After 40 Years of Hell, Heaven Is Migraine Relief

By Jill Johnson
January 7

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The sun had barely risen when the ringing of the phone sliced through my head like a circular saw. I struggled to open my heavy lids, instinctively jamming the heel of my hand into my right eye socket, trying to knock out the searing pain. It was my usual desperate attempt to block the assault of light from the window—a plea for migraine relief.

Still clutching my right eye, the epicenter of the pain, I reached for the phone with my other hand. “H-hello,” I uttered, struggling to quell a wave of nausea. It was Maggie, my Munich modeling booker, who had given a 22-year-old (ancient by fashion standards) a shot. I'd landed a booking for Adidas—a big gig—but I had to be there in 40 minutes. I couldn’t screw it up.

“OK,” I said, meekly, not mentioning my migraine. I knew she would see any illness as a flaw, like a receding chin or laugh lines. I also knew how much skepticism people have about headaches, even this agonizing variety. My own brother used to taunt me, “You’re making it up. It’s not that bad.”

 

Only those who have experienced a migraine get it. It's a gutting pain, one that can’t be measured or observed, except by a stream of tears running down my face or the way I used to lie on the kitchen floor writhing, my temple pressed against the cool linoleum.

“There is nothing simple about what happens in the brain during a migraine attack,” says neurologist Jessica Ailani, M.D., director of the Medstar Georgetown Headache Center in Washington, D.C. “Multiple areas are affected: There are changes in brain electrical activity, changes in blood flow, and a release of chemicals that cause irritation around the brain.” At the same time, the trigeminal nerve, “the nerve that causes normal sensation in the head and face,” switches on, sending signals deep into the neck and into the brain that migraine sufferers often mistake for back pain, Dr. Ailani explains. “As the attack progresses, pain—often emanating from behind one eye—confusion, and fatigue may follow,” she says. And to top it all off, the pain brings with it waves of nausea and a grating sensitivity to light and smells.

Although it felt as though my right frontal lobe was being scraped across a cheese grater, I managed to get myself dressed that morning, swallow a few saltines and tea, and stumble onto the U-Bahn to get to my shoot. In between fake smiles, I sat on a track bench with my head between my knees, praying not to upchuck on my crisp white running attire. It was hell.

Decades Without Relief

My migraines started when I was eight, before I was even really old enough to know what was going on other than the fact that my brain seemed to be imploding inside my skull. In my twenties, the attacks matured into brutal menstrual migraines. By my thirties, migraines were hijacking my head five or six days a month, and now in my forties, they haunt me a few days a week. Thirty-eight million Americans know my pain.The thing about the multipronged ambush that migraines stage on your brain is the fact that it's wildly difficult to treat. “It’s hard to target everything at once with medication, except by shutting the whole system down,” says Dr. Ailani. Since you can’t just pass out if you need to get to work or pick up your kids, that’s not exactly a practical solution. “This often leads to taking medication that treats only part of what is happening or taking it too late and then it doesn’t work,” she says.

In my decades of dealing with the vicious pounding in my skull, I’ve tried just about everything to get it to stop: I cut out alcohol, soy sauce, balsamic vinegar, chocolate, aged cheeses, overripe bananas (banana bread is bad news), bacon, pizza, gluten, down pillows, crack-of-dawn flights, exercise, ponytails, hats, movie theaters, dinner parties, social small talk, sleeping in rooms over 70 degrees, too much screen time…the list went on.

I tried every over-the-counter medication (the equivalent of jumping into a bull pen armed with a toothpick), every available prescription drug (useful only once an attack had already brought me to my knees), and every natural tincture I could get my hands on (ironically, most herbal concoctions actually gave me migraines). I tried acupuncture, mouth guards, osteopathy, Reiki, massages, and a migraineur’s fave: banging my head against a wall. At best, I found little relief.

In the nineties, pharmaceutical companies released a class of drugs called triptans, which helped significantly with stopping migraines once they started, but still no magic pill existed to prevent them. That didn’t stop doctors from trying all the options available; faulty-brained folks like me could be prescribed antidepressants, antiseizure meds, and beta blockers—all pills for another purpose that patients had accidentally discovered reduced their migraines.

I was throwing an entire arsenal of drugs and therapies at the problem, but none could shove the bully in my brain aside. Instead, they unleashed insomnia, jitters, weight gain, fatigue, uneven brows, and a near nervous breakdown. I felt like I was living my life in purgatory—always waiting for the next blow to my head.

The Cure

I thought I would be forever doomed to this migraine-induced hell, but recently science (praise you, science!) has delivered a breakthrough to those of us desperate to leave our days of writhing in pain in dark rooms behind.

In 2017, my neurologist, Peter McAllister, M.D., medical director of the New England Institute for Neurology and Headache in Stamford, Connecticut, told me about a promising new drug. Researchers had discovered a specific peptide released during a migraine episode, part of a chain reaction that triggers that ice-pick-in-eyeball pain I’d been trying to eradicate for four decades. Dubbed a CGRP blocker, the drug travels directly to the site of this pesky peptide and stops the bugger in its tracks. “This is the first preventive drug designed specifically for migraine,” says Dr. McAllister, who was a principal investigator on the studies behind the development of the drug. "The beauty of this drug is that it has very few side effects. In that way, it’s night and day from older preventative drugs,” he told me.

Only one issue: The please-let-it-be-a-miracle drug wasn’t yet available. I held my breath for six months, fantasizing about the new life I might have—as I had every time I heard about a potential "cure." I would spend time with my kids every morning, instead of hiding under the damp towels they fetched for my head. I would enjoy a vacation without inevitable hours spent locked in my hotel room, whimpering after the blows of another migraine. I would feel the simple bliss of being able to take a yoga class or leisurely swim without paying in pain the next morning.

Then it happened. In May of last year, the FDA approved the first CGRP blocker (Amgen and Novartis’s Aimovig) and it was as if heaven itself had opened up. Cue the chorus of angels: Ahhhhhh! I tried to manage my expectations. It might not work for me—until this point nothing had—but when my first cooler pack containing the drug arrived last September, I could barely contain my excitement.

Aimovig works by preventing migraines from occurring through monthly self-injections with an easy-to-use device that looks similar to an EpiPen. At my kitchen table, with my kids curiously eyeing my science experiment, I injected my thigh with a syringe prefilled with the clear magical medicine. Then I waited.
 

Finding Relief—Finally

I keep my migraine journal in the top drawer of my nightstand. It carries the trauma of years, marked out in cruel X’s on migraine days, and the scribbles of a frustrated detective: avocado? brisk walk uphill? stressful week? dinner out? feta? too much sleep? sushi? some jerk changed the thermostat! not enough sleep? rain? Here I would know whether I had finally found relief from years of migraine hell.

In the first month, the jagged X’s marking migraine days dropped from 12 to four—it was the best month I’d had in a decade.

My second month using Aimovig was even better, just as studies predicted, and by February I had only two migraine episodes—both were minor. I’ve done yoga and a Spin class, eaten pizza, stayed up too late, gotten up too early, and gone on vacation, all blissfully pain-free. The newfangled auto-injector makes administering the monthly shot easy, and the sting is a minor nuisance in a new ritual that has me falling to my knees and thanking the medical gods for changing my life.

“I have a patient who had a vomit bag in her car and she would throw up while driving when she got a migraine,” says Dr. Ailani (who is a consultant for Amgen and Novartis and a prescriber of Aimovig). “That was ‘normal’ for her—it’s shocking how much people will put up with. But you shouldn't have to throw up in a bag in your car; you shouldn’t have to give up time with your kids; you shouldn't have to go to the emergency room [in pain].” As I revel in my nearly migraine-free new normal, I keep reminding myself not to take it for granted—ever.

A friend who is going through a rough time recently started a gratitude journal, writing down three things she's grateful for each night. I decided to start one too. It sits on top of my migraine journal in my nightstand, and every entry begins: I’m grateful that I did not have a migraine today.

Jill Johnson is a freelance writer and author of Cancer Looks Good on YouFollow her on Instagram @modelingmentor.