Navigating the Ups and Downs of Dr. Sarah’s Concussions
Every now and then, I write a blog post from my own personal point of view. I do this to share my experiences and my struggles. While it is not necessary to have had an injury (or multiple injuries) to be a good physical therapist, I do think being previously injured provides unique insight into what someone is going through. I also believe that there is comfort in knowing that you are not going through something alone. And, with a concussion, it can be a very lonely experience since there are no physical signs of injury. It’s all in your head, and that can mess with your head.
The Background
Before I launch into my most recent (and hopefully last) concussion, it’s important to share a little background so that my concussion makes sense. The way I got my concussion – going down waterslides at the Wisconsin Dells – is something that people do every day without any side effects. However, once you get one concussion, it’s a lot easier to get another, regardless of the magnitude of the concussion. I most likely have had quite a few previous concussions.
From middle school through high school, I competed in speed skating. I did fairly well, breaking about a dozen state records, placing at Nationals, and even competing internationally. However, I also fell a lot. If you’re not familiar with short track speed skating, it is done on an ice hockey rink. When you fall, you slam into the boards. We always put pads up to cushion the fall, but you still got pretty banged up. I fell a lot, hit my head a lot, and always got back up and shook it off. My competitive nature got the better side of me and I pushed through or ignored any symptoms or mini-concussions I likely had at the time.
The First Major Concussion
Fast forward three years, and I was in my last year of undergraduate education. I was learning to snowboard – harmless, right? – and fell and smacked the back side of my head into the ground. I was dazed, temporarily lost sight, and handed my snowboard in for the day.
In the days that followed, my symptoms gradually improved. I was a “so-so” patient in terms of following the doctor’s orders. I was instructed to avoid screens, to not exercise, and to take it easy. What I ended up doing looked a lot more like watching screens until I got mild symptoms, exercising while keeping my heart rate low, and going about my business but not pushing it.
While this wasn’t best practice at the time, turns out that is exactly what you’re supposed to do for concussion recovery. Rest a full 24 hours and then get after it, keeping all symptoms to moderate or less so they resolve.
Things Took a Turn for The Worse
However – and this is the big however – I was not told to not drive. This hadn’t occurred to me because I had no symptoms while driving in town. Because of this, I embarked on a seven hour road trip through a blizzard from Michigan to pick up my then boyfriend in Wisconsin. Little did I know that visual stimulation (snow coming at you) is part of a key domain involved in treating concussions. A little is fine, but if you do a lot of the activity, you end up overdoing it.
Well, I definitely overdid it. When I arrived, I couldn’t think straight, couldn’t see straight, and felt very weird. I’m not much of an emotional person, but I randomly burst into tears in the driveway and cried uncontrollably. I wasn’t sad; my brain just wasn’t processing things right and as a result my body was doing things I didn’t understand and couldn’t control. I was scared.
I did make the six hour trip back to school, but I felt like I was going to puke the whole time. I didn’t do any of the driving (I learned my lesson), but it didn’t matter. The trip still wore me out just from the bumpiness of the road.
The Slow Road Back to Normal
What followed after that was five weeks of living in my dorm room being unable to attend class, leave the dormitory, look at a screen, or do any physical activity. I had a weekly “check-up” where my boyfriend would drive me up the large hill (because I was unable to walk it) to get assessed to see if my symptoms were low enough to start going to class.
I hated those appointments. There was a strong desire to lie because I wanted to be back in school. It was my senior year and I was concerned about passing. I had already been accepted into physical therapy school and if things didn’t turn around, my life was about to drastically change. My boyfriend insisted on coming in with me to those visits (which I’m pretty sure he did so I couldn’t lie). Deep down, I knew accountability was what I needed, but it certainly wasn’t what I wanted.
Things Took a Turn for the Worse (Again)
If being stuck in a dorm room watching everyone else have fun and worrying about whether or not you would actually graduate wasn’t bad enough, during my recovery, I started to get dizzy spells. This wasn’t a “things are off” feeling. It was a “I need to hold onto something else, shut my eyes, and wait for things to go away” feeling.
Unfortunately, it happened every time we got into a car, I sat up from bed, or I turned. It was ridiculously annoying. I quickly learned that if I moved my whole body instead of my head, I could lessen the symptoms. But, that also meant I looked like I was eighty years old when I moved. The trade-off wasn’t ideal.
Turns out, I had benign paroxysmal positional vertigo (BPPV). However, I was not formally diagnosed with that, so I didn’t get treatment. I was incredibly frustrated in physical therapy school when I learned what this was, what caused it, and how to fix it. When properly treated, it fixes itself almost immediately. If not treated, it slowly habituates over time. Mine did habituate, but the process was less than pleasant.
As time passed, my symptoms improved. I went back to school, passed my classes, graduated, and had very minimal to no symptoms. By the end of the semester, I was back to normal. At least, I felt like I was back to normal.
The Second Major Concussion
Once you have one concussion, it’s easier to have another. This is why going down that waterslide in the Dells did me in. I’ll spare you the story of how it happened simply because I have no idea how it happened. There’s two possible options I can think of. One, I blacked out on an enclosed slide and didn’t know it. Or, two, one of the times my body smacked the slide, it transferred the force to my head. I don’t think I’ll ever know how it happened and at this point, how it happened doesn’t really matter. I don’t plan on going on anymore waterslides anyway.
At the time, I had no idea it had happened. The following morning, I woke with a headache and not feeling super great, but I went to work anyway. The next morning I did the same thing. However, at the end of the workday, I found myself jumping from task to task, unable to concentrate on what I was doing at the time. For me, this is highly unusual. I’m typically very focused and organized during a treatment session.
To put it bluntly, I felt drunk (obviously without any of the alcohol). When I got home, I tried to figure out what was going on. I ended up calling my father-in-law who is a pediatrician. We connected the dots and realized that the previous weekend, on the waterslides, I had gotten a concussion and had not known it.
The Journey to Recovery Starts
The next morning, I contacted my boss. I informed her of what had happened (as well as my previous history of concussions), and telling her I couldn’t come into work. I had no idea when I would be back to work and would need to get doctor clearance in order to do so. This began a long eleven weeks of being alone in our apartment.
Over the course of my concussion, I listened to a lot of audiobooks on how to start your own business (this actually is when I started planning Resilience RX). I completed an obscene amount of puzzles and baked more cookies than any individual should eat. It was a very lonely eleven weeks. I missed out on family gatherings as there was too much noise, too many people, and too much stimulation). I couldn’t workout, which was my main form of stress relief. In addition, simple tasks, such as showering, became so exhausting I needed to take a nap after them. I had no idea when things were going to get better. We also had a few incidents along the way where my head got hit again and things worsened.
There’s a lot more details I could talk about, but I think you get the picture. It sucked. On top of that, my husband was no longer employed. My disability insurance was unorganized and hadn’t paid a dime. There was a tremendous amount of pressure for me to get back to work quickly.
Finally, Back to Work
So, back to work I went. It was – again – not a fun process. Looking back, I pulled the trigger to go back to work too soon. I was unable to drive, so I was reliant on my husband or my mother-in-law to take me to and from work each day. The lack of independence associated with that messed with my head. I couldn’t go anywhere or do anything without someone else because my brain could not tolerate the visual stimulation of driving. It should not have been embarrassing, but it was.
While I was officially back at work, it was more like “back at work.” Initially, I could only work for two hours at a time before I took a 30 minute break. During this “break” I slept with an alarm set so I would wake up to go back to work. I started with four hour days and progressed to eight hour days over a couple weeks. I also wore blue-light blocking glasses because I couldn’t tolerate looking at any screens.
Over time (months), things improved. By July 2018 (the concussion happened in October 2017), I drove myself to and from work every day of the week for the first time. At this point, I was still wearing blue-light blocking glasses. I also didn’t tolerate loud noises and wore earplugs at weddings and church to make life more bearable.
The Next Two Years
Since then, things have continued to slowly improve. I did a lot of research into concussions, how to treat them, and current best practice. I got a consultation from a concussion expert in Washington for my post-concussive symptoms. There were still things I struggled with (looking at screens, riding in a car as a passenger, knowing where my body was in space).
Things continued to improve, but my brain still limited me occasionally. I enjoy CrossFit and one of things I wanted to be able to go upside down. No matter how much I wanted it, my body kept saying no. It’s hard to explain, but going upside would cause me to become dizzy. My head wouldn’t understand where my body was in space and I was unaware of my surroundings. I figured if I couldn’t identify where I was in space, going upside down probably wasn’t in my best interest.
It took a lot of graded exposure, but in the spring of 2020, I finally went upside down with minimal dizziness by walking my way up the wall. That was step one. The next step was adding a handstand push-up in. After working on it for many more months, as of this past April (2021), I was officially able to kick up to the wall and do a strict handstand push-up with manageable dizziness. Now, I’ve progressed to kipping handstand push-ups. I still get dizzy, but things are gradually improving.
My next goals are to be able to ride on a boat (the bumpiness is too much for my head still) and be able to ride in a bus in a third world country (seeing Machu Picchu is on my to-do list and I’ll need to be able to ride a bus to get there and explore Peru).
It’s Been a Long Road
To say it’s been a long road is a bit of an understatement. However, instead of focusing on that, what I want people to take from this is how frustrating things can be if you don’t have proper treatment from a concussion. Undoubtedly, my recovery would have still been a prolonged one for my second major concussion, but with proper care (I was simply told to “rest and things will get better”), things would have progressed much faster.
My hope with sharing this is that others don’t have to endure what I did when there are much better alternatives. Concussions are something that the large majority of healthcare practitioners (general practitioners, family doctors, pediatricians, even physical therapists) are not well versed in. This is something I would like to help change. If you know someone who is struggling with post-concussive syndrome, please share this with them. I would love for them to know that things can and do get better and that there is more to treating a concussion than resting.