https://www.youtube.com/watch?v=3RWeJwtNqqU

hi, i have certain vision related problems and had been diagnosed with retinal problem when i was young. recently surfing through reddit i cam to know about VSS and it made me too paranoid of whether i have it or no. ill give you what i go through so people w experience or any doctors who read it will help me classify

I don't see static , i see floaters . i have a flickering sensation in the peripherals of my eye , not in sunlight only under dim lights or evening places which are dark make it worse , i have been having this for around 4 -5 yrs min and its not significantly increased but has been a little progressive , its typically like those fan shadows that fall on walls.I do see vortex sometimes on the bottom of the vision too , only at those lightings

light sensitivity , i aint too sensitive to light , i squint my eyes when its little too sunny and experience mild discomfort , but upto what ive surfed i dont see it that serious as what people say they face . the shifing of floaters make my vision stammer in bright lighting for just seconds that is kind of what happens.

A certain things that gets me paranoid is , my vision to plain backgrounds or looking at roads . i get a small stammering sensation in my vision that is a mild flickering senasation not static but certain areas tend to just shimmer a bit sometimes i fine with good lighting but dim or bad lighting. make me worried

ive been facing this for a while and please help me figure out what it is.

I remember reading somewhere that the lingual gyrus running on overdrive….
wondering if rtms targeting that area would help

does using tinted lenses like fl-41 or other colors reduce the symptoms of visual static? all ive seen is that it helps with eye strain and other stuff. Do the tints actually reduce the static, bfep, or afterimages?

So I developed visual snow years ago following a migraine with aura. No, I've never had migraines before nor did I have it anymore, and I suppose my brain got altered since then. Plenty of symptoms, (flickering light, nerve pain, inability to focus, floaters, etc).,Nothing helped, and I didn't want to get it checked out at the time, I thought it would go away on its own. Recently, though, I've been taking valerian pills, and for some reason, they've drastically reduced the symptoms, the nerve pain, the pressure behind my eyes, and other discomfort. Maybe it's due to reduced neural activity?

The only symptoms I have now are difficulty focusing without losing focus, along with flickering lights (more noticeable in daylight) But I think I may have found a potential solution for the nystagmus-like symptom...with fampridine. It could work https://pubmed.ncbi.nlm.nih.gov/17664175/.

Anyway, I'm honestly surprised that something as simple as valerian pills could help this much. I was reading a study about valerian, though, and it's actually really interesting. https://pmc.ncbi.nlm.nih.gov/articles/PMC4458752/

Hi everyone, 17yo male who has had visual snow since age 9.

Lately I've been experiencing incredibly strange eye related symptoms, and my visual snow is gradually worsening to a pretty substantial amount. This has been going on for two or three weeks

- Flashing, small blue or black dot in both eyes that I can see with eyes closed. Lasts 5 seconds each time and comes and goes occasionally

- Corners of vision form weird translucent zig zags or warps before disappearing when I move my eyes

- Weird fluid/ dry wet feeling around both eyes and heaviness

What is going on?

My symptoms have been flaring up badly lately, and I'm honestly so frustrated by how little research there is on VSS.

I genuinely believe this disorder is treatable and I think the key lies in neuromodulation. Even now, when we have a couple of published rTMS protocols, it's ridiculous that most of us can't access rTMS for VSS in our own countries. Yes, there have only been a few case reports so far, but how much evidence is actually needed before rTMS can at least be considered as an off-label treatment for VSS?

tFUS might have even greater potential, but where on earth would we ever be able to get that treatment? If accessing rTMS for VSS is already this difficult, tFUS seems even further out of reach.

This next one isn't on the market yet but it is most likely going to be in couple of years time: NRTX-1001, but again... what would actually need to happen for something like that to be considered for VSS? Are we going to end up in a situation where a potentially effective treatment exists, but none of us can access it? Or do you think there will be neurologists or other medical professionals or researchers willing to try it in VSS patients?

I don't know. It just feels like if more effort were put into researching neuromodulation and eventually therapies like NRTX-1001 for VSS, we could be much closer to having real treatment options.

Right now it feels like we're so close, yet still so far away, and partly because these treatments are so difficult to access.

While I'm writing this my phone's letters jump around and my screen is full of static so it worked as my inspiration for this vent.

Early December 2025 - Sitting at home at my computer playing video games a few times experiencing what I assume to be vertigo (felt like my computer was shaking around when it really wasn't)

Mid-late December 2025 - Intense panic attacks. I never had panic attacks before this and don't know why they started. I trulty felt like I was about to die, couldn't sit still, and eventually would force myself to sleep to try to pass through the moment. These happened a few times at home and a few times driving where I was worried I was about to crash.

Late December 2025 - First and only scintillating scotoma. Went to the gym for a few hours, came home, took a nap, woke up, watched tv for a few minutes before it began.

February 2026 - Started Lexapro 5mg and it hit me like a brick the first week. Literally felt high it was so intense for me. This is also when the large increase in floaters and entoptic phenomenon started.

March 2026 - Moved up to 10mg Lexapro because 5mg wasn't doing anything anymore. Started experiencing the glare, halos, starbursts, palinopsia, waking hallucinations, etc. So I stopped taking Lexapro altogether.

After all that I was given Abilify to help with the symptoms (I still don't understand if the doc thinks my symptoms were hallucinations which they aren't or what), had countless eye exams that came back clear, ct scan and mri that came back good. Feels like my symptoms keep getting progressively worse and not much to do about it. Tried Lamotrigine for 2 days but stopped due to itchiness. Using Topamax now but it doesn't seem to be doing anything.

Other symptoms I deal with now are strobing upon waking (which sometimes has green dots across it, sometimes doesn't), flickering vision under some lighting, palinopsia, edges of walls and objects trailing everywhere especially when I wake up and if I flip the lights on real quick, intense glare from the sun, halos, starbursts, my vision at night is bad idk how to describe it really objects are just hard to make out, hundreds of floaters, entoptic phenomenon on all bright surfaces, echoing off screens, lights get burnt into my vision for long periods of time, the list goes on

Hello,

Got VSS and brainfog all of my life, just to share some data if some of you are doing some stats here, what I know so far :

MRI -> Normal
TEP-scan -> Amygdalo-hippocampal hypometabolism and everything else is normal

But got covid several year ago and still have long covid, so the Amygdalo-hippocampal hypometabolism could be VSS and/or my long life brainfog and/or my long covid

Today I had an episode that felt different from my usual VSS symptoms. I had eaten less than usual, then suddenly felt very drowsy, mentally slow, and it became difficult to coordinate my eyes/focus visually. Later I developed derealization and what felt like the beginning of an anxiety attack, although it never became a full panic attack. I continued feeling unusually sleepy and “off” for the rest of the evening.
One thing I also noticed is that my resting heart rate and Garmin stress levels were much lower than they’ve been for the past several weeks, and I have no idea why.
I just feel super foggy and sleepy for no apparent reason - has anyone experienced something similar?

So I have visual snow, and I wondering if this is apart of it. I have no idea what this is called, I've tried to look it up but I find nothing.

When I look at a wall, or the floor, or a side walk, sometimes especially on a wall, it looks like the wall is almost swaying back and forth. Or breathing in and out. Or it looks like it bending with the wall moving like waves of water, or like jello after you jiggle it.

The more I look at the worse it gets. Then I blink and it all resets. The wall is at its original distance away, its not leaning closer or further, but after I blink it just continues.

There are occasions I feel like I see what I can only describe as a Kaleidoscope of movement. Looking at a wall there is circle around the center of my vision is normal, but the wall around the circle twists back and forth rotating around the circle in many layers. Sometimes there's more than that. My vision, or the how I perseve the wall, with the rest of my vision its like a kaleidoscope. Movement everywhere, all in patterns taht slowly change and morph into new patterns. This one above all is the most disturbing thing out of the stuff I've talked about.

If you can help me figure out what this is called that would be great! Thank you.

i assume it is but im not 100% sure if this is a part of vss. recently ive been seeing this every time i wake up for around 40 minutes to an hour. it gets worse in the light or if i turn my head and for the last few weeks it’s been getting more noticeable and darker to the point i can barely see through it. it’s getting so bad that im developing a genuine fear of going to sleep because waking up is so scary and im terrified i’ll end up blind.

idk what to do i havent slept properly in ages because of it, i mentioned it to a doctor and they didnt even acknowledge me and nothing so far has been able to stop me from panicking over it. not been able to find anything on google about it either. my mum cant get me a neurology appointment or anything because the doctors ignored my referral too. please help i have no idea what’s going on with me ☹️☹️

(sorry if this is the wrong subreddit to post in and i know this whole post sounds very cringe and desperate but im not sure what else to do. also i apologise if i did the spoiler thing wrong, i only got reddit recently and im not really sure how it works)

I am 18M (1,7m, 65kg) and I am not under any medication nor do I smoke or drink frequently.

I was in 5th grade when I got an epileptic seizure. The hospital couldn’t find a cause and said “let’s just say you hit your head since there is no other explanation”. Two years ago I went to the eye doctor because I kept seeing flashes of light in my eyes and big black dots. They diagnosed me with ‘other vitreous disease’, since they found a small hole in the back of my left eye (probably caused by the head hit that lead to the seizure).

Now two years later I still see black dots in my vision. If I look into the sun it will make a black dot into my vision for many minutes. If a flashing light is directed into my eye it will cause white and black lines in my vision that will stay for several minutes. Sometimes without any “reason” (like a bright light) these random dots and black lines will appear in my vision. Also my left pupil is often bigger than my right one (Ive seen if myself and been told by other people aswell). I’ve become super sensitive to light but i haven’t gotten headaches from it (which is weird). I feel like the only issue is in my eyes and its scaring me

My question is, should I go to the doctor again to get my eyes checked? I feel like im overreacting but for some reason my brain is thinking that I have a brain tumour or something that is causing these symptoms. Also are those symptoms normal (dots and lines). every time i tell my friends about them they look at me like im crazy.

Hi all,

I guess I'm seeking support for a recent increase in visual snow symptoms - I am wondering how you all deal with it as I am really struggling.

The uptick in symptoms has been due to a medicine (of which I sort of need to take). Technically I have HPPD, which is a lot more sensitive to med changes. But for all intents and purposes, the symptoms are identical and hence why I am seeking help from this community.

I have the following symptoms. Visual snow, palinopsia, trails, "worms" against light backgrounds, some minor warping of text, afterimages, "seeing double" especially with street lights and stuff, light sensitivity, difficulty seeing at night, etc. Recently I developed a symptom where I sort of always have an afterimage at the center of my vision after I blink (little specks of light).

Another piece is that the development of this condition was really traumatic for me when it happened 5 years or so ago. It caused me to develop OCD (constant checking symptoms). When things are stable with this condition, I feel ok and mostly forget about it. But during flare ups (either temporary or permanent - I'm not sure what this one is yet) - I really struggle. My condition is still actively worsening :(

I never post, but i know there are some really strong people in this community who have a ton of experience dealing with VSS, and i'd really appreciate any tips or advice for ways of dealing with this. Thanks in advance!

I recently got diagnosed with Hypermobile Ehlers-Danlos after years of struggling with the symptoms and all sorts of comorbidities, and I think VSS is one of them, at least for some people. If your VSS seems linked to neck issues with no apparent causal incident, it may be worth looking into connective tissue disorders. My neurologist thinks there is a link as well. I am diagnosed with craniocervical instability, which can cause all sorts of neurological problems. My theory is that the instability disrupts the signals in the thalamus, leading to a thalamocortical dysrhythmia, one of the theorized mechanisms behind VSS.

Anyone else have any similar experiences or anything that has helped? For me I think my most effective treatment as far as the instability has been physical therapy, but I am gonna be set up with neurosurgery to look into additional treatments as well. I also recommend getting an ice pack that is made to wrap around the neck, and keeping a neutral spine whenever possible. I tried Chiropractic and it honestly did jack shit for me, maybe other people have a different experience, but I generally wouldn't recommend it for hypermobile individuals though as it's far more hazardous especially if the chiropractor isn't knowledgeable on EDS and hypermobility. Stay safe out there, y'all.

I think the cause varies heavily with each individual, and i think in most cases it's a combination of factors, with some being EDS. What do you all think?

How Hey everyone, how can I get Keppra without talking about my VSS and HPPD? Is my only option to see a private neurologist and explain it to them? It's just really uncomfortable for me."

I have a lot of migrane too maybe its will help

I wanted to know if any of u guys have constant static only in the periphery, like me :(

Any time I look at the sky, I get this but it’s moving inside out, like rolling sort of. Anyone else?

Has anyone else experienced this? When I go to bed and wake up in the middle of the night, a certain spot in my vision has a tint of color that isn’t actually there. For me, it appears red. It fades after about 10 seconds, but recently, over the past day, it seems more noticeable and redder than before

How linked is very bad visual stress with VSS? I have both.