"I've decided to take a moment to address something important. I initially considered taking a break from this forum due to the negativity, but I chose to stay because some of you wanted me to continue sharing.

My goal here has always been to offer hope—discussing potential future medicines, herbal remedies, and the brain's involvement in Visual Snow Syndrome (VSS). It's about encouraging people not to lose hope in future treatment options.

I've consistently provided links to my sources and have consulted with professionals who specialize in VSS. Yes, I've used ChatGPT to help me summarize information, ensuring accuracy based on the literature I've studied.

Two leading researchers in VSS have found my theories plausible in treating the syndrome.

To those who have appreciated my posts, you're the reason I stayed. I hope I've been able to give you some hope.

I'll be deleting this Reddit account soon to avoid the negativity and toxicity that has unfortunately overshadowed constructive discussions. It's disheartening after investing so much time and effort into understanding this disorder—I want others to know there's hope, as no one deserves to suffer from this.

Thank you."

I'm not entirely sure I'll be able to articulate this well, but here goes nothing:

Has anyone else considered that the issue isn't actually a malfunction with our brain, making us see stuff that isn't there, but rather we're actually missing a filter and what we're seeing is actually real? I know one of the symptoms of visual snow that we experience is seeing auras around people.

Books like The Human Atmosphere talk about the different auras that are visible around people under the right lighting conditions. There's also a lot of discussion around dicyanin dye letting people see into "the other side" to to speak.

I don't know how related these phenomena are or if I'm even making sense, but does anyone else wonder if there is some type of mystical or supernatural aspect related to our visual snow conditions? I personally haven't been able to channel it in any type of way, so I have my doubts, but I wanted to at least raise the idea to you guys.

Live you’re life & stop worrying So much because there’s people who can’t see nothing at all, living is a gift alone. I’m Only 17 but I don’t care if I die at 30, 13 years of extra life is a long time when your happy all the time & living in the moment 🙏

Vss is not progressive in the overwhelming majority of cases. Stop being so pessimistic about VSS. Some of y'all love to come on here and dive people into anxiety spirals. What's the point? Vss gets better for many, and goes away completely for many. Unfortunately the people who come to Reddit are the people with the worst vss usually. The rest move on.

Most of the people who get worse are unfortunately extra anxious about their new condition and have not gotten used to or accepted it yet, or are going through an extra specially stressful time in their life.

In addition there are many things that HAVE helped people greatly.

1 Limiting anxiety through whatever method you enjoy. Breathing exercises, mindfulness, meditation, yoga, maybe even prescription drugs.

2 Exercise. Exercise across the board is possibly the healthiest thing you can do for your mind and body

3 Neck stretching, posture work and full body stretching/yoga. Whether it's nerve compression, blood flow, lymph or whatever a majority of cases are helped through neck stretching and posture work. Mostly because we're all so tight from our anxiety. This can also help our tmj issues as well as help tinnitus. Don't forget about the rest of your body. It's also probably just as tight.

4 a positive outlook. Look who gets worse. The ones that think it will get worse or their life is over. That they have irreversible brain damage. The people who move on with their lives as well as they possibly can are the people who get better. It's such a cliche to say don't think about it but that's what works!!!!

5 I feel the need to say get your blood tested for possible vitamin deficiencies, in particular vitamin d and magnesium. Some have been greatly helped by finding their particular deficiency.

I don't care if I get downvoted. Stop being pessimists and realize your life may include vss forever, but vss does not own you. You need to own your VSS. Good luck and I hope y'all feel better soon.

This might an insane reach and sounds pretty ridiculous but I was recently talking to chatgpt about vss and it said that porn might be a trigger or "worsen" vss since it triggers neurological overstimulation which can lead to dysregulation of neurotransmitters and in turn cause to much sensory information in the visual cortex. Have you guys maybe seen any possible difference?

The VS is not a sentence

Secondary VS may have a better prognosis than VSS based on Mehta et al’s study. In the treatment of the primary diseases, secondary VS in some cases subsided partially or entirely

First, I want to quote Wikipedia

Symptoms are not consistent with typical migraine aura.

Symptoms are not better explained by another disorder (ophthalmological, drug abuse).

Normal ophthalmology tests (best-corrected visual acuity, dilated fundus examination, visual field, and electroretinogram); not caused by previous intake of psychotropic drugs.

Here is a study listing some diseases, pathologies, conditions that can imitate VS or provoke its appearance as a secondary problem

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9120359/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9857878/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9582439/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8517444/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9857878/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8762590/

And also a of quotes from there

Any neurological condition that affects the occipital visual area might trigger VS

MEWDS could represent neglectable dots under fundoscopy with an insidious onset, recover spontaneously in a short time, and thus be misdiagnosed as VSS with inadequate tests

The differential diagnosis of visual snow, particularly when onset is rapid, should include folate or B12 deficiency.

Phosphene, light sensations without an actual light source, is a similar condition to visual snow. However, unlike visual snow that occurs persistently, phosphene is transient and usually co-occur with other ophthalmological conditions, including increased eye pressure, posterior vitreous detachment, or ocular migraine

Typically VSS cannot be attributed to a clear provoking factor.

Differentiating HPPD from classical VSS is important for appropriate treatment

Visual snow is either a positive visual disturbance based on a retinal pathology or a cortical phenomenon

visual snow in partial rather than the whole visual field, unilateral rather than bilateral visual snow, any neurological deficit, and any vision change (including visual or visual field loss). Those red flags alert the clinicians to perform more extensive examinations to rule out ophthalmic or neurological disease

In any case, this is just an introduction and a small part of it all, and please don't take everything there too seriously; I simply couldn't find more suitable research, and in fact, it's a big problem that there is so little information about it and no adequate explanation. My message is that people should first go for examinations to doctors rather than jumping to hasty conclusions. For example, in one study, it is said that a deficiency in vitamin B group could contribute to observing VS imitation.

I believe that some people may mistakenly believe they have VSS as a result of self-diagnosis. In reality, they may simply be experiencing VS. Surely, someone among you has ocular pathologies or from other spheres, and may not even realize that their VS is just a symptom and thinks there is no cure for it, ignoring it, while someone who has undergone examination may even cure or save themselves.

For example, there is a cold, which provokes secondary symptoms such as fever, joint pain, runny nose. Yes, you can take a drug that will mask the symptoms, but it will not cure you. We know for sure that the same symptoms provoke other diseases: rhinoviruses, adenoviruses, parainfluenza viruses and hundreds of others!

What I mean is that it is probably wrong to self-diagnose and claim that you have VSS while simultaneously suffering from epilepsy. For this reason, a cure for VSS itself will be created for a long time specifically for the neurological disorder itself as described in Wiki and this is unfair to people who were born with it or received it spontaneously during life without pathology as an imitation.

Yes, I do not deny that you can describe your condition as a set of symptoms, but again, is this correct? Is this fair to those who actually suffer from it?

And people like me with hypochondriacal disorder believe that seeing the usual noise in the dark is a disease of the VS, I generally remain silent. There will be many of these, and because of them, research and drug development will simply slow down. Affirming and attributing absolutely any normal symptom of the body to VS. Yes, they even manage to blame stomach illness on the VS. This is completely absurd. I myself am a hypochondriac and mistakenly believed that I had VS/VSS, thinking that even myopia is VS. Cringe xD. I feel ashamed in front of those who really suffer from VS/VSS

Therefore, many are cured of VSS, for example, with the help of Antidepressants, while others suffer for years and are not able to even recover a little. That makes all the difference

If we adhere to some proper approach, people will find it easier to understand their condition and possibly then research and drug development will advance. I sincerely wish that everything goes well for you, and in the event of diagnosis, you will have something benign, and for those already confirmed with VSS, a treatment will be devised.

I'm just sharing my thoughts with you.

This might be controversial, but maybe it resonates with some people?

To those of us who know before VSS, we remember what an average day was like. Honestly it was pretty easy going. Everything in our bodies and brains worked correctly. It was easy to just lay there and do nothing without tinnitus ripping through your ears. You could watch TV without after images blurring your life. You could play sports where fast moving balls didn't blur to the extreme. You weren't always on edge, feelings of anxiety and worry filling your brain. You could open end daydream about random stuff that isn't just thinking about the past or your VSS symptoms.

Now with VSS, Every day is so much more of a struggle. I even consider my VSS like 70% healed, and it still sucks so much!! Trying to actually be happy is like a chore. Some people might even think I'm depressed, and honestly I shouldn't be. I shouldn't be depressed. I have an overall good life, but even during the best days, it's not as good as before VSS. Life just feels different, like you're not supposed to be happy. Those games that used to pull you in, the hobbies that used to be a joy are just something you do because it's supposed to make you happy.

I honestly believe those with VSS for life think they've experienced actual happiness at some points, but it's blunted. That feeling can be so much better, and actually last for days, weeks, months of just feeling good about yourself and your body, and VSS takes it away.

VSS is not just a visual disorder. It's a disorder of reality, perception, mood, and topping it all with a giant cherry is having your most important sense just obliterated in an invisible way.

When docs see you with 20/20 vision, but not feeling perfect, must be all anxiety right? VSS is a garbage invisible disease and I don't want to say it deserves recognition, but it deserves an understanding.

Anyways. I'm like 90% through my VSS book. Have hope. Maybe it will help you understand your VSS better. It helped me understand mine better, but just understanding doesn't mean a cure is there. Only gives you the tools to do your best to live a normalish life. One that true happiness isn't possible, but maybe something close is.

Nobody here is posting any research on vs like he used to. It was good to have a member who was pro active in a prominent way, even though most of his posts were unproven theories but I believe he was onto something. His absence kind of made this board a little pointless..

I asked some of the top ophthalmologists in my country, who have done tens of thousands of fundus surgeries, and they know a lot of patients, and they say that basically no one over the age of 45 gets this disease, but all young people get it. They said that VisualSnow would generally exist for a while when it was young, and it would heal later. Because they haven't seen older people get visualsnow. I also once heard in the eyefloaters group that some members used to get all the symptoms of VisualSnow including tinnitus when Eyefloaters appeared, but after a few months it disappeared completely, and in more than one case, I found more than a dozen cases where VisualSnow disappeared on its own. The most recent one was a girl who developed visualsnow symptoms, including tinnitus, after getting eyefloaters in December 2022. But this month she says that VisualSnow has largely disappeared and can only be felt a little at night. The tinnitus disappeared completely with the disappearance of VisualSnow.

Even if there was a harmless cure that was completely free I probably wouldn't take it. I've had visual snow since childhood and I feel like it's a part of me. I find VS to be very interesting, and I like having a visual experience that is very different to others.

VS doesn't really bother me, I'm nearsighted and don't use glasses and my nearsightedness is much more bothersome, not that it's a problem for me either.

It's not my intention to disrespect anybody who is effected highly negatively from it, I still hope a cure is found for others.

(Yes I know correlation is not causation, this is just a thought I had at one in the morning please don’t skin me alive and sacrifice me to moloch) I’m noticing visual snow is much more prominent in generations that grew up with electronics either that or we are just now finding out this is a thing but do you think looking at screens during development close up a ton would effect your vision in that way maybe?

maybe the amount of bitches I pull are the amount of static dots I see 😎😎

I've been meditating since I was very young, recently developed visual snow syndrome around 3 years ago after doing a lot of shadow work and combining my knowledge in Ai as an AI engineer with design thinking frameworks and meditation techniques to help describe my experiences I've been getting as well.

It first started off as just noise and random scary images which seems to match with properties of diffusion models (ai model where it add more noise to distort original image more and reconstruct to be more different/imaginative version),

I'll have much more vivid imageries and scary ghost-like visions that came with strong intense sensations and it's much more intense at night. Felt like part of the tension in my body turned liquid like sensation before seeing it as extra layer of noise when it reaches my eyes. The first month I was very scared yet very excited, feels like I get to have my own internal boss battle but one of empathy rather than violence.

Over the years as I heal and improve relationship with the noisy grainy parts of me that pops up, more and more intense ones would come up. Whenever I successfully integrate these new selves, some carry memories of my childhood I thought I lost.

Others end up was responsible for my bad habits all along and each one I unlock feels like there's more people on the team ready to help handle the next challenge (both external like learning new skills and internal like handling more parts that came up).

I start to notice my experiences became more complex and spiritual, almost like more of my selves I access to when I'm dreaming is accessible during when I'm awake as well. Now the more vivid imaginations work with me instead of against me (I get visions of what features to add to the app I've been developing and I get very good feedback from psychologist related to the features I developed for the app)

1. The first picture in the post is a Google search of diffusion models + at the bottom is image I tried to recreate to represent the experience I have within my eyes with my camera. the noise itself I experience especially in dark places or when I close my eyes, the dots are noise and the lines are sometimes morphing into more complex visual images.

2. The 2nd picture = visualization of how I experience my mind, feelings,body, and how those 3 things represents the world around.

3. 3rd visualization represents the progress I work towards improving in different areas over time and how I borrow concepts from DevOps engineering to describe my experience progressing through different phases

4. 4th represents the body sensation that aligns with the visual snow noise that comes up.

I get that many of you are still “processing” and learning to live with the actual VSS symptoms… I know I did at first and it was traumatic so I empathize with you.

That said, as the years will pass you will most likely learn to cope, start filtering out lots of it and no longer notice most of the symptoms… that’s definitly my case a couple years in, on most days I feels like pre-VSS nowadays (still get shit days don’t get me wrong but it’s much better…)

So in essence VSS in and of itself doesn’t seem to be harmful short-medium term - but long term? We only have anecdotal data… the constant overstimulation and/or dysrythmia and/or potential inflammation of the brain might logically lead to some other conditions (Parkinson’s, Etc) - I m not a neurologist and I hope it won’t but shouldn’t this be the main worry and not the VSS symptoms themself?

There's a withdrawal support group on Facebook and I'm not reading any positive stories over there..

I’ve had vss my entire life and i didn’t think it was a big deal, because ive never known anything else. fast forward to 2 days ago my friend got perscribed it and i asked if he had any extra for meand he gave me some. i remember reading about lamotrigine a few years ago but i didnt feel like it was worth it because of the side effects, but i thought it wouldnt kill me to try it. turns out that vss must have been causing me a crazy amount of anxiety and dpdr. and the world feels totally different after taking it (headspace and all sensations) like my brain literally was completely malfunctioning before.

anyway all that is just to say i consider it necessary now. and i can get a limitless supply on my own. i dont want to talk to doctors (they suck) because no one takes vss seriously.

i have noticed some side effects already on 25mg for 2 days. i seem to be forgetting things a little bit more. short term memory like where i put stuff. i also get mild headaches at times and some nausea. however the memory loss is really what im worried about as the nausea and headaches are tolerable. it could be a placebo since i already know lamotrigine can cause that effect however.

anyway do any of you on lamotrigine know if there’s a good way to mitigate the side effects? specifically short term memory loss. maybe theres something i can take to help with it. either way im not going back now so ill deal with whatever side effects come with it. hopefully i dont get that skin rash im gonna be beyond pissed if i cant take this limitless pill because of some rash

sorry if this was rambling but its late

It sounds weird but just hear me out. It's not necessarily research though. --- Everyone has VSS, but some just see it more severely. Maybe not all the symptoms of VSS but at least the static, that could be the reason we never see a difference on MRIs or EEGS, because there's nothing wrong, it's just we see the static more clearly than others.

Obviously it doesn't explain the other symptoms but at least the static a little, but I'm also not a doctor or anything this is just a theory :)

Could Visual Snow be a result of Dow regulation of CB1 receptors, curable by long term abstinence from THC?

I've been reading that some people think it is and would love to know more about the spirtual viewpoints. I've have visual snow since I could remember and when I was a child I thought it was energy/atoms. The visual snow was stronger when I would wake up from vivid and/or lucid dreams as a kid. I would be interested in hearing anecdotes or any other information