Tag: chronic traumatic encephalopathy

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against a system that leaves people suffering from concussions or “mild traumatic brain injuries” wading through bad or outdated advice.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.