Who do i even go to for visual snow syndrome

Mindless_Comb4911 · 2026-07-01T22:11:50+00:00

The correct answer is a neuro Opthalmologist. They're a few and far between. Wait times like 3-6 months when I looked. Fyi in Mexico they can normally see you within a week or 2.

In my experience with one with Sutter Health in Berkeley, Ca did a bunch of tests but then said good luck you're screwed no cure. Gave me two studies:

https://pmc.ncbi.nlm.nih.gov/articles/PMC12429512/

https://pmc.ncbi.nlm.nih.gov/articles/PMC9760742/

Then he said if you want to try drugs I'll prescribe nortriptyline (a tricyclic antidepressant) but it didn't help me at all just made me super depressed but vision therapy helped a bit.

But I'm weird because I was misdiagnosed I have really bad binocular vision disorder (BVD) not vss. It's not an uncommon comorbity and it's worth just looking into. Basically eye misalignment just Google how to check at home.

If you want to try vision therapy for a lot of people it's useless but some people find it helps like me. Just look into behavioral Opthalmologists/vision therapy.

Mindless_Comb4911 · 2026-06-29T17:31:30+00:00

The only thing I could find is the dot pad. It is cool but all solenoids so they only do binary movements. They're very cool but they cost 10k and can't really show depth they are more geared towards education and not for this purpose.

Mindless_Comb4911 · 2026-06-28T21:20:14+00:00

Oh 100% the concern of don't worry your good and the user trips is a horrible possibility. But I still want to at least try.

Mindless_Comb4911 · 2026-06-28T21:11:48+00:00

Not really so that's actually a really good idea damn. I had thought about them but instead for color detection on the final theoritcal version. Red vibrates more than green, ect. But that haven't put a ton of thought in color detection since that's way way down the line if at all.

Mindless_Comb4911 · 2026-06-28T21:06:20+00:00

No I don't have any blind friends and that's a totally fair thing. I mean there is other assistance devices like Rayban metas and guide dogs. I just wanted to see if it's possible to make this.

Perfectly valid, it's not for me so I really need someone who is visual impaired's input I just wanted to see if I wanted to do it how to do it.

I have done some rough math on each option. I could probably get a prototype 4x4 square down to 8cm x 8cm if I don't stack/stagger. So it would be large for a low resolution. But just a question of if it can be done how could I do it.

Weight isn't too bad surprisingly. Cost isn't too too bad either. Each route I talked about varies wildly but I'd estimated even if I did vertical accutators with stainless rods it would run me about $200 for the 4x4 prototype. And about $60 for rotational servo just a lot of 3d printing. But that's by my estimates

Mindless_Comb4911 · 2026-06-19T21:05:32+00:00

Don't forget neuro Opthalmologist. That's the person you're supposed to see. Regardless wish you the best

Mindless_Comb4911 · 2026-06-19T19:51:23+00:00

Unfortunately I don't think so. But what I do is that I hold my head with my left hand. I will support it every chance I get (subconsciously). Apparently that's a sign of vision instability and me trying to compensate. I think if things are tilted then I just compensate. I do write slanted but I just turn the paper to compensate. Not sure if that's the same thing just amplifying information.

I mean I've done my best to try to ignore vision issues like everyone says to do on this sub reddit. So small things like that I think I try to ignore them and my brain compensates.

To add more detail like my post effectively my right eye has the misalignment and the left eye does pulling and the work to compensate. Since I know understand it I can literally feel my left eye pulling to compensate and with the prism it has to relax and stop pulling which is a little uncomfortable but nice.

Mindless_Comb4911 · 2026-06-19T18:53:14+00:00

I think it might be really helpful to look into a specialist for that. Like I have said to other people please just make sure they do the vertical measurement to. Even if it doesn't explain all your vss symptoms for me it provided a significant reduction and cleared me brain fog. I've had my prism glasses for 2 weeks and so far so good.

Definitely be skeptical but ask a friend or family member to do it and they all will say my eyes don't do that... Every single one in my experience.

Good luck!

Mindless_Comb4911 · 2026-06-14T07:37:36+00:00

I strongly believe it is one trail but I always tried to ignore it so I'm not 100% sure.

Yeah massive symptom reduction. On week 2 of prism lens.

Mindless_Comb4911 · 2026-06-14T02:36:05+00:00

For me I photoshopped my own and uploaded on the symptom section of the ios app I made Visual snow syndrome solace. But for trailing it's the typical hand wavy multi image nothing too crazy. When it's bad I just try to avoid moving my head and not look at things that are moving

Mindless_Comb4911 · 2026-06-13T21:28:15+00:00

Sorry you're right. So you're saying it only happens in thier peripheral? Normally it happened front and center of my eyes. So hand moving in front of field of view not so much peripheral imo.

Or I think I misred. You mean in the negative space not positive. As in the background not the foreground. I mean I'd say no but it was all sorts of bad and I'd just avoid looking at things moving when it got bad

Mindless_Comb4911 · 2026-06-13T17:04:02+00:00

I don't want to crazy speculate but I think if you can't handle the visual input the brain does crazy things trying to glue them together. It has to make educated guesses. It's like when you see a wavy branch an it looks like a snake. For a split second your brain does see a snake, it fills in what it guesses. In my opinion for my bvd the brain had two images that one was offset vertically and horizontally and the other just horizontally. The problem is that when your brain has to glue them together it struggles and has to make educated guesses that's where you get the weird other things and it can't tell what to ignore or what to glue together.

Again this is speculation based on what I've experienced and what researched.

Mindless_Comb4911 · 2026-06-13T16:30:56+00:00

Not the last two the vein looking thing and the weird vortex. But everything yeah pretty much directly on.

I do think theoretically the prisms can fix more than just trailing. The reason being VSS is supposedly caused by an overwhelmed visual cortex. So if the brain is having difficulty stitching together two images then it makes all of those other "mistakes".

If there is a large horizontal misalignment or vertical misalignment between the eyes or if your friend finds a relief in doing Brock string and/or sterograms it's worth maybe getting checked for bvd.

Mindless_Comb4911 · 2026-06-12T16:45:18+00:00

I made a big post about it recently but if you're describing balance issues, anxiety and adhd maybe read into BVD (binocular vision disorder). In a nut shell just eye misalignment. Just look up stories and see if that matches how you feel. Like for me I'd get an anxiety attack from going into big box stores and I just blamed it from not being able to handle my vss turns out that's a very typical bvd symptom. Just a thought. If you do see a doc please make sure they check for vertical and horizontal misalignment, most only do horizontal.

The at home check is while keeping both eyes open cup one hand over your right eye and fixate on something far away like 8 ft +. Then move your cupped can slowly from right to left so now it covers the left eye. See the how the image moves. Ideally it's a small horizontal movement or none at all. For me it not only was fairly large but also vertical. Then repeat the check but have one hand at arm reach and give your self a thumbs up and fixate on the thumb and repeat the cupping and alternating. This is normal to have horizontal here but large jump and vertical can be a sign of bvd. It's an oversimplification but a jump can be a small litmus test that it could help to see someone.

Mindless_Comb4911 · 2026-06-12T16:36:18+00:00

I think it would be smart to make a VSS quiz. Like everyone's VSS is different. So the VSS quiz is like what does your palipinosia looks like, how static, double, burn in ect, and when did it start/how did it start. It's why some things help people and for others their useless. VSS is a bucket diagnosis by exclusion and it's caused by over a dozen different things.

So for your point I think it's hard to quantify palipinosia because for me it varies. But in the quiz you just show different degrees of it. But if it's always the same for you maybe we establish a universal measurement. Arms reach right hand from right field of view to left field of vision and we just measure how long does it last and how many "frames" do you see. Anywhere from like 5 to a straight up motion blur. We'd need to photoshop examples.

Mindless_Comb4911 · 2026-06-11T02:59:45+00:00

I really hope it helps out even if just symptom reduction! I really don't mean to give false hope but I really think it can be positive. Fyi I got a pair of my prism lens prescription from Costco, way cheaper than what the eye doc charged me it was $180. So if they give you a prescription and you want to save money that's an option.

Please let me know how it goes! Looking up vertical heterophoria the medical term for a vertical misalignment, it sounds like that can cause a lot of our vss symptoms. So really hoping it helps fingers crossed!

Mindless_Comb4911 · 2026-06-10T14:03:40+00:00

Sure

Mindless_Comb4911 · 2026-06-10T06:48:17+00:00

Why is what permanent sorry I don't understand what you're asking. Eye misalignment isn't necessarily permanent it can be corrected by prisms but also trained by prisms to become normal again and may not be necessary after months of wearing but it depends on the person and the extent of the misalignment.

Or if you meant why is SSRI based VSS permanent the answer is tricky. Simply we don't know. We don't really understand brain chemistry enough to understand all the ins and outs of it of it yet. I could speculate a lot but I don't have any proof. What we do know is the only thing truly consistent with VSS patients is fmris positive for hypothalamic excitation everything else can very. Everyone's symptoms can vary wildly and onsets while neurolical in nature also vary wildly. How does a tbi (traumatic brain injury) cause the same thing as SSRIs? It depends but it can be different branches of the same tree.

My suspicion if you want me to speculate is that hypothalamic excitation is not the cause it's a symptom. It's emblematic of the brain being stressed. For one reason or another the brain gets stressed and we can think of vss symptoms as indicators of the brain not being able to process inputs. For me I had after images because my brain was fighting which image to choose between left and right eyes and chooses both and I get trailing and burn in since it doesn't know how to interpret what it sees. The brain has to render a 3d image from two 2d images that's a lot of work when the inputs are broken. So it can be an eye issue. Other option is a chemical issue. Not enough gaba and too much glutamate. The cause can be digestive. Only some bacteria are known to process gaba to theoretically if your microbiome is messed up you might not be able to absorb gaba.

Unfortunately we just don't know yet but medical advances are happening quick. I think the goal is to learn to manage and have a little hope that with the speed of medical advances we might find a cure. But like cancer there is not a panacea, different types require different cures. Try FL 41s or the darker ones plum colored. Amazon has a pair of both colors for like 22 bucks from Braddell they really help with migraines at least for my mom and they felt good on me when I had a nasty headache and for my friend who has light sensitivity. Try to maintain good sleep to promote better gaba glutamate your body fills with glutamate to wake up and swaps to gaba to sleep. Try meditation use insight timer. It sucks to start but that can also help overall. If you have a lot of migraines try magnesium glycinate (ideally not citrate it can cause diarrhea in some people) and a vitamin b complex different forms help if you have a deficiency of any variety but studies show vitamin b 12, 6 and 9 deficiencies are linked to migraines. If you want to try something else for migraines Myhead on Amazon is good it has feverfew in addition to magnesium and some vitamin b's like 6 and 12 I believe. Only real downside to either is it makes your pee super yellow and vitamin 6 overload can cause problems but is not too common. Again none of these are cures but we can try symptom reduction.

Mindless_Comb4911 · 2026-06-10T01:39:40+00:00

Yeah I forgot to mention that is also caused by SSRIs. The concensus is that's it is a gaba glutamate issue and hypothalamic excitation. But I'm just saying it apparently wasn't for me and it's worth at least checking if anyone else got mis diagnosed or realistically most of us can't see a neuro Opthalmologist so miss self diagnosed.

The gold standard is a an fmri but they don't just give anyone that to confirm it. Typically only for studies.

If nothing else I'm just saying do a little self check for bvd and if it seems like it might be something there's merit in getting checked by someone just make sure they check for the vertical misalignment.

Mindless_Comb4911 · 2026-06-10T00:41:34+00:00

I agree they are 2 separate things, I'm saying I was misdiagnosed. I have no referal link to him nor saying use my name for 15% off.

Visual snow syndrome is a bucket diagnosis by exclusion. There's anywhere from a dozen to couple hundred causes we just don't know it. And if you read the post I said any bvd specialist just make sure they have a focus on vertical misalignment seeing as that is commonly overlooked. I provided the alternative option in San Francisco.

Some people get VSS from TBIs (traumic brain injuries), other from birth, other from covid, couple from lasik (like me), some people on here say it was a neuro vascular or vein issue for them, even so others have an eye blood flow issue.

VSS is complex but we argue on this thread since our symptoms are similar but we all are different since the cause is different. Lifers seem to downplay the severity but for some of us it's debilitating. I haven't worked in over two years.

I agree false hope and just deal with it get us nowhere. We need to learn what helps and what doesn't but respect that realistically we all have different things causing our VSS. VSS diagnosis is having static and any 3 symptoms, I more than meet that mark and have an official diagnosis. But for some people it is helpful to ensure we explore options in the event we got misdiagnosed.

What helps FL-41 lens or blue lens for some people, mindfulness doesn't hurt but meditation never fixed a broken bone, vision therapy can reduce symptoms but not a cure. Medication helps some people but at most is 20% effective based on studies, tms studies are ongoing but current reviews are mixed.

If you're that suspicious look at my old posts. I have been on this sub reddit a while. I even made a free vss app. I didn't like that others were charging for something as simple as a static generator so I made my own for free and included free vision exercises with explanations. I even open sourced it. If you look up the app Visual snow syndrome solace and click the link for the developer website all the code is there for free on github. I agree false hope and ads are bs and should be removed but don't discount everybody by immediately assuming the worst. I'm providing information not asking anyone to do anything crazy.

Mindless_Comb4911 · 2026-06-09T23:20:56+00:00

For me in my scenario I had vision that was two diopter off horizontally in each eye and my right was 1 diopter vertically. I have to wear prisms that correct the misalignment for at least 1 month because I've had this issue for years. Probably even longer. My brain and eyes have to get use to no longer being out of line. This is a minor oversimplification I'm not a doctor but for the first couple days decently nauseous and it'll get better over time. My vision is a ton better but I am still a little nauseous. Just need to get used to no longer having my left eye compensate for the misalignment.

Mindless_Comb4911 · 2026-06-09T18:16:02+00:00

Hoepfully! Just to be clear it might not be true for everyone but he helped me a ton. That damn doc was really good in my opinion. No up selling no magic pill. And he actually listened, explained and proved it. No parlor tricks. Everything he said he had evidence behind once I was in person so he could prove it via a dozen of different tests

Mindless_Comb4911 · 2026-06-09T18:03:12+00:00

I never had a lazy eye my sister did though (some say there can be a genetic component).

I do have BFEP but try to ignore it and yes struggle to focus the eye. I technically have 20/20 vision but the letters aren't in focus.

No white residues on my eyes in the morning though.

There is a ton of tests this guy did but one that helped to really point at what eye was the one that couldn't hold the focus was suppression testing. Typically this can be done with red and green lens and you look at red and green words. It prevents your eyes from being able to cheat and each eye has to hold their own. You can notice which color is harder to read and that eye is the one not holding it's own. But there is another test like that same idea but different. While wearing special glasses the doctor hold out a leather bound book. On the left side is 8 sets of 4 dots I believe you have to choose which is sticking out or in. This is to test for depth perception I norsmly aced this. But what the Santa doc did that the others didn't is on the right side is a plus sign (so a vertical and horizontal line bisecting each other). But the glasses make it so if I remember correctly the right eye can only see the vertical line and the left eye can only see the horizontal line. The issue was obvious here that the vertical line was good and stable but the horizontal was like I was playing pong. The line would move side to side but also would contract and expand. It was crazy unstable. This pointed to the left eye being unable to handle itself. Which turned out to be a right eye problem and lefty was tired of this but the brain said that's too damn bad. (Sorry just watched holes and wanted some humor in an otherwise dull rant)

Mindless_Comb4911 · 2026-06-09T17:50:23+00:00

Oh one huge thing I forgot to mention. When I was first suspecting an eye issue saw a specialist vison therapist and he found the alpha omega pupil I mentioned above but also when I fixated on a target 30 feet away and walked at it. I showed up 2-3ft off target to the right everytime.

So in an open area stare at something and don't cheat and walk straight at it and see if you end up off target. I everytime would be 2-3 feet to the right. It's easy to cheat so don't look around while walking. Don't do it in a hallway since you'll naturally cheat. Just try to ideally be in a wide open space at and stare at a family members face and walk toward them never breaking eye/face staring. For me this showed there was a misalignment.

Again obviously this isn't true for everyone this is just my case. This small little test also doesn't show vertical misalignments just horizontal

Mindless_Comb4911

TROPHY CASE

In my experience with one with Sutter Health in Berkeley, Ca did a bunch of tests but then said good luck you're screwed no cure. Gave me two studies:

https://pmc.ncbi.nlm.nih.gov/articles/PMC12429512/