For those who don’t experience them, a migraine can still seem synonymous with a headache, or at least a bad headache. They’ve been dismissed by doctors for centuries, and it was just this spring that a migraine-specific medication called Aimovig was approved by the FDA. But at $575 a treatment, or $6,900 a year, very few migraine sufferers will be able to access the drug.
Migraines are thought to affect some 39 million Americans, most of them women — 18 percent of American women say they suffer from migraines as opposed to 6 percent of American men. And yet very little money is dedicated to researching the illness: less than one percent of the NIH’s annual budget is dedicated to migraine research.
Here, we asked seven women what migraines are like for them: what they feel like, how they disrupt their daily lives, and what (if anything) makes them go away.
“I get migraines at least once a month, and they always last 24–72 hours. They started in college and have gotten worse over the years. I get pain in my neck, teeth, the feeling that my head is pulsing. I don’t get the same neurological issues like an aura or loss of vision that some migraine sufferers do. I’ve been able to tie at least some of them to my hormone cycle — I used to take Yazmin for birth control, but missing my pill for even a few hours triggered a serious headache, and missing it for a full day would mean a migraine. The IUD made things better for a few months, but when I approached the two-year mark, the hormones became more irregular and I had migraines like never before. I was prescribed Immitrex for my migraines, which restricts the blood vessels in your brain. You have to take it the SECOND you feel a migraine coming on to stop it. It does get rid of the pain, but makes me miserable: nauseous and woozy.
“I’ve missed countless events with family and friends as a result of my migraines, and it definitely uses up at least a third of my sick time at work. I would do almost ANYTHING to stop them and have conducted all kinds of little experiments on myself to try to get to the root of the issue. Sometimes I feel a little disabled by it.”
“The first time I got a migraine was in ninth grade English class watching the Armando Assante version of The Odyssey, and I couldn’t figure out why I was looking at the TV but not really seeing anything. Typically I get them in the fall and spring. I attribute this to the change of seasons triggering allergies and increased sinus pressure, but that’s just a theory.
“Since I was 14 I’d say I’ve gotten a handful of migraines (two to four?) a year. The first thing that happens to me is a little sensitivity to light — it flickers in front of my eyes, and then the aura starts. For me, the aura is kind of like when you look at fluorescent lights and then look away and there are blotches in front of your eyes. There usually isn’t pain at that point, but as soon as it hits I am essentially incapacitated — it might obscure one entire eye’s field of vision, or all my peripheral vision in both eyes. When it happens, I typically feel a little scattered and it’s hard to focus. I usually get them mid-morning, so if I’m at work I wind up turning off my lights and sitting in the dark. Light bothers me, so I can’t work or do anything on the computer. I just have to wait, and usually my boss tells me to just go home. Sometimes I can head it off if I drink a lot of water, or have a little caffeine, or sit with my eyes closed and sunglasses on, but usually once I get the aura, it’s inevitable. The only thing that helps then is falling asleep, or sitting with my eyes closed for a very long time. I think pain-wise, my migraines are on the milder side — but the aura is completely debilitating. I can’t work, drive, or be anywhere with bright light.”
“It always starts with a darkness creeping in on the edge of my vision, like sand covering my eyes, and then wherever I try to look, there’s a blinding brightness. If I don’t immediately lay down in the dark with a sleep mask & earbuds, it’s followed with nausea, crippling feelings of sadness, and extreme pain that seems to come from the depths of hell. It’s part of why I’m self-employed.
“I find that drinking more water, exercising regularly, and getting enough sleep seems to keep them in check for the most part. When they come on, though, I reach for the Excedrin Migraine, the sleep mask and crawl into bed with a heating pad held close for comfort, and just hope it passes. I’d say I’m lucky in that I only get them about every month or two. I used to drink a lot of diet soda & when I did, I got them more frequently, which I assume should have alerted me that my body REALLY doesn’t like aspartame, but my tongue really liked Diet Coke. Since switching to water exclusively outside of my morning coffee, they’ve calmed down a lot.
“I know this sounds really bizarre, but there’s a fragrance note used by some smaller perfume & candle companies (like Black Phoenix Alchemy Lab) that’s referred to as “ozone,” and every single time I smell that, there’s a migraine that follows shortly after. It’s the same with most things that are “apple cinnamon” scented. Beyond that, changes in weather are a big one. I’m in Houston, Texas, and I’m used to the humidity as a result, but there’s some days when a rainstorm will form out of nowhere and it just lays me out flat.”
“For me, the head pain is the least of my concerns. It’s the light hurting my eyes and constant throwing up that is most impactful. In fact, yesterday, after day two of a migraine, I almost ended up in the ER from dehydration. I think what most people misunderstand is that they think it is just a bad headache, when really it can affect every part of you — like not being able to use my phone or watch TV because it’s too bright or loud, or not keeping food or water down all day.”
“I’m from the Philippines and I noticed that I’m more prone to migraines back home because of extreme heat and dehydration. I’m a filmmaker, and it often happen on set, high noon, after hours of working really hard. I also experience it after a long night of drinking (usually wine). It’s really tough — it’s a deep and sharp pain that lasts until I take some strong pain killer and sleep it off. I can’t function; all I can do is close my eyes and fall asleep (at best). I have to concentrate really hard so that I can “distance” myself from the pain, but it doesn’t help that much. People don’t really understand how bad migraines are and I’m amazed that only a few people get it.”
“What I find triggers my headaches is when my back doesn’t have good support. For example, the uncomfortable chairs we sit on at work. With respect to my boss, we have very cheap chairs. I usually get migraines on Fridays, because it’s the day I work from 9–6 and it’s busy, and I mostly do all the job as a receptionist.
“It feels like a bubble in the upper middle part of my spinal cord. I just want to crack it, but it moves up my neck and then the migraines start. Last time my neurological migraine lasted for two hours: I was blind in my right eye for an hour and a half, had loss of speech. I wasn’t able to speak properly. I texted my friend to tell her that I was going to the hospital, and when I read my texts the other day, I didn’t write real words, and I thought I had corrected them.
“At the hospital, the doctor said I had a neurological migraine. He told me next time it happens to take Tylenol. They checked if I was pregnant, did a brain scan, and checked my balance, my neck, and my heart. I am still waiting for a call back from a neurologist.”
“Migraines are an uninvited guest in my life. There is a lot of shame attached. Stigma. Non-migraineurs will never understand how awful migraines can be for those who suffer. You feel disappointing and weak when you have to cancel plans because of a migraine. I am now self-employed, but I used to be a professional librarian. I felt a lot of guilt on the days I just couldn’t go into work. I’ve been called into HR offices, and told I am an exceptional employee, but the migraines, the sick days…
“My experience has also been isolating. You feel a kinship when you meet someone else with migraines, and you feel blessed if you have loved ones who support you. It is so hard to explain what they feel like. The best case for a migraine: a splitting, pounding, and simultaneously throbbing headache. Worst case? Visual migraine, aphasia, vomiting, nausea, dizziness, sweating, or chills, extreme pain, sore neck, extreme sensitivity to light and sound, just to name a few. After a migraine? Pure exhaustion.
“Sometimes I feel down because I feel like my migraines are ruling my life. I have such gratitude for days I feel good. I want to squeeze every moment. Migraines mean I fight hard to live my best life. I try hard not to miss things because of a migraine. I forgive myself, I push away the guilt when I have to succumb to the pain. I would never wish this on anyone, but I do wish people understood more that I don’t just have a headache.”