Extra Episodes
Extra, Part II – TikTok Migraine Doc
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 II - 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 12:58
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.
Extra, Part I – “Please Believe Me, I Have Migraine”
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 I - "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 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.
Extra – Outfoxing Your Migraine
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
0:00 Announcer- Be inspired, supported and empowered. This is the global Healthy Living Foundation Podcast Network.
0:09- Dr. Lindsay Weitzel
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.
:18- Joe Coe (host)
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?
:59 Lindsay– I am great.
Joe– How long did it take for you to distinguish between what many would consider a headache and a migraine?
Lindsay– 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.
2:04- Joe
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.
2:22- Lindsay- 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 experience 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 is 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- 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.
3:23- Lindsay- 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 is 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.
5:04- 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 a strangest migraine I’ve ever had. So that one was definitely my worst one.
5:34- Joe- 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 Lindsey, 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.
6:19- Lindsay- 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.
6:41- Joe- 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
6:50- Lindsay- 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 my grain. 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.
7:59- Joe- I love that. And my father was a mason mortar and caulking and all that stuff. Do you ever use some of those rocks to help people throw them at insurance companies?
Lindsay- Yes.
Joe- I need a bucket of rocks right now.
Lindsay- 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.
8:48- Joe- 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- 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 knock on wood, 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.
10:18- Joe- And Is that why you wrote the book Super Zoe, The Migraine Hero?
Lindsay- 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.
11:20- Joe- So who were the go to superheroes in your house? Are you a Marvel DC family? Like where does that break down?
Lindsay- 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 and you’re not feeling well?
Joe- 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 and middle school, and that’s 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- I think that’s true. And I think it’s interesting. There’s certain migraines not all of them, do this, move it, 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 phoneaphobia 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 phoneaphobia 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.
14:08- Joe– Lindsey is the host of a podcast called heads up which is sponsored by the National headache foundation.
Lindsay- Hello, everyone and welcome to Heads Up the webcasts and podcasts of the National Headache Foundation. I’m Dr. Lindsay Weitzel.
Joe- What is one of the most interesting things that you’ve learned while doing this?
Lindsay- 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. It 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 as 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.
15:50- Joe- 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- 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- You talked about helping people create their mortar and their foundation. What’s a mortar tip that you would give to our audience?
Lindsay- 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 ‘cause 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- 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.
17:37- Lindsay- 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, more 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 ‘em 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- 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- 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 migrants 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- I have one last question. As a parent, how do you feel seeing your child live with migraine?
Lindsay- 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 may be more well equipped as some of us realize and I’m always just go at it the way you would at 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- 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- 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.
21:10- Joe I really appreciated that Lindsay shared practical tips for us while we are experiencing a migraine attack. I think that some of these tips were counterintuitive, but really helpful for those of us that are struggling in the moment with an attack. I’m sure as someone living with migraine you have your own tips to share. Send them to us at [email protected]. Better yet, include a short video or audio clip, and who knows what you share maybe 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.
Announcer- Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.
About Our Host
Joseph Coe is the Director of Education and Digital Strategy at the Global Healthy Living Foundation. He has lived with migraine for 20 years so he understands what it can do to your life.
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.
Catch up on season one of “Talking Head Pain” with Joe.
Episode 1
Migraine and Millennial Culture
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.
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.
Episode 2
Cluster Nightmare
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.
Cluster Headache 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.
Episode 3
Leading with Migraine
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.
Leading with Migraine
Episode 3: Leading with Migraine Transcription
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
Episode 4
Black, Queer, and in Pain
Sarah Reneé, a patient advocate, shares her experiences of navigating migraine care as a person in various marginalized communities.
Black, Queer, and In Pain
Episode 4: 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. 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.
Episode 5
Married with Migraine
Cara, an author, and her husband Seth, cofounder of GHLF, talk about the impact of migraine as a married couple who are raising children.
Married with Migraine
Episode 5: Married with Migraine
JC: Joe Coe
SG: Seth Ginsberg
CZ: Carla Zelas
PM: Dr. Peter McAllister
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.
Episode 6
Confronting Migraine Stereotypes
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.
Confronting Migraine Stereotypes
JC-VO: Joe Coe Voice Over
JC: Joe Coe
SM: Sean McEvoy
PM: Dr. Peter McAllister
JC-VO: Content warning this episode contains sensitive content around suicide.
SM: My worst migraine attack was just a few years ago. It was just after I started getting chronic migraines. It came on I woke up 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 ice pack, and just putting it against your temple and just hammering it into your head, that’s the only way I could describe it.
The extremity of that one lasted about eight, nine hours and then I 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, the throbbing 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 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 so bad.
I wanted to die. Like I thought I was going to but I wanted to die.
JC: Migraine pain is much more than just a bad headache, it creeps into your life and can quickly take over every inch of your life, having people consider the unthinkable. Hi, I’m Joe Coe, the host of Talking Head Pain, where we confront pain, head on.
We often see middle aged women portrayed as migraine sufferers, in this episode we are confronting those migraine stereotypes head on.
SM: My name is Shawn 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 a few other injuries.
I’ve taken up photography in the last couple of years as kind of a side hustle.
JC: Thank you for joining with us today. Do you remember when you first started to get migraine?
SM: I remember getting migraine I was about eight years old. didn’t know what it was, you know, I knew it was a bad headache. It was in the late 70s. So there wasn’t any, you know, it 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 getting more frequent and more triggers that I get with them. I will always get a migraine every time when there’s any kind of parametric pressure changes, stress, whatever
JC: I often joke, Shawn, that I’m better forecaster than the weather people. Maybe your side hustle could have been a weatherman?
SM: 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.
JC: It’s definitely my superpower. When were you first diagnosed with migraine?
SM: I was in the military? I think I was about 23-24 so would have been, like 1992 93. So yeah, so I went from age eight to like 24 with not knowing just thinking that these are just bad headaches.
JC: And how did you get diagnosed?
SM: 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 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 referred me to a neurologist and sure enough every time to diagnose classic migraines and yeah it was it so it was military doctor that diagnosed
JC-VO: Images of people like Sean, former military men, aren’t usually represented in the media as someone who gets migraine, let alone lives with it each day, or each time there’s a change in weather. There could be a lot of factors at play as to why we don’t see different parts of the migraine community represented.
JC: Do you find that it’s harder to get through to men that men aren’t looking for the mental health help or addressing their migraine symptoms?
SM: 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, and I think it’s more prevalent only because women are more apt 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 a great 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 it. 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 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.
It’s nothing to be ashamed about. That’s what I try and tell people all the time.
JC: Totally agree.
JC-VO: Sean saying that men are less likely to seek treatment isn’t just a hunch, and there does seem to be health disparities when it comes to men and women when it comes to migraine, we spoke to Neurologist Dr. Peter McAllister
PM: Men and women talk about migraine differently. My practice is probably 75% women, and for a couple 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 or 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 health care, women tend to 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 discussed 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, you know, more difficult patients, I can usually get it across it, 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 and 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 were 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.
JC-VO: The idea that men might not seek help due to their careers, made me wonder about Sean’s career in the military.
JC: Did getting diagnosed at migraine impact your career in the military?
SM: No, no, not really. The as long as I was still able to be deployed.
JC: What about people around you in the military? Do they understand what was happening? If you’re in the barracks and having a migraine?
SM: 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 I was just stress being the trigger. I was pretty stressed out, got a migraine, end of the day, about three o’clock or whatever. In the afternoon. I was lying on my bunk had pillow over my head. And there’s people like it was four to a room at the time. Three roommates and you know, they’re blasting music and you know, talking loud and partying up and I’m sitting there 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.
JC: Have you experienced any stigma when you have spoken out? either from people close to you, or people in the community?
SM: 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 been friends with for years and all of a sudden they drop it 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.
And I’m like, you know, I don’t need you in my life. So that’s, I, I meant the point now that I just I ignore that. That noise in the background for, for lack of a better word, I just, I do my thing. And if people don’t like it, then don’t listen.
JC: 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.
SM: 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 military both my grandfather’s uncles, cousins, you know, the whole bit and that that’s a mentality that that is big in the military. You know, ifyou 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 you know, some one of the guys that wasn’t me had twisted his ankle or something and they the drill instructor he was he resolved Come on, suck it up, Nancy, let’s go we got a merge to do you know, and kind of like that was kind of, okay, you’re a bootcamp that’s how you treated you get that but as my career went on, you heard it more and more
JC-VO: Sean has definitely highlighted that men are more likely to live through the pain and are less likely to seek help, but when we do that with our migraine pain it can definitely evolve into further health issues.
JC: what’s the danger of sucking it up?
SM: There’s a lot of 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 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 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 fresh air also do a lot of reading. love to read takes me in a whole different world
JC: You talked about the feeling 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 an and are an advocate for people with migraine, in fact, is that something that you help address and work with the community on?
SM: I tried to yeah.
And 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 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 him 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 it 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
JC: 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?
SM: 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 going to get rid of your migraines. But if you can control them, your life 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, I’m 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 talk to veterans bed 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, or seeking help.
JC-VO: 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.
Sean really shines the light on the importance of men seeking medical help, whether it’s for migraine, mental health, or any type of pain we may be enduring. It’s not embarrassing to speak out, there are people out there, many people, who experience what we do, and there is power when we come together and speak out.
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.
Episode 7
“Clocked In” with Migraine
Dreama, a housekeeper, shares her experience of working with migraine as someone who is self-employed and often doing physical work.
“Clocked In” with Migraine
JC-VO: Joe Coe Voice Over
JC: Joe Coe
D: Dreama
PM: Dr. Peter McAllister
D: 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. The sound noise was like you know the bells had at Notre Dame Cathedral. That’s how every noise sounded to me. I finally looked at my son and told him to take me to the hospital because it lasted hours, probably 10 hours into it. So just completely obliterate it, not able to move. And 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 town is because I hadn’t passed out. And I wished I would have.
JC: Ask a person living with migraine about where and when their first migraine was. Hi, Im Joe Coe, host of Talking Head Pain, where we confront head on. In this episode we are exploring how migraine affects us financially by compromising our working lives.
D: My name is Rima I am well still technically 50 and I clean houses for a living.
JC: Do you remember when you first started getting migraine and how did it start for you?
D: I remember being 17 years old, and I was at school. And my head was hurting so bad. I just got into 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 25 though.
JC: Why did it take that long to get it diagnosed?
D: Money. Or lack thereof. We didn’t have insurance at that point. Um, and basically my parents were pretty much you know, can’t afford it. So keep spend it. Sorry, deal with it. So yeah, 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.
JC: Wow, that’s a long time.
JC-VO: 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, there are some long term effects for delayed diagnosis. I had Neurologist Dr. Peter McAllister shine a light on this.
PM: 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.
JC-VO: It’s important to not just get an early diagnosis to manage your migraine early, but also to stop having such severe migraines. For Dreama, managing migraine for decades and with five kids, must be an incredibly exhausting balancing act.
JC: And how is it with your kids? How did you explain migraine to them? And how did they react?
D: When they were a lot younger, it was very, very hard because when my migraines would put me in bed, I’d have no choice but what their dad will try for him. You know, um, 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 so absorb what you’re telling me. So I would have no choice but to tell them. And by the time were all about four, they knew don’t bug mom when she goes to a room Close the door.
JC: You are not a terrible mother. I could tell that. The way you talk about your children, and I definitely feel the love there. Do any of your children have migraine?
D: I’ve had two that have been diagnosed. And two that we are 100% sure that they have migraines, but they have not been diagnosed. So four of the five.
JC: Do you find that you’re able to relate to them now the ones that are diagnosed and have migraine?
D: 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 auditory or the visual. And that that’s hard. My Naomi her biggest problem is indeed the nausea. You know, we put her on nausea pills now and I don’t think they’re helping. We tried to peppermint stuff. It hasn’t helped. So she does like me pretty much and just ride it out until it’s done. So and then my other two I honestly I really don’t know they’ve called me one sided head pain and that’s all I really know.
JC: How frequently do you get migraine now?
D: I probably get about one a week, they are 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 clients and say I can’t come. So because being on the road would be dangerous.
JC: You talked about being a housekeeper and having migraine and how that impacts your livelihood or your ability to do your work?
JC: When you’ve had to call out what your clients do, do they understand? Or do you tell them why?
D: I have got the best clients on the planet. The whole 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 you tell me Look, you’ve got to have a go home. So yeah, I love that.
JC: Do you feel concerned about your future living with migraine, and like your work situation and
D: Not so much migraines as the rest of the aches and pains going in my body. So that’s more the concern. For, no, cuz it’s a it’s an extremely physical job and I’m not one to use mop, I mop my floors by hand. So, you know, my body is suffering from, you know, the workload. So yes, I am absolutely concerned about, you know, what am I going to do when I can’t do this anymore? No, I have no savings. I have no honey to take care of me. And I’ll live with my kids and steal their food.
JC-VO: Often we think about the pain that often comes with migraine, but not often do we speak about the financial losses or the fear of what our future will look like because of it. It’s so important that we get the right care from our healthcare professionals. I really hope Dreama is now finally getting the care and advice that she deserves.
JC: Where do you currently get treated for your migraine?
D: I go to the downtown clinic, which is for free people, I mean, broke people
JC: So you go to a clinic and how are they? Do they understand migraine?
D: My original doctor actually suffered from migraines. So she completely understood. 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 has to work people with migraine.
JC: Do you think that people in general, who have less money get different type of treatment when it comes to diseases like migraine?
D: I honestly do not know I try and seek out the good in people. You know, 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.
JC: 18 months?
D: Yeah, and then the doctor telling me ‘oh migraines only last three day.’ Ok why don’t you tell everyone of my friends who have had migraines for years.
JC: So you had a migraine for 18 months and the doctor that you saw said that’s not possible because migraines only lasts three days. How did that make you feel?
D: 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, cuz Honestly, I don’t know what he was thinking. But you know, that’s how I felt.
JC-VO: 18 months seems too long to be battling with something silently, and then be knocked back when you reach out for help. For a preventative medication. Unfortunately this may be rare, it does happen. Dr. Peter McAllister explains.
PM: 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 a cause 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.
JC-VO: It’s not a secret that healthcare isn’t perfect in this country, and not everyone gets the same care, so it’s so important to advocate for your health, and although migraine is something we fantasize about one day not living with, there are definitely some positives to it.
JC: Do you feel that having migraine has helped you be more empathetic and kind toward people?
D: Definitely, definitely. I 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 is hiding underneath their skin. You just you don’t. So if somebody is walking with a limp and respect that, and you know, it kind. I think it’s made me much more empathetic.
JC: What would you want others who are in similar situations as you to know about migraine?
D: 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 thought 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. Now Oh, and keep a diary of your migraines. And if you can figure out your triggers do because that’s awesome.
JC-VO: We can face many different issues when trying to manage our migraine pain, discovering what it is, getting diagnosed, and then finding adequate treatment, but there is a community out there wanting to support you. We have create free audio guides to help you step by step through your migraine journey, you can find them at talkingheadpain.org
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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.
Episode 1
Understanding Your Headache
Learn the differences between headache disorders and common headaches. Hear about how to identify potential headache causes and triggers, as well as the significance of a migraine diary to establish headache patterns for proper diagnosis and treatment.
Understanding your Headache and Migraine
Welcome to this audio guide for 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 health care 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 health care 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 1 out of every 8 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 are a medical problem that can be treated, and anyone with regular headaches of any kind deserves relief.
So, who are the 1 out of every 8 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 1 out 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 health care 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 2.
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 still 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. 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 1 out of every 3 people with migraine has aura with some or all migraine attacks, but most people never experience aura and only some experience prodrome.
The attack phase may last anywhere from 2 hours to 3 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?
We are still learning what causes migraine. Current research suggests that it is mostly genetic with environmental and lifestyle factors affecting severity and frequency.
The biologic process 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 that 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 3 and 4.
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 has 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, sometimes 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 then you would otherwise. Unfortunately, this can lead people to blame themselves, thinking “I shouldn’t 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 2, this can also help your health care 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 drank 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 workday
- 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 Non Medical Migraine Therapies audio guide, and the common challenges of migraine in our Managing Migraine in the Workplace audio guide.
For more medical information and advice about your own migraine treatment speak to your doctor.
Audio Guide 2
Getting Headaches Diagnosed
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.
Getting diagnosed
Welcome to this audio guide for 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 health care 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 health care 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 Health Care
Before talking about getting your headache disorder diagnosed, we want to acknowledge that for many people, this is limited by poor access to health care or poor treatment within the health care 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 you can still use to care for yourself—because you matter.
We also recognize that structural racism and discrimination occur within the health care 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 a so-called difficult patient if they self-advocate for proper care. Although no profession or individual is immune from bias, there are health care providers working to change this. We encourage you to continue educating and advocating 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 health care 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 medicines you take, and
- any other consistent patterns you see.
Sharing your migraine diary with a health care professional can give them a very clear pattern that they may be able to connect to specific headache disorders.
Together you and your health care 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 health care providers in 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 health care provider—whether they are your primary care doctor, a community health care 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 health care 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 0-10 pain scale)
- does the pain worsen with movement?
- where on your head does pain occur? Behind one or both eyes? At 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 occur only in some environments (such as at your work site) and not others?
Your doctor may also ask whether you’ve noticed any stressors, foods, drinks, activities, weather conditions, odors, or 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 your and your family’s medical history. This includes:
- high blood pressure, heart conditions or stroke
- 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 or 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 began 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 5 or more headaches that were at least 4 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 that 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 are 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.
Audio Guide 3
Medical Treatment for Migraine and Headache
Learn more on the differences between headache disorders and common headaches, as well as acute and preventative migraine treatment options.
Medical Treatment for Migraine and Headache
Welcome to this audio guide for 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 health care 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 health care 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 then every 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 health conditions or are taking any other medication, herbal or vitamin supplement, or use cigarettes, alcohol, or other drugs, it is essential to include that in a conversation with your health care provider about what medication is appropriate for you. If you think you may be pregnant or plan to become pregnant, you should let your health care provide know right away, because some medications that treat migraine may not be safe to use.
Treatments for migraine come in two basic flavors–acute and preventive. 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. Preventive treatments are used to make attacks happen less often and these may be pills, nasal sprays, injections, or infusions. There is a non-medication option call neurostimulation that we’ll discuss too that can be useful in both acute and preventive treatment; sort of a chocolate-vanilla swirl. In 2021, there are also two medications in development that may work for acute and preventive 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 headache medications more than 3 or 4 times per week increases the frequency of headaches. If you find you are taking medicine for your headache attacks more than 3 times a week, it is a good idea to consider preventive treatment.
The most 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 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 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 are rimegepant, branded as Nurtec; ubrogepant, branded as Ubrelvy; and lasmiditan, branded as Reyvow. Rimegepant and ubrogepant are in a new class of drugs that block the activity of calcitonin gene-related peptide, or CGRP, which is also released during migraine attacks. Both are taken by mouth and may cause nausea. Ubrelvy may also cause sleepiness. These drugs, so far, seem to be safe in people with heart conditions or risk factors for heart conditions.Lasmiditan affects serotonin without affecting blood vessels, so it can be used by people who cannot use triptans. However, lasmiditan, 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. Lasmiditan can also cause driving impairment and should not be used within 8 hours of driving.
For people who cannot take or access triptans, gepants, or lasmiditan, other prescription treatments are available. These include stronger anti-inflammatory medications like prednisone or dexamethasone. These steroid medications, howver, 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. Dihyrdroergotamine, 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. Some anti-nausea 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 and 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, nausea.
If you have 15 or more days a month with headache pain, your migraine is considered chronic and preventive treatments 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 preventive treatment, although, unfortunately, they often do not receive it.
The newest preventive treatments for migraine are also the first developed specifically for migraine. These are 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. 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 2-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. Like the gepants and lasmiditan, these are still brand-name nongeneric drugs that can be difficult 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 36 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 injection cycles over 6 to 9 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 health care 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 to feel relief of my symptoms?
Last, let’s talk about neuromodulation—devices that use electric pulses—for acute and preventive migraine treatment. An advantage of this non-drug option is that there is no risk of medication-adaptation headache. A disadvantage is that the 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 preventive 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. The prescription gammaCore Sapphire device is held at a specific spot 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 SAVI device is held to the back of the neck to deliver 3 pulses of magnetic stimulation, which can be repeated every 15 minutes for up to 1 hour. For prevention, two pulses are used in the morning and night, every day. The company that produces SAVI filed for bankruptcy in 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 SAVI device brief light-headedness, 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 are 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 to getting diagnosed in our Migraine Diagnosis audio guide.
For medical information and advice about your own migraine treatment, speak to your doctor.
Audio Guide 4
Living Well With Migraine
In this audio guide, we explore lifestyle changes and nonmedical therapies to help you live well with migraine.
Living Well with Migraine
Welcome to audio guide four for The Migraine Show, 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 health care 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 trying 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 doesn’t work. Share the things you are trying with your health care team, just like you share your overall health information. Not every treatment works well with another and your health care 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 health care 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 7 to 8 hours every night. You can make that more likely by developing a sleep routine. Turn off electronic devices 1 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 health care 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 5-minute walks twice a day or 50 minutes of a vigorous work out 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.
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 8-ounce cup of water 8 times a day to stay hydrated. Keep alcohol intake moderate—one to two drinks per day or less—and avoid caffeinated drinks. 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 health care 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 health care 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. 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 our control. Still—it is possible to reduce the stress and find healthy ways of coping with the stress you can’t reduce. Exercise, gardening, other hobbies, meditation, yoga, tai-chi, mindfulness, and relaxation techniques are all know stress-reduction tools you can experiment with until you find what works 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 experience 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 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 effect 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 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 are 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 are TheraSpecs and Axon Optics.
Another light-related integrative treatment is the Allay Lamp, which uses a very specific wavelength of green light. Some research suggests 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 health care 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 a “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 are wanting to know more about medication, listen to our audio guide on Migraine Medication Options. If you are 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.
Audio Guide 5
Migraine on the Job
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
Welcome to audio guide five for The Migraine Show, 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 health care professionals to hopefully have fewer and less severe headache 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 cut-throat 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 1 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 lack of shared experience. The five of six people who don’t have migraine may think migraine attacks are “just a bad headache,” and fail to understand why someone 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’d 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 are 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 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 were surveyed said. And almost one in five said they believed 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 workplace can also trigger migraine attacks or make them more frequent. The workplace set up–how you sit, stand, or move throughout your workday–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 occurs 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 resources professionals who responded to the survey, almost all (95%) said that migraine affects 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 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 The Migraine Show 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 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 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 a migraine attack and that you’ll 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 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 exercises are also beneficial.
- Ensuring there are breaks between meetings— especially important now that meetings are often via video conference that require screen time. Making sure people feel comfortable turning off the video camera instead of making eye contact with a 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 diagnoses in our Migraine Diagnosis audio guide, for treatment options, refer to our audio guides on Migraine Medical Options and Non Medical Migraine Therapies.
For more medical information and advice about your own migraine treatment speak to your doctor.
BEHIND THE MIC
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.
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.
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
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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.