Need some hope - Photophobia still present 2 years in
Hey everyone,
I know there have been many posts like this one, and some actually do offer hope in this regard, I would like to see if more people have recovered from light sensitivity after it having persisted for nearly 2 years.
Mine is persistent and kind of always the same, it's acccompanied by eye floaters and other more subtle visual disturbances like slight visual snow on edges and my vision vibrating when being still, these last two require me to focus on them to notice though. The floaters are by far the most annoying aspect.
My kind of light sensitivity is also accompanied by muscle tension, which I can feel instantly as certain light wavelengths hit my eye, mostly in the neck, my jaw muscles, suboccipitals and traps are also affected and remain tight basically at all times because of this. It's so bad only dry needling will release the traps.
These are my only symptoms really, I can function normally outside of them, energy levels are fine (as long as they don't get syphoned by spending too much time in bright light), sleep is normal, fitness too, and no anxiety or depression either, though of course, I feel hints of despair sometimes, seeing this not healing.
As everyone else here, all tests by all relevant specialists (opthalmologist, neurologist, neuro-opthalmologist, etc.) have shown nothing. Clean bill of health. The only thing noteworthy is that in a recent immune pannel, my CD8+/CD4+ ratio was 0.54, which was even lower than all the ones I've seen reported on this subreddit, and this almost 2 years after infection.
As for my attempts to do something about it, like many here I've tried many supplements, to no avail. I've tried nerve blocks in the V1, V2 and occipital area. V2 was the most respite I've had with slight improvement for a few days. I've tried a stellate ganglion block (SGB). Nortryptiline which I had to stop after a few weeks because it made me wired, disrupted my sleep and increased the visual disturbances. And most recently, 8 days ago, I've tried botox in the areas covered in this study: https://pmc.ncbi.nlm.nih.gov/articles/PMC7350146/ Not much to report for now except muscles loosening even in areas not treated. And of course I'm now wearing tinted glasses at almost all times, but as the studies show, this only helps for comfort and while you're wearing them.
So I'm looking for some hope here, has anyone seen this particular symptom go away for them? Particularly after more than 2 years? What do you think has helped you? I expect many to say just time, and that would be fine for me. I think the uncertainty about it is the worst.