seen, feeling heard, feeling safe. I just wanted to thank you for having that space and holding that space for me and other patients that are like me. I want to talk a little bit about the work that you do and what that means to you. Can you tell the listeners a little bit about who you are, what you do and how you’re helping Queer BICOC patients like me.
Dr. Courtney White 02:40
By training, I am a neurologist and a headache specialist. This means that I’m a physician who has undergone special training in management of neurological disorders, including, you know, migraine, other headache disorders, like cluster headache, trigeminal neuralgia. I also treat people with stroke, seizures, dementia, things like that. But I did an extra year of training specifically in headache medicine. Part of the reason was because I am also someone who does have migraine disease, and I’ve gone through the experience of having difficulty finding the diagnosis, finding a physician that would diagnose me, and then treat me appropriately. And I’ve had migraine disease for about eight years now. And actually, the first time I saw a headache specialist myself was a couple weeks ago. So part of what I want to do outside of seeing patients, a big part of my career is also in education and advocacy. And I think it’s important because you don’t get a lot of time in a doctor’s office with your provider just because of the constraints of the health care system. I want to be able to provide education to the community, and also empower them to be able to make decisions and advocate for themselves with their doctors so that they get the best treatment possible for them for their migraine and other headache disorders.
Sarah Shaw 03:57
That is so wild that you just now saw your first headache specialist just a few weeks ago. You technically were my first headache specialist. I did see one years ago but then I lost my insurance. And I just wanted to take a step back as the different barriers that we have as Black women trying to get our pain believed, trying to, for me, it took I think you’re my sixth doctor. You were the first one who spent more than 20 minutes in an office with me. And I just wanted to talk a little bit about why it’s so important to spend more than 15 minutes just checking off boxes, talking like in our appointment, we go through everything we talk about things that are changing in my life stressors, medications that have worked and why it’s so important to have those conversations and what are some ways that patients can empower themselves to talk with their doctors and feel safe, and how doctors can make those spaces safe.
Dr. Courtney White 04:54
Yeah, and that’s definitely a challenge because, one, the health care system definitely does limit a lot of physicians, particularly a primary care physician, some general neurologists. I work as a general neurologist now so I definitely see that to see as many patients as possible. One of the benefits of being a headache specialist and also had a headache specialist at an academic center is I don’t have those time constraints. So I really can spend that time. But that’s the other reason why I do a lot of online education and do things like the Tik Tok videos I do because not all providers have the luxury of being able to spend, you know a lot of time just teaching their patients about the disease. So this is sort of my way of making sure that other people can get that information, they may find, oh, this resonates with me, let me write that down and bring it up to my doctor. So even if I do have a limited time, I think as patients, we know our bodies best. And so learning about oh, for example, there is a condition called Migrainous Corpalgia, which people with migraine can get body pain as well. I posted a Tik Tok video about this and a lot of people said, wow, I’ve had these body pains I didn’t realize was related to migraine. And so it’s something they can bring to their own providers. And even if there is a limit to how much time can be spent, they now have a way to kind of direct those appointments so that they can get the most out of it.
Sarah Shaw 06:11
That is so important to us patients that we can, I know it’s something that I do all the time, I often will come into my appointments and say, Well, what about this, and I read about this, and do you think and I never feel shut down. Like you’re always trying to educate me. And we’re trying to educate each other about the things that will work and will not work for the patient. I’ve definitely been in situations before where I wasn’t treated with that respect, where I was shut down by doctors because they would look at me or or my partner, there’ll be that uncomfortability, unspoken. And what’s so important about having gender from care is so important, making sure that pronouns are on the forms. And that’s something that I have come across with your office. When I filled out my forms, I saw that and I knew that I would feel safe there. And I was wondering if you could speak a little bit about the importance of having pronouns and making sure that offices are safe for Queer patients like me, LGBTQA+ patients?
Dr. Courtney White 07:09
Yeah, I think one of the biggest things is respect for the patients, it should be standard. And I think more and more offices are starting to do that. But that definitely comes to education amongst those in the healthcare field. I’m actually doing a course even though I am Queer, and I’ve been involved a lot in the Queer community. And I also tried to advocate for disparities amongst the Queer community, I’m actually in a program to help further educate myself on the healthcare disparities within the Queer community. And some of the simplest things we can do to help solve those disparities is just the simple, respectful things by making, asking for pronouns being standard, and also changing things like the electronic medical record. For example, I had a patient who is a trans man, and it says male on his chart and his legal name, it doesn’t have his dead name. But it has a little, just to mention that he has a uterus. And that’s important to me as a medical provider, because that does affect which medications I can use and how I counsel. But it doesn’t change how I treat him. I think these are changes that can also help overall with the Queer community and being aware that just as important as someone’s name is, what they like to be called, what their age is, what their medical history is, for the most part, treatment is still the same, but there is still these small nuances that we need to be aware of, and we need to treat appropriately to help decrease those disparities.
Sarah Shaw 08:28
Absolutely. And I’m so glad to hear that your office and that you are doing the things to help bridge the gap and rebuild the bridge to help those disparities. Because something that I know personally, I would dread going to the doctor because with my partner, Tara, they would often give me looks or you know who’s this, is this your sister? And I’m like, Oh, my goodness.
Dr. Courtney White 08:51
Like, Oh, that one’s my favorite, is your sister. I’m like, No, that’s
Sarah Shaw 08:57
Having that level of respect and asking pronouns and asking what the patient is comforable with is so important. And that’s something that you have given me, every single appointment. I’ve only seen you actually I think it was our one year anniversary.
Dr. Courtney White 09:12
Yeah, it was because I was still in training when we first started working together.
Sarah Shaw 09:16
Yeah, so it’s actually I think it’s coming up either on our one year anniversary. But it’s made such a difference. I’m excited. Every single time I go, because I know I’m going to be respected. I know I’m going to be taken care of and I’ve never been called something that I was called in the past was that I was a problem patient because my case was so complicated, that my migraine attacks were not responding well to some of the older treatments that I was on. And I didn’t want to go back to see my neurologist. I didn’t want to do that. And you’ve never done that to me. You’re always like, well, let’s try this or let’s try this and that just has made such a difference in my hoping care and especially when I did my infusions that just turned a huge page of knowing that the patient is like the most important and that you were just willing to be like, let’s throw everything that we have at it. And even your colleague, Dr. Deploy was like, I remember I was so concerned about my migraine attack not breaking. And she was like, It’s okay, if that doesn’t work, we’ll try something else in our arsenal. And I think just letting patients know that there is something else to try or just giving them hope has made such a difference for somebody who for years was called a problem patient. I wasn’t taken seriously because I would show up in sweatpants, and a sweatshirt, it shouldn’t matter what you’re wearing, what your socioeconomic status is, what your race is. It should not matter. What matters is that you’re in pain, and you deserve to be treated equally, which I know that you can speak to
Dr. Courtney White 10:46
Unfortunate you’re not the only patient I’ve had who’ve said you know other doctors have dismissed me, called me a problem patient, called me too complicated. What I don’t like about it is it that it’s patient blaming. No patient caused their disease, and especially something that stigmatizes migraine. There’s nothing you’ve done that caused it. And I think that there is a culture in medicine coming from the physician standpoint, that we are expected to know everything, be perfect, be able to solve all problems. And when we cannot, there is this tendency to blame the patient for it. And I completely disagree with that belief. But I think that’s where that’s coming from. You know, I’ve definitely seen cases where I have admitted to patients, this is beyond my skill set, beyond my expertise. I’m still going to treat your symptoms, I believe your symptoms, even if I can’t give you the answers, I can’t give you a cure. Even if I’m not the expert in this, I’m going to ask others. And I think the newer generation of doctors, I think there are a lot of us who do have that same sort of idea, that mentality is that we’re doctors, but we’re also human. And it’s not the patient’s fault, if we can’t figure it out. It is our responsibility to get them to somebody who may be able to figure it out. and regardless of whether we could figure out the diagnosis, or the best treatment, even if we can’t get symptoms 100% gone, it is our duty to alleviate suffering as much as you can, whatever that treatment is. So I’m hopeful that the new generation of doctors, because we are more focused on showing our humanity with patients and also not being this kind of God complex, we’re going to solve and cure everybody, I think that’s gonna make a difference as well. Obviously, there’ll be bad apples here and there, that’s with any job. But what frustrates the most is how often I do hear your story of such such doctor dismissed me, thought I was too complicated, didn’t have anything. When was it really that the doctor themselves didn’t know what to do next? And then it became a patient blaming situation. So that was my soapbox.
Sarah Shaw 12:46
No, I appreciate your insight with that. And speaking of you know, doctors and patients in that relationship, what do you think the most pressing educational need is for the migraine community, both for providers and people who live with migraine disease?
Dr. Courtney White 13:02
For providers, there’s definitely a need for more training in medical school. In medical school training, out of the four years, there’s only four hours dedicated to migraine. And I understand that there are lots of other diseases, there’s lots of other conditions, and they all deserve respect. But a lot of our training in medical school is focused on these rare diseases that we’ll never actually see. Because those rare diseases help us figure out how the body works. But there’s such a focus on that as opposed to what we actually see as providers. So I think that there needs to be a change in medical education that is more focused on what people are actually going to see. So relative to other conditions, migraine is not taught enough. They’re also taught a very specific type of migraine where you have one sided head pain, nausea, sensitivity to light and sound. They don’t get taught that migraine can sometimes get both sides, sometimes the headache part can actually be very mild, and the Vertigo is more severe. So from the physician, and I think there definitely needs to be more on the medical education to help, especially people who are going to fields like neurology, primary care, family medicine, internal medicine, OBGYN, these are the people who are going to see people with migraine a lot. Even if you don’t go into being a headache specialist, I’m not saying I want to be headache specialist, as wonderful as it would be. To be able to do the basics before you refer to a headache specialist for someone who may have more intractable chronic migraine would actually be beneficial for a lot of patients. Now on the patient side, what things that can be done, is I’m actually one who’s for Google searching. That being said, you have to make sure it’s a reliable source. And that’s very difficult to discern. So we talked about earlier about you would come to me like Hey, I saw this device or I saw this study, what are your thoughts? I welcome that, I’ve had patients who come and they bring me these articles, and I can help them kind of interpret like, is this legitimate or is this just trying to sell something to you? Because I do have that training and be able to interpret the scientific studies, things like that. Every patient that I diagnosed with migraine now I actually give them a little bit of information. And I give them access to some of the patient advocacy groups. Groups such as Mask For Migraine, Chronic Migraine Awareness, the American Migraine Foundation, because those compile all of the latest information that is accurate evidence based and supported by headache providers. So I think those are places people can go to educate themselves. One of my biggest reasons for joining Tik Tok and starting to do videos on education was I had a patient who came to me and she said, I got all my information about migraine on Tik Tok. And when I saw some of the things that were being said, some of it was like, okay, it makes sense, some of these, it won’t hurt you to try it. But a lot of things were actually sham. And there are some people on Tik Tok who are really trying to sell products that they haven’t been shown in clinical trials to be actually beneficial. And really, while they don’t hurt, they’re gonna hurt your wallet, and you’re not going to get better. So I wanted to be able to present just the information that we have to have a more reliable source. Now I’m not the perfect source. You know, I am just a single person who has been a headache specialist for a year and a half now. However, I think it’s important for people to be able to look to reliable resources, whatever it may be, if it be a specific physician, or if it be a group, like an advocacy group. And then there’s also professional societies like the American Headache Society, the National Headache Foundation, that also provides a lot of good information. So things that we can do as patients to help with our own selfs, because we’re not going to get all this information in a 15 minute session with a doctor, is being able to find these resources. And I think as a advocate myself, one of my biggest things is education and providing the information providing those resources. The final thing I think, is really important that providers and also patients that we talk about our disease. I have had medical students where I’m educating them on migraine and then they would say, Oh, I think I might have migraine. And we go through the diagnostic criteria. And I’m like you probably do, you should see you know a doctor and try to get evaluated because you don’t have to suffer. There are treatments available. There’s so many treatments available. We don’t know what might be the perfect one for you. But that’s part of what I do as a headache providers figure out the right combination of treatments to improve your quality of life. So you don’t have to just deal with these bad headaches.
Joe Coe 17:20
This discussion was so rich and deep that we thought it would be helpful to divide it into two to give you enough time and space to consume the really important information that Dr. White and Sarah are presenting. Tune in to our next special episode of Talking Head Pain where Dr. White and Sarah confront of the emergency room head on. An area that is so important for migraine patients to understand how to navigate and in Dr. White’s case how she is educating her colleagues in ER and primary care medicine to better treat and advocate for migraine patients. I am Joe Coe, host of Talking Head Pain and I will see you next time.
Narrator 18:01
Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
In this EXTRA episode, host Joe Coe welcomes renowned migraine specialist, author and podcast host Dr. Lindsay Weitzel. Lindsay describes her worst migraine attack, strategies for coping with migraine attacks and minimizing their severity, and how living with migraine affects family dynamics.
“You find yourself saying, ‘oh my God, I’m going to die, I’m going to die.’ You need to turn that around because your thoughts are nerve signals just like your pain,” says Dr. Lindsay Weitzel.
EXTRA- Outfoxing Your Migraine
Narrator 00:00
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Lindsay Weitzel 00:00
You find yourself saying, “Oh my god, I’m gonna die. I’m gonna die.” You need to turn that around because your thoughts are nerve signals just like your pain.
Joe Coe 00:00
Welcome to Talking Head Pain, a podcast that confronts head pain head on. I’m Joe Coe, Director of Education and Digital Strategy for the Global Healthy Living Foundation. I’ve lived with migraines for 20 years so I understand how they can dramatically impact your life. Today I’m wondering if there’s a way that we can strategize and outfox a migraine. I’m speaking with a renowned migraine strategist, Dr. Lindsay Weitzel. Outside of helping others take on head pain professionally, she’s an author, host of the National Headache Foundation’s podcast Heads Up and just an overall fun and nice person. Hi, Lindsay, how are you?
Lindsay Weitzel 00:58
I am great.
Joe Coe 01:00
How long did it take for you to distinguish between what many would consider a headache and a migraine?
Lindsay Weitzel 01:07
I had chronic daily migraine from my earliest memory, which is around the age of four. And everyone told me this is the same as my father’s history. So to me, I just thought everyone was like this. And everyone told me I had sinus headaches, just like they told my father. So it wasn’t until I could read well, well enough to read a book written by the Mayo Clinic that happened to be in my family’s library. And I read the migraine section and I was thinking to myself, I must have been 10 or so, I was thinking to myself, gosh I feel like these headaches I get are actually migraine because I do all these things. I vomit like they talk about. I have all of these other symptoms. But it wasn’t until I was 17 that they actually diagnosed me with migraine because they came out with imitrex and someone gave me an imitrex injection and said “Oh, these are actually migraines that you have, essentially every day.”
Joe Coe 02:04
So for the first 17 years of her life, Lindsay was essentially in the dark about what was causing her daily chronic headaches and only discovered the real cause by accident when she picked up a book in her father’s library. I asked Lindsay to describe the type of symptoms she gets when a migraine attack hits.
Lindsay Weitzel 02:21
I get many, many different types. I used to experience everything from constant nausea and vomiting. I don’t vomit as much anymore. I do experience quite a bit of nausea, but I don’t vomit too often. I definitely experienced cognitive dysfunction when they come. I experienced dizziness. Mostly my worst symptom is pain. I have very severe pain. Because mine started when I was so young, and they were so constant I developed something called complex regional pain syndrome in the same pattern as my migraine. So it’s the right side of my head, face, neck and down my arm. So I also experienced like a raging burning fire pain down to my bone marrow along with a migraine and they sort of make each other worse.
Joe Coe 03:08
I want you to think about the worst migraine attack that you had, where you were, what you were feeling, what was going through your head, and just anything else that you think people need to know about your worst migraine attack ever.
Lindsay Weitzel 03:23
My worst one stands out very strongly in my mind. It was actually I had a migraine related seizure that stopped me from breathing and likely the only reason I’m even here today is at the time I happened to be married to an anesthesiologist who was able to induce me to breathe. And what was going through my head honestly was at first, not much because I was so used to really horrid migraines, but I had left work and I had gotten myself home and I was in bed and it just seemed like one of my worst migraines pain wise and I was having trouble even sitting up. I was just having trouble speaking. I couldn’t seem to speak correctly at all. And it was a right sided migraine, which about 98% of my migraines are. And then it very suddenly switched to a left sided migraine, which I don’t get very often and it was a severe left sided migraine which is unusual for me. And I started getting some auras that are were like Alice in Wonderland type auras where everything’s the wrong size. Like I felt like my hands were like Mickey Mouse hands giant hands, everything in the room looked wrong. And then all of a sudden, I couldn’t swallow. And then I knew I had to vomit, which was totally normal for me and I ran into the bathroom, but the reflex that allows you to vomit wasn’t working. So I couldn’t swallow my saliva and I was trying to vomit but the vomit wouldn’t come up. I tried to scream for help because I was afraid I was going to choke. And by the time my husband came in, I could see my legs kicking in the air back and forth because I had started seizing and I could see him trying to wrap my head and towels so that I didn’t hurt my head because I was convulsing so much. I couldn’t see him well, it was like I had stopped blinking. So my eyes went blurry. I could tell he thought I was dying, even though I could still see him. Eventually, I did quit breathing, and he was able to get me to breathe again. But those things are scary. I’ve never had that happen since and I hope I never do. It was such an extreme migraine, I would definitely know when it was coming. It was the strangest migraine I’ve ever had. So that one was definitely my worst one.
Joe Coe 05:35
Wow, that almost sounds like something out of a nightmare. But a lot of people with migraine have similar experiences, including my own brother, who also has epilepsy. The seizure that Lindsay described is very similar to a seizure that I witnessed him having. Fortunately, or unfortunately, he doesn’t remember much of it. But it was a horrifying thing to watch. And as I said to Lindsay, episodes, like hers, and my brothers are often misunderstood. If you have a seizure, people don’t necessarily know how traumatic that is, after what it does to you to wear you down. So these discussions are really important. And thank you for sharing in detail and graphic detail which people need to hear. They need to hear how serious migraine can be.
Lindsay Weitzel 06:20
And it’s not just that I do feel that people don’t fully understand that the longer you have it, and the longer your chronic, the more important it becomes to stop it because I do think it just gets worse and worse and worse. And some of these things that I talk about these extra symptoms, these things that happen are more likely to happen. And so I think it’s so important to stop it in its tracks.
Joe Coe 06:41
You talked about working with clients to help them better manage their migraine, can you explain a little bit of what you do with folks to help them?
Lindsay Weitzel 06:51
What I do is extremely variable, depending on the person, depending on where they are in their migraine journey. I work with people who live near me, but I’ll be honest, I mostly work with people who live across the country and I meet with them via Zoom. I find out where they are in their journey. And I do something that I call building a rock wall against migraine. If you imagine a rock wall, all the rocks are different sizes. So I say that half that rock wall is strategies that are lifestyle, half of it is medications, but the mortar of the wall that holds it all together is your mentality, or spirituality depending on how you want to look at it, and what kind of person you are. And so I talk about all those things in the rock wall and we work on a rock wall together. I mostly end up honing in on this mortar because I really believe that let’s say you find the best medication for your genetics and your migraine disorder. And a lot of times that medication works for a while. And then that rock sort of falls out of your wall and it stops working. And I really do believe that’s because we didn’t work on our mortar enough.
Joe Coe 08:00
I love that. And my father was a mason. So I know a little bit about mortar and caulking and all that stuff. Do you ever use some of those rocks to help people throw them at insurance companies?
Lindsay Weitzel 08:11
Yes!
Joe Coe 08:12
I need a bucket of rocks right now.
Lindsay Weitzel 08:14
That is one of the things we talk about. Unfortunately, it’s not as easy for me to help people with that if they don’t live here. Like if you’re local, I know all the coolest people to go straight to and be like, look, you talk to this person in billing or this person here and there and they’ve got it like this, they know what to do. If the person lives far away, I don’t always have that magical person in your area to help you. But when someone really knows your area, and the hospitals and clinics and stuff, there’s a lot of times a really magical person in your area that can help with that.
Joe Coe 08:48
Lindsay is a single parent and her migraine can often affect her interactions with her children. But she, as a strategist, has some useful tips for us to get through attacks when they occur.
Lindsay Weitzel 09:00
What I do as a parent, and I also have a seven year old son that was diagnosed with chronic migraine this year. He has not gotten what dramatically better. We’ve managed to bring it down to almost nothing very quickly. So I both am a parent of a very young child that had quite a lot of migraine for a while and then I myself obviously have migraine. I think the first thing to do when you are in the acute phase of a migraine is you need to find something distracting and empowering or if not empowering, if that’s not your thing, distracting and funny, something that’s going to keep you up and it’s going to use the part of your brain that either is going to fall down the rabbit hole of pain and misery and suffering. And instead you need to take your brain somewhere else so that you feel stronger after this migraine instead of weaker. So I do this with my kids and I do it with myself in front of my kids. So what we generally do if we’re all home, and I’m feeling terrible is my kids already know, to go pick a superhero movie that mom likes, and they turn it on and my daughter is old enough she generally makes popcorn and we all go and gather around this like empowering movie. We do the same thing with my son. If he’s not feeling well, he picks the movie, which is usually a superhero movie or maybe something that makes him laugh.
Joe Coe 10:19
And is that why you wrote the book Super Zoe the Migraine Hero?
Lindsay Weitzel 10:24
My daughter wasn’t even old enough to speak when I wrote that she was only two, maybe three. I didn’t have kids with migraine at the time or anything. I just remember feeling that kids that were like me when I was young, I needed something empowering to focus on so the book Super Zoe the Migraine Hero, it doesn’t educate much or anything. All it has in it is empowering images. I don’t want these kids feel like they have to read when they have a migraine. It just has empowering images for them to focus on. So they keep their mind in a strong place. There’s also coloring pages if there’s a particular image that they feel like it’s helping them. I can’t really fit those pages in the book. So they’re actually on my webpage and they can download it and they can color the pages. They’re free, so that they stay feeling strong and they’re a little bit distracted during a migraine and so definitely it was the whole superhero mentality. We’re stronger, not weaker because of migraine is the reason I made that book.
Joe Coe 11:21
So who were the go to superheroes in your house? Are you a Marvel, DC family? Like where does that break down?
Lindsay Weitzel 11:28
We’re definitely a Marvel Family. We love Iron Man. Right now my son’s really into Black Panther and my daughter’s into Black Widow and I love Iron Man. It sort of switches sometimes. But yeah, we definitely love Marvel here. Do you have a particular movie or distraction you go to when you’re not feeling well?
Joe Coe 11:53
I love Marvel and DC. I’m getting into Titans on HBO Max, which is a really interesting show. And I love Marvel I would say my go to for like just mindless distraction would either be Buffy the Vampire Slayer, the series from when I was in high school in middle school, and that’s I’m dating myself. It still holds up. Harry Potter, unfortunately, there’s some questionable politics with the She Who Shall Not Be Named. So I don’t celebrate that as much. But Harry Potter has done so much for so many people, right? So I go to Harry Potter, I try to listen to music that I find soothing. I could do like melodic death metal to Britney Spears. I have a very diverse range of music. And fortunately sounds don’t bother me when I have my, light does I can’t watch TV. So I don’t really watch TV during an attack. It’s more after when I’m resting. It really depends on my mood. And I think part of managing migraine is the pre post stuff that we have to deal with. So like, I might have to try to figure out how to amp myself up after I feel rundown for a couple of days. So music can sometimes help with that.
Lindsay Weitzel 13:11
I think that’s true. And I think it’s interesting. There’s certain migraines, not all of them do this to me but, there’s certain ones that will your mood, you’re like wow, why do I want to listen to that? It’s kind of weird. It will do things to your mood. So it is not that strange. I don’t think that there’s such a wide array of music that you’re attracted to, during and around the time of a migraine. I know a lot of people who can’t watch TV during a migraine, I have to, but my ears are more sensitive. The phonophobia is worse for me. So it’s harder for me to listen, I listen, I watch TV on low volume, but I know some people that will put their favorite movie on and just listen to it. They’ll like put a pillow over their face or something and they’ll just listen. So yeah, it just depends on which symptom is worse for you the photophobia or the phonophobia what you can do, but I always feel like you’ve got to find a way to get something positive into your system, whether it’s through your ears or your eyes.
Joe Coe 14:09
Lindsey is the host of a podcast called Heads Up, which is sponsored by the National Headache Foundation.
Lindsay Weitzel 14:16
Hello, everyone and welcome to Heads Up, the webcast and podcast of the National Headache Foundation. I’m Dr. Lindsay Weitzel, migraines-
Joe Coe 14:24
What is one of the most interesting things that you’ve learned while doing this?
Lindsay Weitzel 14:29
I’ve always been like reaching for the most difficult question that I know that people with migraine would love to have answered or the latest medication that I know they’re gonna want the details on that maybe they can’t find online. They’re gonna want the expert that actually worked on the clinical trial and do you know what one of our most popular episodes was? It was literally just supplements. Let’s just start with magnesium. Why is magnesium important to us if we are a person who experiences migraine, magnesium is important. There was Dr. Amelia Barrett, and she’s really into holistic treatments for migraine. And I pulled her on and she talked about magnesium, how long do you need to take it, it would be two and a few other supplements and gave the details on, you need to take it for at least this long before you would see an effect etc. and that one blew up. And I was like, you know, duh, that’s something that someone can just run to the store and do for themselves. It didn’t occur to me that some of the simplest things are what a lot of us really need and want to hear. Another really interesting one, just seeing the actual brain scans related to what meditation can do for someone with migraine and the neuroplasticity, the neuroplasticity ideas, the actual things that happen, the science behind how we can get better with meditation when we have migraine blew my mind a little bit.
Joe Coe 15:50
So you’re telling me I shouldn’t yell at my Apple Watch when it’s telling me to breathe? I’m like, why are you telling, don’t tell me to breathe.
Lindsay Weitzel 15:58
You can yell at it. But afterwards, sit down, meditate and breathe. Go ahead and yell, if that’s what you feel like you need to do. But afterwards, yeah, breathe and meditate.
Joe Coe 16:09
You talked about helping people create their mortar and their foundation. What’s a mortar tip that you would give to our audience?
Lindsay Weitzel 16:19
One of the most rudimentary mortar tips is that there’s three places to attack your pain, you attack it on the sensation level, then there is a thought level, what do you think about your pain? Do you literally think this pain is the worst thing on Earth? It’s going to kill you? It’s going to last forever? Someone who’s never had a migraine might laugh at that. But almost anyone who’s had a migraine, what’s one of the first things when it hits really bad that you find yourself saying, “Oh my god, I’m gonna die. I’m gonna die.” Most of us go through that phase. And then there’s the emotional level, how does it make you feel? Do you feel like a loser? Because you’re not at work? Do you feel like you’re going to fail? Do you feel like it’s unfair. So there’s all these things that happen on those three levels. So we all really do a good job of finding ways to attack this sensation with the various medications and strategies that we get from our doctors and online. But then stop when you notice what you’re thinking. Or you might even hear yourself say it out loud.
Joe Coe 17:22
I thought this was really interesting that Lindsay says our thoughts are like nerve signals, similar to our pain, and that your pain adapts to these thoughts. So if you’re telling yourself, this is the worst pain you’ve ever felt, those thoughts are more likely to stick around and multiply.
Lindsay Weitzel 17:38
So you need to turn that thought around, like it’s going to be okay. It’s going to go away, I’m going to be fine. I’m going to be stronger at the end of this. And you need to distract your brain with something empowering like what we talked about the music, the movie, whatever. And then the emotion. Are you stressed out? Do you have anxiety because you think your boss is ticked off at you? Do you feel ashamed, all of those things are going to bring you down again, these are nerve signals, they work in your brain, just the same way the pains working and they are going to make the pain worse, they’re going to make it more likely to stay or likely to come back worse, and you need to turn those emotions around. And it sounds so hard. But this is something you practice. Even the pediatric people that work with kids who have migraine will tell you that this is old school, don’t stick them in a dark room and just let them sit there with their negative thoughts. That’s about the worst thing you could do. Give them something in there that’s positive.
Joe Coe 18:32
I want to circle back to what you think single parents should know about parenting with migraine. What are some tips you would give them?
Lindsay Weitzel 18:41
One of the tips is, let them help you they want to help because they get so sad, especially if they’re young, when you know mom’s not feeling well. So find things they can do to help. Like I mentioned, my kids turn on the movie, they make popcorn, they love to get me a water bottle. Even if I don’t need the water. I’m like, “Oh my gosh, thank you.” They write me little notes. Another thing is I invite their friends over when I know a migraine is coming. And then I hide in the basement and let them play because then they’re distracted with something fun and they’re not as worried about me. So if they’re an age where they can play on their own and be distracted. I think that that is a great strategy.
Joe Coe 19:20
I have one last question. As a parent, how do you feel seeing your child live with migraine?
Lindsay Weitzel 19:28
It’s been hard just like you thought it would be but I do think that us mothers or fathers or parents that have been through it really bad like our whole lives and have figured out how to strategize and work with the medical community and have educated ourselves are pretty well equipped to help our children. Maybe more well equipped than some of us realize and I’m always just go at it the way you wouldn’t helping yourself. If you start early when they’re really young and it’s not like ingrained in their nervous system for 15 years before they get help.
Joe Coe 20:03
I totally agree that people that live with this disease and have children or family members that also have it can use their collective strength and wisdom that we have gained through our life experience loving to help. And I thought that that’s a really good use of that energy. Lindsay, this was an absolute delight, having you on Talking Head Pain, thank you so much for sharing your strength and your wisdom, your energy and compassion, and also your humor, it’s really important. And we forget that, that while we’re living with really difficult diseases, that we don’t have to feel bad for ourselves that we can advocate for ourselves, we can find the best treatments, we’re gonna feel crummy, but we really can find strength both within ourselves and with others. And thank you for being a source of strength in the migraine community.
Lindsay Weitzel 21:02
Thank you for having me. It’s an honor and it was so fun, and I love talking to you. It’s always so much fun chatting with you.
Joe Coe 21:11
I really appreciated that Lindsay shared practical tips for us while we are experiencing a migraine attack. I think that some of these tips were counterintuitive, but really helpful for those of us that are struggling in the moment with an attack. I’m sure as someone living with migraine you have your own tips to share. Send them to us at [email protected]org. Better yet, include a short video or audio clip, and who knows what you share may be included in our listener feedback portion of future episodes. Thank you so much for listening to Talking Head Pain, a podcast that confronts head pain head on. If you liked this episode, you can help us out by giving us a rating and writing a review on Apple Podcast or wherever you listen to a podcast. It’ll help more people like you find us and we know that you want people to get help. I’m Joe Coe, host of Talking Head Pain and I look forward to speaking to you next time.
Narrator 22:10
Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.
Dreama, a housekeeper, shares her experience of working with migraine as someone who is self-employed and often doing physical work.
S1:Ep7- "Clocked In" with Migraine
Dreama 00:00
I remember I was laying on the couch. And it was an all day thing and I couldn’t move my head without it being it feeling like I had been kicked in the head. That sound, noise was like, you know, the bells at Nortre Dame Cathedral. That’s how every noice sounded to me. It sounded like my head was up in a belfry. I finally looked at my son and told him take me to the hospital because it it lasted, I was probably 10 hours into it. So just completely obliterated not able to move. I think the pain got down to a four so I could function. But I think the only reason I didn’t consider that a 10 is because I hadn’t passed out. And I wished I would have.
Joe Coe 00:59
Ask a person living with migraine about where and when their first attack was, and I’m sure it’ll get equally powerful responses. Hi, I’m Joe Coe, host of Talking Head Pain, where we confront pain head on. In this episode, we’re exploring how migraine affects us financially, like compromising our working lives and livelihood.
Dreama 01:19
My name is Dreama, I am well still technically 50, and I clean houses for a living.
Joe Coe 01:26
Do you remember when you first started getting migraine? And how did it start for you?
Dreama 01:30
I remember being 17 years old, and I was at school. And my head was hurting so bad. I just gotten to the car and drove straight home, skipped the nurse’s office. And then from there on out, I probably got about one really massive headache per year. I didn’t get diagnosed till I was 25 though.
Joe Coe 01:56
Why did it take that long to get it diagnosed?
Dreama 01:59
Money or lack thereof. We didn’t have insurance at that point. And basically, my parents were pretty much you know, can’t afford it. So we can’t spend it sorry, deal with it. So and when I started winding up in the ER, for headaches, they decided they would treat the pain but really not the migraine until I got diagnosed. So I had to get diagnosed. And that didn’t happen until after I had baby number five.
Joe Coe 02:35
Wow, that’s a long time. Almost a decade and five children later is such a long time. But the issue of getting a late diagnosis isn’t just that Dreama lived with pain for so many years. I wondered what the long term effects are for having a delayed diagnosis. I had neurologist Dr. Peter McAllister shine a light on this.
Peter McAllister, M.D. 02:55
So like a number of medical conditions. The more migraines one has, the more one has migraine. So if you treat it early, and you decrease or eliminate this process called kindling. Kindling means if you have a migraine and another and another, there seem to be changes in the brain such that the brain gets better at giving you the next migraine and the next migraine. And pretty soon you become a well oiled migraine machine. So interrupting that process or preventing it from starting by early, aggressive, targeted and specific treatment seems to be not only good for the day in day out because your headaches are better, but it probably is good for a patient’s future as well.
Joe Coe 03:39
It’s important to not just get an early diagnosis to manage your migraine, but also to stop having such severe migraine attacks. For Dreama, managing migraine for decades and with five kids, it must have been an incredibly exhausting balancing act. And how is it with your kids? How did you explain migraine to them? And how did they react?
Dreama 04:01
When they were a lot younger it was very, very hard because when my migraines was putting me in bed, I’d have no choice but let their dad will watch after them. You know, and if they come in and they need something I’d have to send them to their dad. They’re just part of the reason I felt like such a terrible mother. Because you know, it’s like I can’t I can’t even think I can’t form a coherent thought or absorb what you’re telling me. So I would have no choice but to tell them and by the time all them were about 4, they knew don’t bug mom when she goes to her room close the door.
Joe Coe 04:39
You are not a terrible mother. I could tell that. I mean the way you talk about your children and I definitely feel the love there. Do any of your children have migraine?
Dreama 04:50
I’ve had two that have been diagnosed and two that we are 100% sure that they have migraine, but they have not been diagnosed. So, four of the five.
Joe Coe 05:05
Do you find that you’re able to relate to them now, the ones that are diagnosed and have migraine?
Dreama 05:11
Well, each one of our migraines are completely different. You know, my son, my middle son, his is more visual. Everything is just really visual with him and he gets really, really dizzy to the point where he cannot drive. He doesn’t so much get the pain, but you know, he gets the the visual. And that that’s hard. Um, my Naomi, her biggest problem is in the the nausea. You know, we put her on nausea pills now, and I don’t think they’re helping. We’ve tried the peppermint stuff. It hasn’t helped. So she bears like me pretty much just ride it out until it’s done. So and then my other two I honestly, I really don’t know. They told me one sided head pain. And that’s all I really know.
Joe Coe 06:12
How frequently do you get migraine now?
Dreama 06:15
Well, now I probably get about one a week. They’re level two and level three, I can still manage. So it’s maybe about once every two to three months and I get one that I have to call my client and say I can’t come. So because being on the road would be dangerous.
Joe Coe 06:34
So you talked about being a housekeeper and having migraine and how that impacts your livelihood and or your ability to do your work. When you’ve had to call out with your clients, do they understand or do tell them why?
Dreama 06:50
I have got the best clients on the planet. This little place I’m in right now. My client told me I could come over and spend a couple of days here and just get away from my family for vacation. So I’ve got the best clients on the planet. I love every one of my clients. They’re all so understanding. I’ve had a couple of them tell me, “Look, you’ve got to have a go home.” So yeah, I love my clients.
Joe Coe 07:18
Do you feel concerned about your future living with migraine, and like your work situation and?
Dreama 07:27
Not so much migraines as the rest of the aches and pains going in my body. So that’s, that’s more the concern for you know, cuz it’s a it’s an extremely physical job. And I’m not one to use a mop, I mop my floors by hands. So, you know, my body is suffering from, you know, the workload. So yes, I am absolutely concerned about know, what am I going to do when I can’t do this anymore? You know, I have no savings. I have no honey to take care of me. And I’m living with my kids and steal all their food.
Joe Coe 08:06
People might understand the pain that comes with migraine, but what about the financial impact? What about the life changing aspect of this disease? The financial losses people with migraine face, and the uncertainty migraine patients live with? This is another reason why we must get the right care. Where do you currently get treated for your migraine?
Dreama 08:27
I go to the downtown clinic which is for free people, I mean broke people.
Joe Coe 08:32
So you go to a clinic and how are they do they understand migraine?
Dreama 08:38
My original doctor actually suffered from migraines but I had to switch my clinic days when I went over there, so they had put me with a different doctor. So I just I don’t know how empathetic she is toward people with migraine.
Joe Coe 08:53
Do you think that people in general, who have less money get different type of treatment when it comes to diseases like migraine?
Dreama 09:01
I honestly do not know. I try and seek out the good in people. You know if if my doctors being somewhat rude if it’s not a pattern, they’re not going to blame it on her day. You know, she had a rough day and that means I have to be extra kind. You know, but in general. I don’t know my daughter got diagnosed and she has seen probably the most spectacular neurologist ever. He even knows about those white lesions on your brain from heavy migraines. So I’ve had moments of, okay, I’m going to just sit here and allow myself to feel miserable and mope and whine and cry about having migraines because I’ve had an 18 month stretch where I had a constant headache.
Joe Coe 09:52
18 months, what-
Dreama 09:54
Yeah, and then the doctor told me, “Migraines only last three days,” I said okay, how about you go tell every one of my friends who have had migraines for years.
Joe Coe 10:03
So you had a migraine for 18 months. And the doctor that you saw said, that’s not possible because migraines only last three days, how did that make you feel?
Dreama 10:12
Totally not believed. Like I was trying to blow up symptoms to get sympathy or meds, or whatever else he was thinking or I thought he was thinking, you know, because honestly, I don’t know what he was thinking. But you know, that’s how I felt.
Joe Coe 10:31
18 months is too long to be battling with something silently and then being knocked down when trying to get help and trying to get on the right medication. Dr. Peter McCollister weighs in on this.
Peter McAllister, M.D. 10:42
Unfortunately, we, that is the medical community, do not do a good enough job in putting people on preventive medications. There was a large study called the American Migraine Prevention and Prevalence Study, and they found that if you look at the criteria for who should be on a preventive, it’s about 40% of all migraine sufferers. And yet about 12% of people are actually on migraine prevention. There’s a couple of reasons for that. Certainly the doc, some of the doctors don’t know to do it. They’re much more comfortable with acute medications. Another big issue is that tolerability and perceived lack of efficacy. If you get put on a particular pill for your migraine prevention, and it caused terrible side effects, you just drop it. In fact, most of the older ones, patients don’t stay on for more than six to 12 months. So there’s a problem of actually getting on them. But when you get on them, people are lapsing because they’re either not working or they’re intolerable.
Joe Coe 11:44
It’s no secret that the healthcare system is broken. And not everyone gets the same care. Migraine is a life sucking disease. But are there any positives to living with it? Do you feel that having migraine has helped you be more empathetic and kind toward people?
Dreama 12:00
Yeah, definitely. Definitely. I try not to judge anybody because the thing is, is they can be a walking cripple like me. You know, you never know what somebody’s hiding underneath their skin. You just you don’t. So if somebody is walking with a limp and respect that, and you know, be kind. So I think it’s made me much more empathetic.
Joe Coe 12:26
And do you find that your physical church helps, the people in it having that community?
Dreama 12:33
I love my church family, they’re so sweet. They all love the Lord and it just comes through?
Joe Coe 12:38
Are they understanding and supportive? And how have they supported you during your life and with migraine?
Dreama 12:46
They’ve always given me an ear. You know, I think sometimes that’s the best thing that people in any situation needs. Sometimes it’s just someone to talk to. We don’t necessarily needed advice, we just need to talk and get it out. And there are very, very few people that I open everything up to, you know, I don’t tell everybody about my pain levels. I don’t tell everybody about all the stresses in my life. You know, but there are a few people by opened up to him, my brothers and sisters in the Lord are those.
Joe Coe 13:19
What would you want others who are in similar situations as you to know about migraine?
Dreama 13:26
For people who do not get migraines, please stop throwing every so called remedy up in front of my face. It doesn’t help. In fact, sometimes it makes it worse. For those who do get migraines, please as soon as you start feeling any migraine type symptoms, go get diagnosed because then you’re going to get the best treatment. If you’re not diagnosed, you’re going to get ignored and though of treated as a drug seeker. Because you know migraine is the ultimate I can’t see your pain. So let’s use this as a reason to go get drugs. Oh, and keep a diary of your migraines. And if you can figure out your triggers do because that’s awesome.
Joe Coe 14:16
Dreama’s story reminds us that we all have a great amount of strength and courage. We need to use this strength to help ourselves and others. I hope you are inspired by Dreama’s story too. If you need help with understanding migraine, we created free audio guides to help you step by step through your migraine journey. You can find them at talkingheadpain.org
Sean, a retired member of the Canadian Air Force, recalls how he dealt with migraine while serving in the military and now how he helps other men get support.
*Content warning, this episode contains sensitive content around suicide.
S1:Ep6 - Confronting Migraine Stereotypes
Joe Coe 00:00
Content warning. This episode contains content around suicide.
Sean McEvoy 00:05
So my worst migraine attack was just a few years ago. It was just after I started getting chronic migraines. It it came on, I woke up with with a really bad headache in the back of my neck coming up the base of my skull. I always explain it to people that imagine someone taking an icepick and just putting it against your temple and just hammering it into your head that that’s the only way I could describe it. the extremity of that one lasted about eight, nine hours and then it started to calm down but the actual migraine itself was about a three day migraine which is worst I’ve ever had. It’s so intense, so pinpoint. That’s the throbbing you can you can feel and hear your heartbeat that time I probably would have if I had had a gun in my house, I probably would have used it. The pain was so excruciating and so bad. And you know, I can say that’s probably one of the only times that that I’ve ever had a feeling like that, that that I would you know I would have taken my own life because it was it was so bad. I wanted to die like I thought I was going to but I wanted to die.
Joe Coe 01:33
Migraine pain is much more than just a bad headache. It can creep into your life and quickly take over every inch of your being. Hi, I’m Joe Coe, the host of Talking Head Pain, where we confront pain head on. We often see middle aged white women portrayed as having migraine. In this episode, we are confronting these migraine stereotypes head on.
01:54
My name is Sean McAvoy. I am 51 years old. I’m retired from the military. I was in the Air Force for 15 years and was released from there for medical reasons because of migraines and a compressed nerve in my neck and few other injuries. I’ve taken up photography in the last couple of years as kind of a side hustle.
Joe Coe 02:13
Thank you for joining us today. So do you remember when you first started to get migraine?
02:18
First time I remember getting migraines I was about eight years old. Didn’t know what it was, you know, knew it was bad headache. At the time. I mean, it was in the late 70s. So there wasn’t any, you know, couldn’t look it up on the internet. Of course, I was given some aspirin, they were more weather related, I think, if I remember correctly. And as I got older, they became more frequent and more more triggers that I get with them. And when there’s any kind of barometric pressure changes, stress, whatever, I will always get a migraine every time.
Joe Coe 02:53
I often joke, Sean, that I’m a better forecaster than the weather people. Maybe your side hustle could have been a weatherman?
03:01
Yeah, I say the same thing. Like I’m a walking, walking weather barometer, you know, I can tell people when it’s gonna rain the next day or whatever. So.
Joe Coe 03:11
It’s definitely my superpower. When were you first diagnosed with migraine?
03:16
It was in the military. I think I was about 23-24. So it would have been, like 1992-93. So I went from from age 8 to like 24 with not knowing just thinking that these are just bad headaches.
Joe Coe 03:32
How did you get diagnosed?
Sean McEvoy 03:34
I was in military and I was having to call in sick quite frequently from work with migraines and or going home early. And so I had a really bad one one day I thought I was you know, gonna die. So I went to the military hospital and you know, the doctor took all the symptoms and everything and, and stuff and he said, “Well, I think you’ve got more going on than just a headache. Right? I think you might have migraine,” so they they referred me to a neurologist and sure enough it was, I was diagnosed classic migraines and and yeah, it was so it was a military doctor that diagnosed me.
Joe Coe 04:14
Stories of people like Sean, former men in the military, aren’t usually the stories we hear and see about people with migraine. I wondered what factors might be at play that contribute to this. Do you find that it’s harder to get through through men that men aren’t looking for the mental health help or addressing their migraine symptoms?
04:35
Oh, absolutely. Absolutely. One. I mean, migraines have always been and I don’t know if you’ve experienced it, but in my lifetime. I’ve always experienced that, you know, people say, “Oh, migraine, you get migraines. You’re a man, right? You’re not a woman. It’s a woman’s disease.” And I’m like, “Well, no, it’s not.” You know, it’s more prevalent in women. And I think it’s more prevalent only because women are more, more out to seek help for it. I find men are very reluctant, you know, you have that, that tough guy mentality that you just you grin and bear, you get through it right. No pain, no gain, right. That’s, that’s what we’re taught as kids and growing up and, you know, from our fathers and you know, unfortunately, a lot of people I think are still suffering without being diagnosed because of that, that mentality and, and I, you know, when I talk to other men, they’re, they’re like, “Yeah, well, I yeah, I get migraines too, but I’ve done nothing for them or that sounds like what I’ve got, but, you know, doctors never, I’ve never spoken to the doctor about,” and that’s because they’re afraid of being looking like they’re weak, basically. And you see that a lot in the military, too. So it’s, it’s in with veterans. So I try to talk to people all the time and say, look, there’s nothing embarrassing about this. It is what it is nothing to be ashamed about. And that’s what I try and tell people all the time.
Joe Coe 06:02
Sean saying that men are less likely to seek treatment isn’t just a hunch. There does seem to be a difference between men and women when it comes to discussing migraine. To find out more, I spoke with neurologist, Dr. Peter McAllister.
Peter McAllister, M.D. 06:16
Yes, men and women talk about migraine differently. My practice is probably 75% women, and for a couple of reasons. First of all, migraine does affect women three times more than men. But beyond that, men seem more likely to not seek care compared to women, they tend to treat themselves over the counter. And they tend to get into, in my opinion, more trouble with this medication overuse. So a typical male coming in, has finally either been forced in by his spouse, or is losing time from work and has no choice but shows up. And they’re generally taking a whole lot of Excedrin, etc. So, that is one group, women tend to seek healthcare, women tend also and again, there’s a lot of overlap, this isn’t black and white. But women as a whole tend to be more responsive when I discuss with them lifestyle modification. So I think that in general, with exceptions, women are more likely to embrace biofeedback and meditation and mindfulness and adopting an exercise program and dietary changes. So you know, those things are helpful. So with some men, I have to kind of strong arm them to do the things I need to do. But as a clinician, you need to make the case and close the deal. So even in those somewhat more difficult patients, I can usually get it across if I work at it. So again, with you know, a whole lot of exceptions to this rule, men tend to come in when their disability is more significant. And so I make the case that their job performance, their careers, what they’ve thought of themselves, you know, going forward, can be very adversely affected unless they get on the right path. And the right path would be these lifestyle changes, these medications, these supplements, etc. And I need to get that sort of buy in. Sometimes with women, I find their issue is that they will put their kids in their family first to you know, and deprive themselves. And then my argument there to make the deal is look, your kids are going to be worse off if you’re lying in bed with an ice pack on your head, nauseous, and unable to care for them. So sometimes you have to make the case based on what’s going on around them because they don’t think about themselves.
Joe Coe 08:42
The idea that men might not seek help due to their careers made me wonder about Sean’s career in the military. Did getting diagnosed with migraine impact your career in the military?
08:53
No. No, not really. As long as I was still able to be deployed.
Joe Coe 09:00
What about people around you in the military? Did they understand what was happening? If you are in the barracks and having a migraine?
09:07
Oh, no, no, no, not at all. No, there was I remember this this day. In particular, it was mid August, I was on in training for my for my trades that I was and we were like going through exams and stuff and it was just stress being the trigger. I was pretty stressed out. Got a migraine. End of the day, it was three o’clock or whatever. In the afternoon. I was lying on my bunk on a pillow over my head. And there’s people like it was four to a room at the time. Three roommates and you know, their blasting music and you know, talking loud and partying up and I’m sitting there and saying guys keep it down there. They’re like, Yeah, whatever. And they did. No, they didn’t care. Right. They didn’t understand, you know, and I find people if you don’t have migraines, they really don’t understand the extreme pain that that you experienced. They don’t get it. They think, Oh, it’s just a headache and, you know, take some Tylenol, but it doesn’t work like that.
Joe Coe 10:13
Have you experienced any stigma when you have spoken out? Either from people close to you or people in the community?
10:24
Yeah, for sure. People who don’t experience it, they don’t get it. They just don’t understand. And, you know, I’ve had people like Facebook friends that, you know, I used to work with or have been friends with for years, and now all of a sudden they drop you because because they don’t like hearing about all migraines, or chronic pain or depression and mental illness, right? They think that you’re, you’re weak friends have dropped me on Facebook and social media and stuff. And I’m like, you know what, I don’t need you in my life. So that’s, I’m at the point now that I just I ignore that. That noise in the background for, for lack of better word, I just, I do my thing. And if people don’t like it, then then don’t listen.
Joe Coe 11:16
Yeah, it’s important. I think a lot of us get to that place of being really secure in ourselves, and we could let it roll off.
11:22
Yeah, so I mean, it. I grew up with that all my life. I grew up in a military family. My dad used to be in the military, Both my grandfathers, uncles, cousins, you know, the whole bit. And that that’s a mentality that that is big in the military. You know, if if you have a medical condition, then you know, they consider you sick, lame, or lazy. Anytime anyone goes to the hospital for condition or migraine attack, whatever. Oh, that guy’s sick, lame, and lazy. Right. But one of the biggest sayings that the military first time I heard it was in boot camp was was you know, some one of the guys It wasn’t me had twisted his ankle or something. And they the the, the drill instructor, he was all, “Come on, suck it up, Nancy, let’s go we got a march to do,” you know, and that kind of like, it was kind of, okay, you’re at boot camp. That’s how you treated you get that but as my career went on, you heard it more and more, just suck it up. Right.
Joe Coe 12:33
Sean definitely highlighted that men are more likely to live through their pain and are less likely to seek help. Could this cause other poor health outcomes? What’s the danger of sucking it up?
12:46
There’s a lot of it. I think there’s a lot the one is that you know sucking it up then you’re not talking about it, you’re not dealing with it you know, you’re dealing with it yourself keeping it bottled up, you go through those those mental health crisis. For me not talking about it and stuff I did go through a period of depression that was really dark for me. You know, I pushed everyone in my life away; my family my friends, you know, my wife everyone I just pushed everyone away and that was from not talking about it. That was keeping it bottled up not telling people how I felt or or even seeking any kind of treatment or talking to my doctor. It was suggested to me by my psychologist a few years ago that I needed to take up a hobby and do something to get out to get out of the house, help with my depression, help with the pain to get moving again. And I just turned to photography. Big stress relief for me because I can get out in the fresh air. I also do a lot of reading, love to read takes me in a whole different world.
Joe Coe 14:00
You talked about the feeling of of suicide and being at your the end of your rope when being in the middle of the worst migraine attack and you work with, and are an advocate for people with migraine, in fact, is that something that you help address and work with the community on?
14:19
I try to, yeah. One thing we, you know, we know as chronic pain because I have both chronic pain and the migraines is that that yeah, you know, depression and the suicide ideas are prevalent right in in anyone with with these conditions. I’m not I’m not ashamed of it. I tell people about it all the time. You know, my depression that I do have, you know, the thoughts and feelings that I’ve had in the past, I tried to bring it out and talk to people and tell them like it’s not there’s no stigma attached to this. You know, you’re you’re suffering you need help, right? You can’t just, you can’t get through by yourself. And I try and tell people that and that, you know, there’s nothing wrong with seeking professional help or talking to someone, you know.
Joe Coe 15:14
There are men that need to hear this. If you’re talking to a guy, and he has migraine, and maybe he’s not treating it, or he’s not addressing it, what do you say to him?
15:26
I would say, dude, you need to get this looked at because life is so much better having them under control, you know, you’re not gonna get rid of your migraines. But, but if you can control them, your life will will drastically improve and you’ll, you’ll enjoy the things around you. Right? And if, if they’re not willing to get help, I mean, not much, you know, I try to just keep at them, persuade them, but for the most part, and I’ll speak with like, on veterans groups, when I when I talked to veterans about and stuff for the most part, guys are, are more willing, I think nowadays than they were even two or three years ago to come forward to say, yeah, I’m suffering from this. I need help. Right. So I, you know, I’m finding that not really coming across it as much anymore of men saying or not talking about it, you know, are seeking help.
Joe Coe 16:34
As a reminder, if your pain is causing you to think about harming yourself, there is help. In the United States, you can call the National Suicide Prevention Lifeline. 1-800-273-8255. Sean’s story shines a light on the importance of men seeking medical help, whether it’s for migraine, mental health, or any type of pain that we may be enduring. Sucking it up just sucks. So speak up for yourself and get the help that you need. If you or someone you know needs more information about different types of head pain, how to get diagnosed, and how to manage, listen to our Talking Head Pain audio guides, found at talkingheadpain.org
Cara, an author, and her husband Seth, cofounder of GHLF, talk about the impact of migraine as a married couple who are raising children.
S1E5: Married with Migraine
CZ We were on a plane from Sydney to Los Angeles. It just triggered a migraine, and then on board there was like one screaming child, and it was just terrible, like I could feel it coming on. I had zero medication to take, and it was just getting worse and worse, and I threw up at least seven times. I was in so much pain, my head was just throbbing uncontrollably, I was feeling extremely nauseous, I couldn’t stop throwing up. Thankfully Seth was there to help me, our daughter was one at the time, and it was a nightmare, because obviously you can’t get off the plane, so you’re stuck there until you land, and it was just the worst experience I had ever had.
JC – For people living with migraine attacks can plague you at any moment. I know this all too well, having lived with migraine for over 20 years. Hi, I’m Joe Coe, the host of Talking Head Pain, where we confront pain, head on. Although migraine affects more men than women, all genders, all ages, and all ethnicities experience the effects the migraine can have. In this episode we are looking into how migraine creeps into a relationship, and how one couple is managing migraine and their marriage.
SG – Hi, I’m Seth Ginsberg, the co-founder and President of the Global Healthy Living Foundation, a worldwide non-profit for people with chronic diseases. I’ve had arthritis since I was 13, and co founded the organisation over 20 years ago from a college dorm room bunk bed.
CZ – Hi, my name is Cara and I am 40 years old, and I;m the found of Big World of Little Dude which is an educational platform teaching children social and emotional skills
SG – We met 12 years ago and it was love at first sight, and then we married…
CZ – 2012.
SG – Yeah, eight years ago.
JC – Cara, do you remember when you first started to get migraines? How old were you?
CZ – The first ever migraine I ever got was before the equivalent of an SAT exam when I was about 17 years old, and then I didn’t really get any until in my early 20s, and I just remember being in bed in absolute pain and not knowing what to do, and just taking whatever over the counter medication, but it just never worked. It was a long time, I just kind of suffered through them and thought this is just my life, and this is just what happens and I just deal with it as they come up, and it was only when I had a really bad episodic moment on an aeroplane from Sydney to Los Angeles, that I realised I had a real problem, and sort medical attention from a Neurologist. I’ve had migraine for 15 years, 20 years, so that was about the 15 year mark.
JC – Yeah you heard that right. 15 years. It took Cara 15 years to decided enough is enough, and seek out medical help. It pains me to think how much pain she went through in those years. But I hate to say it, this isn’t uncommon among the migraine community, a lot of us are in pain for a number of years before we speak up, and there’s many different reasons for that. Cara’s, I believe, would be very common among women.
CZ – I think because it was just around my period I thought well you know you get period pain, I get a migraine, it is what it is, it sucks for three days, and that’s just life. That’s basically it, and the medication I was on I was like, this is as good as it gets, and just not knowing that there was more involved advice and help out there, and I honestly don’t know why i grin and bare it for so many years. Maybe it is a male/female thing?
SG – I think the nature of Cara and a frankly probably a lot of folks that suffer from migraine is I’ll just grin and bare it, I’ll get through it, I’ll deal with it. Yeah it hurts, yeah it impacts my life, but yeah, I’ll deal with it.
JC – I’m so glad to hear that you went and did something about it, it’s not easy. So when you finally started that treatment journey, what did it look like for you?
CZ – I got put on a medication that did work, but then after I had my second child, it stopped being effective, and then I got put on another medication that made me feel extremely zonked out, like if i took the medication, I would not be able to function.
So what I was doing was having the headache through the day, because I had to function and go about my day and look after kids and do whatever I had to do, and my migraine was so bad by the time I took the medication in the evening I had missed that window. Because as soon as you feel that migraine, you take that medication. Now I’m on a different same group of medication but just a different one and I am finding that that is better.
JC – How did it first come up in your relationship?
SG – It came up in our relationship in a social setting because there were times when we had been invited out to be social, and Cara would decline, and this is before she really divulged the extent of it, and I truly thought it was a function of being anti social, and then at some point it was revealed that that’s what this is. To me I was happy in a sense to understand that, so it has a name, it has a diagnosis and theoretically a prognosis.
CZ – And also we come from different perspectives, I just accepted that this is what I have, like this is what happens to me, but Seth has a different viewpoint.
SG – As Cara mentioned for a long time, she would not necessarily share with me the extent of her migraines, or that they were coming and so I didn’t know, I just didn’t know.
SG – It was a real inflection point and turning point for us to manage this.
JC – I can imagine that would have been hard on the both of you, and now you’re both sort of managing migraine together, so what does an average migraine look like?
CZ – My migraines are hormonal based, so every time I get my period once a month, that’s when I get my migraines, not to say they don’t happen at other times, stress is a big trigger as well. So if I am under a lot of stress I might have more than one migraine a month, but on average I have one migraine a month. My migraines tend to last three days, so the day that it’s sort of coming on, and the next day is the worst day, adn the day after that is when the migraine slowly starts dissipating. So the first day I push through, I function, I take my medication, I get through the day, but then by the next day, that it when I tend to need to lay down and cancel things, and the next day I might, you know, it just depends each month, but generally three days. It just really depends, now I’m on this new medication as soon as I feel it coming on, I will take that medication, and I will take whatever amount I can. And I just know that in the evening once the kids go to bed, I am in bed by 6.30 – 7 o’clock, quiet and getting as much rest as I can. There’s nothing I can do to stop it basically, it’s just how bad is it going to be?
JC – This isn’t the first time Cara has mentioned linking her hormone cycle to her migraines. I don’t have a whole lot of experience in this department, so I have enlisted the help of medical director of the New England Institute for Neurology and Headache,Dr. Peter McAllister, to help us better understand the link.
PM – In women 40% have a trigger in the drop in their estrogen, so menstrual migraine is very very common and it’s related to change. The relationship between hormones and migraine was figured out more than 25 years ago and there were some studies that really documented that the drop in estrogen as the biggest trigger for most women. So the most vulnerable days are the day before or day of of period, and if that is consistent we sometimes take up that mantle and say let’s try to treat hormonally, one can go on, if it’s good for your lifestyle, a low dose continuous estrogen oral contraceptive and that sometimes eliminates or markedly decreases the period, obviously if you don’t have a period, you don’t have a menstrual migraine.
JC – It’s very interesting the changes related to estrogen levels which then affect migraine, which would explain why more women have migraine over men. However I can imagine changing contraception for migraine is a big decision, and there would be other non medical changes that other women could make. I was interested to find out if Cara had tried any lifestyle changes or holistic treatments.
CZ – Yes. I mean I don’t drink because that triggers a migraine or a headache, so I eliminated alcohol. Massage brings some relief when I’m having a migraine, it doesn’t take it away, but it just gives me that 45 minutes not focusing on the pain in my head and I find that brings me some relief. I use lavender oil, heat packs and cold packs on the points on my neck. I saw a migraine specialist here who did realignment of your neck, so I am open to trying alternative therapies.
JC – I haven’t mentioned this yet, but Seth is actually my boss, so I feel a bit awkward asking this, but we’re really trying to uncover what migraine looks like in a relationship, and in particular marriage.
Knowing how I am with migraine , and how it can wipe me out, I can imagine it would be hard managing in a marriage for the both of you. So how does migraine affect your relationship?
CZ – I feel guilty when I have a migraine, because it’s like I know when it’s going to come, I’m expecting it to arrive and then I feel guilty that I need to lay down or checkout. So there’s like, I know I need to lay down, I know I need to be in a dark space, I know I need quiet, but there’s guilt that comes around that, because it’s like, well I had ten things planned for that day, I’m now going to have to cancel it, so letting people down, letting myself down, and so there’s a lot of guilt and shame wrapped in that, but also feeling I’ve got the migraine so I have to just get through it.
SG – You know, living with someone they love who has migraine, at times very helpless, but also you know, just pissed off, really angry, not at Cara directly, but definitely indirectly at times, because it’s like why aren’t you managing this? You know, I’d be on the phone with the doctor saying this is BS this isn’t working, but that’s not how she’d approach it and so I could assign blame, but that doesn’t help, especially when someone’s got a migraine. It’s not her fault at the end of the day, but it’s her responsibility, and then by default it’s my responsibility, it’s our responsibility.
JC – Are there any positives that have come about sharing migraine and a better understanding of each other through that process?
CZ – I would prefer not to have migraine, but I guess the positive is the support and communication that has developed because of it.
SG – Now that we have a kind of an understanding between each other to be very open and candid it’s a lot more matter of fact, Cara is a lot less afraid to tell me about it, and I flip into do anything I can to help out and support so she can do everything that she can to feel better as soon as possible. A lot of times that’s just close the door put the eye mask on, lay down., cover her head with a pillow and sleep it of, so that’s how we approach it now, is just being open and candid and matter of fact. I’ve learnt to be a lot more understanding I’ve brought a lot more empathy to the table.
JC – If you were to give another couple that is dealing with migraine, some advice, what would that advice be?
CZ – Clear communication, and support, whilst you’re having the migraine, and then just supporting your partner how they want to go about solving it, you may be on different pages but just going with how the person suffering from the migraine wants to handle it, so just supporting that person.
SG – I would say to any couple out there, that migraine is a team game, and the person suffering from the migraine is one part of the team, but the person supporting that person, the partner, is also a part of the team and has to play a really active role, and that goes from household duties, which are really important, when someone has a migraine the last thing they should be thinking about is transferring the wash to the dryer or something like that, but it also moves up the ladder of importance to talking to the doctor, too often people like Cara strong independent people aren’t forthcoming about their challenges their medical issues with the very people that are in a position to help. The last area to support and something I think about is the role everyone can play in dealing with the insurance companies and coverage or an employer or any healthcare related stakeholders, we might call them. Who are really important to the equation, and with whom you can be really successful, or without whom or against you’ve got real challenges. It’s an arm and arm walk through the process, but nobody should go it alone if they don’t have to. So I would say support each other in that way, nobody should go it alone if they don’t have to.To couples out there, married or otherwise, putting yourself in someone else’s shoes is usually the best way to get the empathy they deserve. Take a moment, take a few deep breaths and you realise it’s not easy and what they’re going through is very challenging and so the definition of love and support is doing anything you can to help that person.
JC – It’s definitely not easy managing migraine when we’re in a relationship, there isn’t one clear cut way to manage or an easy answer to it, it’s about making sacrifices when we need to, and having a partner who is willing to do the same alongside us. It’s great to see that Seth and Cara, with busy lives, busy careers, and two kids, can still manage all of that with migraine in their lives as well. If you’re looking for more information on managing migraine, in your everyday life, or if you’re still trying to find out if you are suffering from migraine, listen to our Talking Head Pain audio guides.
Sarah Reneé, a patient advocate, shares her experiences of navigating migraine care as a person in various marginalized communities.
S1E4: Black, Queer, and in Pain
JC: Joe Coe
SS: Sarah Renee Shaw
PM: Dr. Peter McAllister
SS – My worst migraine attack was right before my 25th birthday, I remember it was summertime because it was hot out. I had a non stop migraine attack that lasted for about three months, and the first month I was like, okay, maybe by next month, it’ll definitely be gone. And then around month two, I started to get really depressed because I was cancelling events, I was cancelling things with friends. I was really struggling at work. And I didn’t see anybody else like me struggling the way that I was struggling you know, you hear when people have chronic diseases or chronic illnesses.
I started develop a lot of anxiety about like my performance because I was so afraid that I was going to get fired because I was having attacks at work. I had to put my head down a lot and I didn’t want them to think that I wasn’t committed and I wasn’t a reliable employee, and then around the third month it was so severe that I actually I couldn’t go to a work event it was, I had, I had a talk with my boss and I was like, I am in so much pain that I, I can’t do this event. And it was a really low point in my life. Because it was the sharp shooting pain, I was nauseous all the time I was barely eating, it was hard to keep food in my sleep, it’s hard to keep food down, every anything that I looked at, made me want to throw up lights, and I wasn’t able to go out at night or drive at night, because I could barely see, I was waking up every morning, kind of half blind in one eye. And it was really scary. Like, I know my brain has trauma from being in that much pain, my body remembers being in that much pain, and some days it’s unbearable, you go to a really dark place.
JC – Losing three months of your life to an ongoing migraine would be devastating. How can anyone live with that pain for 90 straight days? For some people living with migraine, this can be the reality. Not because there aren’t treatments out there available to us, but because of the gap in healthcare with marginalized communities. Hi, I’m Joe Coe, host of Talking Head Pain, where we confront pain head on. In this episode we speak about inequalities in healthcare that affects LGBTGI and BIPOC communities, with Sarah Shaw.
SS – My name is Sarah Shaw. I am 31 years old, and I’m a patient advocate.
JC – Can you start by talking about when you first started to get migraine attacks? How old were you?
SS – I was about 23 – 24. When I first started to realise the pain that I was experiencing wasn’t normal pain. I had headaches all throughout college, and I just assumed it was from stress, and my first migraine attack, though, was about six months after I graduated. And it was I was actually at a social event. It was around Halloween. And it was a corn maze. And it was a group of five of us and we’re standing in line. It’s kind of cold, not too cold. I just started experiences very sharp, jagged shooting pain that kind of shot through my right eye and through the back of my skull. And it kind of took my breath away. And the pounding and the the sharp pain just didn’t stop everything just felt too loud. Everything looked too bright. Everything was just too much. And I remember looking around and asking the people who I was with, like, Can you feel anything like I thought like it was something that other like I thought maybe something had been going on. But it was something we ate, maybe it was, you know, something we drank. And they were like, no, we’re fine. And I push through the night. But I remember the next three days being in excruciating pain. I didn’t want to leave my bed. I didn’t. I could barely eat. I was severely nauseated. And that was something I hadn’t really dealt with before. And I at that point, I didn’t know what I was experiencing was a migraine attack. Because all the side effects were not just pain. It was light sensitivity, sound sensitivity, extreme nausea. I thought maybe I caught like a weird bug that you know, a virus that have been going around and it was really scary. Because no one my age knew what was happening.
JC – So is that how you were able to figure out that it wasn’t, quote unquote, just a headache.
SS – It wasn’t until I had seen a few different doctors that I had figured out that it was more than just the headache, the word migraine wasn’t really even passed around until I think I had seen my second or third doctor. And by a describe the other side effects. They thought I was having a stroke, they thought that there was something else there that wasn’t just migraine, and obviously I got tested for all those things. But in media at the time, this was you know, more than five years ago. I didn’t hear that migraine was more than just head pain. I just assumed you know, you see it commercials you know, it’s a lady laying down on the couch being like, children be quiet. I have a migraine and she’s going like this and she just laying in the dark. I never put two and two together that the laying in the dark was because of light sensitivity or what? Or maybe they didn’t even think about that. Maybe in the movies. They’re just putting you know A woman in her 40s and dark room because that’s what they do. I didn’t recognise that light sensitivity was one of the side effects from migraine. And from then on, I knew that you know if it was nausea, light sensitivity and fountain sensitivity, it was for aura that I started experiencing a little bit later, the light flickers that I get with my eyes that Yep, a migraine coming.
JC – It’s interesting that Sarah was aware of what migraine was, she had seen it in the media, and on ads, but she never connected it to what she was experiencing. I wanted to dig a bit deeper to find out what exactly she couldn’t connect the two. You talked about portrayals of people with migraine? Did you see black people that look like you? And those?
SS – No, no, not at all. One of the reasons why I didn’t even snap to judgement that it was a migraine attack was because you hear the word migraine thrown around a lot, it’s sometimes very stigmatised and when it’s portrayed, it’s all middle aged white women. And to be honest with you, I didn’t know and none of this is me being naive, but I didn’t recognise that black people, this was something that black people could get, because I had never seen until much recently, black people portrayed in migraine commercials with, even for like, you know, prescription medications, in social media. In doctor’s offices, in the very beginning, all of my doctors were white too. So it wasn’t something I was like, am I one of the few black people women who get migraine? And I think deep down, I knew that that wasn’t the case. But it made me feel like that was the case because that’s what was portrayed. And it was confusing.
JC – I can imagine. Was it hard to get a diagnosis? And do you feel like it was delayed because of your multiple identities as a queer black woman?
SS – It was very difficult to get an official diagnosis in the beginning because from a young age, I’ve had multiple chronic illnesses ranging from which weren’t even still diagnosed until I was more more mature and an adult. When I was little doctors said that I was making things up and that it was all in my head, you know, you know, she’s just looking for attention. So I I avoided the doctor for a while because I didn’t want to hear those things about. I’m not making up the pain, like it’s something that’s true. And the test results kept coming back good, meaning there was nothing there. And so in the very beginning, I was like I don’t want to be gaslit by doctors anymore. I don’t want someone I know I’m in pain. I went to the doctor, I didn’t bring up the word migraine. I was just like, let’s see. And they were like, Oh, it’s stress. It’s just stressed. You know, like, it sounds like your job is really stressful. Maybe you should try quitting. I was like, quitting, like, that’s gonna make me more stressed out, because how am I going to pay my bills and pay my student loans and pay my rent. So I think it took me about a year and a half to two years to get to a specialist who won. And not even then because even the specialists that I was seeing, the one who did diagnose me with migraine, she kind of just threw might like she was like, here’s a trigger sheet, just track them, and didn’t give me any sort of programme like plan to help me navigate the disease.
It was kind of like, here’s a list of all the triggers that could treat treat migraine, there’s no cure, it’s not going away. And I don’t know if it was because I was queer because I was black. Like, you can’t come out and like sit like that it’s something that’s unspoken. When you’re treated a certain way. Oh, she’s young. She’s just looking for painkillers. She’s black. She’s you know, I don’t like to use the word drug seeker. Because I think that that is a very bad connotation. But I think that’s how doctors treated me in the beginning. I knew that I needed something that was going to help me manage the pain because what they were giving me wasn’t it and so it felt like I had to better represent myself. I had to come across more professional or I noticed that I I noticed that I was treated differently if I came to To a doctor’s appointment in sweatpants and a sweatshirt, versus if I was coming straight from work where I was wearing a professional attire, and that really messed with my head, because it shouldn’t be that way. Not you don’t you don’t you don’t get to judge somebody from where they came from, based on what financial bracket that they’re in, everybody deserves access to health care. I grew up in a household where my entire family had chronic either chronic pain issues, ah, my brother is HIV positive, my brother has cerebral palsy, we were constantly seeing doctors. But one thing that remained the same was, I’m adopted, my dad is white. So it made me realise they listened more to the white man. That’s how he got his kids the care that he needed, because he was just taken more seriously. But if I ever went alone, I had to fight, I had to fight for my care.
JC – This would be incredibly frustrating, but Sarah managed to find the right medical advice that she needed by turning to a pharmacist, and the biggest difference between the several doctors she had been to, and this one pharmacist, is that she looked like her.
SS – I think the thing that drew me to the pharmacist was she was a woman of colour. That was the first thing I think it was a rite aid pharmacy. And it was a pharmacy that I would go to frequently for other things like face washes and stuff. So with frequent digital, I think he would see me and I was like, they always have that section where it says questions or something, or consultations are something I was like, I may as well try. She’s Brown. I’m a black woman, like maybe she’ll take me seriously. Maybe we’ll have an open conversation and she knows something that can help me talk to doctors. I felt like I could talk more to them and I could be I can find more more relatable to them because they’re not going to judge me if I’m clear if I’m black, I’m just looking for a device. And that’s where the word migraine even popped up first when there was like, she was like, Oh, you know what it sounds like you’re just having a migraine.
JC – What do you think are some of the unique challenges that LGBTQ people face when accessing migraine treatment and care?
SS – I think I think the first thing is finding LGBTQ plus friendly doctors, because those are very far and few in between when I say that, I don’t mean, you know, oh, I have I have a gay specialist. I mean, people who, when you go to the office, there is gender affirming language, there’s more than just male and female on the form, there’s pronouns, or there are certain things that come up in care where, and this is different.
JC – Gender affirming language literally save lives. As a member of LGBT myself I’m happy that Sarah is raising this point. It is a simple and affirming act that we all can do. In addition not having access to specialists that understand people who are Black or LGBTQ can deter people from getting treatment. I went back to our friend Neurologist Dr. Peter McAllister for him to explain from a medical perspective how health disparities impact care.
PM – There are a lot of health disparities in this country, and that’s unfortunate. I think that with migraine, underserved communities are exactly that they’re underserved in the migraine space, they have less access to doctors who understand migraine and take care of them. They have many more barriers to get to in certain communities and doctors are virtually full, they can’t accommodate one more patient. Sometimes there is not a headache specialist available. Lower socio economic folks, people of colour etc. seem to have a difficult time traversing multiple barriers to go from getting the proper diagnosis, to getting the proper treatment to getting the proper follow up. And that’s that that’s been well shown. Even though migraine disproportionately affects communities of colour, lower socio economic, etc compared to those who aren’t in that situation. So the exact group who has more migraines is having more barriers to jump through to get access to care.
JC – Is there research that indicates why marginalised communities have a higher prevalence of migraine?
PM – Yes, and mainly it comes down to stressors. If you are on a food Island, and it takes four different bus routes to get food for your family, if you’re at risk of losing your job every other week, if you are in an unsafe community. All of this increases stress decreases, sleep increases worry. And again, migraine being a bio psycho social disorder, these stressors impact on their disease.
JC – People with chronic disease already navigate a system that is not created to help us. From having to go through step therapy and prior authorizations to the general disregarding of invisible disease barriers are no stranger to people with chronic disease. But how do people who are also part of marginalized communities get the care they need? So how did Sarah get the care she needs?
SS – It wasn’t until I started, I equipped myself with the language. And I started talking about the research and the different nerves and things in the brain, that people started to take me a little bit more seriously. And it shouldn’t be that way. It shouldn’t be just because I’m black, or just because I’m queer. I don’t deserve treatment. I don’t deserve results. I don’t deserve a diagnosis. It shouldn’t take me coming in with handfuls of knowledge and saying, Hey, here’s what I think it is. Here’s why I think it isn’t here’s some fancy schmancy words, that will make you take me more seriously, that shouldn’t be the case, and I think that that was the case a lot. I think that they didn’t want to take the time to possibly treat somebody that they thought was looking for drugs, and that was upsetting, and not everybody has access to education. I have Wi-Fi I have internet, I was able to go and do these things. I wasn’t working back to back to back jobs to provide for my family. So I had time to look up that stuff to better represent myself.
JC – Sarah is successfully managing her own healthcare now, but it’s taken a really long time to get to this point. If you can relate to Sarah’s journey, she has a bit of advice.
SS – The first thing I would say is don’t give up. I think that that’s one of the first things that people do, because being gaslit is really upsetting. And when you go to the doctor, you expect that they’re there to help you. So my first thing is, I would say keep pushing. Ask, if they’re denying you care, to make a note of that in your patient record. Three. And I hate to say that this is what I did, but I would bring my partner along, when I was dealing with a really frustrating doctor, where she could advocate for me as well. And that was kind of complicated, because a lot of doctors, you know, if you’re in a hetero relationship, if I would be with a man, and sometimes men have are respected more.
But with us, it was nice to, you know, round queer women like being like no you to give me care. And sometimes it worked. And sometimes it doesn’t. And then when all else fails, you have to find a new doctor, or switch to another doctor, possibly within that practice. I did that, that I’ve done that twice. Now where I wasn’t, I was getting gaslit, I was told, quitting, my job would relieve my migraine attacks. And I really liked the location. So I switched to a different doctor in that practice. But it’s difficult because not everybody has, has the same resources. So those are, those are my suggestions of at least first steps. The world can be made for everybody. But the focus isn’t on marginalised people, the focus isn’t on queer people, the focus isn’t on black people, it’s we have to fix the system to make sure everybody has the same access to treatment. Our health insurance should not be tied to whether you’re able to work 40 hours a week or not or not. It should be tied to everyone deserves basic human rights and health care should be one of them.
JC – Sarah fought hard to get the care she deserves. It should not be this way at all. Hearing her speak about her experiences reminded me of a lesser known statement that Dr, Martin Luther King JR said “Of all the forms of inequality, injustice in healthcare is the most shocking and inhumane.” We all have a part to play in undoing the systems of injustice that keep people in pain.
If you need more information to equip yourself in this battle. You have access to our free audio guides that breakdown what migraine is, the different treatments currently available, and other options to better manage your migraine, you can find these at talkingheadpain.org.
Lori, Executive Vice President, Human Resources at Amgen, shares her migraine journey and discusses how HR professionals can support people living with migraine. Lori’s story teaches us that no matter who you are in the migraine and headache community, we all have similar struggles, and using our voice is one way overcome them.
S1E3: Leading with Migraine
JC: Joe Coe
LJ: Lori Johnston
LJ – The new neurologist in California wanted to start me on new medication and stop the medication that I had previously, and during that time, the migraines just seemed to intensify. And it was almost as if they were on top of each other. I would finish a migraine and another migraine would start. I was an executive at Amgen at the time and I didn’t want anyone to know that I was having migraine and that I was throwing up or that I was having a difficult time reading the presentations..
So I found a bathroom in the basement of our executive building and I would get sick. And then I would sit on the floor up against the wall, leaning my head against the cold tile to see if I could at least have something subside, it became so intense that I ended up having my doctor, he suggested injecting nerve blocks, to see if the pain would subside.
I can remember sitting there on the table with my arms crossed in my head down, and receiving the injections. The injections were not were painful, but I looked up and tears were just streaming down my face because I was so desperate for anything to stop the pain, I wanted the pain to go away.
JC – That desperate attempt to do anything to alleviate pain is something all people living with head pain can relate to. Hi I’m Joe Coe, host of Talking Head Pain, where we confront pain head on. In this episode we speak to Lori, a member of the leadership team at a biotechnology company, about managing a career while living with migraine.
LJ – I’m Lori Johnston. I’m the Chief Human Resources Officer for Amgen, which is one of the largest global independent biotechnology companies. But I’m also a Mom. I’m a grandmother. I’m a sister, a friend, a wife, daughter. So I’m lots of things, but professionally, that’s what I am.
JC – That’s really important to highlight who we are outside of our professional roles, because we get defined way too much in our society. So really appreciate you highlighting that. Do you remember when you first started to get migraine? How long did it last? And how did it start?
LJ – Well Joe, I think that migraine started for me probably back in my teenage years. But when I first became diagnosed was about 14 years ago. And I was having a series of migraines that were just increasing in their intensity. And that’s when I talked with one of my doctors, and he sent me to a specialist to see if I could get some help.
JC – So you lived all those years with something that you may not have known was migraine. I think a lot of people can relate to that. What are your migraine symptoms like for you?
LJ – Well, most of my migraines tend to happen at night in the middle of the night, and I wake up with searing pain, nausea, usually I’m in, I have an aura I have, you know, you can see that it’s kind of coming down and finishing. I am unusual, I think – in the fact that I can’t really lay down during a migraine so I know I need to get up. I either stand against a wall or I sit against a wall or I sit up in a straight chair, seeing if the pain and the nausea will subside. It typically doesn’t. So you continue with a migraine for quite some time. And I do experience things like nausea and on occasion vomiting as well. So it tends to be a pretty painful and situation difficult situation for me.
JC – Can you go into a little bit more detail about how you got a diagnosis and what helped you get that diagnosis?
LJ – Certainly, I started having migraines to the point where my primary care physician when I was talking to him, at first Joe, I thought these were just headaches, very bad headaches. And then I started talking about my symptoms. And when I started throwing up and there was nausea, I just knew that something wasn’t right. And I really hadn’t heard very much about migraine at all. And my primary care physician sent me to a neurologist, and he immediately diagnosed me and started talking about migraine. And in a way, it was one of the most challenging times but in a way it was also one of the most liberating times because I finally felt I had something that I could research and I had someone who understood and I wasn’t just doing bad things that resulted in a very bad headache. To have a doctor say to me, this is a neurological disease. And it probably won’t go away on its own was just liberating.
JC – It is important to highlight this aspect of Lori’s story. For many of us it takes visits to different doctors to get a proper diagnosis. And if we lead busy lives and careers we might not want to slow down to take time to do this. You deserve to understand your disease and find ways to manage it. I also wanted to know whether she experiences something else that is very common among others in the head pain community. Have you had any trouble explaining the pain that you experienced with migraine, or what even migraine is to others?
LJ – You know, Joe, when I think about it now I really didn’t explain to many people at all what I was going through because I didn’t know how to explain it. It felt like I sounded weak, or I might be just trying to say I have a headache. And I talked to my husband, but even today, he’ll say, I’m not sure I ever really understood what you were going through. My mom and dad knew I had migraine, but not much more than that. We have four girls, we have grandkids. And it just wasn’t something I felt I should, for whatever reason, be explaining to the girls. And it just it felt like I was giving excuses. So I didn’t want to do it. I didn’t want to talk about the pain
JC – It’s very common. Has migraine impacted your interaction with your family or friends, you started to talk about this a little bit?
LJ – Well, when I was diagnosed with migraine, I was an executive. So I was an executive in human resources at the time working for, you know large companies. So I tried to be present for all of the girls activities. But what I found Joe and looking back on it now, it was almost like I was looking through a muddy glass, or I was living life through something that didn’t allow me to be as present or the memories as vivid. And often times the girls will talk about something and I’ll think was I there? Was that a migraine day was that what was happening because I don’t feel I can remember things as vividly. Now as the migraines have lessened, I realize how much I missed. By things not being as clear, I almost felt that I was walking through a fog.
JC – That’s a really powerful image. Why didn’t you want people to know that you were living with migraine? Have you felt stigma around migraine?
LJ – I thought someone would accuse me of being weak. And I grew up kind of Texas tough. We grew up as a family when you know something happened. You were just you know, you kind of suck it up Buttercup. You just sort of shake it off. And I felt that I would be labelled as weak and incompetent. And I did not want that, and the way that I worked through that is realizing that what I was going through was not just going to magically disappear, if I sucked it up, that I really had something where my body was reacting very differently than everyone else’s body.
JC – I’m not surprised that Lori felt she would be perceived as weak, I think we have all feared that, I know I have. As someone who part of the leadership team of a large company, I wondered what it was like when Lori opened up about her health journey with her colleagues.
LJ – The first time I told my patient story in front of our entire leadership team. I told them that I was scared to death. I thought I might end up being fired. You know, when my mind just ran away from itself, I would think about being fired. And I thought, How crazy is this? I’m a head of HR, what am I going to do – fire myself? You know, for having migraine. This is crazy. But a lot of times our stigmas come from the fact that we are silent. We’re silent sufferers. We don’t get to talk about our disease. And when you’re able to talk about it, and people are able to see what you go through and what you do. There’s strength in that. And I’m hoping through that, that we can break those stigmas of silence.
JC – Have you ever Lori had to ask for accommodations at work?
LJ – This may sound odd from the head of HR, but I haven’t asked for accommodations. And part of that Joe goes back to the point of I didn’t want people to know that I had migraine. In fact, when I finally told our CEO that I suffered from migraine, he was shocked. He cannot believe that I that is something I’ve been living through. But I do believe as well that my job in the way that I was able to manage things allowed me to have a bit more flexibility than what might normally exist for someone who as an example would be working on the manufacturing floor. So I was able to work at different times early in the morning, late at night, on the weekends, those things are accessible to me to be able to do.
JC – How does Amgen help employees that live with headaches and migraine?
LJ – Well, the first thing I would say Joe is creating panels and discussions where you can do exactly what we’re doing here, which is share your story here about patients. We always have meetings with patients coming in, which I think is, is just phenomenal, because it does share with you the patient journey and what people are going through. But in addition, just for our employees, it’s making sure that we have the proper benefits so that different management programmes and plans can be adhered to. We have when we were in offices, we’re not there today. But when we were in offices, we also have put in place dark rooms in many of our campuses and locations. And then just focusing on health and wellness. Because I think as you said, that’s such a big part of who we are right? allowing ourselves to self care.
JC – It’s great to hear that Amgen does this because we need more large companies really pushing this to make it normal for people to take that time to really invest like you said earlier Lori in the individual, knowing that there are a whole person and that a balanced person is happier. I think a lot of people would be interested in how you manage migraine and develop a career. So what is good management and good for lack of a better word of migraine mean for a person’s career of migraine mean for a person’s career?
LJ – Well, I’m not going to tell you it was easy. I feel like I dedicated a lot of attention to it. So what I would do is really manage my life around ensuring that I could deliver on the jobs that I had and the roles that I had. And that sometimes meant that in the evening, I needed to study my notes again for a key meeting. Or it would mean on the weekends I needed to rest, and if things were really bad. You know, I did have the flexibility where if a Saturday was better for me or a Sunday was better for me. But a Friday wasn’t so good. I might be able to take off a Friday afternoon and focus my attention on the weekend. So there was some flexibility there. But I would also tell you that it just wasn’t easy. I would certainly set my limits and not do things if I felt they were optional. I do believe that flexibility can help people who are managing their life, some are managing diseases, some are managing just their responsibilities of being a working parent or caring for the elderly. And I saw this through the pandemic that we became much more empathetic as an organization on allowing people to work the way they need to work. I also do believe that the pandemic created stress as well. And I think our focus on well-being and ensuring that you take walks and you have breaks is actually really good. And very important.
JC – It is reassuring to know that you can move up in your career or break barriers when you are also managing migraine. Hopefully, more places of employment can learn to be empathic and caring like Amgen. I thought it was important to speak to Lori about how living with a chronic disease like migraine can actually help her be better at her job. This is an area we often don’t think about.
Lori, how is your experience as a patient informed or impacted your work as an HR executive that helps other people in your work as an HR executive that helps other people?
LJ – Joe, this really came home to me with a friend of mine. So I have a really good friend who has stage four cancer. And I was meeting him for a coffee, tea for me, I don’t drink coffee, but we were meeting and sharing in a coffee and tea together. And he said, you know, Lori, before I had cancer, I thought I understood what it felt like. And he said, I realized now, I absolutely had no idea. And I feel that way, as a patient. I work in a biotechnology company that has patients at the center of what we do. But I do have to say, Joe, that until I became a patient, and when had everything happened from trying to get medications through a pharmacy to opening up and telling my story, I’m not sure I really understood what patients go through. And I think it just makes me more aware of what people are walking through. And many people, many people deal with some type of disease, either chronically or temporarily. And I think the more compassion we have for that the better we’ll be.
JC – Compassion is key. We are fortunate that Lori is using her platform to help raise awareness for all of us living with migraine. Here are Lori’s parting words to us.
LJ – There’s so many things I wish I could say about living with migraine. But I think at my core. What I want people to know is there are so many people that are suffering from migraine and what you’re missing out on as a society is that bravery courageous at the people that advocate, survivors, thrivers and not to be dismissed. I don’t think migraine pain needs to be dismissed. It’s a whole group of people that I admire. I would say is don’t give up. There are so many companies, individuals, , foundations, like yours, that are really working on behalf of patients. And the science, biology and even technology are advancing. And I just believe that we shouldn’t give up, we should hope. And we should advocate. And I think that’s what you’re doing. And I’m impressed with what you’re doing. And I’m impressed with what companies like ours are doing. Well, I do want to thank you, Joe, I want to thank you, for making it easy to talk about migraine. And also, I want to thank you, and Global Healthy Living Foundation for the work that you do for patients like me, and how you advocate for us.
JC – Talking with Lori felt like speaking with friend I’ve known for decades. From the moment the interview started her presence was calming and reassuring. Knowing that she is a leader in Human Relations gives me hope. Hope that other HR professionals will follow her lead and create the workplaces that we need be productive and thrive. Lori’s story teaches us that no matter who you are in the migraine and headache community, we all have similar struggles, and using our voice is one way to overcome them. If you need further information about migraine, whether that’s medical or non medical treatments, or how to manage in the workplace, our free audio guides can help
Joe, a retired firefighter, describes how he became the hero in his own personal headache nightmare. Joe’s life experiences and advocacy teach us that it is never weak to get help.
*Content warning, this episode contains sensitive content around the events of 9/11 and suicide.
S1E2: Cluster Nightmare
JC: Joe Coe
JM: Joe McKay
PM: Dr. Peter McAllister
JC – Content warning, this episode contains sensitive content around suicide.
JM – I felt at one time I was afraid to go to sleep. I wasn’t getting more than two hours sleep in a row and that would probably be the time it Freddy Krueger was. So it was more or less. Like I was living in a Freddy Krueger movie. For those three weeks where you know, when I laid my head and on the bed at night, I knew about an hour and a half to two hours later, Freddy Krueger would be sitting on my chest and sticking his knife right right in my eye.
JC – That visual of Freddy sends chills up my spine. I’ve always been a fan of horror movies. I remember being a kid and begging my older cousin to let me watch and then having nightmares for weeks (and if we are being honest years),
There’s something about Freddy and the Nightmare of Elm Street franchise as a whole that really hits that mark when talking about head pain. Too many of us in head pain continue to live in our personal nightmares feeling trapped and helpless in our own bodies and heads.
Hi, I’m Joe Coe, the host of Talking Head Pain, where we confront pain head on. In this episode we talk with a man who rewrote his personal horror movie script.
JM – I’m Joe McKay. I’m 53 years old and I am an avid full time advocate now, retired, FDNY firefighter. Now I’m a full time advocate.
JC – So as you know, we’re talking about head pain. When did you first start getting headaches and head pain?
JM – It was about six months after, after 911. Myself and obviously, the whole Fire Department, a lot of first responders and volunteers working on a pile. I was working in the firehouse and about one in the morning, and I had all of a sudden felt like someone had stabbed me in the eye with an ice pick.
Scared me, scared me to death ended up in the emergency room. And a few hours later, they sent me home with the diagnosis of unspecified migraine. So that was that was the beginning of it all.
JC – That could be scary, too. What was going through your head aside from the pain after the hospital visit?
JM – Ah, just a lot of confusion, I had never experienced anything that painful before, and to walk away from the hospital without really without any answers was a little unnerving.
It wasn’t wasn’t till probably almost two months later that I got a proper diagnosis. And I’m lucky that I got better that early and I attribute that to being in the New York area where there’s a lot of, you know, a lot of neurologists that would more likely come across a patient with this condition with with cluster.
JC – As Joe said he is lucky because it often takes people a much longer time to get a proper diagnosis. Getting the right diagnosis is important because it can help make sure those living with headpain get on a the right treatment. Cluster headache is not something that many may have heard of. So I asked Neurologist Dr Peter McAllister to explain it for us.
PM – So cluster headache is another primary headache disorder but very, very different from migraine. Cluster headache has been labelled about the most horrible pain on the planet, beating kidney stones and burn pain and cancer pain etc. So it’s sometimes referred to as the suicide headache for a reason distraught patients in terrible pain or don’t have access to care and treatment have taken their lives, which is devastating. So cluster is a short acting headache. It’s got a very circadian patterns such that a patient may wake up in a cluster at 2:07am. Every night, with the idea that a hot poker is being rammed into their eye, the pain is excruciating. One major difference is that when a migraine sufferer has her really bad pain, what she’d like to do is lay down very gently and quietly not have everyone touch her. It’s just the opposite with cluster, they are so in pain, that they pace, they walk around, they’re agitated, leaving banging their head against the wall. The other discerning feature is the autonomic changes. So what happens in the cluster which is a 15 minute to a few hour Pain Syndrome, they often get a drooping of the eye, tearing of the eye, nasal congestion, redness of the eye these are we call the autonomic features that roll with it, cluster is always side locked, meaning it’s 100% either right side or left side. and even general neurologists will sometimes miss it. The treatment overlaps with migraine, but it can be very different to diagnosis sometimes takes three to five years after onset of symptoms.
JC – Dr McAllister didn’t hold back explaining the intense symptoms that cluster headache patients experience. I can imagine people like Joe, who live cluster headaches are constantly dealing with people just thinking it’s just a ‘bad headache.’ I wonder if that impacts men getting treatment?
Being a guy that sure you are that reminded me did you get does anyone bust your chops about like, having cluster headache or needing to take time for yourself or to do different treatments?
JM – Yes. Yeah. busting chops is is I was in New York City fireman and firehouse. Chop busting is, is an art form in the firehouse and if they’re not busting your chops, then usually there’s something wrong so but Yeah, I did.
I got the nickname oxygen boy, and some other there was a few others, holiday headache, they would say cuz I would always you know, the headaches would always seem to come around when a holiday was coming, but there was there’s always a holiday around. If you look at the calendar, that is you know, Arbour the day would be one is Oh, yeah, all the day and your headaches back, you know, totally joking around, but they weren’t, you know, they were they were busting my chops a little bit about that, but that it’s all in good fun I you know, but they understood the pain because there were times when I would get in attack at work, you know, two or three in the morning. And they’d see me sitting up, you know, sucking oxygen down, you know, sitting on the back step of the of the fire engine or two in the morning. So they knew what was what it was about. Yeah, yeah, it was all it was all good, though. In the end. I was pretty lucky, though, to be honest with you to get to have access to that oxygen at work. City of New York graciously supplied it for me at work.
JC – Do you think that the joking and the chop busting is a way of people trying to understand something that they may not understand?
JM – It’s hard to tell, you know, who’s what, you know what their intention was? But I mean, I didn’t feel any hard feelings. You trust these guys, you trust these guys that you like when you go out the door, so it’s kind of a different kind of relationship.
JC – I know, you’re a big advocate. So you’re very open now with your story of cluster and headache and pain. Was there a time that as a man, you didn’t feel like you could be as open about what you were living with and struggling with?
JM – It was a little tough at first, and the stiff upper lip thing was kind of the mantra with a lot of people and you know, my family. So I always try to always try, it didn’t always work, but we try to keep that stiff upper lip. But when I’m having an attack, I don’t want anybody to see me because it’s not it’s not pretty. You know, in tears with the pain, it’s that bad. It’s embarrassing for me like I don’t want anybody to see me, it just brings up a lot of emotions when I’m in that position and I really don’t want anybody to see me like that. But yeah, I’ve kind of moved on past that I really I it doesn’t bother me anymore that you know at this point, I really don’t care. You know what anybody thinks about my manliness or I’m in pain you know, if I stabbed somebody in the eye with an ice pick anybody else that was standing there watching me having the pain and maybe they truly understand what it was like.
JC – I know that many people living with constant head pain look for anything that can help relieve symptoms. I asked Dr. McAllister his thoughts about two treatments that know generates a lot of discussion in the cluster headache community: “Magic Mushrooms and Marijuana”
PM – There is an emerging literature on what’s known as micro dosing. So psilocybin in which is the stuff of hallucinogenic mushrooms, when taken in non hallucinogenic doses, which is very interesting, because some patients would be afraid I don’t want to hallucinate I don’t want to have a trip. If you use a fairly small dose, such as 200 micrograms, and it’s not every day, during the cluster, it’s usually twice a week tends to decrease the number of attacks and sometimes eliminates or gets someone out of the cluster entirely. The beside being illegal in most states, so those silicides is now legal in the state of Oregon. It has no lethality. In other words, one cannot overdose from psilocybin or magic mushrooms. Marijuana, medical or otherwise has become incredibly popular, and many of my patients come in asking about that. What I tell them is sort of the pluses and minuses. There’s very, very little scientific literature to suggest good or bad, we just don’t have the data. That said, in my state, we are allowed to certify folks for medical marijuana. My experience with it has been mixed. Again like psilocybin there is no lethality of marijuana, one cannot overdose. So conceivably you can think of it as probably safer than many The pharmaceuticals we use on a day to day basis, the problem I found is that not everybody gets better with it. It’s a very mixed group. Some folks it increases anxiety or makes them lethargic.
JC – It is so important for people living with head pain to work their healthcare providers to find the right combination of treatments that work for them. Remember we are the experts in our experiences and we need to approach medical care as a partnership. Having advocates like Joe in our community make this easier for many of us.
First, I want to thank you as a New Yorker for what you did after 911. So it was something that really impacted not only the country, but you know, our area, as you know, deeply. So I know you do a tonne of work helping to raise awareness on how headache and cluster and different types of diseases came came about because of exposure to different things during 911. Can you talk a little bit about your advocacy and about the either the trauma from 911 that’s caused this, is it the chemicals?
JM – My advocacy journey started in 2015. I had just retired a few years before that. My brother Dan, who’s also a New York City, firefighter, he he had cancer from 911, him as well as another 30 something year old guy in my firehouse actually developed the same kind of cancer and there was quite a few other firemen and police officers and people that I knew that worked on a pile that had cancer or had passed, or were still battling. The effort to get the 911 bill extended was still going on. I had gotten a notification to that there were going to be a rally at seven world trade. And I just said, You know what, I’m going to go, I’m going to go down and you know, and be part of the rally I met. There, I made up a few firemen, a couple guys that I worked with. So we went we visited some congressmen and you know, the rest is history after that, the bill got passed temporarily another five year bill and the year after that I was up to two years after I went to my first cluster headache conference. There I met Dr. Bob Shapiro from the Alliance for headache disorders and he got me in there to advocate for for people with headache disorders. I said, Yeah, I can do that. I’ve done few, a few meetings. I’d love to jump in on that. So I started working with cluster busters for headache disorders to advocate headache on the hill, a once a year event in Washington, where we try to get our lawmakers to listen to us and get funding and change the laws to benefit people that are suffering from headache disorders. The problem is that science doesn’t really know exactly what causes it. I got them after working on the pile for six months. But yeah, as far as the chemicals go, and headaches that they know that there is a higher rate of migraine, and headache disorders, from people that were exposed to toxins from 911, and also from burn pit exposure. That’s something that we’re working on too, with the Alliance for headache disorders to get more, more attention on that and more research and hopefully, you know, some more help for people that are suffering.
JC – what would you tell to you know, guys right now that might not be at the point that you are, if they’re having head pain, and they’re banging their head against the wall or putting their head in the freezer, which is something I did early on during my migraines. What would you tell other guys.
JM – I would say there’s a lot of other people that have going through what you’re going through, you’re not alone. Seek help, seek help with not only through your doctors, but online and and in particular like it whether you’re a migraine or cluster headache, patient, there are seminars to go to. It’s okay to tell, you know, to tell people that you’re in pain, you know, that your pain is real, it’s okay to show that you’re in pain, you’re human, we’re all human. I understand how it crosses your mind when you know when you just want to end the pain that you actually think about ending your life but I have to stress this. There is help there is you know, there’s life that the headache is temporary and there’s so much more to live for after and you’re not alone. You’re not alone in this. And if you ever feel desperate, and I’ve come across people that do feel desperate reach out there’s plenty other people out there that would be willing to help.
I’ve met so many great people through the advocacy work. It emerged my life definitely, you know, not only from you know, relief with the from the pain but I just I made friends and connected with people. It’s priceless to sit and to talk to somebody that truly understands what you’re going through.
JC – As a reminder if your pain is causing you to think about harming yourself there is help. In the United States you can call the National Suicide Prevention Lifeline: 800-273-8255
It can be hard to share the extent of your pain with someone else, especially when as men, we are taught to not show others our pain.
If a former New York City Firefighter and September 11 first responder can ask for help, you can too. Joe’s personal and professional sacrifices, and advocacy remind us that there is always help. That we are not alone on this journey, and that it is not weak to get the care and support we deserve.
If you or someone you know needs more information about the different types of head pain, how to get diagnosed and how to manage, listen to our Talking Head Pain audio guides.
Danielle discusses the pressures of life with migraine in the age of social media, as well as difficulties of managing a career while living with this debilitating condition. Danielle makes the call for transparent, honest conversations with others and explains the value of forging connections within the migraine community.
S1E1: Migraine and Millennial Culture
JC- Joe Coe
DNF – Danielle Newport Fancher
PM – Dr Peter McAllister
DNF – I just remember laying on the floor of the bathroom in the airport, which is just so gross, just lying there on the floor unable to sit up and being so sad and frustrated with my situation, and the pain was just so strong that I couldn’t move, and I was like this is really a challenge when you’re just laying on the floor of the airport bathroom.
JC – Lying under the bright lights of the airport bathroom, I couldn’t think of many worse places to have a migraine attack, but they can come on at any moment. Hi, I’m Joe Coe, the host of Talking Head Pain, where we confront pain head on. Migraine has been a part of my life for 20 years, so I understand the far reaching effects of migraine and that it doesn’t discriminate.
In this episode we are looking into how migraine affects a group of people that I fall into, millennials.
DNF – My name is Danielle Newport Fancher, I am 33, and I live in New York and work in media.
JC – We’re talking about migraines today, do you remember when you first experienced a migraine attack. How old were you?
DNF – Yes. I actually have a very vivid memory of my first migraine. So I got my first one when I was 16, and I was driving home from school and I remember leaving the parking lot and seeing a little spot in one of my weyes, which I now know is aura, but by the time I got to like a main intersection, the aura had taken over my full field of vision, and I was sitting in the intersection and I couldn’t see the road ahead of me, and I just stopped, so I sat in my car and I remember having so much anxiety that there were other people from my high school around me in cars also leaving the school, but I couldn’t move and I felt like I had completely created a traffic jam, so up until that point I had no awareness of migraine, and I had no awareness of aura, and it was a really scary thing from me to go through that and have no idea what was happening.
JC – The first one is pretty frightening, I understand that. What do your migraines look like now?
DNF – So I have intractable migraine, it basically means that even though I’ve had chronic migraine for well over a decade, I had a migraine one day and it never stopped, it started October 2nd 2013, it was like any other day, any other migraine that I had, the next morning I woke up with a migraine, same migraine was there a week later, and now we’re on 7 and half years later I have the same migraine. I know it sounds wild to think of someone being in constant pain for that long, but there are so many so many people just like me who are experiencing pain day in and day out, and I just feel like I’m not as sharp as I want to be.
JC – As a young woman, do you feel like people don’t take your pain seriously?
DNF – Yes. I have had many experiences of feeling like my pain isn’t taken seriously, but instead of being frustrated with that, which I have obviously experienced many times, I have made it my mission to share my experience more. I’ve almost taken on the responsibility of if people don’t get it, maybe I need to be more clear about how I talk about it and I think there are small micro ways to do that, like in conversations when somebody says something and i’m like, oh they don’t understand, it’s clarifying and talking about it, and explaining, burt i also feel like on a more macro level here being able to write my articles, and share my memoir and talk and be on podcasts, and just being able to share my perspective on a broader scale also communicates that this is real this tough and there’s so many of us. So I think if we are all joining in as a community doing these things and communicating whether it’s in very small ways or large ways, at least we know we did our best to change our dialogue around migraine.
So It’s like my whole mission to hopefully make somewhat of a dent on changing someone’s perspective on it.
JC – I love the active approach that Danielle takes with her migraine journey, she doesn’t see herself as a victim to migraine at all, but instead a tool to educate and connect with others. I wanted to dig into this further, why, as people living with migraine, are we not understood? Why do we need people from out community, like Danielle writing books and educating others through social media? I spoke to Neurologist, Dr Peter McAllister to understand this.
PM – I think a lot of patients with migraine, particularly those who have not seen a headache specialist, don’t think of it as a medical condition like you would diabetes or asthma or Crohn’s disease. migraine is a medical condition. migraine is according to the World Health Organisation, the second leading cause of functional disability, missing days of work and family life and social life of any other medical condition. They didn’t ask for migraine just like one doesn’t ask for asthma or diabetes.
And the second thing is, and most migraine patients know this, on some level, there is a stigma associated with migraine. A lot of folks don’t really think migraine is legitimate among medical conditions. And why is that? Well, because we all have some background, you know, little headaches and we discussed that. Also, the word headache in the English language is pejorative, like my boss gives me a headache or writing this paper gave me a migraine or something like that. So we have a condition that has negative connotations in the lay press anyway, I sometimes wish that migraine were renamed to something fancy like Central Nervous processing disorder or something like that, and got away from the negative connotations and negative stigma. Migraineurs, people who suffer from migraine are more likely to call in sick to work and say I have a cold rather than say they have a migraine, because when you pull a bunch of bosses, they don’t think that migraine is a legitimate reason to call in sick. So that’s something that I wish we had a better handle on and we can begin to make changes.
JC – Very interesting take, I think we’ve all come across someone, or even ourselves, who describes someone or something as a headache, but never fully considered the ramifications of that for the migraine community, and I know we’ve all called in sick and said it was anything but migraine at least once in our lives, I guess it’s for the fear of what our bosses might think, or our colleagues, which leads me to my next question for Danielle.
So how do you manage migraine and your career?
DNF – As I mentioned I work in media, in New York, and I do work a lot and I work very hard, but it’s a challenge, being in constant pain, and being ready to go to build presentations, to present to clients and to always be on in that way is a huge challenge.
I feel like my migraine pain comes in bouts, so some days if I am no in as much pain, I focus so much harder and get as much done as possible, if that means working all night, I’ll work all night, if on a Saturday I’m feeling ok, I’ll get my work done, but then it’s really to me figuring out how I can get everything done and be ready to go without pushing myself too hard to trigger another migraine, and if I’m in too much pain Im not going to get too much done. So it’s figuring out that balance between everything.
JC – And how open are you with your employer? How have you navigated talking about migraine with your employer?
DNF – If I look about to about ten years ago in my career, I didn’t tell anyone about my migraine, I was nervous to bring it up. I didn’t want to be seen as less capable, and so I kept it a secret for many years. Obviously now that I’ve done so much advocacy and written a memoir and many many articles about migraine, it’s kind of out there. But I’m pretty upfront about it with my colleagues, at this stage of my career, I’ve proven my value and that I can still maintain my workload and my job, so I think a part of it is that I do feel confident that I can have chronic pain and still build my career and do a good job. To me it’s just about transparency, if there’s a morning that I can’t work, I’ll email that I can’t do it. I’m just very honest about it with them, and I’m so lucky to have a team around me that supports me and is very understanding of it. But also, I work very hard and try to balance it all out.
JC – Definitely, I can relate to that as well. A little less serious, pro or con avocado toast?
DNF – Pro. Very millennial of course
JC – In millennial culture, a lot of it is about how we portray success, what we’re showing on instagram. Was it hard seeing peers achieving goals on a different timeline, how did you push yourself or justify that you’re on your own timeline.
DNF – It’s so hard to be in pain and feeling this sense like I’m falling behind and I think social media also paints a picture for anyone who might not be in pain that you might be falling behind of life stages and careers, because it paints such a beautiful picture of everyone’s life situation. So I think as a millennial, yeah it’s definitely tough, I know in my millennial circles, we feel very driven, a lot of pressure to be the best version of ourselves, whether that’s in our careers or in our lives, and that’s a lot of pressure to put on ourselves. And I really do find that when you’re in pain and you feel stunted in some way, whether it’s your career growth or being able to date, it’s tough. I think i’ve always really tried to keep as much going as I can, so I think there were phases where it was impossible to go on dates and keep the career going at the same level, and fulfill my whole social life while in pain I think there were different moments in time where I had to choose what’s the priority for that point in time, and I dont think thats just for migraine patients, I think that’s true for everyone. Being a millennial in this high pressure world it’s tough when you feel like migraine is getting in the way of your goals. If anything I really do feel like, despite being in constant pain for almost 8 years now, I have managed to keep almost everything going.
JC – It is hard to keep it all going, and thinking ‘is this going to be how I live for the rest of my life?’ Constantly managing migraine with everything else in my life, and although we might not have migraine totally under control, I find it reassuring knowing that there are innovative treatments specifically for migraine slowly making their way to shelves.
DNF – There have been so many years that I have taken medication for blood pressure, seizure medication, for all these different types of illness because results show that they help patients with migraine, and it was always such a funny thing for me, like where are all the migraine medications? Isn’t just such a fascinating thing that for all these years we were trying all these medications for other illnesses. But finally I really do feel like things are changing and we are starting to see more medication for people with migraine. I really think it is such a hopeful feeling, I feel like things have changed. Not only in having more options for us, but there’s more dialogue around migraine, we’re talking about it more, just getting more visibility on this illness and more funding just such an important thing, and I really do have this sense of hope for all of us that there are new things to try and we can hopefully have not only more awareness around our illness, but more relief.
JC – That sense of hope is really crucial for the migraine community, but I do think there are positives to migraine, so for you, what do you think your migraine superpower would be?
DNF – I truly believe that I can handle anything, that would be the migraine superpower that I have. It’s so funny that after all of this I think I can tackle anything. If I feel behind on things or If I do have a day where I can’t;t get things done because of my pain, somehow I will always be able to get it all done. There’s something about having the confidence that I can handle it, whatever it is. I’ve been able to get my career back on track, I feel really strongly about it, I’ve got an amazing relationship, I feel great about my social circles, like the friends who understand are the best, and I really think that it is possible, with time to keep everything going and reach all of those goals. Sometimes I need to take a bit of time and recalibrate a little bit and take breaks, or prioritise but I hope I can be an example that migraine isn’t completely holding us back.
JC – Someone needs to hear this, what tips or advice would you give to a millennial that’s living with migraine that might not have gotten to the point that you’re at.
DNF – It’s so hard to be in pain and feeling this sense like I’m falling behind and I think social media also paints a picture for anyone who might not be in pain that you might be falling behind of life stages and careers, because it paints such a beautiful picture of everyone’s life situation. So I think as a millennial, yeah it’s definitely tough, I know in my millennial circles, we feel very driven, a lot of pressure to be the best version of ourselves, whether that’s in our careers or in our lives, and that’s a lot of pressure to put on ourselves, and I really do find that when you’re in pain and you feel stunted in some way, whether it’s your career growth or being able to date, it’s tough. I think i’ve always really tried to keep as much going as I can, so I think there were phases where it was impossible to go on dates and keep the career going at the same level, and fulfill my whole social life while in pain I think there were different moments in time where I had to choose what’s the priority for that point in time, and I dont think thats just for migraine patients, I think that’s true for everyone. Being a millennial in this high pressure world it’s tough when you feel like migraine is getting in the way of your goals. If anything I really do feel like, despite being in constant pain for almost 8 years now, I have kept everything going.
JC – Danielle, I know how hard it is to live with migraine, the constant threat of an attack, thinking about how our careers might be impacted, I for one am grateful that there are new drugs and treatments that are coming to the market, some of the are already out on the market, I just hope that people like us don’t have to jump through fiery hoops to get it.
DNF – There have been so many years that I have taken medication for blood pressure, seizure medication, for all these different types of illness because results show that they help patients with migraine, and it was always such a funny thing for me, like where are all the migraine medications? Isn’t just such a fascinating thing that for all these years we were trying all these medications for other illnesses. But finally I really do feel like things are changing and we are starting to see more medication for people with migraine. I really think it is such a hopeful feeling, I feel like things have changed. Not only in having more options for us, but there’s more dialogue around migraine, we’re talking about it more, just getting more visibility on this illness and more funding just such an important thing, and I really do have this sense of hope for all of us that there are new things to try and we can hopefully have not only more awareness around our illness, but more relief.
JC – That sense of hope is really crucial for the migraine community, what do you think your migraine superpower would be?
DNF – I truly believe that I can handle anything, that would be the migraine superpower that I have. It’s so funny that after all of this I think I can tackle anything. If I feel behind on things or If I do have a day where I can’t;t get things done because of my pain, somehow I will always be able to get it all done. There’s something about having the confidence that I can handle it, whatever it is. I’ve been able to get my career back on track, I feel really strongly about it, I’ve got an amazing relationship, I feel great about my social circles, like the friends who understand are the best, and I really think that it is possible, with time to keep everything going and reach all of those goals. Sometimes I need to take a bit of time and recalibrate a little bit and take breaks, or prioritise but I hope I can be an example that migraine isn’t completely holding us back.
JC – Someone needs to hear this, what tips or advice would you give to a millennial that’s living with migraine that might not have gotten to the point that you’re at.
DNF – My number one piece of advice, and this has been throughout my migraine journey, is to connect with other people in pain, bottom line, this has been the one thing that has really really helped me. I think being in pain is so hard, and feeling like you’re the only one going through it, is much much harder. But knowing there are other people in your circles that get it, that you can call at any time, or get on social media and send them a message, like just knowing that someone’s out there who’s like I’m feeling it too. Today’s a hard pain day, like that is a game changer I feel like that alone has changed my whole journey and why I’ve started talking about it more, and why I’ve built this community, it’s just a game changer.
JC – It’s difficult opening up about migraine to friends and colleagues, especially when you’re a part of a generation that has been told that we’re whiners, complainers, or need participation trophies. However, Danielle has made it her mission to advocate and has helped countless people living with migraine to better understand the complexities of this disease.
You can find her work on Twitter and Instagram by following Migraine writer. Do you need some quick information about migraine, or have someone in your life that doesn’t real understand this disease? Our free patient audio guides offer valuable information and insights from leading experts that can help you become more informed.
Migraine Audio Guides
Need some quick information about migraine? Have someone in your life that doesn’t really understand this disease?
Our free Talking Head Pain Patient Audio Guides offer valuable information and insights from leading experts that will help make you more informed.
Check them out below and be sure to subscribe for access to future audio guides.
Get advice and information on how to navigate the complexities of the work environment with a migraine condition, as well as supporting others with migraine in the workplace.
S1E1: Migraine and Millennial Culture
Narrator 00:04
Welcome to this audio guide for Talking Head Pain, produced by the Global Healthy Living Foundation. Whether you or someone you care about have migraine, or think you or they might have migraine, these audio guides are designed to help you make sense of the headache and other symptoms. Accurate information will help you work together with your healthcare professionals to hopefully have fewer and less severe episodes. Please remember that headache of any kind is a medical issue, and always talk to your healthcare team if you have a headache that bothers or worries you. In this audio guide, we’ll discuss what migraine is and what makes it more than just a headache. In every audio guide, we provide information that has been checked by medical professionals specializing in the treatment of migraine and other headaches, and people living with migraine who understand what it is like. Suggestions for care are based on guidelines from the American Academy of Neurology and the American Headache Society. Most people get a headache at least once in their lives, whether from a viral infection, allergies, a bump on the head, or a stressful day. Many people however, have headache attacks much more frequently, from a few times a year to two or three times a month, three or four times a week, or even every day. These more frequent and recurring headaches are often episodes of migraine, a medical condition that affects one out of every eight people in the United States. Not every headache that happens repeatedly results from migraine and other headache conditions exist. Although these are much less common, you can find out more about that in our diagnosis audio guide episode. What is most important to remember is that getting headaches regularly is not something to brush off or let others brush off for you. Repeat headaches from any causes; migraine, injury, or anything else or a medical problem that can be treated and anyone with regular headaches of any kind deserve relief. So who are the one out of every eight people with migraine and could one of them be you? Although migraine is more common in women, it is just as unpleasant and painful for the one out of every 16 men living with migraine. Migraine can occur at any age and is most common between the ages of 18 and 44. Anyone can develop migraine, but it is more common in people who have family members with migraine, and in people with sleep disorders, epilepsy, depression, or anxiety. When you talk to your healthcare team about diagnosing your headache condition, it is important to share information about you or other people in your family who have any of these conditions. We’ll cover that in more detail in audio guide two. How do I know if a headache is a migraine? The headache of a migraine episode is often described as a throbbing pain on one side of the head, but it can occur on both sides. Sometimes migraine attacks don’t include a headache and are just as awful as the ones that do. This is because migraine episodes are more than the headache. By definition, other symptoms occur during a migraine attack. Those other symptoms include changes in vision and being very sensitive to light, sound, and smell, or having nausea and vomiting. Many people also have fatigue, sleepiness, and mood changes or feel lightheaded, weak or numb. Difficulty thinking or concentrating, or brain fog, may also happen. Movement or physical activity usually makes the pain worse. Often, a migraine makes people, especially children and teens, seek out a quiet dark space where they can be as still as possible. Some people find sleep helpful and others find the pain and other symptoms keep them from sleeping. It is important to recognize that not everyone has the same symptoms as other people and even though most people with migraine can describe their typical attack, not every migraine episode, even in the same person is always the same. How long do migraine attacks last? Some people notice vague symptoms of fatigue, irritability, or brain fog before an attack begins. This is the prodrome. A stiff neck, nausea, and changes in appetite are also noticed by some people. Whether a person has a prodromal period or not, they may also have a noticeable pattern of symptoms, called aura, a few minutes to an hour before the painful headache and other symptoms. Usually this is changes in vision with zigzag wavy lines and halos, distorting shapes and images, changes to other senses or difficulty speaking or moving. About one out of every three people with migraine has aura with some or all migraine attacks, but most people never experience aura and only some experienced prodrome. The attack phase may last anywhere from two hours to three days and includes the headache of moderate to severe pain, sensitivity to sound, light, or smell, and nausea or vomiting. Brain fog and severe fatigue are common. This is when many want to escape to a quiet dark place where they can be still. After the attack, there might be a postdrome, during which people feel groggy or just not quite right for a while. They may have remaining sensitivity, fatigue, mood changes, and brain fog. So, what causes all this? Current research suggests that it is mostly genetic with environmental and lifestyle factors affecting severity and frequency. The biologic response of a migraine attack starts with overactivity in a part of the brain called the brainstem, which connects the brain to the spinal cord. During the overactivity, certain substances are released, and nerves and blood vessels react in ways that cause the sensory changes and pain of an attack. Some of the newest migraine medications affect those released substances directly. We discuss this more in guides three and four. You may also have heard about migraine triggers. That having a glass of red wine or eating chocolate make migraine attacks happen. The latest research shows however, that even if certain foods, drinks and environments make a migraine attack more likely, these are not the actual cause of the attack. It is also become clear that what triggers, or makes an attack more likely, for one person may not be a trigger for another person. In other words, your triggers are not necessarily my triggers. Also, what seems like a trigger for a migraine attack like craving and then eating chocolate or other sugary foods may actually have been triggered by the migraine attack and not the other way around. Migraine can make you more sensitive to things like spicy foods, so you notice the spiciness more if a migraine is coming on than you would otherwise. Unfortunately, this can lead people to blame themselves thinking, “I should not have eaten drunk or done fill in the blank.” What is useful about triggers is that if you do identify something that often happens right before an attack, or makes an attack worse, you can try to find ways to avoid it. To identify your triggers, keeping track of your migraine attacks with a headache diary can be very helpful. As we’ll discuss in audio guide two, this can also help your healthcare team find a correct diagnosis for your headache and guide treatment options for you. Keeping a migraine diary has become easier because there are apps for that. Of course, you can also use a simple notebook and pen. To keep a headache diary, the essential items to record are: The date and time it started and ended. For each day it lasted, how did you function? Many find the stoplight approach helpful. A red light for stopped functioning, a yellow light for slowed or decreased functioning, a green light for your normal functioning. It is also essential to record where the pain was, what other symptoms you had, what medicine you took and how it worked, whether you were taking any other medications. It can also be helpful to record how well you slept the night before, whether the stress you’ve been experiencing was mild, moderate or high, whether you had been drinking water staying hydrated, whether you had been eating regular meals. If you ate or drink something known to trigger migraines for some; red wine, chocolate, aged cheeses, or highly processed foods. What activities you were doing before the attack. Such as a longer than usual work day, a late night out with friends, vigorous exercise or missing regular exercise, and any other change in your usual routine. Environmental factors like bright lights, screen time, changes in the weather, noise levels, or exposure to chemicals like cleaning solutions or drying paint. For people who menstruate, where you were in your cycle and anything else that you frequently notice during an attack. Understanding any pattern to your migraine can help you avoid the things you have control over and lead to better health overall. However, it is rare that lifestyle changes alone eliminate migraine attacks. Remember that migraine is a biologic disease, not about what you do or don’t, but about how your brain chemistry is working. Now you know the difference between headache and migraine. And if you feel as though you may suffer from migraine, you can find information in our migraine diagnosis audio guide. If you have already been diagnosed and are wanting more treatment options, listen to our audio guide on migraine medication options for migraine. We also discuss lifestyle changes and medication alternatives in nonmedical migraine therapies audio guide and the common challenges of migraine on our managing migraine in the workplace audio guide. For more medical information and advice about your own migraine treatment, speak to your doctor.
The first step to proper treatment is getting a diagnosis. In this audio guide, we explore the importance of a proper diagnosis, how to get diagnosed, the causes and triggers of headache, and barriers to health care.
S1E7: Getting A Migraine Diagnosis Audio Guide
Narrator 00:10
Welcome to this audio guide for Talking Head Pain, produced by the Global Healthy Living Foundation. Whether you or someone you care about have migraine, or think you or they might have migraine, these audio guides are designed to help you make sense of the headache and other symptoms. Accurate information will help you work together with your healthcare professionals to hopefully have fewer and less severe headache episodes. Please remember that headache of any kind is a medical issue. And always talk to your healthcare team if you have a headache that bothers or worries you. In this audio guide, we discuss getting headache disorders diagnosed so they can be properly treated. In every audio guide, we provide information checked by medical professionals specializing in the treatment of migraine and other headaches and other people who have migraine and understand what it is like to live with recurring headaches. Suggestions for care are based on guidelines from the American Academy of Neurology and the American Headache Society. Almost everyone will have a headache a few times in their lives. Often these are symptoms of another illness. But when headaches keep happening in the absence of other illness, it may be a headache disorder. Getting headaches regularly is not something to brush off or let others brush off for you. Repeat headaches from any causes; migraine, injury, or anything else, are a medical problem that can be treated and anyone with regular headaches of any kind deserves relief. Why should you get a diagnosis? Getting a specific diagnosis for whatever is causing repeat headaches is an opportunity to find the best treatments for you. Different headache disorders respond to different medications, and each person responds better to some medications than others. It is also important to know that misdiagnosis of headache disorders is not uncommon. Many people with migraine, for example, are told they are having headaches from allergies or sinus conditions. If your physician is not paying attention to the more subtle signs of specific headache disorders, like eye tearing, neck and shoulder pain, scalp tingling, light sensitivity, or nausea, they may be mistaking one headache disorder for another or think the headache is caused by an unrelated problem. That’s a missed opportunity to get better, more effective treatment and to stop using and paying for treatments that are not working for you. Let’s talk about access to healthcare. Before talking about getting your headache disorder diagnosed, we want to acknowledge that for many people, this is limited by poor access to healthcare, or poor treatment within the healthcare system. In the United States, many people do not have insurance or cannot afford to see a doctor. If this is the case for you, we hope that these audio guides will provide at least some useful information that you can still use to care for yourself, because you matter. We also recognize that structural racism and discrimination occur within the healthcare system. And this can make it more difficult for black people and members of other marginalized groups to make use of the information we are sharing. We know studies have shown black people are less likely to receive appropriate diagnosis or treatment for migraine headaches in emergency rooms, and are also more likely to be perceived as the so called difficult to patient if they self advocate for proper care. Although no profession or individual is immune from bias, there are healthcare providers working to change this. We encourage you to continue educating and advocating for yourself and others. Finding a physician who welcomes this may be the first step on your journey to improving your headache condition. Many people with chronic conditions of any kind also find networking with others who have the same health condition and advocacy can help fight stigma and isolation. You may feel you do not have a lot of time or energy to do this. And that is okay. If you do want to explore this further, we have resources available at ghlf.org. If you can, how do you get started? If you have a regular healthcare provider, talking to them about your headache episodes is a great first step. Let them know as much as you can about your headache attacks. In audio guide one we talked about keeping a migraine diary that includes; when and where pain occurs, what if any other symptoms come with before, during and after, how long your symptoms last, if symptoms affect your day to day activities, what medications you have tried and whether those help, any other medications you take, and any other consistent patterns you see. Sharing your migraine diary with a healthcare professional can give them a very clear pattern that they may be able to connect to specific headache disorders. Together, you and your healthcare team may be able to identify a likely cause of your headache episodes and treatment options to try. You may also decide to consult a neurologist or headache specialist. Neurologists specialize in brain and nerve conditions including migraine and headaches. Headache specialists have completed specialized training for diagnosing and treating headache disorders. If you live in an area where neurologists or headache specialists are not available, you may be able to have a telemedicine appointment with one or may be referred to a pain management specialist. The American Migraine Foundation and the National Headache Foundation offer lists of healthcare providers who are experienced in treating migraine and other headache conditions. You can visit their websites americanmigrainefoundation.org or headaches.org. How are headache disorders diagnosed? At this time, there is no blood test, X-ray, or MRI study or procedure, such as taking a person’s blood pressure, that can objectively determine if a person has a headache disorder or what kind of headache disorder they may have. Headache disorders are diagnosed clinically, by recognizing patterns common to specific disorders and by making sure something that can be tested objectively is not the cause. Your healthcare provider, whether they are your primary care doctor, a community healthcare person, a neurologist, or a headache specialist will first want to know more about your headache episodes. As we’ve mentioned, having a headache diary to share can make this process easier, and your healthcare professional may still want to ask more questions or for more details. The first step in diagnosis is understanding your unique pattern of headaches. How does the pain feel to you? Is it a dull ache that worsens into throbbing pain or a sensation of being stabbed? How intense or difficult to tolerate is your pain, often on a 0 to 10 pain scale? Does the pain worsen with movement? Where on your head does pain occur? Behind one or both eyes, out of the front or back of the head, with neck and shoulder pain? Do other symptoms come right before, during, or after the headache? For example, changes in vision or other senses? Nausea or vomiting? Sensitivity to lights, sounds, or smells? Dizziness or feeling weak or numb? Difficulty thinking or speech changes? Balance issues? How long do your symptoms last from first signs until being able to return to normal activities? How often do you have headache episodes? Every few months, weeks, or days? How many days each week or month do you have no pain or discomfort? Do your symptoms interfere with sleep, work, household chores, exercise, leisure activities? Do your symptoms only occur in some environments, such as at your worksite and not others? Your doctor may also ask whether you’ve noticed any stressors, foods, drinks, activities, weather conditions, odors, or any other factors that seem to set off your attacks. Both to recognize patterns in your headache episodes and to determine other illnesses are not the cause, it is important to discuss you and your family’s medical history. This includes high blood pressure, heart conditions or strokes, epilepsy, depression, anxiety or panic attacks, asthma, anemia or diabetes, chronic pain, fibromyalgia, neck and shoulder pain, surgeries, injuries and other conditions. It is also important to discuss prescription and over the counter medications you use, as well as other substances including alcohol, cigarettes, and caffeinated beverages like tea, coffee, sodas, or energy drinks. All of these can cause or worsen headaches and associated symptoms. To make sure another condition is not the cause of your headaches, it is likely that your doctor will want to do a blood test to rule out thyroid problems, diabetes, infections, or exposure to toxins. Depending on your age or overall health. A CT scan or MRI on your head and neck may be ordered to check for any problems with blood vessels, or the presence of any growths or tumors, although these are rarely found. Usually imaging studies are done only if your headaches begin after age 40 or if your headache pattern has changed. Although uncommon, if you have other signs of infection or nervous system, your doctor may also want to take a sample of your spinal fluid to evaluate. Is it migraine? Migraine is by far the most common cause of recurring headaches. If other problems have been ruled out and you have had five or more headaches that were at least four hours long and came with nausea or vomiting or sensitivity to light or sound, migraine may be diagnosed. The good news is that there are more specific, effective, and safe medications to treat migraine than ever before. You can learn more about these in our migraine medication options audio guide. If you already use medication, or are not wanting to try that route just yet, you can learn more in our non-medical therapies audio guide. We also discuss more practices of everyday life in our managing migraine in the workplace audio guide. If you’re still unsure about the difference between migraine and headache, you can find out more about the differences in our what is migraine audio guide. For medical information and advice about your own migraine treatment, speak to your doctor.
Learn more on the differences between headache disorders and common headaches, as well as acute and preventative migraine treatment options.
S1E8: Medical Treatment for Migraine and Headache Audio Guide
Narrator 00:11
Welcome to this audio guide for Talking Head Pain, produced by the Global Healthy Living Foundation. Whether someone you care about or you have migraine, or think you or they might have migraine, these audio guides are designed to help you make sense of the headache and other symptoms. Accurate information will help you work together with your healthcare professionals to hopefully have fewer and less severe headache episodes. Please remember that headache of any kind is a medical issue. And always talk to your healthcare team if you have a headache that bothers or worries you. In this audio guide, we go over medication options. In every audio guide, we provide information checked by medical professionals specializing in the treatment of migraine and other headaches and other people who have migraine and understand what it is like to live with recurring headaches. Suggestions for care are based on guidelines from the American Academy of Neurology and the American Headache Society. Almost everyone will have a headache a few times in their lives that may simply be symptoms of another illness. Headache disorders, repeat headaches in the absence of other illness, are something different and not something to brush off. Repeat headaches from any causes; migraine, injury, or anything else are a medical problem that can be treated. And anyone with regular headaches of any kind deserves relief. For the most common headache disorder, migraine, there are more effective and safe medications than ever before. Many of these may be helpful for other headache disorders, but in this guide we focus specifically on migraine treatment. Remember that not every medication will work for every person, and you may need to try different treatments, or combinations of treatments, to see what works for you. Lifestyle changes such as healthy sleep, exercise, and eating well may also be needed. And we cover those in guide four. If you have other conditions or are taking any other medication, herbal or vitamin supplements, or use cigarettes, alcohol or other drugs, it is essential to include that in a conversation with your healthcare provider about what medication is appropriate for you. If you think you may be pregnant or plan to become pregnant, you should let your healthcare provider know right away because some medications that treat migraine may not be safe to use. Most treatments for migraine come in one of two basic flavors, acute and preventative. One of the newest migraine medications -Nurtec- is unique in providing both acute relief of an attack and reducing frequency of attacks. We’ll come back to that option in a moment. There is a non-medication option called neurostimulation that can be useful in both acute and preventative treatment. And we’ll come back to that option too. Acute treatments are taken during a migraine attack to reduce the length and severity of an attack. Acute treatments taken by mouth may not work that well for people with nausea and vomiting that can affect how well or if a medicine is absorbed. There are, however, acute treatments available as nasal spray, injection or suppository. Preventative treatments are used to make attacks happen less often and these may be pills, nasal sprays, injections or infusions. In 2021, there are also two medications in development that may work for acute and preventative treatment. Over the counter treatments for acute migraine treatment include anti-inflammatories and analgesics like aspirin, ibuprofen, naproxen sodium, indomethacin, and acetaminophen. These are more commonly known by brand names Advil, Aleve, Motrin, Indocin, and Tylenol. All may be helpful for milder attacks, but are usually not effective for moderate to severe migraine episodes. Combinations of these drugs are also available, and these may be somewhat more effective. Some combinations include caffeine, and although that may make them more effective, it also has a higher risk for what is called rebound headache -or medication adaptation headache- a condition in which taking a certain headache medication more than three or four times per week increases the frequency of attacks. This is also called medication overuse headache. If you find you’re taking medicine for your headache attacks more than three times a week, it is a good idea to consider preventative treatment. The most commonly prescribed acute migraine treatments are the triptans. These medications block serotonin, one of several chemical signals released by nerves during a migraine attack. Triptans also affect blood vessels and nerves in other ways that helps to reduce the pain and other symptoms of migraine attacks. Triptans are available as pills, nasal sprays or injections and are more effective when used early in a migraine attack. Injected triptans may cause a reaction at the site where the needle enters. Other side effects may include a dizziness, drowsiness, muscle weakness or nausea. Because triptans affect blood vessels and blood flow, they are not recommended for use in people with heart conditions, diabetes, high blood pressure, high cholesterol, obesity, and other conditions or for people who smoke. The newest acute migraine prescription treatments, for which there are no generics yet, are more targeted to migraine. Because these are still brand name treatments, they can be difficult to access and expensive. For reimbursement to be authorized, a person may have to show they have tried two or three other treatments without success or cannot take anything else for safety reasons. The newest acute treatments ubrogepant, branded as Ubrelvy; and lasmiditan branded as Reyvow. Ubrelvy is an a new class of drugs that block activity of calcitonin gene-related peptide, or CGRP, which is also released during migraine attack. Ubrelvy is taken by mouth and may cause nausea and sleepiness. So far, Ubrelvy seems to be safe in people with heart conditions or risk factors for heart conditions. Ubrelvy may interact with other medications, so it is important to discuss all your medicines with your doctor before starting to use it. Medication adaptation headache has not occurred in people using Ubrelvy so far. Reyvow effects serotonin without affecting blood vessels, so it can be used by people who cannot use triptans. However, Reyvow, which is taken by mouth, has other serious side effects including dizziness, fatigue, sedation, nausea and vomiting, muscle weakness, and a small potential for addiction. Reyvow should not be taken with alcohol or other drugs that are sedating and can also cause driving impairment so should not be used within eight hours of driving. There is a risk of medication adaptation headache with Reyvow. Rimegepant, branded as Nurtec, is also a CGRP inhibitor that can be taken when you’re having a migraine attack to reduce the severity and length of the attack. As a new brand name treatment, Nurtech may still be difficult to obtain depending on your insurance coverage. Nurtec is a small tablet that dissolves in your mouth. The most common side effect has been nausea, but rarely people may have a rash or shortness of breath. If shortness of breath or rash occur, you should stop taking Nurtech and contact your doctor. Nurtech may also interact with other medications. So it is again important to talk with your doctor about all medicines you take before starting to use Nurtech. People who have liver conditions should not use Nurtech. Medication adaptation headache has not been seen in people using Nurtech. In fact, for people with up to eight migraine attacks per month, taking Nurtech every other day is safe and can reduce how often attacks occur. We’ll come back to that when we talk about preventative treatments. For people who cannot take or access triptans, gepants, or lasmiditan other prescription treatments are available. These includes stronger anti-inflammatory medications like prednisone or dexamethasone. These steroid medications however, should only be used for a short time because of serious side effects that come with long term use. A combination of acetaminophen, isometheptene, and dichloralphenazone -more simply called by its brand name Midrin- may be effective but also should not be used by people with heart disease or heart disease risk factors. Ergotamine plus caffeine is available as a pill but has the same issues as over the counter medications with caffeine. Dihydroergotamine, branded as D.H.E. 45, or Migranal, is available in nasal spray or injection and may be useful when migraine is long lasting or very frequent. Neither ergotamine nor dihydroergotamine are recommended in people with heart disease risk factors. A new delivery method for dihydroergotamine, branded as Trudhesa, was approved in September 2021 for acute treatment of migraine attacks. This is a nasal spray delivered to the upper nasal category with a special device. As with all forms of dihydroergotamine, Trudhesa is not recommended for people with heart disease risk factors. Runny nose, nausea, changes in taste, dizziness, vomiting, sore throat, sleepiness, and diarrhea are unusual side effects that may occur. Medication adaptation headache is a risk with Trudhesa and it should not be used more than three times per week. Some antinausea medications can be effective for migraine, even if you do not experience nausea and may be even more helpful if you do. Anesthetics such as lidocaine nasal spray have very short lasting effects, but may be used while waiting for other medications to take effect. Opioid analgesics, such as codeine, are rarely used for acute migraine treatment when nothing else is effective or safe. Opioids carry a strong risk for dependence and addiction with strong side effects like constipation, drowsiness, and nausea. If you have 15 or more days a month with headache pain, your migraine is considered chronic and preventative treatment may make your attacks less frequent. If you have 0 to 14 days with headache each month, your migraine is considered episodic. People with episodic migraine who have attacks on a weekly basis are also very likely to benefit from preventative treatment, although unfortunately, they often do not receive it. The newest preventative treatments for migraine are also the first developed specifically for migraine. Nurtec, as mentioned above, reduces migraine frequency when it is taken every other day. Another CGRP inhibitor that can be taken by mouth for preventative treatment, to reduce how often attacks occur, is atogepant, branded as Qulipta. Side effects seen with Qulipta include nausea, constipation, and fatigue. Both Nurtec and Qulipta are approved for preventative treatment only for episodic migraine, people who have fewer than 15 migraine attacks per month. Both Nurtec and Qulipta are safe and people with risks for heart disease. Monoclonal antibodies that inhibit activity of CGRP including erenumab, branded as Aimovig; eptinezumab, branded as Vyepti; fremanezumab, branded as Ajovy; and galcanezumab, branded as Emgality can be used for prevention in anyone who needs preventative migraine treatment. Three of these, Aimovig, Ajovy, and Emgality, are injections you give yourself at home once a month, or once every three months. Vyepti is an infusion you receive in a two hour outpatient visit to a health care provider once every three months. All are considered safe for people with heart disease or heart disease risk factors. Side effects include soreness at the injection or infusion site, rash, and constipation. High blood pressure and severe constipation have been seen after treatment with Aimovig. All the new drugs developed to prevent migraine attacks by inhibiting CGRP including the two taken by mouth (Nurtec and Qulipta), the three taken as self injections (Aimovig, Ajovy, and Emgality), and the one given as an infusion (Vyepti) are brand name nongeneric drugs that can be difficult to to access. Several other prescription treatments developed for other medical conditions have been found to also be useful in reducing the frequency of migraine attacks. Botulinum toxin A, or Botox, well known for its cosmetic effects, prevents migraine. Four to six injections are given in four to six areas of the head and 16 to 13 injections every three months. It is essential to have a well trained headache or pain specialist give the injections. Improperly injected botulinum toxin can spread away from where it is needed and cause complications. Often, two or three injections cycles over six to nine months are needed for botulinum toxin to reach its full effect. Side effects include injection site reactions. Anesthetic nerve blocks are the injection of anesthesia, sometimes with anti-inflammatory drugs, around a nerve involved in the migraine process. Nerve blocks work well to provide pain relief to specific areas and reduce or eliminate migraine for people who have not had relief from other treatments. These should be given only by neurologists or anesthesiologists specializing in headache or pain treatment. Improper injection of anesthesia can result in permanent damage to a nerve. Many antidepressants and antiseizure medications affect some of the substances involved in the migraine process also prevent migraine. For people who have depression and migraine or epilepsy and migraine, these may be excellent choices. Drugs that treat heart disease or blood pressure problems, such as beta blockers. angiotensin converting enzyme inhibitors, and angiotensin receptor blockers, have also been found to prevent migraine attacks. For those with heart disease or heart disease risk factors. The pros and cons of these drugs should be weighed carefully for people who menstruate and have migraine attack frequency timed with their cycle, birth control pills or hormone replacement therapy is sometimes considered as a way of making migraine less frequent. This is advised against for people who have migraine with aura or who are in the period of and around menopause, when stroke risk is higher because these treatments increase stroke risk. All these drugs have their own side effects and a drug that works well for one person may be entirely unhelpful for another. Shared decision making with your healthcare team will allow you to make well informed choices and be prepared to change those decisions if necessary. Always ask, “Why do you think this treatment will make me feel better? How does this treatment work to improve my symptoms? What side effects should I be aware of or worried about? How soon can I expect it to feel relief of my symptoms?” Last let’s talks about neuromodulation -devices that use electric pulses- for acute and preventative migraine treatment. An advantage of this non-drug option is that there is no risk of medication adaptation headache. A disadvantage is that these devices can be expensive and may be difficult to have reimbursed by insurance companies. The Cefaly device is available over the counter and is worn on the forehead for 60 minutes during a migraine attack. For preventative treatment, the device is used for 20 minutes every day. The prescription Nerivio device delivers remote electrical stimulation (REN) device to the upper arm, typically for 45 minutes of stimulation during an attack. This is the only device approved only for acute treatment and is approved for people aged 12 years and up. The prescription gammaCore Sapphire device is held at a specific point on the neck for two pulses two minutes long as soon as an attack begins, and can be repeated twice over two and a half hours if needed. For prevention, it is used three times a day every day. The STMS mini device is held to the back of the neck to deliver three pulses of magnetic stimulation, which can be repeated every 15 minutes for up to one hour. For prevention, two pulses are used in the morning and night every day. The company that produces STMS mini, eNeura, filed for bankruptcy in December 2020, however, so it is unclear how long the device will be available. Side effects are rare and include tingling, warmth, redness, itching, muscle spasms, and mild discomfort where treatment is performed. With the STMS mini device, brief lightheadedness, dizziness, ringing in ears and nausea also occurred. If you have implanted medical devices such as pacemakers, cochlear implants, or any other device that has an electric battery or signal, you should not use these for migraine treatment. People with any metal in their skull, other than dental fillings, should consider only the Nerivio remote electrical stimulation device. There are other non medical treatment options that you can try before taking the step to any of the procedures of medications. You can find out more at our Non-medical Migraine Therapies audio guide. If migraine is affecting your career, find out how to navigate that in our Managing Migraine in the Workplace audio guide. If you’re unsure of the difference between headache and migraine, we make it simple for you in our What Is Migraine audio guide. And we also discuss the next steps of getting diagnosed in our Migraine Diagnosis audio guide. For medical information and advice about your own migraine treatment, speak to your doctor.
In this audio guide, we explore lifestyle changes and nonmedical therapies to help you live well with migraine.
Living Well With Migraine Audio Guide
Narrator 00:10
Welcome to Audio Guide four for Talking Head Pain, produced by the Global Healthy Living Foundation. Whether you or someone you care about have migraine, or think you or they might have migraine, these audio guides are designed to help you make sense of the headache and other symptoms. Accurate information will help you work together with your healthcare professionals to hopefully have fewer and less severe headache episodes. The good news is there are more effective safe treatments than ever before. There is also more evidence than ever that a combination of medicine and a healthy lifestyle are the most successful approach to managing migraine. In this audio guide, we share lifestyle changes you can make, integrative therapies you can try, and other ways of living well with migraine. In every audio guide, we provide information checked by medical professionals who specialize in migraine and other headache disorders. The guides are also reviewed by people who have migraine and understand what it is like to live with recurring headaches. Suggestions for care, including the lifestyle changes we talk about today, are based on guidelines from the American Academy of Neurology and the American Headache Society. As you try lifestyle changes and integrative treatments, you will find some work better than others, not only for your migraine, but also for you as a person. We recommend to try one change at a time for a few weeks. Keep notes, ideally in your migraine diary. That will give you a record of what does and does not work. Share the things you are trying with your healthcare team just like you share your overall health information. Not every treatment works well with another and your healthcare team may have experience and knowledge about combinations that could be unhealthy. Please remember, headache of any kind is a medical issue. Always talk to your healthcare team. If you have a headache that bothers or worries you. That goes for headache treatments too, whether medicine, exercise, or sleep habits. If something you try doesn’t feel right, work with your doctor to find out what is best for you. There is increasing evidence that a healthy lifestyle protects the brain, reduces migraine frequency and severity, and even has a role in preventing other brain diseases like Parkinson’s and Alzheimer’s. Dr. Jennifer Robblee and Dr. Amaal Starling are neurologists who specialize in headache disorders at the Mayo Clinic in Scottsdale, Arizona. They created the easy to remember acronym SEEDS for self care techniques to help reduce migraine attacks. S is for sleep. Not enough or too much makes migraine attacks more likely. The healthiest sleep habit for most people is seven to eight hours every night. You can make that more likely by developing a sleep routine. Turn off electronic devices one hour before going to bed and set a consistent bedtime and wake time for every day, even on the weekend. If consistent sleep is hard to achieve or you feel tired during the day, talk to your healthcare team, Consider specialized cognitive behavioral therapy for insomnia, which is a short term therapy proven safer and more effective than medicines to aid sleep. E is for exercise. There are almost too many benefits of regular exercise to list including reducing heart disease risks, improving brain health, maintaining a healthy weight and sleeping better. All of which also improve migraine. Exercise can also help with stress management and improve your mood. Aim for 150 minutes of moderate exercise each week. Whether that is in five minute walks twice a day, or 50 minutes of a vigorous workout three times each week. What exercise you do and how often you exercise is less important than finding something that you enjoy enough to do regularly. There is also evidence that people with chronic migraine who use preventative treatments have fewer migraine days each month when they exercise at least two and a half hours per week. The second E in SEEDS is eating and drinking. Eating regular heart healthy meals, drinking plenty of water, keeping alcohol intake moderate, avoiding caffeine, and not smoking all reduce migraine frequency. These also help you stay healthy in general. Avoid skipping meals over or overdoing it at a single meal. Drink one eight ounce cup of water eight times a day to stay hydrated. Keep alcohol intake moderate, one to two drinks per day or less. And avoid caffeinated beverages. If you do drink coffee, tea, soda or energy drinks containing caffeine, try to keep the amount small and regular. Changes in caffeine intake can cause migraine attacks. If you smoke cigarettes or cigars, your healthcare team can help you access resources to help with stopping. D is for diary. We’ve talked in earlier audio guides about the importance of keeping a diary of your migraine attacks to help you and your healthcare team know the ins and outs of your migraine and your migraine treatment as it affects you. Record the day and time an attack starts and ends, what medicine you took, if any and how well it worked, and how the attack affected your ability to keep doing your usual activities. The second S is for stress management. Stress is a big migraine trigger for many, with some people experiencing high stress just before an attack that decreases as the attack resolves. Other people are more aware of stress during the painful phase of migraine attacks, and others have stress that doesn’t change during migraine attacks. Of course, the idea of managing all the stress in your life may even make you laugh. So much of what causes us stress is outside of our control. Still, even when it is not possible to reduce your stress, you may be able to find healthy ways of coping with it. Exercise, gardening, other hobbies, meditation, yoga, tai chi, mindfulness and relaxation techniques are all known stress reduction tools you can experiment with in case one of these will work for you. In addition to sowing seeds for success with self care, integrative nonmedication treatments may help make migraines less frequent or less severe. Cognitive behavioral therapy is one of the best proven methods for improving migraine. This therapy helps people control the thoughts and reactions they have about their pain, which can reduce the stress of having to handle something so difficult. Cognitive behavioral therapy reduces stress and improves mood. If like so many people with migraine, you also experienced depression or anxiety, cognitive behavioral therapy will likely also help with these. Although there is certainly a psychologic component to how we perceive the pain we experience, the fact that therapy is helpful does not mean migraine is all in your head. Migraine is not a psychiatric disease or a psychological problem. It is a biological and chronic disease. Suggestions that it is anything else are part of the stigma we are working to change. No matter what chronic condition a person has –epilepsy, diabetes or high blood pressure– managing stress and emotions helps people manage chronic health conditions. Biofeedback is another integrative technique that can help with migraine. Although it can take a long time to become effective because it is a learning process. A trained biofeedback therapist uses small electric monitors to help you learn to recognize changes, like muscle tension, body temperature, and breathing and heart rates. As you learn to recognize those, you can address pain sooner and may be more able to address and manage it. Some people find a massage to relax muscles and the mind is helpful. The ancient technique of acupuncture is also helpful for some, although there is no clear evidence of why this is so. Devices that modify the light you were exposed to may also help. Glasses that block blue light have become more commonly used and more commonly available, but most were not designed specifically for people with the light sensitivity of migraine. Two companies that do produce glasses specifically for people with migraine, or TheraSpecs and Axon Optics. Another light related integrative treatment is the Allay Lamp, which uses a specific wavelength of green light. Some research suggests that this can decrease pain during a migraine attack. Some people say using the lamp regularly also decreases the frequency and severity of migraine attacks for them. There is limited evidence that any herbs, vitamins or supplements help with migraine. Butterbur has the best evidence but can be dangerous and harmful to your liver if it is not free of pyrrolizidine. Because this chemical can contaminate butterbur, you must have your liver function closely monitored by a doctor if you use it. Riboflavin, vitamin D, magnesium or feverfew may also help with migraine and are generally safe to try. Always tell your healthcare team about any supplements or over the counter medications you use because they may interact with migraine medications or not work at all. Vitamins, supplements, and herbs are not regulated as strictly as medication, and the quality and potency can vary widely. There is a stigma around migraine that causes many people, perhaps even your loved ones, to brush it off as nothing serious. But whether you’ve lived with migraine for years, just recognized your attacks are migraine, or just started having them you know it is so much more than just a headache. It is not uncommon for migraine to be severe enough to prevent people from working, doing household chores, or attending family and social events. Migraine can take a dramatic physical and emotional toll. Educating yourself, your support network, your coworkers and other people can be helpful in overcoming this very negative aspect of headache. You can join support groups and patient advocacy organizations that help you do this. Participating will put you in touch with people who have similar experiences, making isolation less likely because you will know that you are not alone. If you’re wanting to know more about medication, listen to our audio guide on Migraine Medication Options. If you’re wanting to know more about migraine, listen to our audio guide on What Is Migraine, and our audio guide on Migraine Diagnosis. If you are needing further guidance of managing migraine in social settings, listen to our audio guide on Managing Migraine In The Workplace. For more medical information and advice about your own migraine treatment, speak to your doctor.
Get advice and information on how to navigate the complexities of the work environment with a migraine condition, as well as supporting others with migraine in the workplace.
Migraine on the Job
Narrator 00:07
Welcome to Audio Guide Five for Talking Head Pain, produced by the Global Healthy Living Foundation. Whether you or someone you care about have migraine, or think you or they might have migraine, these audio guides are designed to help you make sense of the headache and other symptoms. Accurate information will help you work together with your healthcare professionals to hopefully have fewer and less severe episodes. In this audio guide, we address a key challenge for many people with migraine, how it is affected by and affects our work and workplaces. As in all our audio guides, we provide information checked by medical professionals who specialize in migraine and other headache disorders. The guides are also reviewed by people who have migraine and understand what it is like to live with recurring headaches. For this guide, we also use information from “Migraine In The Workplace: What Employers And Employees Need To Know,” which includes survey data about migraine from over 800 different workplaces. Our workplaces are complicated mixtures of people with different backgrounds and life experiences. There are also many different types of workplaces and work cultures. Some work teams interact and feel as close as families for better or worse. Others have a more detached approach, but still with team loyalty. Some are cutthroat competitive. But whatever type of workplace you are in and whatever workplace culture you have, if you think of six coworkers, it is likely that one of them also has migraine. Surprised? We wouldn’t blame you if you are because migraine is a chronic condition that carries stigma, negative responses of others and society. As a result, many people, perhaps you too, say nothing about their migraine attacks at work. In the migraine in the workplace survey, three of every four people with migraine said they were reluctant to share their condition with their manager or call in sick when having a migraine attack. Only one in five people with migraine said their workplace was often understanding of the condition. Some of the stigma of migraine in the workplace comes from simply misunderstanding or a lack of shared experience. The five of six people who don’t have migraine may think that migraine attacks are just a bad headache and fail to understand why some people would need to call out sick because of one. They may not understand that a migraine attack can make it so hard to do your job that you might as well not be there. Because of this if you do work through a migraine attack, which two out of three workers with migraine said they had been made to do, your coworkers may perceive your work effort and you negatively. Perhaps even as negatively as they perceive calling in sick for “just a headache.” The one in six who has migraine knows better. We know that not only the headache, but also the other symptoms of a migraine attack, are excruciating. We know that sometimes just trying to sit up when you’re having an attack can make a person vomit, that the slightest bit of light, artificial or natural, can make you feel as though your eyes were being stabbed repeatedly. And that every sound can reverberate inside your skull like an electric shock. And most of us are aware of the lower productivity that occurs while working through a migraine attack. At least that is what 93% of the people with migraine who are surveyed said. And almost one in five said they believe they had lost a job because of their migraine. No wonder people are quiet about migraine in the workplace. Even if coworkers and managers don’t react negatively to your taking sick days or being slowed down at work because of migraine, the worry that they might is real. And of course this causes stress. Ironically, the most common trigger of migraine attacks. Other environmental factors also play a role in triggering migraine attacks or making them more frequent. The lighting, sounds, and smells of your workplace can also trigger migraine attacks or make them more frequent. The workplace setup; how you sit, stand or move throughout your day can also affect migraine, which is made more frequent by neck and shoulder pain, poor posture and other conditions that affect muscles and nerves. It is important to pause here and remember that some people have migraine that is so severe and occur so often that they are not able to work. And because migraine, despite being the second most disabling disease worldwide, is not included in the Social Security Disability Benefits Blue Book, it can be very challenging, although not impossible, to get disability benefits because of migraine. For people with migraine who are able to work, there are things we can do to improve the work environment for ourselves and others in ways that will help reduce migraine triggers. The idea of migraine as just a headache and the stigma that goes along with that are as we noted, most often caused by a lack of knowledge. For example, of human resource professionals who responded to the survey, almost all, 95%, said that migraine affects the use of sick days and productivity when people are present. But almost half, 43%, also believed people can work with a migraine attack. This means sharing knowledge and educating people about the realities of migraine and migraine attacks is an important way to make things better for people with migraine in the workplace. If you have enough support and feel comfortable doing so, you can share Talking Head Pain and other Global Healthy Living Foundation resources with your managers, coworkers, and HR teams. Some of our resources, including “Migraine In The Workplace: What Employers And Employees Need To Know” can be printed and left in a break room for others to see. If there is a health and wellness group within your workplace, you can suggest that they learn about migraine and share information about it with everyone in the workplace. Hearing about migraine as a serious problem from others may make it easier for anyone in the workplace to talk about it openly. Some companies have affinity groups, and you could start one for people with migraine. If there is a Health and Wellness Fair, you could ask to be a part of it and share information with people. Raising awareness, which we understand not everyone will be able to do, can also make it easier to request accommodations, which are work modifications that may make it less likely that work will provoke migraine attack, and that you will be more able to deal with a migraine attack that does occur at work. These accommodations should be made available to you whether you can participate in education efforts or not. Why? Because it is well recognized that workers who receive what they need from their employer are more productive. Feeling cared for and appreciated by an employer leads to employees who are more engaged with their work, and employees who are highly engaged are more productive. Companies with higher levels of engagement are more profitable. Expressing care is more than a good benefits package, education to reduce stigma, health and wellness programs. It also involves managers checking in on employees personally if they know the employee has a chronic health problem. And according to the Americans with Disabilities Act, it is also the law that companies must make accommodations for workers with migraine and other chronic illnesses, provided that the employee is able to do the core requirements of the job with those accommodations in place. What are the accommodations that work well for people with migraine? Replacing bright fluorescent lights above a desk with softer lighting from a desk lamp, computer monitor screens or blue light blocking glasses can be ordered for people who spend long hours in front of a computer screen. Strong perfumes can be prohibited in a workplace. People with migraine can be seated away from kitchens and break rooms and given preference for quieter offices. Quiet dark rooms can be designated where people can go for a break if they feel a migraine attack coming or are having one. Evidence strongly suggests that the earlier a migraine attack is treated, the more quickly it goes away. If workers can get time in a quiet dark room, they may be able to return to being productive. People can be encouraged to use sick time when they have a migraine attack instead of feeling guilty about doing so. Flexible work hours can be a very important accommodation for people with migraine. When possible, the option to work from home after an attack may increase productivity. Regular breaks to eat, stay hydrated and exercise are also beneficial. Ensuring there are breaks between meetings, especially important now that meetings are often via video conferences that require screen time. Making sure people feel comfortable turning off the video camera instead of making eye contact with the screen may be helpful. Finally, because most working Americans receive our health care benefits from our employers, our employers can act when benefits don’t meet the needs of their employees. In the Migraine In The Workplace Survey, 22% of employees with migraine said that their migraine treatments prescribed by their doctor had been denied by insurance companies. Two out of three human resources professionals said that when employees were denied coverage, the employer would pay for the medicine anyway, something many employees don’t realize. Work is necessary for survival for most people. For many, it is also a source of satisfaction; the pleasure of a job well done, the camaraderie of a team. This shouldn’t be denied to people just because they have migraine. We can all work together to make the workplace better for people with migraine instead. If you need further information on migraine, listen to our audio guide “What Is Migraine” to find out the difference between headache and migraine. How to get diagnosed in our “Migraine Diagnosis” audio guide. For treatment options, refer to our audio guides on “Migraine Medical Options” and “Nonmedical Migraine Therapies.” For more medical information and advice about your own migraine treatment, speak to your doctor.
Behind the Mic
Joseph Coe, MPA
Host
Joseph Coe, the Director of Education and Digital Strategy at the Global Healthy Living Foundation, has been living with migraine since his teens.
As a migraine patient advocate, Joe knows the power of speaking up and being proactive when managing his complex neurological condition.
Through personal conversations with fellow migraine and headache patients, Joe explores the challenges, hopes and triumphs of his guests.
Tune into Talking Head Pain and hear how people like you have found ways to get relief.
Peter McAllister, M.D.
Neurologist, Medical Expert
Peter McAllister, M.D. Host Neurologist, Medical Expert Dr. McAllister is a board certified neurologist and director of The New England Center for Neurology and Headache. He holds clinical appointments at both Yale University School of Medicine and The Frank H. Netter School of Medicine at Quinnipiac University.
As the former Director of the Headache Center, Concussion Center, and Clinical Research at Associated Neurologists of Southern Connecticut, Dr. McAllister is recognized as a “Top Doc’’ in Connecticut and New York, as well as a “Top Neurologist” by the U.S. News and World Report. He lectures nationally and has been the principle investigator on numerous clinical trials, as well as authored articles in the lay and scientific press.
Dr. McAllister employs a holistic approach to diagnosis and treatment as a practitioner. His area of expertise includes: headache, concussion, Multiple Sclerosis, ADHD, Lyme Disease, and complex neurological conditions.
More Resources
Living with migraine isn’t easy, there’s much to learn about symptoms, management, and treatment. As a non-profit organization dedicated to education, research, and advocacy, GHLF has plenty of free resources available to get you started.
Men with Migraine
Men get migraine too and “maning up” doesn’t make you strong it just prolongs your pain and suffering.
Blue Light and Migraine
Feeling like a vampire? Learn how blue light can trigger migraine.
What Migraine Feels Like
We asked the Chronic Migraine Awareness nonprofit community what migraine feels like. Here’s what they said.
Migraine Patient Guidelines
Vetted by medical experts and people living with migraine disease, our Migraine Patient Guidelines help you navigate your treatment choices for migraine.
Migraine in the Workplace Report
While our survey data suggests that most employers understand migraine to be a common problem, it also suggests some degree of indecision or inaction surrounding effective accommodation and treatment.
Migraine Caregiver Guidelines
Our guidelines educate caregivers about treatment options available to their loved ones to help prevent and manage migraine attacks.
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Talking Head Pain is a new podcast series produced by the non-profit Global Healthy Living Foundation, and made possible with support from Amgen. Through personal conversations with fellow patients, host Joseph Coe explores the challenges, barriers, and disparities that exist when it comes to migraine and headache disorders.