Doctors, Treatments, and Life with Post-Concussion Syndrome

I finally got in to see a specialist two months after my concussion who sat me down and told me I should not be working. 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 that 98% of people recover (of which I was extremely confident I would be one). 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 all about the chemicals that rush to your brain during the event and how they should redistribute afterwards. The redistribution is where the problems develop. (In the week following the injury when they should have been redistributing, I continued pushing my brain when it was at it’s most vulnerable by working on computer screens, playing piano, singing, dancing, and performing in bright lights with loud sounds.)
It was after all of this that my doctor referred me to a neuro-optometrist, occupational, and speech therapy. The rehabilitation therapists were booked full for another 2 months, so I didn’t even start treatment until 4 months after my initial injury.

It is clear now that all of these factors play a part in why Post-Concussion Syndrome (aka Persistent Concussion Symptoms) have developed so significantly in my life.
In the months following, I went for weekly therapies and tried new glasses prescriptions to help my eyes readjust. I learned that my brain was not 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 still 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. 

When my symptoms became even more painful developing into migraines, I got referred to Physical Therapy. I also paid out of pocket for a treatment that insurance deemed “experimental” called Multi-Sensory Therapy recommended by my doctors and therapists to help with overstimulation. 

I learned that in order to “get back to normal” as I liked to think of it, I had to get my symptoms down to baseline and start building tolerance from there. Do you know how hard it is to do “nothing”?! I essentially moved out of the city where I was living and home to the country where it was quiet with my wonderfully supportive Mom who would drive me to my therapy appointments, cook for me, and advocate for me. My brain felt best (but still not normal) in a quiet and dark environment.

It literally hurt to sing for more than a few minutes at a time. Singing - especially in higher registers made my head feel like it was swimming and drowning. I’m sure now that it had a lot to do with bone conduction. It hurt to play piano... think about all the signals your brain has to send to play piano - moving your fingers, coordinating them, remembering chords and rhythms, how notes work together, then 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. 

EVERYTHING was overstimulating for my brain. 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 or 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. 

Unfortunately my brain did not make big strides in improvement like I expected of myself and I was deemed unable to return to work, effectively being terminated from my position at the university and stepping down from my church music director and theatre director positions in the fall of 2019.