(Fasten your seatbelts, y’all. Feel free to sit this one out if you’re not a fan of the medical stuff!)
I remember my very first migraine. It happened in the second grade; I was eight years old. I got off the bus in the afternoon and cried about having to cancel a play date with a friend, but my head hurt too much to do anything but lay on the couch with an ice pack placed directly where it hurt.
Luckily, I don’t recall any experiences from before my middle school years as vividly as that one, so I am left to assume that ages 8-12 were relatively migraine free. However, as is the case with many young girls and women, once they start getting their period, migraines set in as well. In middle school and through much of high school, the attacks were few and far between, with more than a month in between. But when they hurt, they HURT. For the most part, they would follow a pattern: set in during the afternoon, struggle through a night of bad sleep, sit through a full day of continuous searing pain, go to sleep positively exhausted, and wake up the next day with the pain mercifully gone. Excedrin did not help; indeed, the concentrated amounts of caffeine just made me jittery and extra nauseated.
I finally addressed it with my pediatrician for the first time when I was 17, nearly a decade after my first migraine.
“I’ve tried Excedrin, but it doesn’t help. It just makes me feel sick,” I remember saying to her.
“You only want to take Excedrin for real migraines,” she said to me.
I was taken aback. “They are real migraines.” I had done extensive googling on the subject, and it didn’t take a medical degree to know that I pretty much followed a textbook list of symptoms: severe pain typically concentrated to one side (mine is always on the left, directly on the temple), a lack of appetite, nausea, visual disturbances called aura, fatigue, brain fog. I knew I was experiencing “real migraines.”
She sent me out of her office with instructions to take four ibuprofen as soon as I felt it coming on, and to try to get enough sleep.
“Well,” I remember thinking, “that’s certainly the last time I bring that up.”
This strategy worked for the last year of high school and the first two years of college. By then, my migraine attacks were becoming more regular, with one or two each month, always during the same calendar week. I started to take the birth control pill because I thought maybe regulating hormones would help. It didn’t, but I kept taking them because it made everything else more bearable. I figured, though, that four-ish migraine days a month, no matter how miserable, weren’t really enough to warrant extra care. It was just something that I had to deal with, and push through.
During my first routine visit with my gynecologist, though, she intently looked over my chart with my medical history, and I felt nervous by her scrutiny.
“Wait,” she said. “You have migraines with aura AND you take the pill?”
I sure did.
Unfortunately, she told me, that both of those things increase my risk of stroke, and combining them together was even more risky. She sent me straight to a neurologist for consultation.
I went into my first neurology appointment feeling both nervous and resigned- I made my mom come with me because I knew she understood my symptoms and patterns after the years of complaining to her. I was not optimistic that I’d receive any care beyond “four ibuprofen and a nap,” but I also didn’t want to have a stroke at the tender age of 20.
My neurologist is a young woman, a nurse practitioner. To my surprise and delight, she listened to me fully. She said to me, “you’re absolutely right, these are migraines!” Music to my ears. She proceeded to ask me if I had done any research on medication and treatment options. I told her, I didn’t think we’d make it this far.
I walked out of that first appointment with an actual prescription for an actual migraine medication, a rescue treatment. The first one we tried didn’t work that well, so we tried a second one, sumatriptan. It makes me fatigued and foggy, but it gave me my life back. A switch to a safer birth control option for me, however, brought on worsening migraines, in both severity and frequency. I luckily never became chronic, with 15 or more headache days a month, but some months I was experiencing up to 12. Especially over the summer, when the sun was blaring and the air was thick, I was riding the struggle bus, constantly feeling like I was in a sumatriptan fog. But I still felt that, because I wasn’t chronic, I wasn’t really a candidate for preventative treatments, or that the side affects wouldn’t necessarily be worth it.
I went back to my neurologist, again feeling resigned, in August of 2019.
“How about one of the new drugs, the CGRP inhibitors?” She was referring the new class of drugs that had just in the course of the last year come on the market. I looked at her quizzically; I had heard of them, but I thought that I wouldn’t qualify for treatment or they’d be too expensive.
“I don’t know, I just feel like I’m not chronic, and I’m worried about cost, and-”
“Lilli, it’s not normal to be having nine, ten, or eleven migraine days a month. The normal number is zero. You have plenty of headache.”
I had plenty of headaches. The pain I went through was not normal. Most people don’t have to just push through migraines. These thoughts hit me, all at once.
I told her I was nervous. That it wouldn’t work, or my lackluster-at-best insurance benefits won’t cover it. She filled me in on various programs the manufacturing company has in place to make it more affordable, and that she and the team would work with me, no matter what.
“We won’t give up. So you can’t either.”
And she wrote my prescription.
I am not even slightly exaggerating when I say that this drug has changed my life. With one auto-injected shot each month, I have been reduced to one singular migraine day a month.
I forgot what it was like to not wake up each day and immediately assess what kind of pain I was already in. I forgot what it was like to not plan my day around rationing my rescue medication, and how I would change my day’s plans if a migraine came on in the middle. I forgot what it was like to not cancel on my friends, or avoid sugary drinks. I forgot what it was like to be constantly anxious about being in pain, because at times, the anxiety was worse than the physical symptoms.
I’m not cured, but I’m happy.
I think there are a few reasons why I wanted to share a mega-condensed version of my decade long migraine story, aside from loving attention. I learned so many things from dealing with my migraines:
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Access to doctors is such a privilege for me, and I know I’m extraordinarily luckily to have the care that I do. But my pediatrician didn’t listen to me, didn’t validate my pain. And that, I know now, wasn’t okay. Advocating for my own health is difficult, and I’m still not great at it. But having a doctor who would advocate for me was incredible, and it started with her believing me, and validating the pain I was in.
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It’s okay to take things slowly, cancel plans, or ask for an extension on an assignment, because of the pain I’m in.
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There is an entire community of people who experience similar things that I do, who celebrate successful treatment with me, offer me comfort on rough days, and extend advice when I’m in need. I can lean on them, and solidarity is everything.
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I deserve pain free days, and I am worthy of the treatment that got me there.