Doctors, Treatments, and Life with Post-Concussion Syndrome
When I finally saw a specialist that summer, he advised me to stop working to focus on recovery and referred me to rehabilitation therapies. It felt good to hear that someone would be able to help me, and that everything I was going through wasn’t just “in my head” - it was due to a traumatic brain injury and while most people fully recover, some do not. I was confident I would.
But not working and turning my life upside down seemed absolutely crazy to me. I asked, how could this have happened from such a minor hit to the head? He taught me that the event of a concussion doesn’t necessarily matter how hard you hit your head, it’s about the chemicals that rush to your brain during the event and how they should redistribute afterwards. Even from a closed-head injury, the redistribution during the recovery period is what affects brain function. I realized that in the weeks following the injury when they should have been redistributing, I continued pushing my brain when it was at its most vulnerable.
In the months following, I went for weekly appointments with occupational and speech therapists, and was prescribed new glasses from the neuro-optometrist to help my eyes readjust.
I learned that my brain was not effectively filtering things that it had been filtering subconsciously before, which is why light and sound were particularly strenuous and overwhelming. (This is why the traffic noise outside my house was driving me absolutely bonkers!) I was dealing with “overstimulation” ALL the time - from the moment I woke up to the moment I went to sleep - and actually the traffic noise even affected me in my sleep.
I learned that my brain often wasn’t perceiving things correctly like it did before my injury, which then was affecting my vision; my eyes were straining and working overtime to process what my brain was perceiving.
It literally hurt to sing for more than a few minutes at a time. Singing in higher registers made my head feel like it was swimming and drowning. I think there’s research that could be done there, but perhaps it had to do with bone conduction and where the sound would resonate in my head.
It hurt to play piano... Think about all the signals your brain has to send to play piano! My brain had to coordinate moving my fingers, remembering chords and rhythms, how notes work together. If I wasn’t playing from memory, add the visual stimulation of reading music on top of all the brain power just to play… My temples would pulse and my migraines would flare up.
In this overstimulated state, it hurt to even LISTEN to music. It hurt to read. It hurt to watch movies. It hurt to concentrate. It hurt to be social and talk with friends. It hurt to walk and exercise. It hurt to be in public places because of all the visual and auditory stimulation. For the first year and a half post-injury, I wore dark glasses, floppy hats, and ear plugs whenever I left the house to help my brain manage the light and sound so that I could try to be seen as a normal functioning human being.
When my symptoms became even more painful developing into migraines, I got referred to Physical Therapy. I opted into a treatment called Multi-Sensory Therapy recommended by my doctors and therapists to help with overstimulation. For that treatment, I went through two weeks of laying on a moving table while listening to fragmented music and watching a light slowly blink and move through the spectrum of color. It was supposed to help my brain re-integrate the sensory processing systems. It was almost torture.
My confidence that I would make a full recovery slowly faded. When people asked how I was doing, I would reply, “I’m alive!” I certainly did not feel good; I didn’t even want to lie and say I felt fine. They would try to comfort me by saying “at least you look good!” That was a reality of having an invisible injury. People couldn’t see how hard I was fighting a constant internal battle. I felt like an outside force was trapping me into being someone I didn’t want to be. It was even scarier to realize that the force was actually inside me. I felt betrayed by my brain. It was limiting me and I hated it for that.