I have been working on this post on and off for some days. It is very easy not to believe me, because I am an outlier.

Let me summarize my situation first with an example first and then tell you my story. Vision abnormalities are not uncommon in PCS patients. Many of us have gone to do vision therapy. For some, the session is uncomfortable and triggers symptoms (sx) for the time of the session. For some sx can last up to days, for some it can last to more than a week, and my doctor has seen some patients that when they are pushed too much, can be in trouble for weeks. That is me, except that I am even more sensitive than that.

If you read my post you will understand that this is not psychological, since I was not aware in the beginning that I had vision problems. My pathetic vision sensitivities explain some of the early mysterious set backs I got.

Concussion: 07/14

After 2 difficult weeks, I was 99% fine for two months.

First major set back: flight back from Europe in 09/14. Sx went up as high as 7/10. Averaged 5/10 over the next 4-5 months, then went down to 3/10 and stabilized there. Why? We didn't know back then. By the way, 10 is normalized to how I feel today (in a maths/statistical sense).

Second set back: again, flight back from Europe 09/15. Sx went through the roof again and developed new problems such as noise sensitivity. Until then I was able to play piano, I had to give this up forever since. Sx jumped to 8/10 and stabilized a 6 months later to around 4/10. Why? again we still don't know.


Third set back (of equal proportion): After being at around 4/10 for a while I decided to dedicate myself more to therapies: vestibular and vision. One day I pushed the vision therapy way above what I was doing, and ended up crossing my eyes. I was awaken at night with a migraine that lasted 2 weeks, my sx went from 4/10 to 9/10 and stayed there for 4 months, after that I saw improvement and went down to 6/10 and stabilized there.

But that event triggered a Eureka moment by me and my doctor. We realized how ridicoulously sensitive I am to visual stimulus, and that the effect of that stimulus is mostly felt later, not during. So why did I get these setbacks on the flight back from Europe twice, once in 2014, and once in 2015, and only on the way back? The answer: I was watching movies on the way back. On the way there I usually go a night flight, so I sleep most of the time, or try to. In other words

In other words watching about 2-3 hours of movie on a screen 2 feet away from me, led to about a full year of pain, and some of the damage was not reveresed. I was never able to go back and play piano for example.

Scientifically, my sensitivity to vision is absolutely not psychological, since when the flights set back occurred I was not aware I had vision problems, I was not worried about it, and I was not feeling any discomfort during.

A second concussion in 2017: sx went from 6/10 to where I am today 10/10. Again, 10 being how I feel over the last few months and not the maximum possible pain (not the screaming face you see at the hospital).

Since the second concussion I was never able to go back to work.

There is no other story like this. Had there been any, me and my doctors would not have been confused for years now. But all the pieces of the puzzle came together, my system is ridiculously sensitive to vision. I have been working on rehab vision but it is extremely tricky. Given the severity and delayed nature of my sx, it has been one step forward and one step back.

I now 'work' on a B&W large monitor that is 7 feet away from me, and I close one eye with a patch. And I am unable to do that much because the screen light and the scrolling makes me dizzy.

How come I am unable to work close-up with an eye patch on? still a mystery. Not even on paper. It might be not just the brain not liking convergence, but the eye muscles/nerves too. I have no idea.

My job is pretty much equivalent to a tenured professor at a top university. As long as I can read some I can keep my comfortable and prestigious job. I don't need to do much effort for me not to get fired. Put simply, if I can reliably read and write for around 3 hours a day on average I can keep my job. I did not come close to achieving this since 1.5 years at least.