I got my first migraine when I was 10, in the back seat of my mother’s Volvo. We were driving to New Haven for clam pizza, locked between exits in a mess of weekend traffic. The symptoms arrived all at once: a web of quivering lines replaced the interstate behind us, a jag of sharp pain cut across my right temple. A nausea so deep my fingers went limp.
“I can’t see,” I said plaintively, a statement that might have panicked my mother had she herself not suffered from migraines since her first period. She took me home and gave me an Excedrin migraine and a Benadryl to put me to sleep. I crawled out of bed five hours later, hair wet from the washcloth she’d placed over my eyes, thick-headed and craving water crackers. And that was it: I had migraines. I was a migraineur, the strangely fancy-sounding, technically accurate moniker for people who spend an inordinate amount of time whimpering under their duvets.
Soon after my first episode I visited a specialist, who wore owlish glasses and kept my $700 appointments to a clipped ten minutes. “You have migraine brain,” he liked to say in response to my every symptom. When I reported having lost vision entirely in one eye while driving: “migraine brain.” To the day spent vomiting every time the sun flashed through my blinds: “migraine brain.” If I started seeing big things as small, he said, that would be migraine brain. If I lost feeling in one arm and began slurring my speech — well, get it checked, but likely it would be migraine brain. He prescribed me a triptan, a blood vessel constrictor that, I later found, left the strange sensation of having a hand wrapped around my throat. But it helped: If I took the pill within the first five minutes of an episode, my symptoms subsided after a single, blind-sighted hour. For a decade, this worked: aura, pill, sleep, and then a blurry-eyed reentry into my life.
Until one morning last February, when it didn’t. I woke with a migraine, took my pill. Slept, woke still sick. The next day, the same — a blurry dissociation, a pain between my eyes. The next day, again, the day after that too. My migraine was stuck. And it would be — for the next seven months.
Migraines have an unwieldy medical history. A sketch of a rudimentary vessel constrictor was found on papyrus scrolls dated 1550 B.C., buried alongside a mummy in Thebes — healers, apparently, would wrap a strip of linen printed with the name of Egyptian healing gods (along with, inexplicably, a clay crocodile with grain in its jaws) tightly to patient’s head. A circa A.D. 300 mural found on the wall of a Roman villa depicts a handmaiden applying a poultice of honey and opium to her master’s head. Other early treatments were less gentle: Practitioners in the Medieval era were known to insert garlic into incisions in patients’ temples, drawings from Italian medieval manuscripts show doctors drilling holes into patients’ skulls to release the “bad spirits” making them sick. In 1609, the French explorer Samuel de Champlain was said to have treated a particularly painful migraine by scraping the teeth of a gar fish across his temple, hard enough to draw blood.
The medicine has progressed since the time of tombs and linen headbands, drilled skulls and evil spirits, but not as much as you might think. Almost every drug used to treat migraine between 1550 B.C. and now has been repurposed, treatments built for people with conditions that are not ours: Botox, anticonvulsant drugs, antidepressants, beta blockers — drugs whose efficacy was not intended, but stumbled upon. The triptan that kept my migraines at bay for most of my life was created in 1992, the year I was born. It was the first and, until recently, the last class of drugs ever created specifically for migraine sufferers.
This strange dearth of specialized treatment is mostly thanks to a long-standing lack of research into what happens in a person’s body during a migraine attack, says neurologist Dr. Peter Goadsby, the director of the UCSF Headache Center. Which, in turn, is due to the fact that migraines were entirely invisible until the advancement of imaging technology. “You can’t see them, which made them terribly difficult to quantify and to get people to take seriously,” says Goadsby. “You know, if you turn up to work with an ankle in a cast everyone offers you a seat and treats you like a queen for the day. If you turn up with a migraine they’ll shout at you like they did yesterday, turn the lights up, and wonder why you’re moaning.”
And as for the preponderance of repurposed treatments: Well, they’re basically just a product of how many people suffer migraines. “Some 18 percent of the population get migraines,” he says. “And naturally migraineurs get other problems. A sharp doctor sees that propranolol is helping their patient’s blood pressure and their headaches, so they do a clinical trial and soon propranolol is given out to migraineurs whose blood pressure is fine.” It’s a difficult conversation, Goadsby says, when he has to explain to his patients that there isn’t a migraine preventative made specifically for migraine prevention. “I have to say: You don’t have epilepsy, but I’m giving you an anti-epilepsy drug. Or you don’t have depression, but I’m giving you a strong antidepressant. They’re forced to choose what side effects they’d prefer from a rag-tag collection of things that are meant for something else: a tricyclic antidepressant, which might make them tired and give them dry mouth, a seizure medication called Topamax which might make it so they can barely remember what their name is. It’s a real drag.”
Targeted medication isn’t the only thing that has lagged: though migraine is the world’s sixth-most debilitating condition, only three hours are spent on headaches during four years of medical school. Less than one percent of NIH’s annual budget is dedicated to headache research — $13 million, some 50 cents per sufferer. A 2009 study that compared migraine funding to ten other chronic illnesses with similar “disease burden” — the impact of a health problem as measured by financial cost, mortality, and morbidity — showed that funding should exceed some $103 million per year.
Those first three days, I stayed home from work, sleeping fitfully through the driving pain in my forehead. When I woke, a terrible dissociation set me back from the world: from the wintery sunsets outside the window of my childhood bedroom, from the leaking bag of frozen peas I tucked under my neck to numb the ache at the base of my skull. A blinking light intermittently stole my vision, my speech grew halting and strange. Sleeping exhausted me, talking exhausted me, reading a book was impossible — I couldn’t concentrate, my mind felt unbearably slow. When the migraine still hadn’t broken after four days, I booked an emergency appointment with my doctor. He listened to my symptoms, looked at me with removed sympathy, and prescribed me a steroid pack. The appointment lasted less than 15 minutes. After six days of steroids, I was queasy and bloated, the migraine undiminished. I went back, choked with a panic I fought to temper. Another five-minute appointment. Another round of steroids. Another six days. I called. With a trace of irritation, my doctor advised me to go to the ER to get a drip of migraine drugs that can only be administered by IV. “We’d do it in our office,” he told me. “But there’s only one nurse who’s trained and she’s booked for a month.”
I went to the ER, the pain in my forehead tripling under the fluorescent lights, and received, intravenously, a cocktail of migraine drugs. A baby girl squalled beside me, only a thin curtain separating our beds, as her mother played music on her phone and ate a sickeningly fragrant container of pad Thai. When that treatment didn’t work, he sent me back. “It often doesn’t work for three or four treatments,” he wrote to me, a fact he hadn’t mentioned until that moment. Twelve more hours in the emergency room, then 24 — the migraine didn’t improve, and my forehead was so tight with pressure I was sure relief could only come by way of some gory cranial explosion. A fourth trip and the nurse couldn’t get the IV into my arm; my veins were bruised and shrank back every time she tried to insert the needle. Back into my doctor’s office, where his nurse administered nerve-blocking shots into the swollen veins at the back of my skull and I sobbed miserably onto the linoleum floor.
Two weeks later, another round of nerve-blocking shots and a five-day course of nasal spray containing DHE, a potent vessel constrictor from the 1920s. It didn’t work; my doctor suggested another round. More, more, more medication. With each failed treatment I called my doctor to ask him what was next —what the plan was, where I would go from here. He responded curtly: Take this drug, I don’t know if there’s anything else we can do at this point, please don’t call on the weekends. I am never going to get better, I wanted to scream from the depths of my increasingly unfamiliar body. My doctor suggested a spinal tap if I still had a headache in a week.
It’s difficult not to see migraine as a woman’s disease, when migraines so disproportionately affect women. One out of four women will experience migraine in their lives, three times as many as men. And every woman who has suffered migraine has a story of dismissal — of being told their headaches were a symptom of anxiety or neuroticism, of not having a boyfriend, of being unable to handle the stresses of their everyday life. This year, my mother was prescribed Klonopin for her migraines, a female friend prescribed a strong sedative.
So it’s difficult, too, not to see the lack of research into migraine treatment as a symptom of who most commonly inherits this disease.
Of course, this is not unique to migraine treatment. Women are less likely to be treated properly in general, according to Maya Dusenbery, whose book Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick, comes out this March. “Women wait sixty-five minutes to men’s forty-nine before getting treatment for abdominal pain in the emergency room,” she writes in her book. “Young women are seven times more likely to be sent home from the hospital in the middle of having a heart attack. Women face long delays, often years long, to get diagnosed even with diseases that are quite common in women. And they experience longer diagnostic delays in comparison to men for nearly everything, from brain tumors to rare genetic disorders.” She attributes these findings, largely, to the persistent archetype of the hysterical woman —which is especially present, she said, in how people view women with headaches.
“In the last couple of decades, people have stopped viewing migraines as a psychosomatic condition — the research has advanced and they’ve accepted it as the neurobiological disease it is,” she says. “But still, even with all that progress, it’s treated as minor affliction. Still the stereotypes associated with it — that migraine sufferers are hypersensitive, whiny women — persist.” Dr. Alexander Mauskop, the founder of the New York Headache Center, confirms this assessment. “The lack of research throughout the 20th century — it’s because people, then and now, underestimated migraines. They thought that it was a disease of neurotic women.”
Four months after my migraine hit, I went to a new doctor. A woman, who suffers migraines herself, whose mother suffered migraines so painful she’d have to stay in her room for whole days at a time. That first appointment lasted an hour — she walked me slowly through my entire migraine history: a lifetime of minutiae filled, it suddenly seemed, with clues for treatment. And then we developed a plan. She told me to only to take as-needed medication twice a week, when my headaches were particularly painful, so as to avoid rebounds. She focused on prevention, instead — she put me on Effexor, an anti-anxiety medication that has some demonstrated anti-migraine properties. She suggested I cut out sugar from my diet. She told me to take daily magnesium, and vitamin E the week before my period. And she told me that if all that didn’t work, then we’d go to the next thing. Not right away. “There’s so much we haven’t tried,” she said. “And the nice thing about migraines is that they usually go away.”
When the pills didn’t decrease my headaches substantially after a month, she recommended Botox, a (yes: stumbled-upon) FDA-approved treatment for chronic migraine that entails 35 shots of the toxin to the head, shoulders, and neck every three months. The injections work by relaxing your scalp muscles — and possibly by reducing the firing of the sensory nerves in the brain. The first round didn’t help. The second did. And finally, after some seven months of near-daily headaches, I experienced relief. My headaches dropped from 25 days a month to 15. A month later, to 10. Then to 5. Sometimes fewer.
This year, the second-ever treatment created exclusively for migraine — the first-ever migraine preventative — will be released. It’s a single shot composed of a specially created antibody that targets a neurotransmitter called CGRP, which has been shown to spike in patients in the midst of a migraine. The injections modulate patients’ CGRP levels to prevent attacks from happening, instead of treating them once they’ve already begun. The trials have been overwhelmingly successful — in one, patients with an average of eight monthly migraines found their episodes reduced by almost four migraine-days a month by their fourth month of receiving the injections. The trial, it should be said, was aided by a powerful placebo affect: Patients who received the placebo had a reduction of some 1.7 migraine days a month. But still, the results are meaningful. “Because of the lack of research, because of the lack of technology,” says Goadsby, “we lacked a specific target to focus on. We couldn’t say, well, migraines cause X and therefore we will block X and migraine will get better. And that’s what the CGRP is. If you block it, in people who respond, you’ll block their migraines. We never had that before.” And, he says, “Soon we’ll be able to say to our patients: You have migraine, you have a lot of migraine, we’re going to give you something to prevent migraine. And what it’s called is a migraine preventative.”
The very release of the drug does feel complicated — enraging that it’s coming so late, a relief that it’s coming at all. But mostly: It’s nice to feel heard. My doctor told me a story a couple of weeks ago. I laid on the table squeezing pressure balls as she tucked my hair behind my ear to inject a shot of Botox into my temple. “A patient came in recently,” she said. “I asked if she had a history of migraine. She said no, but then she thought about it a little more and said — well, my grandmother used to have to go lay down during almost every family event. But we just thought she was antisocial.”