You know that feeling after an all-nighter or just a night you stayed up way too late? Or the feeling of a hangover (for those of age reading this)? You feel groggy, nauseous, irritable, like you can’t think straight, just not yourself. But you know you could nap that day or get a good night’s sleep the next night and wake up and feel okay again. The good part is you know that feeling is temporary and it will come to an end. Well, imagine that’s how you feel every single morning when you wake up. It never fades. That’s what this recovery is like. It’s like you are running on empty and on reserves that are almost completely depleted.
In the week that followed the concussion, more symptoms kept emerging until suddenly I was buried in symptoms. I was getting worse and not better. Layer after layer, I was inundated. Somehow, I was still in denial about this injury. I kept thinking, “Okay, just another week and I will be fine.”
I could feel everything I was in control of slowly slipping away out of my grasp. Within just a couple days, I could not tolerate driving. It was the worst driving down streets lined with anything – trees, cones in a construction area, houses. Or a sunny day when the light from the sun causes the effect of a strobe light as it shines through the trees. This would cause so much dizziness and I could feel my eyes jumping back and forth, unable to focus. It was like everything was closing in on me. If it rained, the windshield wipers swiping back and forth made me so dizzy to the point I would almost throw up.
I was suddenly unable to look at my phone without my eyes hurting or feeling cross-eyed. Scrolling on my phone caused me so much dizziness and nausea. The light sensitivity became so bad that it was like the sun was able to penetrate directly through my skull and into the nerves of my brain. I could not bear to have my eyes open without sunglasses or tinted glasses. I started wearing glasses with a yellow/orange tint. To me it was highly embarrassing but I can’t tell you how many comments I received on how “fashionable” they were (and are).
The second night after the injury I started waking up at 0300 AM and could not fall back asleep. Sleep just wasn’t happening. My neck felt so stiff like it was a cement block. The ringing in my ears became so loud, 24/7. Sometimes I would think there was an alarm going off. I’d search for it to realize it was my tinnitus, and then I’d feel crazy.
Nine days post-concussion, frustration started to settle in. From my journal:
“I thought I’d be better by now but I feel like things are actually worsening every day. I am becoming frustrated with my body. Something isn’t right. I do not feel like myself. I can’t focus and everything is blurry. Waking up with a headache and neck pain every day.”
My first appointment with the concussion specialist wasn’t until 12 days post-concussion. It was the soonest I could get in. I thought “Okay, the Cleveland Clinic Concussion Center can get me better.” The appointment was a blur.
At each appointment at the concussion center, each patient is tested with the C3 Logix application on an iPad which tests balance, reaction time, memory and vision. Balance is tested using the BESS (Balance Error Scoring System) which tests balance in a range of foot positions on a foam and hard surface.
My eyes were too sensitive to movement and light to do any of the testing on the iPad. My balance testing had so many errors that I was embarrassed. My reaction time was so poor that I didn’t fall into the ranges for an athlete. I couldn’t stand on one foot without having to reach out to hold on to something in order not to fall. How did I go from being a competitive athlete to this?
There is a concussion symptom severity score taken at each appointment. It includes a total of 27 symptoms and each symptom you are experiencing is ranked from a severity score of 0 (not experiencing) to 6 (severely experiencing). I was experiencing 22 of the 27 symptoms, most ranked 5 or 6. To this day, I still experience 22 of the 27 symptoms.
The physician was concerned that 12 days post-concussion, my eyes were completely glazed over and my symptom severity score and physical exam were that of a patient who had just immediately sustained a concussion.
The physician ordered an MRI of my brain, referred me to an optometrist who I would see the next day and vestibular rehabilitation.
The loud thumping of the MRI machine was nearly unbearable. It was like a hammer directly striking my skull over and over again. I left the machine with a pounding headache and nausea. I felt so lightheaded and hot like I was going to pass out. Completely drained, I laid in bed the rest of the day.
The next day I was evaluated by the optometrist who diagnosed me with convergence insufficiency and accommodative insufficiency. In short, these diagnoses mean the eyes have an inability to sustain focus on a near target and one was caused to turn out instead of in with the other eye leading to double or blurry vision. I was prescribed reading glasses to aid in focusing. The glasses had a tint to them to block blue light and help with light sensitivity.
I was advised to follow up again in one month to determine if I required vision therapy. This didn’t feel right to me and I felt like my condition was being minimized but I listened and went on my way. To this day, I wonder if I had been rehabbing my vision for that month my eyes would be in better shape today. I did start vision therapy with this optometrist after my follow up one month later and went every two weeks. This lasted several months with no notable progress at all. Later, I will discuss my strong opinion on finding an eye doctor who specializes in neuro-optometric rehab rather than vision therapy and the importance of seeking such treatment immediately after the injury.
I then followed up with a therapist in vestibular rehabilitation. The vestibular system is a sensory system that is part of the inner ear and sends the brain information about spatial orientation, motion, head position and balance. I was referred here because of the balance issues and dizziness I was experiencing. We focused mainly on head and eye movements which were causing me great dizziness. I didn’t feel like all of my concerns were being fully addressed and noted no progress whatsoever with the recommended plan but went along with all of the recommendations because that’s what I was told to do. I continued this for months with no improvement at all.
The quick referrals to these specialists are something that I appreciate, however, I do believe it should have been recognized at those referrals that my case was too complicated and needed more complex care. At the very least, I felt like my concussion was downplayed by these providers. I felt like I had to take what the medical model was throwing at me when really that time I was feeling like it wasn’t right or wasn’t adequate, I should have been my own advocate and found more options.
If you are suffering from a brain injury and have a feeling like the care you are receiving is not right or your concerns are being minimized, my best advice to you is to be your own advocate. If you are the loved one of someone suffering from this type of injury and are seeing no notable improvements, you should be their advocate.
Our bodies have a remarkable ability to adapt and so bad behaviors can be learned quickly. During that time period, my brain became accustomed to the dysfunction of my eyes and vestibular system. It is harder for the brain to unlearn a behavior rather than learn a behavior. If I had received the proper treatment early on, maybe I would not have carried these dysfunctions with me to this day. I didn’t know any better because these were the providers I was told to see and so continued even though my gut was telling me it was not right.
I feel like the medical system failed me. I don’t say this lightly because I am a healthcare provider and was part of the medical system. As I have stated before, I was once a part of the problem in the way I brushed off concussions and I may have even been the first provider to have failed a patient experiencing something similar.
This needs to change.
Every treatment modality that has provided some sort of progress for me over the past 27 months has been something I had to research and find on my own.
Be your own advocate.