4 People with Chronic Migraine Share Their Stories

What do you wish you knew before being diagnosed with migraine?

Nate Schreck: I wish I knew how long the journey would be. Obviously, when I was 10, I didn’t really know the scope of what was going on. But as migraine turns out to be for a lot of people, it’s sometimes an intractable illness, something that you live with daily.

I’ve negotiated it down from there a little bit [to having] several days a week when I feel completely fine and there’s no headache. But I didn’t really understand the scope of what I was going to be going through and how debilitating the disease could truly be.

Angie Glaser: I wish that I knew migraine is genetic, and these migraine attacks don’t mean that I’m weak or I can’t handle stress. They’re simply a manifestation of a condition that I have some control over but not all control over. My brain just works differently than most people.

Even when I’m not in the throes of a terrible migraine attack, I’m always more sensitive to light, sound, movement, and smell. A lot of the time that sensitivity translates to pain.

But I’ve also learned that it gives me some advantages. I’m really fast and efficient at work, even when I’m dealing with brain fog. And I’m really good at birding because I notice lots of sounds and small movements in trees and I can recognize the quiet bird sounds.

Understanding how my brain works has really helped me as an adult to understand and accept my limitations and also be more successful even with this chronic pain condition.

Jaime Sanders: I wish I knew that I could still have a fruitful life. It was difficult. I was diagnosed at such a young age. I was 8 when I was diagnosed, and I was also given this false hope that my adulthood would look different without migraine. I was told I would outgrow it. So there was this sense that I would have normalcy in my adulthood, which obviously is not what occurred.

I wish I knew that there was still value to me regardless of my diagnosis and that I am not my diagnosis. It took me a while to learn that I’m not my symptoms, and I’m not my disease. I wish I knew that I could still have a fruitful, lovely, beautiful life despite the pain because it felt like I wouldn’t be able to accomplish much living with migraine.

Deborah Turk: I wish I knew my family had a history of migraine. It was astounding. I had no idea. No one ever talked about it until I started talking about my own experience. I learned I had multiple family members who lived with migraine.

I wished I’d known about chronification. It’s the process by which episodic migraine transitions to chronic migraine. It can be caused by overuse of pain relievers. At one point, I was taking an over-the-counter headache medication almost daily. I don’t know that I could’ve prevented chronification, but I’d like to have known of the concept.

What’s something people can do to help those living with migraine?

Nate: As compassionate as it is to try and be relatable and say, “Oh, I’ve had a migraine before,” and suggest remedies, that’s not always the most supportive thing people can do.

There’s a running joke in the migraine community that you’ll tell someone you have chronic migraine, and they’ll say, “Have you tried peppermint oil?” or “Have you tried this remedy?” While those are incredibly well-intentioned things to do, they can come across as dismissive and infantilizing of the journey that people have taken.

Angie: Do some basic research, ask questions, and give that person grace. If they have to cancel or modify plans, please know that it hurts them much more than it hurts you. We do not want to have to do that. We would love to be functional and be there. So give us the benefit of the doubt when we say we can’t perform normally.

Please do not offer advice. If [we’re] not asking for advice and [we’re] constantly getting it from all these different avenues, it can make us feel like you think we’re not doing everything we can. Trust that we are doing everything we can.

Simply ask, “How are you doing? Have you found something that helps?” That’s a much more supportive conversation because there’s honestly not a simple solution.

Jaime: Listen, don’t judge, and learn. I think it’s important for people to educate themselves about what migraine disease is. It is more than just the head pain — it is a whole-body disease. It affects so much. The condition is not a reflection of the person.

Deborah: Educate themselves. There are so many misconceptions about [chronic migraine]. And so if you educate yourself about the condition, especially if you have someone in your life with it, then you’ll be more prepared to support them in a way that’s actually helpful, and you can help educate other people about the condition.

Ask a person living with migraine what you can do to help them. Most people just don’t think to do that. They’re like, well, I don’t want to get in their business, or I don’t know what to say to be helpful.

A lot of people with migraine are so used to people not being there to support them, that they’re not going to ask people for help with certain things. They tend to suffer in isolation.

You [can] just straight up ask a person, “What can I do to help you? What would be helpful to you?” That direct question would be super helpful.

What’s one thing people always misunderstand about migraine?

Nate: I think people misunderstand how holistic it is. It affects a lot of different parts of your brain and [ability to think], but it also affects your whole body. It can make you fatigued physically. I cannot walk as fast as I can when I feel well.

Migraine attacks can come in waves. It starts off really intensely and maybe you can take some medication that kicks it down a little bit. But after 8 hours or so after the medication wears off, it can spike back up. It’s almost like a fluid thing in an attack where you’re constantly fighting it. It’s affecting not just your head but your entire body or your entire cognitive system.

Angie: The biggest misconception is that migraine is a headache or a minor inconvenience that pops up and it goes away with Tylenol and a glass of water. That is not true. Migraine is a neurological condition, and for most people, migraine attacks are disabling.

For me specifically, these neurological symptoms are more disabling even than the pain itself. A migraine attack makes me really sensitive to light, sound, and movement. I wear sunglasses outside, always. I wear blue light-blocking glasses if I [need to use] a screen.

Even then, I sometimes still need to go to a completely dark, completely quiet room because the sun is just too bright. And then along with those neuro symptoms, it also affects your digestive system. During an attack, your stomach can actually stop digesting. So that can lead to some nausea, vomiting, constipation, and then there’s dizziness and crushing fatigue.

Brain fog is really tough to deal with, and it manifests as difficulty concentrating and remembering and recalling words.

[These symptoms] can last for hours, sometimes even days. Folks who are on the really severe end of the spectrum, like myself, deal with some degree of symptoms all the time. So it’s very impactful.

There’s also an emotional toll. Anxiety, depression, and insomnia are all really common with migraine. We can feel guilty that we can’t show up the way we want to. We’re worried about the next attack. When’s it going to hit? Is it going to come at a really bad time? Some of us just kind of stop making plans altogether, and our lives can get really small.

Jaime: People misunderstand migraine so much. There’s so much stigma surrounding migraine that it’s just a headache, and it’s something that has a cure, which it does not. I think that’s a big misunderstanding. Migraine disease does not have a cure.

Migraine disease affects everyone who lives with it very differently. There isn’t a cookie-cutter therapy or medication that’s going to relieve everyone of their symptoms.

Deborah: Most people don’t understand that it is a whole syndrome. Yes, I do get head pain, but my biggest symptom with migraine besides head pain is fatigue. Most of the time I’m fatigued, and it’s overwhelming and that affects everything in my life.

So there’s not some magic [solution], like oh, I stay away from chocolate, I stay away from wine. A lot of people think that those little simple things [work]. No. It’s much more complex than that.

On top of that, migraine switches up on you. So let’s say you’re operating at your optimal level, and then in 5 years, the stuff that used to work for you can stop. So now you and your team are trying to figure out, oh goodness, what are we going to try next?

One time, on my page, Her Migraine Life, I put a guinea pig for my profile picture because that’s how I felt — like a guinea pig.

Who is your biggest advocate?

Nate: Definitely my mom. Being diagnosed so young and having to deal with pediatric migraine is a completely different experience than I think a lot of people’s. And I’m very fortunate that my mom has been there. She would have a binder full of stuff with all my medication and all the questions to ask to bring to doctor’s appointments.

Beyond treating and combating the condition, she’s helped to set me up with a lot of my larger advocacy opportunities like Headache on the Hill. We also talk about advocating for myself to professors or teachers so that I can get equitable care and access to education. She keeps me very focused within some of those smaller levels of advocacy too, which I would say are equally as important.

Angie: I am my own biggest advocate. It’s been 10 years of chronic migraine, and I’ve seen dozens of healthcare professionals and tried dozens of treatments. After spending the better part of 5 years or so in a dark room, I now have a very strict morning routine. I get out of bed every morning regardless of how I’m feeling — to try to meet my appointment with life, to quote my meditation teacher.

Part of advocating for myself is surrounding myself with people who understand me.

When my migraine attacks first became chronic, I was in my 20s working as a park ranger. I had a really active life, and I was trying really hard to keep up with people who didn’t have chronic illness, who were staying up late and drinking and hiking in the sun. I got to a point where I realized I was spending too much energy trying to keep up with these people, and I needed to put myself first.

So I refocused my social energy on my family, who has always been very supportive, and the online migraine community, which has been a huge, huge help for me. Thanks to my work on Migraine Again, I’ve connected to a lot of people. I have a fiance who really understands me, really helps me, and doesn’t pressure me to do things that I might have to pay for later.

I’m also so lucky to have a job in the migraine space, so all of my coworkers understand me. Feeling like I’m supported at home, at work, and in my social life is the biggest way I think I advocate for myself, putting myself first in a way that I didn’t before I had a chronic illness.

Jaime: My biggest advocate is myself. I think self-advocacy is very important. In order for me to get the results I’m looking for in my medical journey, I have to advocate for myself and others in the ways that I need them to show up and support me.

Deborah: Me, but that’s not always been the case. It took me time to get here. Once you start to educate yourself about your condition, then you can start to make decisions about your care and where you need to be.

But it’s still smart to join a migraine community in some fashion. We call it a tribe. It’s great to have a tribe because, really, no one understands us. Unless you have this condition, you’re not going to 100% get it. [Even if] you can try, you can mean well, and you can be very helpful.

Bing your own number one advocate is important because if you’re not, no one’s going to do it for you. If you’re not advocating for yourself, you’re not going to get the care that you need.

How do you practice self-care?

Nate: I think it’s really hard to be honest. The thing that I try to do the most is take 5-ish minutes a day to decompress. Not just decompressing where I’m on my phone, but actually taking the time to understand how I’m feeling physically and mentally and just holding space for that. Where it’s OK to not be feeling well. I need to recognize that and give myself the chance to just decompress and take some time for myself.

Angie: I treat my brain like a newborn baby that is prone to having meltdowns. I make sure that every few hours it has rest, it has water, it has a break. Rest is nonnegotiable.

And I also practice mindfulness, which I will admit was very difficult at first. I have some degree of pain all of the time, so my brain and my body aren’t always the most fun place to be, but I can’t escape it. So mindfulness meditation has really helped me create a space within myself where I can feel comfortable even when I’m in a lot of pain and kind of reduce some of that panic.

I also try to move my body every day, simply go for a walk every day. If I’m too sick to leave my house, which sometimes happens, I will just stretch or do simple yoga.

I learned the hard way that spending a lot of time in bed without moving your body can actually lead to more chronic pain than keeping up with gentle movement. So I try really hard to move in some way every day.

Jaime: I do a lot of self-care. It’s so important to remember that my needs are important and that they come first. I can’t fill from an empty cup and my cup is empty a lot of the time. So I have to fill that in ways that will benefit me the most.

For me, self-care is watching my favorite movie. Self-care is reading a book. Self-care is doing guided meditations and deep breath work. Self-care is taking myself to get a facial or a massage when I’m able.

And self-care also includes for me taking care of my mental health. That’s very important. So keeping up with my therapy, my CBT [cognitive behavioral therapy], managing my medications, and making sure my mental health is in a good place, is a form of self-care as well.

Deborah: Mental health. Migraine has a high association with depression, and other people have other comorbidities that are physical and mental. I do deal with depression, and then there’s also stress and a level of anxiety that can come. Even though I don’t have [a formal diagnosis of] anxiety, I do get anxious sometimes because the condition is unpredictable. So best-laid plans sometimes mean nothing.

It can get to the point where you’re lying in bed for the third day in a row, and you’re thinking of everything that you need to do that you have planned, you can start to get stressed. You can start to get anxious. So that’s what I mean when I say I work on my mental health as much as my physical health. Not letting myself wallow, thinking about all the negatives and turning my thinking around and things like that. [It’s] learning to fill my mind with positive things and not catastrophizing.

A lot of times we torture ourselves and are hard on ourselves because we think we should be operating at a higher level. So I recognize radical acceptance. There are just some things that you can’t change. So for me, I recognize my limitations.

In the support group that I co-facilitate, we have made guilt a bad word. How are you guilty about something that’s not your fault? It’s not our fault. And like I say, when I need to rest, I rest. When I need to say no, I say no. And there’s no guilt involved.

Is there anything else you’d like to share?

Nate: There is such an intense stigma around everyone with migraine that the side effects of that can almost become worse than the disease itself.

There’s a really gross misunderstanding about what migraine really is and how it affects people, especially people that it affects every single day. A lot of the time when you have [an attack], you’re alone in your room, the lights are off. It can be a very depressing feeling.

There’s a level of solitude that’s not always talked about within the migraine community, but I think it needs to get attention because that can be really debilitating and hurtful as well, where you feel like you’re in this fight alone. Because truly, if I’m lying in my bed for 2 days [with a] migraine, I feel very alone.

Angie: I have [fewer] functional hours and less energy than I did before my migraine attacks became chronic. And I really try to make sure that those hours are spent with people, and doing things, that nourish me.

My social circle is smaller, but everyone in it really understands me. It really, really goes a long way if I have to cancel, for example, simply saying, “I’m sorry you’re hurting. Take the time. Let’s reschedule.” And sometimes I have to reschedule a lot of times. So surrounding myself with people who don’t judge is a really huge way I practice self-care.

Jaime: Probably the most important message I like to convey whenever I’m speaking to people is that they are not their diagnosis. You still have value and still have worth in life despite having chronic migraine.

Your wins may show up a little differently, but it’s important to change your perspective a little bit and focus on what you can do, give yourself grace, and know that you are doing your best despite having a very debilitating chronic pain illness.

Deborah: Be a migraine advocate. We need all the advocacy we can get. So anybody can be a migraine advocate, anybody.

There is a severe shortage of headache specialists, and headache diseases receive a fraction of the funding necessary for research. Advocates are needed to bring awareness to those facts. Advocates can help organize educational or community events and participate in walks/runs to fundraise for research and education of migraine doctors.

I remember when I first started to become active in advocacy. I was the director of Miles for Migraine, and someone said I was a migraine advocate. I was like, I am? I thought being an advocate meant something really big and official, and it’s not. It can mean just wearing a t-shirt that says, “Migraine Warrior.” I remember wearing stuff outside and thinking to myself like, “Oh, please let somebody ask me a question. Please let somebody ask me a question.”

Becoming a migraine advocate in any facet will help those living with migraine.