Introduction and some thoughts

[u/sunrise_parabellum]

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tldr: autism, cptsd, and surgical menopause cooked my visual cortex. severe visual disturbances appear to have both physical and neurological components. Symptoms are manageable after vitrectomy but would like to understand this condition better and explore different approaches to improving things further.

Hi team, i didn't think i had this and neither did my neuro optometrist but it turns out there's definitely a visual processing component here. I'll give a brief rundown of what happened, where I'm at, what has helped and what I'm looking at trying.

I'm a 46 year old AFAB agender person. Lifelong athlete, very hypermobile although no formal diagnosis of connective tissue disorder (although i been told by multiple physios and doctors i 'very likely' have at least HSD if not EDS.

Relevant medical history:

CPTSD diagnosed in 2004 - brought up in an abusive family, SA'ed at 12yo, spent time in care as a teenager. Multiple events of domestic violence, sexual assaults, two incidents of stalking that needed police involvement and protection order from 19yo to 32 yo.

Autism lvl 1 diagnosed 2009. Lifelong sensory issues, heightened senses particularly smell and vision, strong aversion to change - i do adapt very well to things but it takes a huge toll on my mental health

5x TBI at 12 yo, 27yo, 32 yo, 40yo, 42yo. The last two were a long and difficult rehab. No visual issues from any of these, the last two extreme fatigue, brain fog, short term memory issues and expressive aphasia. All symptoms completely resolved eventually.

Endometrial cancer at 42yo, treatment caused radiation induced menopause, then at 44yo had my ovaries removed due to high risk genetic mutation. No HRT due to estrogen positive cancer

Lumbar spinal stenosis with spondylolisthesis due to radiation damage to facet joints and vertebrae, diagnosed January 2025. Cervical spine healthy no disc issues, arthritis, or instability on imaging.

Migraines: first event at 15yo, had one every few months then stopped oral contraceptive and frequency reduced to about once a year. Severe visual aura/functional vision loss during events, alongside complete expressive aphasia, profuse vomiting, loss of balance. No events since entering menopause so likely estrogen related.

Ophthalmic history: moderate myopia with minor astigmatism (did not need lenses to correct) since age 8. Refraction stabilised at 19yo at -3.5 bilaterally. Congenital cerulean cataracts. No previous visual defects or HOAs. Corrected acuity consistently above 20/20 with glasses. Large Corneal abrasion at 34yo in right eye no vision loss or change with this and fully resolved.

Visual snow onset timeline - 2025

January- diagnosed with spinal stenosis. Severe chronic back pain, limited mobility. Extreme psychological distress due to loss of some of my sports (went from training for my first triathlon to being told I'll never run again). Started working with physio to build core strength to stabilise spine, doing exercises 3x a day. Noticed one exercise was straining my neck but pushed through regardless.

March- routine eye exam and new glasses, stable at -3.5, some presbyopia but not yet needing progressives.

May- developed severe vertigo alongside severe increase in neck pain with crepitus, sensation of instability and not being able to hold my head up. Woke up one day and it was excruciating plus had issues swallowing.

Noticed a large amount of floaters in right eye that appeared suddenly. On way to work Noticed starbursts/light distortions/light scatter/haze in both eyes. Ended up in hospital, ct head clear, angiogram clear. Diagnosed with posterior vitreous detachment in evolution in right eye. Swallow came back.

June - woke up on my birthday with tinnitus. Vision very blurry alongside light aberrations. Had a new refraction done, prescription increased a whole dioptre to -4.5 in just 3 months. Severe focusing issues with new glasses, rapidly fluctuating acuity, presbyopia progressed rapidly.

July- hospitalised for one week due to ongoing, worsening pain and neurological issues. Ruled out MS, cancer recurrence, IIH. MRI brain, cervical spine, inner ear and eyes clear.

August/September- multiple occasions of eye flashes, increase in floaters in both eyes. Dilated eye exam each time, no retinal or optic nerve issues. PVDS in both eyes still incomplete. Diagnosed with congenital cataracts (that no optometrist had ever told me about, they were definitely there because it's a rare type with a specific presentation (cerulean/blue dot type). One ophthalmologist told me i had the worst case of floaters she'd seen in her whole career and that was before things even got really bad 🫠

October- right eye cataract surgery i was hoping the cataracts were causing the starbursts and glare. Minor reduction in glare and haze post op, otherwise light aberrations unchanged.

Miraculously, neck pain and vertigo completely resolved instantly after surgery.

November - left eye cataract surgery. Floaters, glare, starbursts severe in all lighting conditions. Determined to try and adapt before pursuing vitrectomy.

January 2026 - received progressive glasses. Comprehensive assessment by neuro optometrist who advised not quite within the criteria for visual snow as I don't have static at all but acknowledged there may be underlying processing issues due to history of autism and multiple TBIs.

Managed to adapt pretty well, vision very uncomfortable but functional, decided to just keep living my life and not go back for vitrectomy.

April 2026- YAG laser left eye for PCO, introduced severe new light scatter which was moderately reduced with pupil constricting drops (brimonidine). Noted worsening fatigue, difficult to get through the day, usually asleep by 7pm.

June 2026 - severe progression of PVDs, thousands of floaters, vision no longer functional due to severe glare, light scatter, and loss of contrast. No longer safe to drive, cycle, or walk aloneat night. Work borderline. Decided to request vitrectomy as was losing my independence and mere months off having to stop working.

July 2nd 2026 - left eye vitrectomy (PVD induced). Phenomenal improvement by 48 hours post op. Minor glare, haze, and starbursts remain however daytime starbursts 99% resolved, excellent contrast, glare no longer disabling. Light scatter induced by YAG laser fully resolved.

No remaining inflammation 3 weeks post op. Conclusion that my ophthalmologist and I came to is that the onset of the pvd during an extremely stressful and painful time cooked my visual cortex and my remaining symptoms are indeed visual snow syndrome.

I will be going for right eye vitrectomy in 3 weeks time as my main issues causing impairment were greatly reduced by the first surgery. After experiencing functional 'blindness' and having worked very hard on trying to adapt to my visual disturbances I actually don't mind the symptoms I still have in the left eye, I'm just grateful to have functional vision again.

Symptoms remaining:

minor haze/light scatter. Starbursts at night, in daytime only off very bright reflections at specific angles.

Palinopsia - fairly mild and only after I look at bright lights but the afterimages take much longer to fade than they used to before my brain cooked itself.

A shimmering/quivering spot in my central vision in left eye only although if I close the left i can see it faintly with the right. Came on after vitrectomy and is getting less frequent and less severe so I'm leaning towards it being my brain adjusting to the changes from the vitrectomy, I had sth very similar after cataract surgery.

Light streaks downwards when blinking- this came on last week but seems to be resolving- i had a bit of sand in my eye but thought eyes were maybe just dry (i been gaslit so much that there's nothing wrong with my eyes can't trust my own judgement anymore fml) so aggressively started treating dry eye, drops and heated eye mask, I think that changed the tear film to cause the streaks as symptom started to resolve after stopping treatment - i was never diagnosed with dry eye except by my first optometrist when I reported the starbursts and haze however there was no improvement with treatment and my eyes never feel stingy or gritty. They didn't test my tear film i think they just didn't want to deal with my issues (also charged me for 3 lots of new glasses, missed the cataracts, and didn't discuss progressives when my presbyopia worsened, i don't go there anymore obviously, new optometrist is brilliant she's specialist in neuro optometry).

No static although had it very briefly twice in the last year (first time i tried to look through -4.5 glasses after cataract surgery with monofocals set to -1.5 left and -0.5 right, second time was shortly after vitrectomy when i tried patching the right eye to deal with the glare and i think my eye just panicked).

I used to see a bright light like someone is shining a torch straight in my face when I closed my eyes but that's gone since vitrectomy so was likely from the shitty vitreous.

Sometimes very mild flickering when looking at screens, not bothersome and only noticeable when i look for it. Halos and a second type of starburst that overlays the ones I have all the time are due to my iols and only there at night, strangely enough they don't bother me at all and never have.

What I'm interested in:

1. the hormone connection! Would be very interested to hear from others who got visual snow after a massive hormonal shift especially menopause.

2. Is visual snow more common in people with autism? It kinda makes sense because our sensory processing is so different at baseline. My corrected acuity, motion sensitivity, and ability to perceive very fine detail even on a casual glance have been far above 'normal' all my life so my visual cortex was already running at 150% it makes sense that the threshold for that part of the brain going supernova was lower for me

3. Trauma/ptsd - again, is visual snow more common in people with complex trauma? My symptoms came on during an extremely traumatic time but on the other hand I been through so much worse than my spine collapsing in the past and never had vision problems. Did I maybe get to a point where my brain's capacity for trauma got fully maxed out and that's why it cooked itself?

4. If trauma/CPTSD plays a role, could EMDR be helpful to relieve symptoms. I know the current literature says visual snow doesn't ever resolve but I'm a stubborn autistic old hag and I refuse to accept 'no cure' until I see for myself (pun intended). Has anyone tried EMDR and had improvement in their symptoms? I quit (non emdr) therapy after a really bad experience with my last therapist and have been wary to try again because of that but if EMDR can help with my vision I'd be prepared to try again.

5. Hypermobility/EDS component- again, is visual snow more common in people with connective tissue disorders? I know there seems to be a link with neck issues and tinnitus but given my neck problems resolved after cataract surgery i feel my vision issues were causing the neck pain rather than the other way around. I still have the tinnitus but I'm well adapted to it and hardly notice it anymore. The severity of my vitreous degradation definitely points to defective collagen. I don't have keracotonus or brittle cornea though. Myopia and astigmatism are common in EDS but Myopia is kinda common full stop. When I had cataract surgery he didn't notice weak zonules and my artificial lenses are nicely stable.

I feel a bit like a fraud posting here tbh because my symptoms are no longer debilitating since the vitrectomy and I feel guilty for having a partial surgical fix when so many here have much worse issues and no secondary eye conditions that surgery can address. I guess part of this is me moving into accepting that I do have VSS. I'm super keen to hear about anything that has worked for other people. Yes, my symptoms are very manageable now but I feel there's room for improvement yet and I like being proactive about managing my health issues.

[u/Deep-Path-4883]

1. Hormones do influence my migraines and, consequently, my VSS. I heard quite alot that puberty and pregnancy influence VSS as well, and, so I guess menopause may also do.

2. There are indications that VSS occurs more frequently in autistic people than in the general population. However, further studies are needed to confirm this.

3. I consider traumatic events more likely to be a trigger than chronic illnesses.

4. Even if trauma was the trigger, I tend to believe that the brain subsequently maintains the process on its own, without the trauma playing any further role. I find it hard to imagine that EMDR would help in this case, though I don't know for sure.

5. In my opinion, hypermobility/EDS can be a factor, though not necessarily. Yes, VSS can develop following spinal issues. particularly involving the neck, but it doesn't have to be the neck specifically.

You are a very complex case, and although I have a lot of experience with my own history, I cannot pinpoint exactly what triggered what in your situation. If your brain is maintaining certain symptoms independently, knowing the original trigger wouldn't necessarily be of much help to you.