Knocking My Head on the Unknown

My finger was bruised and swollen after I jammed it into the ground playing Spikeball, a game where people hit a ball onto a circular net that stands a few inches from the ground. I swore I heard the finger crack. It looked crooked to me, though my mother disagreed. I went to the doctor’s office, figuring I would get an x-ray and leave with a splint on my finger. 

In the waiting room, a nurse handed me the typical medical questionnaires. One of them had strange questions. 

“Please leave a check if you have recently experienced the following:” 

“Dizziness / Lightheadedness?” Check.

“Weakness / Fatigue?” Check.

“Headaches?” Check.

I’d gone in for my finger, but I was leaving a check next to most options. 

The nurse took my papers and called me into a room and took my blood pressure. “Is there any reason your blood pressure might be higher than normal right now?” she asked. 

There wasn’t a reason for it to be high. I was only 20 years old and I’d never had any health issues. I was in good shape, exercised a lot and ate right. I became concerned. Something might be wrong. 

“Not that I’m aware of,” I responded. 

The nurse noted my blood pressure and left, saying “the doctor will be with you in just a moment.” 

As I waited for the doctor, I freaked out. Something must be wrong with me. I tried to refocus my attention on my finger. 

The doctor came in and examined my finger, asking me about pain levels and what caused the injury. Then she took notes in my patient chart. My brain was focused on the questionnaire. The longer the appointment went on, the more confident I was that she wouldn’t ask about it. 

“Your finger is fine,” she said. “It’s a sprain and you’ll recover quickly.” 

I thought this was the end of the visit, but then she looked through the intake paperwork I filled out. 

“What is all this?”

I hesitated. Then it dawned on me. Roughly three months earlier I sustained a concussion. I didn’t think much of it at the time. 

Nearly 2 million people are diagnosed with a concussion each year in the United States. I knew of people who suffered a concussion, rested for a week or so, and then returned to normal life. 

Except I hadn’t.

Like a lot of people, my limited understanding about concussions and how to manage them came largely from what I heard on sports television and media. NFL players often sustain a concussion during a televised game and return to play the next game. Rest and recovery seemed to do the trick for them. 

It is easy for a sports fan to see professional athletes and think that we’re like them. After all, they are people too, even if they are generally stronger and faster than the rest of us. 

A 2012 study led by Dr. John Leddy titled, “Rehabilitation of Concussion and Post-Concussive Syndrome” from the Sports Health Journal found that 10% of athletes continue to display symptoms two weeks after their initial concussion, while about one in three non-athletes continue to do so three months after their injury. Dr. Mark Krieger, a sideline concussion protocol doctor for the NFL, said it’s “possible” that athletes recover differently from non-athletes. 

“I’ve seen football players who have a major hit to the brain, and they have a seizure, and then they’re totally fine. They have no after-effects,” he says. “Then some other people might have […] a relatively minor impact and prolonged symptoms.”

Late on a Friday night at the University of Southern California in October of 2019, I was playing spikeball, a sport that combines elements of handball, foursquare and volleyball. Here is an explainer video that demonstrates how the sport is played. This is what the sport looks like when it is being played at a high level. 

This is what happened to me.

I sustained a concussion playing Spikeball in October 2019. I didn’t get the help I needed and instead decided to handle my injury the best I knew how, with rest. 

My symptoms worsened in the days following the concussion. I had headaches so bad that light and noise affected my ability to think. My balance was shaky and on numerous occasions I nearly fell. I suffered from vertigo and ringing in my ears. 

After one week of rest, some symptoms subsided, but new ones emerged. I spoke, thinking I said one thing, but learned that other words came out. I saw students I took classes with, and though I knew I recognized them, I didn’t know their names or where I knew them from. I couldn’t focus on anything. Tasks that previously felt easy now sapped all my mental energy. I felt burned out and nervous all the time, but I didn’t understand what I was feeling. 

It was only when I went to the doctor for my finger months later that I understood the origin of those feelings and symptoms. 

After seeing the initial doctor, I saw three more. An MRI scan of my brain showed no structural damage. Yet my symptoms got worse. The more I tried to understand what was happening to me, the worse I felt. I began to hyper-focus on my symptoms and this led me to feel increasingly scared. 

I grew uncomfortable with who I was because I didn’t feel like myself anymore. My brain felt scrambled. I couldn’t identify with myself anymore.

I wasn’t who I used to be. 

Before my appointment with the third doctor, I had a nightmare in a lucid dream state. I knew I was asleep, yet I had conscious thoughts. My chest grew heavy. I couldn’t move, and I felt my lungs running out of air. I felt like I was choking, trying to scream for help but nothing came out. I felt my heart pounding heavily and I was stuck for what felt like years as I fought for my life. I began freaking out and I was convinced I was dying. 

I initially thought it was sleep paralysis, something I’d dealt with before, but this was different. This felt much worse.

I was convinced I was dying. 

I fought this feeling, and the more I fought it, the worse it got. In the midst of the struggle, I thought about my friends, and how if I gave in and died, it would be okay because they cared about me. It felt like the last thought I would ever have, and it made me feel at peace. After a long struggle, I gave in. 

I died, and the experience stopped. 

I jolted up from my bed, fully awake.

What had just happened to me? 

I started shaking uncontrollably and I couldn’t figure it out. I couldn’t calm myself down. Did I have a heart attack? A seizure? Was I meant to die? 

I was 20 years old and had been fine until that Spikeball game. 

I woke up my mother in the middle of the night and told her I needed to go to the hospital, that I thought there was something terribly wrong with me. She tried to ease my concerns and though she wouldn’t take me to the hospital, I made her sleep in my room with me. Every time I tried to sleep, I started crying out of fear that I would die if I fell asleep again.

Over the next week, I couldn’t get out of bed. I asked my 14-year-old sister to stay in my room with me because I needed the comfort her presence provided. I was too afraid that no matter what I did, my life was coming to an end. I couldn’t sleep, I couldn’t eat and I couldn’t even watch television, because I felt paralyzed by fear. 

Then the pandemic began and I got COVID-19. I panicked. I began to ask myself questions. Is this what the rest of my life will be like? 

I went to a psychologist who specialized in treating mental health disorders in patients who sustain concussions.

I was diagnosed with general anxiety and a panic disorder as the result of my concussion. Over the next year and a half, I stepped away from my studies at USC, began therapy to work on my mental health and made slow progress. 

According to a study titled “A review of post-concussion syndrome and psychological factors associated with concussion,” led by Donna Broshek from the Department of Psychiatry and Neurobehavioral Sciences at the University of Virginia, development of mental health issues is common after concussions. 

“When cognitive symptoms persist the individual may experience a shaken sense of identity […] these cognitive symptoms create frustration and additional distress, leading to anxiety and avoidance of anxiety provoking situations […]. The anxiety and avoidant behaviors may also lead to depression.” 

This is just the beginning of the issues for most patients, the study noted that “as the complex interplay between anxiety and depression increases, they further distract the individual and cause additional cognitive compromise, which may result in additional emotional distress. The psychological overlay accumulates and intensifies and may become more disabling than the initial injury.”

The study perfectly encapsulated experiences I spent years wrestling with. Those sentences seem so simple, and yet they don’t begin to scratch the surface of what it felt like to be in a constant state of panic. 

Another study from the Journal of Neuroscience titled “Chronic Cortical Inflammation, Cognitive Impairment, and Immune Reactivity Associated with Diffuse Brain Injury Are Ameliorated by Forced Turnover of Microglia,” shows that almost three in four people who sustain a concussion develop long-term mental health and cognitive complications such as anxiety and depression. 

On top of these mental health factors, these statistics don’t acknowledge the dangers of immediate injury to the head such as hematomas, which is when blood pools in the brain, potentially leading to serious complications, including death, if left untreated. Another possible injury is physical brain damage. 

Though less common, these are also serious risks that arise from even minor concussions. In the case of 25 year old Jacob Martinez, the brain damage he suffered because of a concussion changed the course of his life. 

Before I saw the psychologist, I was told that my MRI scan of my brain was normal and that my brain functionality was normal. 

The most intimidating part of my experience, and a sentiment that Martinez shared with me about his experience, is the confusion in the aftermath of a concussion. It’s frustrating to try to understand why you don’t feel like yourself when the tests doctor’s run say there’s nothing wrong with you. This internal frustration, feeling like you should be “fine”, yet feeling incapable when you try to do things, was a damning feeling. 

It’s hard to understand what’s happening to you when doctors barely understand the subject. The truth is, concussions, and brain injuries at large, are a relatively new subject of study in the medical field, and as such there is very limited information about them. 

Asked about the risks of sustaining a concussion, Dr. Krieger said, “probably the most important answer is we don’t know.”

There is limited existing data about what happens in the brain when a concussion occurs. In fact, the very definition of a concussion isn’t always agreed upon. As Dr. Krieger put it, “a concussion is sort of broadly defined, right? It’s any loss or change in neurologic function as a result of head trauma. So it’s a descriptive thing, rather than a hard and fast thing.”

He continued with an analogy that made clear how little we truly know about the subject. 

“If you said that somebody is pregnant […] you’re describing the fact that there’s actually a blood test that confirms that there’s a pregnancy and ways of validating that they’re pregnant,” he said. “There’s really no such objective measure of what a concussion is […] so when people look at different aspects of a concussion in terms of MRI scans, or biochemical markers, or physical exam things, there’s no definitive findings that indicate a concussion.” 

In my search for answers and an explanation as to why I dealt with the issues I did, my conversation with Dr. Krieger led to a dead end. 

If we know so little about the subject of concussions, how do we help people who sustain them? 

According to a study titled “Management of concussion and post-concussion syndrome,” from the Current Treatment Options in Neurology Journal, “there are no scientifically established treatments for concussion or PCS and thus rest and cognitive rehabilitation are traditionally applied.” Of those who sustain a concussion, 90% of patients recover without other intervention. 

However, for the rest of patients, those called the “miserable minority” by Dr. R Li Wood, there are options to alleviate their pain. 

One such option is physical therapy. Although we may not know exactly what happens inside the brain when a concussion occurs, we do know that if someone is still having symptoms months after the event, there are tested and proven exercises they can do at a physical therapy clinic that will reduce their symptoms. 

According to Dr. Sylvia Lucas from the University of Washington Headache Clinic, in a study titled “Headache Management in Concussion and Mild Traumatic Brain Injury,” anywhere from 30-90% of concussion patients deal with posttraumatic headache, with roughly 1 in 5 of those patients continuing to struggle with headaches one year after the event. 

Though headaches are common in post-concussive patients, there are exercises that can reduce headaches and neck pain. 

It is also common for post-concussive patients to struggle with balance. 

One other major component of post-concussion syndrome is dizziness. 

Although physical therapy can help reduce symptoms, Dr. Erica Sigman, Director of Physical Therapy at USC Health Sciences Campus, was quick to point out that “a lot of people […] they think it can all be treated with physical therapy, and I don’t believe it can. It has to be a multidisciplinary approach once you’re in the post-concussive concussion world.” 

Other options for recovery include seeing neuro-ophthalmologists, doctors who specialize in eye conditions, as well as psychologists who treat mental health conditions, and neuropathologists who treat brain conditions. Regardless of the specific type of doctor and treatment plan that you set up, it is important to set up a treatment plan as soon as possible if you think you have a problem. This may seem obvious, but it is something that can be hard for a post-concussive patient to realize. 

“People don’t know where to go, and they don’t know how to get proper treatment,” says Dr. Sigman. “A lot of people sort of just wait it out, they’re not sure what specialist to go to. They’re not sure how to find the specialist.”

It’s easy for me to say now that getting immediate help is the right thing to do, but it wasn’t so easy when I was struggling with my symptoms a few years ago. Though there are numerous treatment plans to overcome post-concussion syndrome, the bulk of my treatment was exposure therapy to overcome the panic attacks I faced. 

Exposure therapy is a process where you are faced with something that causes you fear, and then you train your brain to be less scared of it over time. In my case, dizziness was something that increased my anxiety and made me feel like I was on the verge of a panic attack. In order to overcome this, I would purposefully make myself dizzy, almost induce a panic attack, and then force myself to do something afterward that I didn’t think I was capable of, such as reading a book or doing a homework assignment. 

In some cases, I would actually induce a panic attack and then deal with it in order for my brain to learn that it wasn’t actually in danger and that I was okay. 

After doing exposure therapy, I slowly reintroduced myself to exercise, and eventually to Spikeball. It took a year and a half of exposure therapy, panic attacks and grit, but I returned to play in the Summer of 2021. By July 2022, I earned premier status in the sport, which comprises the top 1% of players worldwide. 

On the day that I earned premier status, I used all of my coping mechanisms learned in therapy. I woke up that day dizzy. After our first game I was lightheaded. During the series when I earned premier, my head was pounding so hard it was pulsating. At one point I thought I would throw up. 

Things that a year and a half ago would’ve caused me to crumble to my anxiety, were obstacles I was now able to manage.

I was eventually able to return to school and all other activities. I’ll soon graduate from the University of Southern California.

However, this does not mean that I am the person I was before my concussion. 

The truth is that like Martinez, there are still days where I wake up in a haze and feel unsure of myself. Three and a half years later, I still deal with headaches and migraines that make it hard to function the way I want. My memory isn’t always as sharp as it used to be and from time to time I will still say words different than the ones in my brain. 

At one point, I wanted answers. I wanted to know what happened to my brain and why it doesn’t always feel right. 

However, the truth is that I may never know. 

We all go through experiences that change us forever, and I realized that this was one of those experiences for me. I realized that I would never be able to make progress if I didn’t love the new version of who I was. Acceptance had to be the way forward. 

We don’t have perfect solutions to help those dealing with post-concussion syndrome and we might not for a while. The best we can do for now is work to alleviate the symptoms. 

If you or someone you know sustain a concussion, get the help you need as soon as you can, and save yourself the pain that I put myself through by thinking I could just tough through it. 

We are not all professional athletes, but we are all humans — and we only get one brain. 

Remember to take care of yours.