This was pretty crazy to read, it almost exactly mirrors my path over the past 15+ years.
The sad truth we all need to accept is that doctors do not know what is wrong here. I've seen over 20 specialists in 8 states and counting, and gotten the same brick wall every time.
Basically, after years and years of searching and traveling, it boils basically down to this:
It is a brain problem, not an eye problem.
It MAY involve the trigeminal nerve, specifically the supraorbital branch that pierces the currogator muscle near your eyes.
It can be a screen issue or an issue with what drives the screen (good screens can go bad when switched to different sources)
There seems to be a likely sinus connection
And thats about it.
I've tried every medication under the sun, had more MRI's and brain scans than you can imagine, travelled all over the US and seen the top specialists, been to countless quacks, cooks, and snake oil salesman, did vision therapy till the cows came home, and none of it was a cure. The only positive things I found was vision therapy helped with one every specific case (credit card terminals in stores), a beta blocker seems to increase my resistance to CFL lighting, and migralenses help a little bit.
My current nuerologist, who I eventually settled on because he was the first one to level with me and not feed me bull, said that problems like these are not uncommon, they tend to go away as we age. And I have experiences that, I started getting this issues in my late 20's, I am 45 now and there are things that bothered me before that no longer do (CFL's used to be my biggest trigger, now they are almost harmless, although you rarely come across them anymore, and LED headlights on cars used to be awfulo and they have gotten much more tolerable over time). He said based on his observaitons these tend to age away around your mid 50's to 60's. Not a great diagnosis bu it's something at least