I am 22 when it first occurs to me that migraines will impede my projected path through life.
It is the first week of my first real job. I am a reporter at a tiny newspaper in a town tucked away in the foothills of the Washington Cascades.
Thanks to a nearby spearmint factory, which refines the oil used in candies and toothpaste, the whole town smells like a pack of gum.
I find myself on a tour with two women from the chamber of commerce. I am riding shotgun in a Cadillac, nodding as they point out the sights, but the mint smell, suddenly unbearable, overwhelms me.
The sun lasers through the windshield and into my eyeballs. The pain begins to pulse. In a few minutes, it has surged across the left side of my head. My stomach clenches. We are just passing the mayor’s house when I ask to pull over.
I have years of practice at making hasty retreats to bathrooms or secluded trash cans. Sometimes I travel with a grocery bag in my purse, or one of the wax-paper barf bags I collect from airplanes. But today I have no bag. I barely make it to the mayor’s lawn.
I have no time to crouch. I puke standing up, which I know means there will be a backsplash. It hits the ground, splatters my loafers and trails up the hems of my good black pants – formerly my interview pants, recently promoted to work pants.
I explain to the women that I get migraines, and that bright lights and strong smells sometimes trigger an attack. They nod at me blankly. Then they drive me back to the newspaper, where I sheepishly tell my new boss that I have to go home and lie down, that I probably won’t be back for two days. I don’t even know whether I have sick time yet. All I know is that I need to find a dark room and curl up in it. He tells me to go.
Most sufferers are women
More than 36 million Americans suffer from migraines, but because a staggering 27 million of us are female, the disorder is largely relegated to the medical designation of “women’s issue.” It gets short shrift when it comes to research funding: This year’s National Institutes of Health budget includes $458 million for alcoholism research, and $230 million for asthma – but only $18 million for migraines.
Even among neurological disorders, migraines get less funding than devastating but much less common disorders such as Parkinson’s ($155 million), which affects roughly 1 million Americans. Migraines are simultaneously one of the most common and the least understood disorders of our day, with startlingly limited treatment options.
Dr. Audrey Halpern, a neurologist and migraine specialist who teaches at the New York University School of Medicine, is stunned by the low priority placed on migraines – especially considering that it affects nearly 1 in 5 women.
“I do believe that because so many sufferers are women, it has been swept under the rug, not taken seriously,” she told me. She decided to specialize in migraines as a neurology resident at Yale in 2002, and when she informed one of the chief neurologists, he laughed.
“Even just a decade ago, many neurologists did not believe that migraine was a neurological condition, and certainly not one that was worthy of any significant attention,” she said.
Today there is no doubt that migraines are neurological, although the specific cause remains murky. Most doctors believe the condition is genetic and related to some structural or chemical dysfunction in the brain. And that dysfunction may not be the same for men and women. A recent study of migraine sufferers of both sexes by Harvard researcher Nasim Maleki found the women’s brains so different from the men’s that their migraines were essentially “different diseases altogether.”
Studies like Maleki’s are important, but rare. As of now, doctors haven’t advanced far beyond the physicians of the Middle Ages, who drilled holes in the heads of migraine sufferers to release the evil spirits.
Compare migraines to breast cancer, another prominent “women’s issue” that does get a fair amount of funding. Halpern explains that this may be partly due to the fact that breast cancer is potentially fatal, and partly due to the bias in medicine for definitively diagnosable disorders. A tumor, after all, will show up on an MRI. A migraine will not.
Everyone’s a skeptic: Most people who hear the word “migraine” translate it to “headache,” and expect us to take an aspirin and get back to work. I have had bosses, teachers and coaches urge me to exercise more, drink more coffee, drink less coffee, avoid milk, avoid gluten, avoid citrus or try acupuncture. I’ve done all those things, along with everything else.
Some people assume we are lazy or flaky. I had an editor so suspicious of my migraines that, when I called in sick with one on my 29th birthday, she lectured me on taking my work seriously – assuming, I suppose, that “migraine” was code for “hangover.” As a type-A achiever, this riles me. Joan Didion put it succinctly in her essay on migraines, “In Bed”: “Nothing so tends to prolong an attack as the accusing eye of someone who has never had one.”
Two days of darkness
Migraines inflict pain by making blood vessels around the brain swell up like so many pythons swallowing hippos.
When I feel one coming on – it happens once or twice a week – I take medications that constrict my blood vessels. These are sometimes effective and sometimes not. When a migraine withstands medication, it will last for 48 bedridden, anguished hours. In a dark and preferably cold room, I lie as still as possible to keep from startling my stomach, which, like a wild animal, is easily provoked.
Some people have had luck with preventive medications, but most of these are repurposed drugs, originally introduced in previous decades for entirely different disorders. I have taken drugs initially intended to treat, in turn: seizures, high blood pressure, depression, anxiety, angina and psychosis. None made a dent in my migraines.
I have volunteered for three clinical trials of new (or newly repurposed) migraine medications. One had the effect of waking me in the middle of the first night I took it, feeling like I had been kidnapped by carnies and strapped to a Gravitron floor. The intensity of that vertigo pinned me to my bed and prevented me from even being able to speak. I dropped out of the study the next day.
Somehow, until my late 20s, I never identified myself as a migraine sufferer. Even now, I think of migraine as something that just happens, a twice-weekly fluke that is still not part of my identity.
This although I cannot leave the house without a purse full of pills; although my father has called me “Barferina” since middle school; although my friends refer to me, somewhat more graciously, as a “fragile flower.”
I resent the ways my migraines have shaped my personality.
Only now, 20 years after my first migraine at age 12, do I fully recognize the insidious force that has made me less ambitious over time, less adventurous and less fun. I no longer stay up past midnight, since disrupting my sleep schedule is a migraine trigger. At parties, I drink club soda out of a tumbler that I can pretend is a vodka tonic. I have learned the hard way that altitude changes will trigger a migraine, which cuts down on my travel and mountain climbing.
These days, I hardly ever make firm plans, so I won’t have to cancel at the last minute and let someone down, again.
Struggling in a job
As it turns out, my first boss is sympathetic. He suggests that, if I get another migraine, I could lie down on the couch in the lounge area we call the Reporter Rumpus Room.
This is the best response I can hope for: that instead of trying to cure me, the people in my life will accept and try to help me cope.
My next migraine coincides with my assignment to cover the Toledo, Wash., Cheese Days Festival. I find myself standing again under a blazing sun, watching people parade through town dressed as wedges of cheese. The parade route is dotted with trash bins and I use them between interviews.
At the parade’s end, I decline the offer of a cheese sandwich and race home to file my story from a cold, dark room.
Jennifer Latson is a former newspaper reporter writing a nonfiction book about Williams syndrome, a disorder that makes people socially uninhibited. This article first appeared on TheHairpin.com. Twitter: @JennieLatson.