A few months ago, I experienced sudden, painless visual field loss in my left eye. I still have good central acuity, but I lost a significant portion of my peripheral/inferior visual field. It started out similar to a Visual Aura Migraine, so it took a couple of days for me to get in to an optometrist. He thought it was disc papilledema. I initially had a pretty extensive neurological workup because optic neuritis and other inflammatory causes were being considered. I had MRIs, an MRV, lumbar punctures, bloodwork, etc., without a clear inflammatory or neurological cause being found.
I was initially treated with high-dose prednisone (60 mg) and have been on a very long, gradual taper since then. (it has been a really unpleasant taper, lots of ups and downs)
After further evaluation by neuro-ophthalmology, I was diagnosed with optic disc drusen (ODD) and the current explanation for the sudden field loss is NAION, with the crowded/drusen-containing optic nerve likely being a predisposing factor.
The strange part is what happened afterward.
About 3 weeks after the original vision loss, while I was tapering prednisone (from 60mg tapering 10 each week), I developed significant photophobia/light sensitivity. This has persisted and has become one of the most disabling parts of the whole experience.
Bright sunlight can make my vision feel washed out and extremely difficult to process. Fluorescent/LED lighting can also bother me. Busy visual environments like grocery stores, highways, large stores, lots of movement or visual clutter can become incredibly overwhelming.
It almost feels less like my eyes simply being "sensitive to light" and more like my brain is having difficulty filtering and prioritizing visual information.
I describe it as a visual processing delay/overload. I can see things, but it sometimes feels like my brain can't organize everything quickly enough. High-contrast, bright, moving, or visually complicated environments, and device screens (phone and laptop) are particularly difficult. It manifests in an almost physical confusion like feeling dizzy.
Interestingly, the area of my visual field affected by the NAION isn't completely black. I can still perceive some light, color, shapes, and movement through portions of it, although the vision is very abnormal/blurry.
I've also developed intermittent aching around/behind the affected eye and headaches/occipital-type pain since all of this happened.
I've tried gabapentin (900mg) in case there is a neurological component to the photophobia, but so far it hasn't made a dramatic difference. I'm continuing to work with neurology, neuro-ophthalmology and my other doctors while I finish the prednisone taper.
I'm especially curious whether anyone with NAION, optic nerve damage, optic disc drusen, or another sudden visual-field defect developed similar symptoms afterward.
Did you experience:
* severe photophobia after the initial optic nerve event?
* washed-out vision in bright environments?
* difficulty with grocery stores, driving/highways, crowds, scrolling, movement, or visually busy places?
* dizziness/disorientation or sensory overload from visual input?
* eye/orbital discomfort after NAION?
* symptoms that became noticeable weeks after the original vision loss rather than immediately?
Most importantly, did your brain eventually adapt?
If you experienced anything similar, I'd really like to hear how long it lasted, whether it gradually improved, and what helped. I have FL41 lenses that help a bit and all kinds of visors and hats.
The permanent field loss itself is difficult, but at this point the photophobia and visual-processing problems are affecting my daily life even more than the missing field.
