ReportWire

Tag: Neurological Disorder

  • Trump Finds Another Line to Cross

    Trump Finds Another Line to Cross

    Former President Donald Trump, perhaps threatened by President Joe Biden’s well-received State of the Union address, mocked his opponent’s lifelong stutter at a rally in Georgia yesterday. “Wasn’t it—didn’t it bring us together?” Trump asked sarcastically. He kept the bit going, slipping into a Biden caricature. “‘I’m gonna bring the country tuh-tuh-tuh-together,’” Trump said, straining and narrowing his mouth for comedic effect.

    Trump has made a new habit of this. “‘He’s a threat to d-d-democracy,’” Trump said in his vaudeville Biden character at a January rally in Iowa. That jibe was also a response to a big Biden speech—one tied to the anniversary of the January 6 insurrection. (Guess who the he was in that sentence.)

    More than Trump’s ugly taunt, one thing stands out to me about these moments: the sound of Trump’s supporters laughing right along with him. This is a building block of Trumpism. The man at the top gives his followers permission to be the worst version of themselves.

    I was on my way to meet friends last night when someone texted me a link to Trump’s latest fake-stuttering clip. I am a lifelong stutterer, and as I rode the subway, holding my phone up to my ear, out came that old familiar mockery—like Adam Sandler in Billy Madison saying, “Tuh-tuh-tuh-today, junior!” Only this time the taunt was coming from a 77-year-old man.

    Stuttering is one of many disabilities to have entered Trump’s crosshairs. In 2015, he infamously made fun of a New York Times reporter’s disabled upper-body movements. Three years later, as president, when planning a White House event for military veterans, he asked his staff not to include amputees wounded in combat, saying, “Nobody wants to see that.” Stuttering is a neurological disorder that affects roughly 3 million Americans. Biden has stuttered since childhood. He has worked to manage his disfluent speech for decades, but, contrary to the story he tells about his life, he has never fully “beat” it.

    As I noted in 2019 when I first wrote about Biden’s relationship to his stutter, living with this disorder is by no means a quest for pity. And having a stutter is not a get-out-of-jail-free card for any verbal flub. Sometimes, when Biden mixes up a name, date, or fact, he is doing just that: making a mistake, and his stutter is not the reason. I am among those who believe the balance of Biden’s stuttering to non-stuttering-related verbal issues has shifted since I interviewed him five years ago.

    And yet, Biden can still come off confident, conversational, and lucid. Although he’s not a naturally gifted orator like Barack Obama or Bill Clinton, he can still be an effective public speaker—someone who, as my colleague Jennifer Senior noted, understands “the connect.” Notably, he can find a way to do all of the above while still periodically stuttering, as he proved during his State of the Union speech. Depending on the day, his voice might be booming or it might be shaky. He may go long stretches of time without interruption, or visibly and audibly repeat certain sounds in a classic stutter formation. Such moments are outside of Biden’s control, as they are for any stutterer, which makes them an appealing pressure point for Trump, the bully.

    For a time, Trump exercised a modicum of restraint around this topic. As I once wrote, Trump was probably wise enough to realize that, to paraphrase Michael Jordan, Republicans stutter too. (Including Trump’s friend Herschel Walker, who has his place on the Stuttering Foundation’s website, along with Biden.) During the 2020 election, Trump wouldn’t go right for the jugular with the S-word. Instead, at his final campaign events, he would play a sizzle reel of Biden’s vocal stumbles, looking up at the screen and laughing at Biden along with the crowd. Back then, Trump left most of the direct stuttering vitriol to his allies and family. “Joe, can you get it out? Let’s get the words out, Joe,” his daughter-in-law, Lara Trump, said at a Women for Trump event. She’s now RNC co-chair.

    Watching this new clip brought me back to my conversation with Biden five years ago. At the time, I asked him whether he thought Trump would one day nickname him “St-St-St-Stuttering Joe.” If Trump were to go there, Biden told me, “it’ll just expose him for what he is.”

    Trump has now definitively gone there. What has that exposed? Only what we already knew: Trump may be among the most famous and powerful people in modern history, but he remains a small-minded bully. He mocks Biden’s disability because he believes the voters will reward him for it—that there is more to be gained than lost by dehumanizing his rival and the millions of other Americans who stutter, or who go through life managing other disorders and disabilities. I would like to believe that more people are repulsed than entertained, and that Trump has made a grave miscalculation. We have eight more months of this until we find out.

    John Hendrickson

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  • How Do I Make Sense of My Mother’s Decision to Die?

    How Do I Make Sense of My Mother’s Decision to Die?

    My mom could always leap into the coldest water. Every summer when we visited my grandma in upstate New York, my mom dove straight into the freezing lake, even when the temperature outdoors hit the 50s. The dogs, who usually trailed her everywhere, would whine in protest before paddling after her, and the iciness left her breathless when she surfaced. “Just jump, Lil,” she’d yell to me, laughing, before swimming off to vanish into the distance.

    But I never could. I didn’t think much about that difference between us, until I flew north to be with her on the day she’d chosen to die.

    When my mom found out in May last year that she had pancreatic cancer, the surgeon and the oncologist explained to our family that cutting out her tumor might extend her prognosis by about a year; chemotherapy could tack on another six months. A few days later, my mom asked if we could spend time together in Seattle over the summer, if we could get lemonade at the coffee shop while I was there, if I wanted to play Scrabble before I left. “Yeah, of course,” I said. “But—” She interrupted me: “I’m not getting surgery.”

    After a decade of Parkinson’s disease, my mom already experienced frequent periods of uncontrolled writhing and many hours spent nearly paralyzed in bed. That illness wounded her the way losing vision might pain a photographer: Throughout her life, she had reveled in physicality, working as a park caretaker, ship builder, and costume designer. Now, plagued by a neurological disorder that would only worsen, she didn’t want to also endure postoperative wounds, vomiting from chemo, and the gloved hands of strangers hefting her onto a bedpan after surgery. Nor did she want to wait for the pain cancer could inflict. Instead, my mom said, she planned to request a prescription under Washington’s Death With Dignity Act, which allows doctors, physician assistants, and nurse practitioners to provide lethal drugs for self-administration to competent adult residents with six months or less to live.

    As a doctor myself, I’ve confronted plenty of death, yet I still found myself at a loss over how to react to my mom’s choice. I know that the American tropes of illness—“battling to the end,” “hoping for a miracle,” being “a fighter”—often do harm. In clinical training, none of us wanted to unleash the fury of modern medicine upon a 98-year-old with cancer who’d just lost his pulse, but we all inflicted some version of it: ramming his purpled breastbone against his stilled heart, sending electricity jagging through his chest, and breaching his throat, blood vessels, and penis with tubes, only to watch him die days later. I didn’t want that for my mom; I had no desire for her to cling futilely to life.

    And yet, even though it shamed me, I couldn’t deny feeling unnerved by my mom’s choice. I understood why she’d made it, but I still ruminated over alternate scenarios in which she gave chemo a shot or tried out home hospice. Though her certainty was comforting, I was also devastated about losing her, and uneasy about how soon after a new diagnosis she might die.

    My mom had made her end-of-life wishes known by the time I was in fifth grade. Our rental home still held the owners’ books, among them Final Exit, a 1991 guide for dying people to end their lives. The author dispensed step-by-step advice on how to carry out your own death, at a time when nothing like the Death With Dignity Act existed in any state. When I found the book, my mom snatched it away. But months later, after her best friend died of brain cancer, she asked if I remembered it.

    “If I ever get really sick, Lil,” she said, “I don’t plan to suffer for a long time just to die in the end anyhow. I would take my life before it gets to that point, like in that book. Just so you know.”

    After her Parkinson’s diagnosis, my mom moved across the country to Washington, mostly to be near my sister, but also because in 2008, it became only the second state to approve lethal prescriptions for the terminally ill. Since then, despite much contention, the District of Columbia and eight more states have followed—including California, where I live and practice medicine. No dying patient of mine had ever requested the drugs, so I didn’t think much about the laws. Then my mom got cancer, and suddenly, the controversies ceased to be abstract.

    Proponents of aid-in-dying laws tend to say that helping very sick patients die when they want to is compassionate and justified, because people of sound mind should be free to decide when their illnesses have become unbearable. Access to lethal medications (which many recipients never end up using) lets them concentrate on their remaining life. I sympathize: I’ve seen patients who, despite palliative care, suffered irremediable existential or physical pain that they could escape only with sedating doses of narcotics.

    But I grasped the other side of the argument as well: that self-determination has limits. Aid-in-dying opponents have said that doctors who hasten death violate the Hippocratic Oath. Although I disagree with these moral objections, I do share some of the antagonists’ policy concerns. Many worry that state laws will expand to encompass children and the mentally ill, as they do in countries such as Belgium and the Netherlands. They argue that a nation that still devalues disabled people needs to invest in care, rather than permit death and open up the risk of coercion. So far, Americans who have used these laws have been overwhelmingly white and college-educated. But I could imagine patients of mine requesting death for suffering that’s been amplified by their poverty or uninsurance.

    These policies are so polarizing that people can’t even agree on language. Detractors refer to “assisted suicide,” or even murder, while supporters prefer medical “aid-in-dying,” which I’ll use, because it’s less charged. But I don’t much like either term, and neither did my mom. She was already dying, so she didn’t think of her death as suicide. Nor would she accept a passive term such as aid-in-dying, when she was the one taking action. Lacking any suitable word, she settled on a phrase that felt stark but honest. “When I kill myself,” she’d say. When she killed herself, we should give her spice rack to a friend. When she killed herself, we shouldn’t hold a funeral, because that would be depressing. Her tone was always matter-of-fact. My stomach always somersaulted.

    That summer, I read constantly about aid-in-dying—accounts of its use in Switzerland, essays in American medical journals, articles written by people who’d lost a loved one that way. I was the exception in our family. My mom was concerned with bigger issues, like whether the ice-cream shop would restock the lemon flavor before she died. My sister thought I was overintellectualizing things—and she was right. Sometimes we do the only thing we know how to, to keep from falling apart.

    So I kept looking for the solace of stories that felt as complicated as my own thoughts. They were remarkably rare. To me, loving my mom meant acknowledging my own hesitation yet still respecting her measure of the unendurable. Juggling these emotions felt nuanced, but most of what I read didn’t. So many narratives cast aid-in-dying as either an abomination or the epitome of virtue, in which a dying person could be rewarded for courageous serenity with a perfect death.

    Another daughter whose mother pursued aid-in-dying spoke in a TED Talk of the “design challenge” to “rebrand” death as “honest, noble, and brave.” But however tantalizing the prospect, the promise that we can scrub death of ugliness felt dangerously dishonest. Death can be wrenching and awful no matter where and how it happens: on a ventilator in an intensive-care unit, on morphine in hospice, or with a lethal prescription at home, surrounded by family. Being able to control death doesn’t mean we can perfect it.

    The myth of the “good death”—graceful and unsullied, beatific even—has infiltrated the human subconscious since at least the 15th century, when the Ars Moriendi, Christian treatises on the art of dying, proliferated in Europe. A translation of one version counsels the sick on how to die “gladly.” The moral in these texts bludgeons you: How you die is a referendum on how you lived, with only a picturesque exit guaranteeing repose for the soul.

    The notion has seeped through generations. “I hope if I’m ever in that situation, I’d have the bravery to do that,” one friend said about my mom’s choice. “It’s good she’ll die with her dignity intact,” said another. My mom’s physicians, kind and smart people, seemed so eager to validate her decision that the aid-in-dying criteria distilled to a checklist rather than unfurling into conversation. Even the name of the law my mom intended to use, Death With Dignity, implies that planned death succeeds where other ways of dying don’t. More than half a millennium after the Ars Moriendi, we still seem to believe that you can fail at death itself.

    One doctor told us of a landscape architect who drank the fatal cocktail while exulting in her garden in full bloom. It sounded perfect—except that in all my years as a doctor, I’ve never seen a perfect death. Every time, there’s some flaw: physical discomfort, conversations left unfinished, terror, family conflict, a loved one who didn’t get there in time. Still, my sister and I tried to stage-manage a beautiful death. We booked a cabin in Olympic National Park for my mom’s exit. We would bake her famous olive bread and cook bouillabaisse. We’d wheel her to the beach, then to the towering cedar forest, then massage her feet with almond oil while we talked in front of a woodstove. The fireside conversation would be our parting exchange of gifts, full of meaning, remembrance, and closure.

    As our family waited for that day to come, we kept thinking we should be tearing through a bucket list. Instead, we did what we always had—cooked, played games, read. We just did it with an ever-present sense of countdown, in an apartment where nearly everything would outlive my mom: the succulent on the windowsill, the lasagna in the freezer she made us promise to eat when she was gone.

    My mom did have the lemon ice cream again, but our family never made it to the cabin in the forest. A month before the planned trip—10 weeks after my mom’s diagnosis—the pharmacy compounded the drugs: a mixture of morphine and three others. The bottle was amber, filled with dissolvable powder and labeled with the words No Refills. (“Now that would be a dark Saturday Night Live skit,” my mom told me.) The next morning, a Thursday, she called, dizzy and miserable. She wanted to die ahead of schedule, on Saturday. I got on a plane.

    My mom, my sister’s family, and I spent Friday grilling chicken and drinking good wine. After my older niece painted my mom’s nails lavender with polka dots, the kids and my brother-in-law said their goodbyes and left. The next morning, my sister and I laid out the backyard like a set: a couch swathed in blankets. Tables with plants and photos and huge candlesticks. A stereo to play the music of our childhood and her motherhood.

    But our revised choreography couldn’t erase how horrible my mom felt that morning, dispirited by her disease and deeply exhausted. We had to cajole her not to die in bed. Eventually, she came outside, where we drank peppermint tea and talked about nothing memorable. When the moment came to gulp the bottle’s contents, mixed into lemonade, she didn’t hesitate.

    “You would make the same choice if you were me, right?” she said, setting down the empty bottle. I knew she wasn’t second-guessing. She was ending her time as our mother not out of lack of devotion, but because all other options felt untenable, and she needed confirmation that we knew this.

    “Yes,” my sister said, “I would.”

    “Me too,” I said—but in truth, I didn’t know. Maybe I would have dwindled over months of chemo as I learned to reshape my life in the face of imminent death. Maybe I would have died in hospice, surrendering myself to the fog and mercy of morphine. Maybe I would have stowed the drugs in a cupboard, cradling them occasionally and then, unable to reconcile the simplicity and complexity of that ending, replacing them. Each of these paths would have demanded its own form of courage—just not my mom’s type.

    “I’ll just go to sleep now, right?” she asked.

    “Yeah, Mom, you’ll just go to sleep,” I said. “I love you.”

    My sister and I kissed her forehead, her cheeks, her collarbone. We avoided the poisonous sheen on her lips, where our tears had wet the residue of white powder.

    The aspens rustled, confetti of silver. My mom didn’t cry, and the slightest trace of a smile alighted on her face.

    “Bye,” she said. “You’ve been awesome.”

    And then she dove off the dock. Her lips blued, and when she tried to speak more, the words never surfaced.

    It took her five and a half hours to disappear completely, while my sister and I tamped down growing worries that the drugs hadn’t worked. My mom felt no pain—she couldn’t have, after all that morphine—but her passing wasn’t a fairy tale. Her suffering wasn’t embossed in meaning; she didn’t tile over her bitterness with saintly forbearance. My mom died on the day she was ready and by the means she chose. All of that matters, immensely so. She also died precipitously, far from the forest she’d dreamed of, while my sister and I were left with little closure and a prolonged, confusing death.

    Usually, I write when I’m most upset, but my mom’s death catapulted me into a frightening depth of wordlessness. Weeks passed before I realized that my problem was not that I couldn’t find words at all. It was that I couldn’t tell the tale I felt I was supposed to. In that myth, death has a metric of success, and that metric is beauty. The trouble is that you can’t grieve over a version of events that never happened. You can only grieve over the story you lived, with all of its ambiguities.

    My mom’s death was beautiful. It was also terrible, and fraught. That is to say, it was human.

    Lindsay Ryan

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  • It’s the Best Time in History to Have a Migraine

    It’s the Best Time in History to Have a Migraine

    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.

    Marina Koren

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  • Stiff-person syndrome: What we know about Céline Dion’s rare condition  | Globalnews.ca

    Stiff-person syndrome: What we know about Céline Dion’s rare condition | Globalnews.ca

    Legendary Canadian singer Céline Dion was recently diagnosed with a rare neurological disorder called stiff-person syndrome (SPS) that led her to reschedule several European tour dates.

    In two videos posted on social media on Thursday, Dion expressed that the condition is not allowing her “to sing the way I’m used to.”

    Read more:

    Céline Dion reveals diagnosis of rare neurological disease: ‘It’s been really difficult for me’

    According to the National Center for Advancing Translational Sciences, there are fewer than 5,000 known cases of stiff-person syndrome in the U.S. The symptoms of the disorder can begin at any point in a patient’s life. However, it is most commonly noticed in adulthood.

    What is stiff-person syndrome?

    According to The Stiff Person Syndrome Research Foundation website, this condition is an incurable disorder that causes progressive muscle rigidity and spasms. Those diagnosed with the disorder can be disabled, bedridden or unable to care for themselves.

    Story continues below advertisement

    The cause of this extremely rare disease is still unknown, according to the Yale Medicine website, “but researchers suspect that it may be the result of an autoimmune reaction where the body attacks nerve cells in the central nervous system that control muscle movement.”

    The name doesn’t do justice to the pain and life-changing symptoms the syndrome causes, Tara Zier, founder of the Stiff Person Syndrome Research Foundation, told The Canadian Press on Thursday.

    “A lot of people have challenges with mobility. Many have assisted devices for mobility, walkers, wheelchairs. Some people are bedridden,” she said.


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    The Stiff Person Syndrome Research Foundation says, “the most common symptoms of SPS are muscle rigidity, stiffness and spasms in the muscles of the trunk including the back and limbs.”

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    These can be triggered by environmental stimuli, like loud noises, or emotional stress according to Yale Medicine.

    “The muscle spasms can be so severe they cause the person to fall down. The muscles gradually relax after the stimulus is gone,” the Yale Medicine website states.

    About one or two people in a million are affected by SPS, according to the Stiff Person Syndrome Center at Johns Hopkins Medicine.

    Although that’s the rate that is generally reported, researchers don’t know for sure, Dr. Marinos Dalakas, director of the neuromuscular division at the Thomas Jefferson School of Medicine in Philadelphia, told The Canadian Press on Friday.

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    The number of cases involving the rare disease could be higher because people are so often misdiagnosed, said Dalakas, who is also a member of the medical advisory board for The Stiff Person Syndrome Research Foundation.

    Common misdiagnoses include Parkinson’s disease, multiple sclerosis and psychiatric disorders, he said.

    How long does it take to diagnose SPS?

    The condition takes, on average, five to seven years to diagnose, according to the Stiff Person Syndrome Research Foundation.

    “Since it is so rare, very often it is not recognized by medical providers. Neurologists, especially movement disorder neurologists, neuromuscular neurologists, and neuro immunologists are the usual SPS experts,” said the foundation on their website.

    Yale Medicine says that “reaching a diagnosis for Stiff Person Syndrome can be difficult” and a comprehensive examination of the patients takes place in order to confirm the diagnosis, like doing blood tests and spinal fluid analysis.

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    “When conducting those tests, your doctor is looking for elevated levels of anti-glutamic acid decarboxylase (GAD) antibodies,” their website states.

    Yale Medicine explains that the immune system in a patient who may have stiff-person syndrome “seems to attack a protein called glutamic acid decarboxylase (GAD), which helps make a substance called gamma-aminobutyric acid (GABA).”

    “GABA helps regulate motor neurons by decreasing their activity,” it adds.

    Low levels of GABA can cause those neurons to fire continuously even when they’re not supposed to, according to Yale Medicine.

    “About 60-80 percent of Stiff Person Syndrome patients have anti-GAD antibodies in their blood,” it says.

    Are there treatments or a cure?

    According to Yale and the foundation, there is no cure for Stiff Person Syndrome.

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    When doctors treat patients with this condition, Yale Medicine says they focus on managing the symptoms with medications “such as sedatives, muscle relaxants, and steroids.”

    Medications need to be tailored to each patient, depending on their symptoms, Dr. Marinos Dalakas, director of the neuromuscular division at the Thomas Jefferson School of Medicine in Philadelphia, told The Canadian Press.

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    Commonly prescribed treatments for stiff person syndrome include diazepam, which can both help relieve muscle spasms and reduce severe anxiety, as well as muscle relaxants and anti-seizure medications like gabapentin.

    Specialists may also do a physical examination of the muscles or use electromyography (EMG) to assess muscle and neurological function.

    Dalakas said the earlier patients are diagnosed and treated, the better their outcomes tend to be.

    — With files from Global News’ Sarah Do Couto and The Canadian Press

    &copy 2022 Global News, a division of Corus Entertainment Inc.

    Aya Al-Hakim

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