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  • America’s Concussion Problem Is Way Bigger Than Sports

    America’s Concussion Problem Is Way Bigger Than Sports

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    The months of haze began in an instant, when the horse I was riding stumbled at the exact moment I was shifting my seat. I don’t remember falling, though I do remember the feeling of the leather reins moving through my hand. I hit my thigh on the ground. Then the flat of my back hit the wall of the indoor arena so hard it felt like I’d popped every vertebrae in my spine. After a few minutes, I got back on the horse (everyone always asks if I got back on the horse), but I haven’t ridden since.

    Only on the way home did my thoughts begin to feel sluggish, like a fog was rolling across my brain. I heard ringing in my ears when I tried to think. Everything became too bright and too loud. I slept 17 to 20 hours each of the next three days. I woke up, ate, used the bathroom, and then wandered back to bed, exhausted.

    I suspected I had a concussion as soon as the brain fog began. Just the week before, I had heard on a podcast that people could get one without hitting their head. The day after the accident, my doctor confirmed my suspicion. The force of my back against the wall had given me whiplash, my neck jerking forward and back after the collision. My brain, jostling around in my skull, had been injured too.

    In my mind, the dangers of concussions were most acute for people who got too many of them—football players, boxers, military veterans, and others who underwent repeated trauma to the brain and had chronic traumatic encephalopathy. A single bump on the head? That was no big deal—except when it was.

    For months, a five-minute phone call made me exhausted, as though I’d been swimming laps for an hour. I couldn’t drive, and even as a passenger, looking out the window made me nauseous. Observing anything felt like work; my eyes skipped, as though the world was a slowed-down film reel. My real work—the writing I got paid to do—was impossible. Fun, too, was out of the question. Trying to retrieve thoughts felt like rummaging through one empty file cabinet after another. My self, that person who exists in the wiring in my brain, had gone missing. I worried that she might be gone for good.

    During that time, I started to rage against a system that leaves people suffering from concussions or “mild traumatic brain injuries” wading through bad or outdated advice. Studies keep showing that getting targeted rehabilitation for concussion symptoms can lead to a faster recovery, but that’s not what the average patient hears. Many people are still being told by doctors to simply wait a concussion out, when early treatment can make a big difference.

    My doctor told me to rest—that most concussion symptoms resolve within a few days. Three days later, the doctor said not to worry until it had been seven to 10 days. Later she updated that range to a month.

    When I was awake, I ate and used the little mental energy I had to search for information about concussions online and send emails to specialists. I wanted to know what was actually happening in my brain and if I could do anything to speed the recovery process along. I learned that a helmet can’t completely protect against a concussion because simply accelerating and decelerating quickly can exert enough force on the brain to injure it.

    Then I took a nap.

    I learned that researchers were working on blood tests that could detect a concussion by measuring protein fragments from damaged nerve fibers. (The first commercial product got FDA approval in March.) Douglas Smith, the director of the Center for Brain Injury and Repair at the University of Pennsylvania, describes these nerve fibers as the electrical grid for the city that is the brain. “Having a concussion is like having a brownout,” he told me. The brain’s connections aren’t gone, “but the signals aren’t going through.” And long-term symptoms after a single concussion aren’t uncommon. They happen to roughly 20 percent of concussion patients, Smith said.

    I rested again.

    I read books about concussions, a few chapters at a time. Most described people being told that, because their CT scan showed nothing, nothing could be done for them. (Concussions rarely show up on imaging.) Or they described people being discharged from hospitals while their brains felt so broken, they could hardly speak. Conor Gormally, the executive director of  Concussion Alliance, told me that he believes concussions are treatable injuries that just aren’t being treated by the average medical professional. “The biggest problem people face are barriers to the care that they need, which is out there,” he said.

    I closed my eyes in the dark room.

    Every time I would spend a little while awake and active, a sensation of pressure would build up behind my ears, in a way that made me feel like my brain was swelling. I’d always been able to push through feeling tired and keep working. Now I couldn’t. When I reached my limit, I’d hear buzzing, as though a bug was stuck inside my eardrums.

    I rested again.

    This went on for weeks. I started looking up treatments for concussions in my area and found page after page of listings for chiropractors or special centers that didn’t always take insurance but promised that they’d be able to fix my brain. I joined support groups on Facebook where patients shared what had and hadn’t worked for them. Sometimes the posts were hopeful—people got better—but many of the people who remained in the groups did so because years had gone by and they still had problems. What if I never recovered?

    After five weeks with no answers, I started sobbing in the middle of the day. I’m a journalist who believes in evidence-based medicine, yet I found so few resources that I started looking into alternative therapy. At a particularly low point, I went to see a doctor whose website looked like it hadn’t been updated since the early 2000s. Over the phone, he’d made multiple mentions of “clean eating” and similar things that gave me pause. I ignored my misgivings because he’d also all but promised he could make me better. I wanted so badly to be myself again. He sold tablets that promised to fight 5G radiation at the front desk. I considered walking away then but didn’t. His alternative treatments, which included wearing tinted glasses and a blanket that blocked electric radiation, didn’t help. They did cost $500.

    I went back to bed.

    No one really knows how many people get mild traumatic brain injuries every year. Emergency- room data don’t capture everybody, Elizabeth Sandel, a brain-injury-medicine specialist and the author of Shaken Brain, told me, because “a lot of people just go to their primary-care doctor.” The statistic of 3.8 million Americans a year gets bandied about, sometimes linked to mild head injuries from sports and other times to brain injuries of all kinds. Falls, recreational activities, car crashes, and domestic violence all can cause head trauma.

    One of the reasons a concussion is so hard to treat is that every brain injury is a little bit different. There are more than 30 concussion symptoms, Smith told me: Some people get severe headaches; others have troubles with cognition, balance, vision, and so on. The treatment might be different for each of these symptoms.

    Until recently, Sandel said, doctors often recommended that people with a brain injury spend the first days “cocooning,” or resting in a dark room. Now experts better understand that, for some patients, resting may be beneficial, but for others activities that don’t overly exacerbate symptoms might speed healing. The latest guidelines for concussion recovery, which came out in October 2022, continue to shift toward suggesting better rehab, sooner. If dizziness, neck pain, or headaches persist after 10 days, the guidelines now recommend “cervicovestibular rehabilitation”—exactly the kind of therapy that ultimately helped me recover. It’s a combination of manual therapy on key muscles and rehab for the vestibular, or balance, system. Multiple studies have shown the benefits of this type of rehab, including a 2014 study that found that 73 percent of treated patients recovered after eight weeks, compared with 7 percent in the control group.

    By the time I got an appointment at a multidisciplinary brain-injury-rehab center near where I lived, more than two months had passed. After a lot of phone calls with my eyes closed—I could focus longer if I limited external stimulation—I found a vestibular therapist. This kind of therapy focuses on restoring the balance system through a combination of physical and eye exercises. My eyes not working in tandem was a classic sign that this area needed rehab.

    The therapist gave me exercises where I tracked my finger with my eyes to help them get back in sync. At my first appointment with him, I could hardly stand on one leg with my eyes open without falling over. After practicing the balance exercises he gave me for a few weeks, I could once again stand on one leg with my eyes closed.

    Manual physiotherapy, especially for the back and neck, can help restabilize and strengthen muscles after an accident. For me, this meant targeted physical therapy, strengthening exercises, and visits to a specialized chiropractor who used X-rays and gentle adjustments to put my neck back where it belonged.

    Some of the things I’d found through trial and error, like using a stationary bike for an hour each day, the brain-rehab center would have been recommended for me anyway. But long waitlists to get into places like that aren’t uncommon—and having the right doctors made a significant difference.

    Soon I noticed my stamina increasing every day. The neighbor’s dog didn’t seem so loud anymore. I could drive for 20 minutes, and then a full hour. I could even talk on the phone with friends and family whom I hadn’t been able to connect with for months. I read or went outside and did not need to nap. I wasn’t recovered but, finally, I was recovering.

    After three months, I began taking some writing assignments again. I’d been struggling to hold more than one thought in my head at a time, but now it was like my brain had rebooted. I was again the person I remembered.

    Six months after falling off the horse, my final, lingering symptom—the feeling of pressure in my head when I’d been working for too long—went away. I recovered but was left wondering why it had taken so much time for me to be routed to the care that I needed. I’ll never know if I would have gotten better without it, but I suspect recovery would have, at the very least, taken much longer. Why had I—a patient with a brain injury—been the one sifting through scientific papers and online support groups rather than getting these referrals from my doctor? In our American health-care system, many patients are expected to be their own advocates, but in this case, when a better, clearer path to recovery is so well established, it seems like that should have been unnecessary.

    I often think wistfully about returning to riding, but then think again of that one moment when I slipped from the saddle and the months it took to recover. We brush off the dangers of a single concussion, but sometimes one fall or bad knock to the head is all it takes to turn your life upside down.

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    Tove Danovich

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  • We Have No Drugs to Treat the Deadliest Eating Disorder

    We Have No Drugs to Treat the Deadliest Eating Disorder

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    In the 1970s, they tried lithium. Then it was zinc and THC. Anti-anxiety drugs had their turn. So did Prozac and SSRIs and atypical antidepressants. Nothing worked. Patients with anorexia were still unable to bring themselves to eat, still stuck in rigid thought patterns, still chillingly underweight.

    A few years ago, a group led by Evelyn Attia, the director of the Center for Eating Disorders at New York Presbyterian Hospital and the New York State Psychiatric Institute, tried giving patients an antipsychotic drug called olanzapine, normally used to treat schizophrenia and bipolar disorder, and known to cause weight gain as a side effect. Those patients in her study who were on olanzapine increased their BMI a bit more than others who were taking a placebo, but the two groups showed no difference in their cognitive and psychological symptoms. This was the only medication trial for treating anorexia that has shown any positive effect at all, Attia told me, and even then, the effects were “very modest.”

    Despite nearly half a century of attempts, no pill or shot has been identified to effectively treat anorexia nervosa. Anorexia is well known to be the deadliest eating disorder; the only psychiatric diagnosis with a higher death rate is opioid-use disorder. A 2020 review found people who have been hospitalized for the disease are more than five times likelier to die than their peers without it. The National Institutes of Health has devoted more than $100 million over the past decade to studying anorexia, yet researchers have not found a single compound that reliably helps people with the disorder.

    Other eating disorders aren’t nearly so resistant to treatment. The FDA has approved fluoxetine (a.k.a. Prozac) to treat bulimia nervosa and binge-eating disorder (BED); doctors prescribe additional SSRIs off-label to treat both conditions, with a fair rate of success. An ADHD drug, Vyvanse, was approved for BED within two years of the disorder’s official recognition. But when it comes to anorexia, “we’ve tried, I don’t know, eight or 10 fundamentally different kinds of approaches without much in the way of success,” says Scott Crow, an adjunct psychology professor at the University of Minnesota and the vice president of psychiatry for Accanto Health.

    The discrepancy is puzzling to anorexia specialists and researchers. “We don’t fully understand why medications work so differently in this group, and boy, do they ever work differently,” Attia told me. Still, experts have some ideas. Over the past few decades, they have been learning about the changes in brain activity that accompany anorexia. For example, Walter Kaye, the founder and executive director of the Eating Disorders Program at UC San Diego, told me that the neurotransmitters serotonin and dopamine, both of which are involved in the brain’s reward system, seem to act differently in anorexia patients.

    Perhaps some underlying differences in brain chemistry and function play a role in anorexia patients’ extreme aversion to eating. Or perhaps, the experts I spoke with suggested, these brain changes are at least in part a result of patients’ malnourishment. People with anorexia suffer from many effects of malnutrition: Their bones are more brittle; their brain is smaller; their heart beats slower; their breath comes shorter; their wounds fail to heal. Maybe their neurons respond differently to psychoactive drugs too.

    Read: The challenge of treating anorexia in adults

    Psychiatrists have found that many patients with anorexia don’t improve with treatment even when medicines are prescribed for conditions other than their eating disorder. If an anorexia patient also has anxiety, for example, taking an anti-anxiety drug would likely fail to relieve either set of symptoms, Attia told me. “Time and again, investigators have found very little or no difference between active medication and placebo in randomized controlled trials,” she said. The fact that fluoxetine seems to help anorexia patients avoid relapse—but only when it’s given after they’ve regained a healthy weight—also supports the notion that malnourished brains don’t respond so well to psychoactive medication. (In that case, the effect might be especially acute for people with anorexia nervosa, because they tend to have lower BMIs than people with other eating disorders.)

    Why exactly this would be true remains a mystery. Attia noted that proteins and certain fats have been shown to be crucial for brain function; get too little of either, and the brain might not metabolize drugs in expected ways. Both she and Kaye suggested a possible role for tryptophan, an amino acid that humans get only from food. Tryptophan is converted into serotonin (among other things) when we release insulin after a meal, Kaye said, but in anorexia patients, whose insulin levels tend to be low, that process could end up off-kilter. “We suspect that that might be the reason why [SSRIs] don’t work very well,” he said, though he emphasized that the theory is very speculative.

    In the absence of meaningful pharmacologic intervention, doctors who treat anorexia rely on methods such as nutrition counseling and psychotherapy. But even non-pharmaceutical interventions, such as cognitive behavioral therapy, are more effective at treating bulimia and binge-eating disorder than anorexia. Studies from around the world have shown that as many as half of people with anorexia relapse.

    Colleen Clarkin Schreyer, a clinical psychologist at Johns Hopkins University, sees both patients with anorexia nervosa and those with bulimia nervosa, and told me that the former can be more difficult to treat—“but not just because of the fact that we don’t have any medication to help us along. I often find that patients with anorexia nervosa are more ambivalent about making behavior change.” Bulimia patients, she said, tend to feel shame about their condition, because binge eating is stigmatized and, well, no one likes vomit. But anorexia patients might be praised for skipping meals or rapidly losing weight, despite the fact that their behaviors can be just as dangerous over the long term as binging and vomiting.

    Read: Raising a daughter with a body like mine

    Researchers are still trying to find substances that can help anorexia patients. Crow told me that case studies testing a synthetic version of leptin, a naturally occurring human hormone, have produced interesting data. Meanwhile, some early research into using psychedelics, including ketamine, psilocybin, and ayahuasca, suggests that they may relieve some symptoms in some cases. But until randomized, controlled trials are conducted, we won’t know whether or how well any psychedelic really works. Kaye is currently recruiting participants for such a study of psilocybin, which is planned to have multiple sites in the U.S. and Europe.

    Pharmaceutical companies just don’t seem that enthusiastic about testing treatments for anorexia, Crow said. “I think that drug makers have taken to heart the message that the mortality is high” among anorexia patients, he told me, and thus avoid the risk of having deaths occur during their clinical trials. And drug development isn’t the only area where the study of anorexia has fallen short. Research on eating disorders tends to be underfunded on the whole, Crow said. That stems, in part, from “a widely prevailing belief that this is something that people could or should just stop … I wish that were how it works, frankly. But it’s not.”

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    Rachel Gutman-Wei

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