My migraines began when I was just 8 years old. These aren’t run-of-the-mill headaches. Rather, there’s a short window in which nausea and mild pain along my forehead and temples signal that I need to get to a cool, dark, quiet place and take some medication. Otherwise, I start violently throwing up, and the pounding in my head escalates to an intolerable level of pain.
Many neuralgia sufferers know they’re about to have an attack thanks to an aura. Some people evade any actual migraine pain but experience stress-induced blindness or numbness.
Defining precisely what a migraine is can be hard. Equally difficult is treatment of such a nebulous, wide range of peculiar symptoms. While nothing compares to the agony of a migraine attack, explaining the condition — and its various treatments — can be a pain, too.
I was a sensitive child; equal parts voraciously curious, cautiously rebellious, and extremely sensitive. I was also, I later learned, prone to migraines. My paternal grandfather, Frederick Shoot, suffered from debilitating migraines for decades. He was a theologian, a university dean and professor with a master’s degree in the Old Testament, a Ph.D. in the New. Maybe it’s obvious that for people who are thinkers first and physical beings second, our stress manifests along our necks and shoulders and travels up into our heads.
Before I was born and for days on end, Grandpa Shoot would have to lie down in a dark room. Back then, time was the treatment; there were no drugs or alternative therapies to soothe the blinding pain. As a result, he and Gram Shoot, Bernice, were some of my most empathetic caretakers throughout my childhood and adolescence. When I would get sick at school, they would pick me up and put me to bed at their house. It wasn’t until I was much older that I learned how much Grandpa had suffered from the exact same thing and how it must have guided them in so lovingly caring for me, their only granddaughter, whose chronic condition was treated by most as a confusing nuisance.
Somehow, whenever I would seek solace and soothing at their house, they made virtually no sound while I slept off the sickness. Only as an adult do I understand what a gift that was, and only now do I fully appreciate the patience and love required to endure another’s prolonged illness. Perhaps only my husband, a deeply kind and conscientious man of great intellect, has so adeptly mastered the art of being silent while I sleep off an attack.
Out in the world, it’s always been a bit more complicated. Take the time when, at around 10 years old, I became violently ill during the final few hours of a family vacation at Universal Studios Florida. Sometime after the E.T. bicycle adventure and the exploding Backdraft simulator, my head started to pound. I tried to make it to the restroom to vomit, but it was too late.
As we made our way out of the park, I stopped every few hundred feet to awkwardly jam my head sideways into a garbage bin. With those non-removable lids that keep animals out of the trash, I was often unable to really lean into the bin and mostly just barfed all over the theme park as fellow thrill-seekers watched in horror. My puke spree continued in the rental car, where we learned that childproof windows don’t roll down completely, and on the plane, where the poor flight attendants tried to offer me Sprite and saltines.
Stories of public puking can be riotously funny. But in telling so many of them over the years, I also realized that being able to recognize your own symptoms, and to have them taken seriously, is often the greatest struggle. That, and I was a seriously ill little girl.
Be still my pounding head
It wasn’t until I was a university undergraduate that I was finally diagnosed. I’d been sick for days, missing class and trying to hibernate the pain away, when I finally took the campus shuttle to the student health clinic to ask for something stronger than ibuprofen. The doctor on duty took one look at me and then sat down, visibly alarmed.
“Have you ever been diagnosed with migraines?” he began. “I ask because I suffer from them, too. Do you ever stand on your head or bend into awkward positions to try to alleviate the pain?”
“Of course, yeah!” I practically shouted, my eye wide despite my pain. He nodded. “Only people who get severe migraines know what I’m talking about.” Suddenly, I had been seen and understood. He gave me a pill, a triptan, to take immediately and wrote me a prescription for more. I felt well within the hour.
When I was young, my grandparents had taken me for an annual optometrist visit, hoping that an undiagnosed vision problem might explain my illness. In high school, I’d been put on medication meant to lower my blood pressure and thereby reduce the throbbing in my head, though it instead made me chronically lightheaded. Vexingly, I was also put on hormonal contraceptives, which have been linked to exacerbated migraine symptoms. Now that I had some inkling of what was going on, I scheduled a visit to the headache clinic in the university hospital’s neurology department, where I was subjected to a battery of ultimately futile tests. At least I had drugs while I searched for long-term relief.
In graduate school, I supplemented my income from administrative temping by being a research test subject in area hospitals. At one clinic, I signed up for a series of migraine-related medical trials. I wasn’t sure I would actually uncover anything about my condition, but being paid to test out new medication seemed like a decent trade-off. Most studies involved tracking the onset and duration of my attacks while taking pain pills that were being tested for off-label use.
I was getting older, and increasingly weary of pretending everything was OK. Faking it made me even sicker. Learning to say no to commitments or back out of a scheduled event if I was unwell was a process, though. Many times, I’d ended up violently sick because I’d simply pressed on for too long, guilt-ridden that I’d let someone down or be seen as unreliable.
I also learned that I could ask for help. A couple who remain two of my dearest friends, Carlin and Nick, lived near enough to be considered neighbors and once kindly drove me to the emergency room in the middle of the night after three days of symptoms that simply wouldn’t subside.
Carlin still gets wide-eyed telling the story of watching an ER doctor hook me to an IV drip of an unknown substance. As the doctor promised I’d feel better soon, I passed out in relief, so suddenly subdued that it frightened her. I remember little of that night, save for the strangeness of lying on the backseat of my own car as my tired, worried friends piloted us across town. I only know that they stayed up half the night with me, that I’d have done the same for them, and that I wished I’d starting asking for help sooner.
Palette for palliative care
Non-migraine sufferers — 47 percent of adults have had a normal headache in the past year, according to the World Health Organization — may assume that they understand my condition and thus feel free to comment on how I manage my symptoms. But few common headaches can cause the array of symptoms provoked by a migraine: extreme sensitivity to light, sound, temperature, and movement; visual auras and temporary blindness; cold sweats, fever, nausea and vomiting; and partial numbness.
When I’ve accidentally mentioned to a well-intentioned but surprisingly unsympathetic person that I never leave the house without my emergency stash of prescription medication, OTC drugs, and adhesive cold patches for my forehead, I’m usually asked some variant of “You know triptans can be addictive, right?”
I totally do. Given the nature of my attacks, I’m not inclined to care. Migraines beget more migraines, and that’s really only one part of the discussion. Painkiller addiction is tragic and real, but so is pain. Treatment and prevention policing happens to people suffering from and surviving a broad spectrum of disorders and conditions. ADD/ADHD sufferers who rely on amphetamines, chronic pain survivors who take meds as needed, and even people who need tranqs to help them recover from surgery can be susceptible to nosy faux-concern from those who don’t have to live with a particular symptom set.
Warning someone about a drug they have in some cases been taking for years only serves to put everyone on the defensive. What most of us need is some compassion. A smile or just saying, “I’m so sorry you feel so badly” can make me start crying tears of relief. In those moments, I am my own most compassionate self. I am sorry for myself but also for everyone else in the world that suffers from pain, too.
Some treatments also come with built-in restrictions that cause a different guilt. A prescription drug like the sumatriptan Imitrex, which I’ve taken for the past decade, comes with a prohibitive price tag. Even if I sought that feeling of euphoric relief that settles in as my symptoms subside, I could never afford the $45 per pill it costs without insurance.1
Life after migraines
I still get sick, but I have mostly moved past frequent migraines. Acupuncture has been the key to my ongoing recovery. During treatment, hair-thin needles are inserted along the meridians in the body, tapping into the body’s qi, or life-force energy. For 30 to 45 minutes, I lie still, falling into a meditative state and sometimes snoozing. If I’m dealing with extra stress, sore shoulders, or a stiff neck, I may have a cupping or moxibustion treatment. As with most treatments, some people respond well, others not at all.
Rebecca, a dear friend who suffers from her own chronic physical pain and nervous system disorders, had started acupuncture treatment years ago to alleviate the pain in her limbs. She mentioned that it had helped relieve and reduce her pain. What did I have to lose?
Healing happens when you’re open to anything. During the intake visit, my acupuncturist explained that a course of needle and cupping treatment and herbal therapy could help me have fewer headaches, and that they would become less painful, too. “There is life after migraines,” she explained. No one had ever given me so much hope in a single phrase. She was also right.
Studies have shown that to treat migraines, acupuncture can be as effective as drug therapy. It’s also a treatment that helps alleviate tension headaches, neck disorders, and peripheral joint osteoarthritis. Jaime Starkey, the lead acupuncturist at the Cleveland Clinic’s Center for Integrative Medicine, agrees. She often works with seemingly hopeless sufferers just like me. “I see patients who have tried everything in traditional medicine,” she says.
Tanya Edwards, medical director of the Center for Integrative Medicine at the Cleveland Clinic, works closely with Starkey and likes to tell her personal success story as evidence of the benefits of acupuncture. Like me, Edwards was a lifelong migraine sufferer before she decided to experiment with the very techniques she studied and prescribed. “I thought, Why don’t I try my own medicine?” the now-headache-free doctor explains. Today, because of her own success in taking charge of her condition, “My mantra is that I have faith in my patients to take control of their own health.”
Over the course of about six months, during which I had biweekly treatments, the intensity of my migraines started to diminish. Furthermore, I had fewer headaches. After about eight months, I was down to one migraine a month, pegged to my menstrual cycle. Without acupuncture, I might never have figured out that in addition to stress, my migraines are often triggered by ovulation. Now, more than six years later, I continue to take herbal supplements. I still get an occasional needle therapy tune-up to manage my symptoms. And that nice husband of mine? After seeing my radical transformation, and to cope with stress and the tension that builds up in his body, he goes in for acupuncture treatments, too.
Perhaps the only oddity in my story is how drastically I sometimes downplay my recovery. When people ask, I often mutter, “Oh, well, I know this wouldn’t work for everyone, but uh, I found that acupuncture treatments worked well for me.”
I barely sound convinced of my own radical turnaround, and I certainly don’t sound like the born-again evangelist that I am. But there’s a not insignificant part of the population that has something to say about alternative medicine. After spending my entire young life trying to justify my illness, the last thing I want to do is apologize for and educate others about my recovery method. And yet, it’s been the single thing that’s provided long-term relief.
In late 2011, during a work trip to New York, I stayed with a friend who is a fellow public puker, not of the migraine-suffering but of the alcohol-consuming variety. When jet lag off a red-eye flight had me barfing all over Midtown Manhattan, she helped me orchestrate a cab ride to her Brooklyn apartment, during which I dry-heaved into a glass soda bottle. Every time I looked stricken and began to retch, she turned up the volume on the tiny TV affixed to the back of the front passenger seat so the driver presumably wouldn’t hear what I was doing.
We never discussed what she was doing (though she did initially offer to let me barf in her purse, “a cheap piece of shit I’ve been meaning to replace”). It was an automatic and most thoughtful choreography between friends who understand what it means to be violently ill in public.
There’s also a strange pride in being able to, as gracefully as possible after more than 15 years of practicing, heave into a tiny bottle opening and manage not to lose a drop. The cabbie, who seemed to have heard the whole thing, nevertheless seemed appreciative of my puking prowess (and the generous tip).
And there’s a not-so-strange relief that there is, in fact, life after migraines. For me, puking in the back of a taxi is now a freak occurrence rather than a way of life. That night, I drank some 7-Up, ate some Ritz crackers, and watched an NBA game with my friend’s sportswriter husband. After a night’s rest under an eye mask, I’d fully recovered. I didn’t have to cancel a single meeting that week.
When I was a little girl, I never dreamed I’d grow up to become a robustly healthy woman. Maybe that’s why I have a hard time conveying the importance of my ongoing recovery in my mostly post-pain life. What would you do, and how would you tell others, if your wildest dreams came true?
Illustration by Ryan Pagelow.2
I currently have excellent insurance, though there were times when I did not. The stress of trying to determine whether you’ll later be able to afford more, or whether you have enough pills stockpiled to take one now, is a tragic failing of the United States health care system that many of us know all too well. ↩
Ryan Pagelow is an illustrator and the creator of the dark, syndicated webcomic Buni which appears online and in several newspapers. His work also appears in Mad magazine. When not drawing he is a videographer and photographer living in Chicago. On Twitter, he’s @bunicomic. ↩
San Francisco-based journalist Brittany Shoot, the managing editor of The Magazine, writes about fascinating people and far-flung places. She is a contributing writer to Mental Floss, Spirituality & Health, and Sojourners, and also writes for magazines including Time, San Francisco, and Islands.