To be clear: A migraine is not a headache, and people with migraines don’t like their condition being called one. It’s not that headaches aren’t part of a migraine: They are. But a headache is a single symptom of a multifaceted neurological disease — one that includes loss of vision, intense nausea, and sensitivity to light and sound. And those are just the common side effects. Some sufferers find themselves yawning compulsively, slurring their speech, and losing sensation on one side of the body. Some migraineurs (yes, that is the technically accurate moniker for migraine sufferers) start seeing big things as small — a side effect dubbed “Alice in Wonderland syndrome” by doctors.
Nonetheless, for as long as they have existed, migraines have been trivialized as headaches or dismissed altogether. Which is clear when you look at the treatments available: Almost every drug used between 1550 B.C. and today has been a repurposed one. Poultices of opium and honey, botox, anti-convulsant drugs, antidepressants, beta blockers — drugs whose efficacy was not intended but stumbled upon. Triptan, a class of vessel constrictors created to abort and lessen the effects of (not prevent) attacks at their onset was released in 1991. It was the only class of drug created specifically for migraines — that is, until now. On May 17, a preventative drug called Aimovig, 30 years in the making, gained FDA approval; it’s a monthly shot that modulates patients’ levels of CGRP, a neurotransmitter whose levels rise during migraine attacks. This means that it is days away from getting in the hands (or arms — it’s an injectable) of migraineurs. At at least for those who are able to pay full price: The drug costs $6,900 a year, or $575 per treatment.
That it took until 2018 to produce a drug that could help up to 39 million people in the U.S. alone — 18 percent of all American women, 6 percent of men, and 10 percent of children — is mostly due to a long-standing misunderstanding of what happens in a person’s body during a migraine attack, says neurologist Dr. Peter Goadsby, the director of the UCSF Headache Center. Until the advancement of imaging technology in the 1990s, migraines were entirely invisible. But it also has to do with the fact that women most commonly inherit the disease. One out of four women will experience migraine in their lives, three times as many as men—likely because hormonal fluctuations are a major migraine trigger. “The lack of research throughout the 20th century,” says Dr. Alexander Mauskop, the director of the New York Headache Center, “is because people, then and now, underestimated migraines. They thought it was a disease of hysterical, neurotic women.” Only three hours are spent on headaches during four years of medical school. Less than a one percent of the NIH’s annual budget is dedicated to migraine research — $14 million, some 36 cents per sufferer.
That the medical community has (finally) effectively responded with a preventative, targeted treatment is incredibly good news to migraineurs everywhere. Still, there’s work to be done. “Many doctors — doctors! — still believe it’s a stress-related problem,” says Mauskop. “It’s a brain disorder. Period. And it’s important people think of it that way.”
A Migraineur’s Medicine Cabinet of Curiosities
The new preventative injectable medication is only for patients with frequent migraine. So here, the seizure meds, antidepressants, and cold cans of Coke that other sufferers have long been forced to turn to.
“I take gabapentin, a seizure medication, every day, and when I get a migraine, I take a triptan with coffee and two Advil and try to pass out as quickly as possible before I start throwing up. I used to take beta blockers — a blood-pressure medication — which didn’t work. I’ve taken nortriptyline, an anti-depression medication — that did very little.” —Zoe Raduns, migraine without aura
“I take 60 mg. of antidepressant nortriptyline in the morning and 360 mg. of the blood-pressure medication verapamil at night. I do 200 mg. of vitamin B2 twice a day and also take a daily pill of turmeric, which has anti-inflammatory properties.” —Grace Gold, chronic migraine
“I take an ibuprofen suppository that has to be created specially by my pharmacy — if I try taking any pills, I throw up. It’s 500 mg. and torpedo-shaped.” —Ethan Raduns-Silverstein, migraine with aura
“I used to get four migraines a month. They were super-intense — I started getting them when I was 10 years old. I would get visuals, then vomit, and then sleep about 12 hours. Then I got my daith — my inner ear — pierced, which I’d heard helped. The piercing worked for me almost immediately — I heard about it from a friend. I got it done two years ago and have only gotten about 15 migraines since.” —Grace Noe, migraine with aura
“Once, during one of the worst migraines I’ve ever had, I took two Tylenols, drank a big glass of water, and shotgunned a freezing cold Coke. I swear I felt 98 percent better in ten minutes. I was wide awake after that, but since the pain was dulled, I was able to relax.” —Amy Pedulla, migraine without aura
Now (Finally) an Official Way to Prevent Migraines
It took thirty years. Now it’s here.
The news that the first drug, Aimovig, created to prevent migraine was approved by the FDA was announced late on a recent Thursday evening. And the migraine community — those who’ve long relied on vitamins, repurposed drugs with unpleasant side effects, and Eastern medicine (or some combination thereof) to manage their symptoms — was thrilled. Cautiously. “I cried,” said Wendy L., a long-term migraine sufferer. “But only a couple of tears, because I didn’t want to trigger a migraine.”
The drug takes the form of a single shot composed of a specially created antibody that targets a neurotransmitter called CGRP, whose levels spike in patients in the midst of a migraine. The injections modulate patients’ CGRP levels to prevent attacks from happening, instead of treating them — like Triptans do — 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 half by their fourth month of receiving the injections. The trial, it should be said, was aided by a powerful placebo effect: Patients who received the placebo had a reduction of some 1.7 migraine days a month.
So why did it take 30 years? For one, because back in the ’80s — when researchers Peter Goadsby and Lars Edvinsson initially discovered the relationship between CGRP and migraine — the medical community believed (incorrectly) that it was instead a neurotransmitter called Substance P that was responsible for migraine pain. “Substance P was very popular at the time,” says Goadsby. “So our research was regarded as — well, sort of nice, but not terribly important.” Still, Goadsby and Edvinsson forged ahead, and in 2004 they oversaw the development of a drug that blocked CGRP. “It was tested in patients that year,” says Edvinsson. “And was found to have fabulous effects against acute attacks of migraines. Only then did the drug industry, and everyone else, change focus.” A final hurdle came in 2009, once the drug had gotten to phase three of testing for FDA approval: Thirteen patients in the 1,200-person trial were found to have elevated liver enzyme counts. The trial was terminated, and the drug companies were forced to start from scratch. Which they did. The liver issue was sidestepped. “They changed the chemical structure of the it,” says Edvinsson. And it made it, once again, to stage three — and then on to approval. The fact that Aimovig works (and works well) continues to amaze Edvinsson and Goadsby both. “I’ve had patients who have gotten a single treatment and then didn’t get any more migraines,” says Goadsby. “Full stop. And then we saw them after six months, nine months, 12 months. And still no headaches.” Plus, he adds, the drug is taken monthly in a single shot, and has no side effects — a nice plus for patients accustomed to weight gain and nausea from antidepressants, forgetfulness and dry mouth from anticonvulsants, or the discomfort of receiving 31 shots of Botox to the head every 12 weeks.
Since 2013, four companies have been jockeying to get their version of the medicine on the market; Amgen and Novartis got in first, Lilly, Teva, and Alder are expected to announce FDA approval for theirs in the New Year. The issue now is accessibility: The first version of the drug is expensive: $6,900 annually, $575 a treatment — the others are likely to be priced similarly. And it’s still unclear whether insurers will pay. The process has been complicated, says Goadsby. But the drug is simple. “It’s the first time we have a migraine preventative for migraine patients,” he says. “And it works. And it’s really well-tolerated. There’s no penalty to taking it: You get better. That’s it.”
And Someone Who’s Already Tried It …
“I started the trial in 2014. I found out about it through a friend who is a research nurse. I’d been getting daily severe headaches essentially since I was 9 years old. They’re hereditary: My grandfather was actually trepanned, which means he had holes drilled in his skull. I’d just had to resign from my job at the Parks and Recreation Department, which I loved, because my migraines got too bad. I’d tried everything for them: I had a hysterectomy, because my migraines were so severe around my period. I was going to the ER twice a month for an IV infusion for the pain and nausea. Then I did Botox, beta blockers, antidepressants, all the anti-seizure medications — nothing worked. The Triptans I took as needed did help reduce the migraine, but they cause rebound headaches.
The first trial I got into was a double blind, so I didn’t know if I was actually getting the medicine. I was feeling a little better, but I was also very hopeful. After that finished, I got into a second trial — this was not double blind: I knew I was getting the medication, 70 mg., which is a relatively low dose. That’s when I started feeling better.
My migraines decreased about 20 percent after that first month. Which, when you’re getting daily migraines, is incredibly substantial. I was still having severe migraines; still going to the ER for infusions. But far less often. I auditioned for a play at a local theater. I could get out of bed.
I have a text thread with some fellow migraine sufferers, and when the news came out, I just began shaking with joy. We’ve all had so much false hope over the years and have all been through so much — we’re tentative. But excited.” —Elizabeth Roberts-Zibbel, Bowling Green, Ohio
*This article appears in the May 28, 2018, issue of New York Magazine. Subscribe Now!