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Here is a straightforward, clinical description of a migraine: intense throbbing headache, nausea, vomiting, and sensitivity to light and noise, lasting for hours or days.
And here is a fuller, more honest picture: an intense, throbbing sense of annoyance as the pain around my eye blooms. Wondering what the trigger was this time. Popping my beloved Excedrin—a combination of acetaminophen, aspirin, and caffeine—and hoping it has a chance to percolate in my system before I start vomiting. There’s the drawing of the curtains, the curling up in bed, the dash to the toilet to puke my guts out. I am not a religious person, but during my worst migraines, I have whimpered at the universe, my hands jammed into the side of my skull, and begged it for relief.
That probably sounds melodramatic, but listen: Migraines are miserable. They’re miserable for about 40 million Americans, most of them women, though the precise symptoms and their severity vary across sufferers. For about a quarter, myself included, the onset is sometimes preceded by an aura, a short-lived phase that can include blind spots, tingling, numbness, and language problems. (These can resemble stroke symptoms, and you should seek immediate medical care if you experience them and don’t have a history of migraines.) Many experience a final phase known as the “migraine hangover,” which consists of fatigue, trouble concentrating, and dizziness after the worst pain has passed.
These days, migraine sufferers are caught in a bit of a paradox. In some ways, their situation looks bright (but, please, not too bright): More treatments are available now than ever before—though still no cure—and researchers are learning more about what triggers a migraine, with occasionally surprising results. “It’s a really exciting time in headache medicine,” Mia Minen, a neurologist and the chief of headache research at NYU Langone, told me.
And yet the enthusiasm within the medical community doesn’t seem to align with conditions on the ground (which, by the way, is a nice, cool place to press your cheek during an attack). Migraine sufferers cancel plans and feel guilty about it. They struggle to parent. They call in sick, and if they can’t, they move through the work day like zombies. In a 2019 survey, about 30 percent of participants with episodic migraines—attacks that occur on fewer than 15 days a month—said that the disorder had negatively affected their careers. About 58 percent with chronic migraines—attacks that occur more often than that—said the same.
Migraines are still misunderstood, including by the people who deal with them. “We still don’t have a full understanding of exactly what causes migraine, and why some people suffer more than others do,” Elizabeth Loder, a headache clinician at Brigham and Women’s Hospital in Boston and a neurology professor at Harvard Medical School, told me. Despite scientific progress, awareness campaigns, and frequent reminders that migraines are a neurological disorder and not “just headaches,” too often, they’re not treated with the medical care they require. Yes, it’s the best time in history to have migraines. It just doesn’t feel that way.
Humans have had migraines probably for as long as we’ve had brains. As the historian Katherine Foxhall argues in her 2019 book, Migraine: A History, “much evidence suggests migraine had been taken seriously in both medical and lay literature throughout the classical, medieval, and early modern periods as a serious disorder requiring prompt and sustained treatment.” It was only in the 18th century, when medical professionals lumped migraines in with other “nervous disorders” such as hysteria, that they “came to be seen as characteristic of sensitivity, femininity, overwork, and moral and personal failure.” The association persisted, Stephen Silberstein, the director of the headache center at Thomas Jefferson University, told me. When Silberstein began his training in the 1960s, “nobody talked about migraine in medical school,” he told me. Physicians still believed that migraines were “the disorder of neurotic women.”
The first drug treatments for migraines appeared in the 1920s, and they were discovered somewhat by accident: Doctors found that ergotamine, a drug used to stimulate contractions in childbirth and control postpartum bleeding, also sometimes relieved migraines. (It could also cause pain, muscle weakness, and, in high enough doses, gangrene; some later studies have found that it’s little better than placebo.) The drug constricted blood vessels in the brain, so doctors assumed that migraine was a vascular disorder, the symptoms brought on by changes in blood flow and inflamed vessels. In the 1960s, a physician studying the effectiveness of a heart medication noticed that one of his participants experienced migraine attacks less frequently than he used to; a decade later, the FDA approved that class of drug, called beta-blockers, as a preventative treatment. (In the decades since their approval, studies have found that beta-blockers helped about a quarter of participants reduce their monthly migraine days by half, compared with 4 percent of people taking a placebo.)
Things changed in the 1990s, when triptans, a new class of drugs made specifically for migraines, became available. Triptans were often more effective and faster at easing migraine pain than earlier drugs, though the effects didn’t last as long. Around the same time, genetic studies revealed that migraines are often hereditary. Meanwhile, new brain-imaging technology allowed researchers to observe migraines in real time. It showed that, although blood vessels could become inflamed during an attack and contribute to pain, migraine isn’t strictly a vascular disorder. The chaos comes from within the nervous system: Scientists’ best understanding is that the trigeminal nerve, which provides sensation in the face, becomes stimulated, which triggers cells in the brain to release neurotransmitters that produce headache pain. How exactly the nerve gets perturbed remains unclear.
The past few years of migraine medicine have felt like the ’90s all over again. In 2018, the FDA approved a monthly injection that prevents migraines by regulating CGRP, a neurotransmitter that’s known to spike during attacks. For 40 percent of people with chronic migraines participating in one clinical trial, the treatment cut their monthly migraine days in half. Similar remedies followed; Lady Gaga, a longtime migraine sufferer, appeared in a commercial this summer to endorse Pfizer’s CGRP-blocking pill, and the company’s CEO launched a migraine-awareness campaign earlier this month. Solid evidence has emerged that cognitive behavioral therapy and relaxation techniques tailored to migraine can be helpful as part of a larger treatment plan. The FDA has cleared several wearable devices designed to curb migraines by delivering mild electric stimulation. Last year, the agency decided to speed up the development of a device that deploys gentle puffs of air into a user’s ears.
Researchers are still, to this day, making progress on identifying migraine triggers. Experts agree on many common triggers, such as skipping meals, getting too little sleep, getting too much sleep, stress, the comedown from stress, and hormone changes linked to menstruation or menopause. They’re also realizing that some long-held beliefs about triggers might be entirely wrong. MSG, for example, probably doesn’t induce migraines; changes in air pressure don’t do so as often as many people who have migraines seem to think.
Some supposed triggers might actually be signs of an oncoming migraine. The majority of migraine sufferers experience something called the premonitory phase, which can last for several hours or days before headache pain sets in and has its own set of symptoms, including food cravings. We migraine sufferers are frequently advised to steer clear of chocolate, but if you’re craving a Snickers bar, the migraine may already be coming whether or not you eat it. “When you get a headache, you blame it on the chocolate—even though the migraine made you eat the chocolate,” Silberstein said. “I always tell people, if they think they’re getting a migraine, eat a bar of chocolate … It’s more likely to do good than harm.”
Silberstein’s advice sounded like absolute blasphemy to me. Virtually every migraine FAQ page in existence had led me to believe that chocolate is a ruthless trigger. Maybe I shouldn’t have been relying on general guidelines on the internet, even though they came from reputable medical institutions. But I had turned to the internet because I didn’t think my migraines necessitated a visit to a specialist. According to the American Migraine Foundation, the majority of people who have migraines never consult a doctor to receive proper diagnosis and treatment.
Recent surveys have shown that people are reluctant to see a professional for a variety of reasons: They think their migraine isn’t bad enough, they worry that their symptoms won’t be taken seriously, or they can’t afford the care. The hot new preventative medications in particular “are extremely expensive, putting them out of reach of some of the people who might benefit the most,” Loder said. In 2018, when the much-heralded CGRP blocker hit the market, the journalist Libby Watson, a longtime migraine patient herself, interviewed migraine sufferers who described themselves as low-income, and found that most of them hadn’t heard of the new drug at all.
Even if you can get them, the treatments don’t guarantee relief. One recent study showed that triptans might not relieve pain—or might not be tolerable—for up to 40 percent of migraine patients. Experts are still trying to figure out why the same treatment might work wonderfully for one person, and not at all for another, Minen said. Some patients find that drugs eventually stop working for them, or that they come with side effects bad enough to discourage continued use, such as dizziness and still more nausea.
These problems remain unsolved in part because of a dearth of research. Like other conditions that mostly afflict women, migraines receive “much less funding in proportion to the burden they exert on the U.S. population,” Nature’s Kerri Smith reported in May. And many doctors are unaware of the research that exists: A 2021 study of non-migraine physicians found that 43 percent had “poor knowledge” of the condition’s symptoms and management, and just 21 percent were aware of targeted treatments. Specialists tend to have a much better knowledge base, but good luck seeing one: America has too few headache doctors, and there are significantly fewer of them in rural areas.
Many migraine sufferers rely on over-the-counter pain relievers, myself included. Years ago, my primary-care physician prescribed me a triptan nasal spray. It produced a terrible aftertaste and worsened the throbbing in my head, and I gave up on it after only a couple of uses. Back to Excedrin I went, not realizing—until reporting this story—that nonprescription medications can cause even more attacks if you overuse them. Some people get by on home remedies that the journalist Katy Schneider, who battles migraines herself, has described as a “medicine cabinet of curiosities”; one person she interviewed shotguns an ice-cold Coke when she feels the symptoms coming on.
When triptans and tricks fail, some people try to prevent migraines by avoiding triggers. Don’t stay up too late or sleep in. Don’t drink red wine. Put down that Snickers. This strategy of avoidance “interferes with the quality of their life in many cases,” Loder said, and probably doesn’t stop the attacks. And drawing associations is a futile exercise because most migraines are brought on by more than one trigger, Minen said. People can end up internalizing the 18th-century idea that migraines are a personal failure rather than a disease—and migraine FAQs perpetuate that myth by advising patients to live an ascetic life.
The misconceptions surrounding migraine, combined with its invisibility, make the disorder easy to stigmatize. The authors of a 2021 review found that, compared with epilepsy, a neurological disorder with a physical manifestation, “people with chronic migraine are viewed as less trustworthy, less likely to try their hardest, and more likely to malinger.” Perhaps as a result, many feel pressure to grind through it. Migraines are estimated to account for 16 percent of presenteeism—being on the job but not operating at full capacity—in the American workforce.
Before reporting this story, I had never thought to call my migraines a neurological disorder, let alone a “debilitating” one, as Minen and other experts do. Migraines were just this thing that I’ve lived with for more than a decade, and had accepted as an unfortunate part of my existence. Just my Excedrin and me, together forever, barreling through the wasted days. The attacks began in my late teens, around the same time that my childhood epilepsy mysteriously vanished. I never got an explanation for my seizures, despite years of daily medication and countless EEGs. A neurologist once told me that the two might be related, but he couldn’t say for sure; research has shown that people who have epilepsy are more likely to experience migraines. And so I assumed that I just had a slightly broken brain, prone to electrochemical misfiring.
All of the experts I spoke with were politely horrified when I told them about my migraines and how I manage them. I promised them that I’d make an appointment with a specialist. Before we got off the phone, Silberstein gave me a tip. “Put a cold pack on your neck and then a heating pad, 15 minutes alternating,” he said. “It’ll take the migraine away.” He told me that researchers are developing a device that does this, but the old-fashioned way can be effective too. At this point, my cabinet of curiosities is falling apart, its hinges squeaking from overuse. I’m already rethinking my entire migraine life, so I may as well try this too.
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Marina Koren
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