r/visualsnow 21h ago

Resource Visual Snow Treatment Discord

17 Upvotes

I decided to create a Discord for the purpose of compiling anecdotes about pharmacological treatments and engaging in community-centered amateur research. Many of us have experience with a vast array of different medications, and I think compiling our collective knowledge in one place might provide us with some useful insights.

Invite link: https://discord.gg/6YpQ4a8jN

My hope is that, by reviewing the current literature and engaging in our own theory-crafting, we can identify medications and drug candidates that could potentially lead to a cure.

Over the past several months, I’ve compiled a list of medications that I think are promising and could serve as a starting point. I’ve already tried a couple of these (memantine and perampanel), but I intend to try the rest of them over the coming months.

In no particular order:

CaV3.2/3.3 blockers - Ethosuximide, or preferably Ulixacaltamide

This is likely to be therapeutic if pathology relates to aberrant bursting and thalamocortical dysrhythmia, especially if TRN and/or TC relay are hyperpolarized. Bursting is largely mediated by low threshold spikes contingent on CaV3 deinactivation, blocking these channels may reduce pathological synchrony and restore thalamic gating.

Currently no known anecdotes.

Selective 5-HT₄ agonists - Prucalopride

VSS patients have several abnormal FC changes. Particularly relevant findings are: "task-dependent hyperconnectivity/hyperintegration of posterior DMN nodes (PCC–medial precuneus)"[1], "lower nodal co-modularity between occipital, parietal, and sensorimotor nodes and frontal and cingulate regions"[2] and "reduced FC in glutamatergic networks localized in the anterior cingulate cortex (ACC) compared to HCs"[3]. Indeed, prucalopride has been shown to reduce connectivity within DMN-related circuitry, and increase CEN ↔ PCC/ACC connectivity when dosed at 1mg for 6 days in healthy volunteers vs control[4]. Furthermore it significantly increased connectivity from both left and right rostral ACC to left lateral occipital cortex[4], and so could ameliorate these deficits in VSS. 5-HT₄ agonism is also generally pro-cognative, neuroprotective and neruotrophic.

[1] https://pmc.ncbi.nlm.nih.gov/articles/PMC8046036/

[2] https://pmc.ncbi.nlm.nih.gov/articles/PMC9980880/

[3] https://doi.org/10.1002/ana.26745

[4] https://pmc.ncbi.nlm.nih.gov/articles/PMC10914664/

Currently no known anecdotes.

Cx36 blockers - Mefloquine (crudely)

Cx36 is a channel that enables intercellular voltage sharing and synchronisation, especially in the TRN. Blocking Cx36 may disrupt and limit pathological feedback and synchronization in the thalamus, ideal in a TRN mediated TCD pathology. Mefloquine for this purpose has several off target effects, most notably mild SERT inhibition and A2A antagonism. This, coupled with an extremely long half life, makes this a low-conviction treatment candidate.

Currently no known anecdotes.

mGluR5 NAM - Basimglurant or similar

Mechanistically, this would reduce excessive cortical glutamatergic gain, while also potentially strengthening LGN signal in the visual thalamus via functional inhibition of dLGN interneurons[1]. This is likely attractive in a wide range of potential VSS pathologies.

[1] https://pubmed.ncbi.nlm.nih.gov/23392677/

Currently one known VSS anecdote with MPEP that “100% got rid of all symptoms for the whole day” https://www.reddit.com/r/visualsnow/s/GZZr5AeKky

Non-competitive AMPA antagonist - Perampanel

Obvious therapeutic potential via reduced excitatory glutamatergic drive and disruption of high frequency correlations. However, unlikely to address any root pathology and may reduce thalamic drive in a disadvantageous way.

Currently a considerable number of anecdotes, particularly in HPPD. Some of the positive anecdotes are listed below:

https://www.reddit.com/r/HPPD/s/DpDfbstwuz

https://www.reddit.com/r/HPPD/s/2fEL5fakxX

https://hppd.net/topic/9833-perampanel-fycompa-seems-to-be-the-most-promising-long-term-medication-for-hppd/#findComment-50217

https://hppd.net/topic/9022-perampanelfycompa-a-novel-anti-epileptic-drug-that-pretty-much-cured-my-hppd/#findComment-50145

https://www.reddit.com/r/visualsnow/s/GZZr5AeKky

There have also been several people who have reported no positive effects from perampanel. Observationally, I’d estimate perampanel is significantly effective in no more than 50% of cases. NB that is an upper bound.

NMDA antagonist - Memantine

Reduces cortical excitability, also neuroprotective against excitotoxicity. Is used off label in migraine[1] and so may be more useful in a migrainous phenotype. However it also has off-target antagonistic effects at α7-nAChR which I find somewhat mechanistically concerning for VSS as this may hyperpolarise the TRN.

[1] https://doi.org/10.3389/fphar.2024.1496621

There are positive anecdotes for memantine, most notably:

"DPDR and other weird sensations are 90% gone ... my visual snow is pretty well the same unfortunately" https://www.reddit.com/r/HPPD/s/g7keYK20JT

There have also been anecdotes reporting no effects, or indeed temporary worsening in some aspects.

Selective 5-HT2A inverse agonist - Pimavanserin

Likely to directly block serotonergic cortical gain since 5-HT2A is cannonically Gq coupled and highly prominent on cortical pyramidal cells. Far more mechanistically attractive than crude 5-HT2A antagonistic antipsychotics since pimavanserin is highly selective and can reduce 2A signaling below baseline rather than just blocking binding. Also attractive since 2A agonism and SERT inhibition are common initial triggers for HPPD, and VSS studies demonstrate abnormalities in serotonergic networks.

Currently no known anecdotes

GABA-A PAMs — ideally α3 subunit selective:

Clonazepam

Readily available clinically and the most convincingly therapeutic of all VSS/HPPD treatments studied to date. Large community surveys report at least some improvement in roughly two thirds of patients, and this is congruent with the current research[1][2]. Mechanistically, cortical inhibition is obvious, but clonazepam also potentiates α3 subunits in the TRN to "[reduce] burst pattern and emergent network synchrony in reticular thalamus"[3], and further work suggests clonazepam's action at α3 is both necessary and sufficient for its anti-oscillatory effects[4]. However clonazepam is broadly active at the benzodiazepine site, so effects other subunits including α1 and α5 which are associated with tolerance and dependence and could suppress the LGN/TC which may be undesirable. Indeed, there are several anecdotes of daily long-term clonazepam use causing seemingly permanent worsening in symptoms following withdrawal.

[1] https://www.researchgate.net/publication/390022658_Diagnostic_and_Management_Strategies_of_Visual_Snow_Syndrome_Current_Perspectives

[2] https://pmc.ncbi.nlm.nih.gov/articles/PMC5870365/

[3] https://pubmed.ncbi.nlm.nih.gov/14523100/

[4] https://pubmed.ncbi.nlm.nih.gov/12736336/

StuffThatWorks VSS survey and HPPDonline survey provide useful anecdotal evidence.

Etifoxine

Non-benzodiazepine binding at β2/β3 yielding a functional preference for α3β3γ2 which may produce similar outcomes to clonazepam but without a1/a5 drawback. There is currently no evidence to suggest etifoxine is liable to produce tolerance. There is also some evidence to suggest etifoxine may stimulate neurosteroid synthesis. This may be desirable in VSS, but could produce a confound.

There are currently two known anecdotes for etifoxine:

"definite difference in my VS/HPPD symptoms ... 9/10 would highly recommend" https://www.reddit.com/r/visualsnow/s/W4sIlMM4rz

"It seems very weak to me ... no effect on visual" https://hppd.net/topic/351-etifoxine/

Darigabat

Binds at the benzodiazepine site with a functional preference for α3, while also acting at α2 and α5. Importantly, it is α1-sparing, so it could be a candidate for long-term clonazepam-like effects. Likely only economically tractable for purchases in excess of 1 g or via custom synthesis.

Currently no known anecdotes

Neuroprotective Glutamatergic Modulators - Riluzole / Troriluzole

Riluzole, and its pro-drug Troriluzole, could be attractive in a variety of potential VSS pathological states, primarily as a cortical dampener. It blocks sodium channels, but differs from lamotrigine since it preferentially blocks INaP​ while leaving INaT relatively untouched[1], so may decrease subthreshold repetitive neuronal noise while largely preserving action-potentials. It also decreases glutamate release while increasing reuptake, and this could further contribute to weakening possible V1 L6 -> TRN & LGN pathological feedback, and so could speculatively make the visual network increasingly reliant on bottom-up input.

[1] https://pmc.ncbi.nlm.nih.gov/articles/PMC6493865/

Currently one known Riluzole anecdote: "hit 200[mg] I felt that symptoms were reduced by 20% or so with my static down 50% ... started developing some side effects ... decided to go down to 100mg ... static is really the only symptom that stays lower on an every day basis ... I have progressive VSS, and while I didn’t have the symptom reduction I was expecting I think it is worth taking ... it is slowing down progression" https://www.reddit.com/r/visualsnow/s/X1RkHc8kXY


r/visualsnow Jun 26 '26

Research Anyone in minnesota

18 Upvotes

Hello I recently joined a study for VS research and if anyone who lives in Minnesota wants to join definitely do you get paid $20/hr and one of them is an MRI without dyes. Definitely worth it if you got anxiety about it.

https://studyfinder.umn.edu/studies/25186


r/visualsnow 4h ago

Media [Visual Snow Painting] Michelle Anne Holman - "VS MR CV19"

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39 Upvotes

r/visualsnow 8h ago

White wall problem

5 Upvotes

I don't even know how to describe this. I've had visual snow ever since I can remember. But this one's rather new.

Maybe it's because I've been looking at a computer screen for too long these past few days and I'm not wearing my glasses.

But when I'm close to a white wall or any surface that has a light color and I move my eyes to the left and right it feels like these vertical lines follow me like after images of the wall Maybe. but they're very sudden and they disappear immediately. And when I move my eyes up and down the lines turn horizontal.

I don't know if I could explain it well. Does anyone else get this?


r/visualsnow 8m ago

Question Positive afterimage

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Upvotes

Who suffers this


r/visualsnow 2h ago

Media Run from the sunlight Dracula.... Isn't the view spectacular ?

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1 Upvotes

r/visualsnow 2h ago

Is there hope? I got my first floater

0 Upvotes

Sorry for typos, my eyes are still dilated from testing. Im in my 20s and this is my first floater. Today I had a sudden tiny afterimage/bright little spot in my vision that looked like I stared into a bright light, even though I didn't. It's like a tiny oval shape, not a line. It was like in an instant, I was looking at my phone, then wondered what this afterimage was and when it would go away. It never went away. Its extremely noticable and gets in the way of my reading and typing. And its visible when eyes arr closed. It seems like its mainly in one eye but its extremely hard to tell or describe. And it moves around as I move my eyeball. I've never had anything like this before but I do have static vision (VSS) but not severely

I was terrified so went to the ER thinking its a retina detachment or something. It took hrs but they called an opthomaligist and did an eye ultrasound, pressure test, and then dilated them and looked with lights. They found nothing. I asked if this is permanent and they just said "It's probably a floater, your brain will just get used to it." So now I'm here. I'm extremelt sad and depressed. Where do I go from this? How can this happen so suddenly?

I'm an artist, I do artwork to make money, I'm terrified


r/visualsnow 9h ago

Question How long is not long enough for afterimages?

3 Upvotes

Hey guys, I’m gonna be honest and say I’m not formally diagnosed but I’m working on getting it, I’ve been referred to a neurologist. But I worry maybe it’s something else. I always feel like I’m lying to my self and the tv static is just me forcing it, and I don’t want to be like that.

Main question: how long is not long enough? I do have after images, they mostly show when I close my eyes but after noon tree lines and higher contrast things plague what I see. I can see them clearly for maybe a few minutes then they kind of just reappear briefly when I blink. Lower contrast teams (my hand ms holding my phone, my car dash, etc) are pretty short.

Lights are the worst, they last for 5-10+ minutes. But every thing I see says hours. I guess I just want some affirmation that it’s either yay or nay. Static is there, and things “feel” like they’re still there even if I don’t explicitly see it. I hope I didn’t waste your time, but I sometimes feel like I’m lying to myself on what I see.


r/visualsnow 12h ago

Has anyone had an afterimage appear several minutes after seeing something? Not one that lasts for minutes, but one that appears after a few minutes?”

3 Upvotes
35 votes, 2d left
Yes
No

r/visualsnow 13h ago

Question Vertical streaks of light

2 Upvotes

Does anyone get streak of light downwards from vss in the Starburst?


r/visualsnow 14h ago

Suspected optic neuritis – Need help

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3 Upvotes

r/visualsnow 17h ago

Visual Snow issue for me

5 Upvotes

Sorry bare with me for the story I’m about to explain, within the past month I have gone to my ophthalmologist twice, but it was because they were scared about a possible tear in my eye with my last visit being Sept 2nd. They ran every test they could for my eye and they said there are no issues. Fast forward Monday morning Sept 7th I wake up and I had trouble adjusting my eyes and notice I started seeing dots in my vision, not just one eye but both. Looked like i was seeing static even with my eyes closed. I was worried at first that I had detached my retina and went to the ER, they did a few eye tests, took some blood and did a CT scan and said everything is normal. I scheduled the next day a visit back to my ophthalmologist and explained what I was seeing and she said it’s something called Visual snow and she doesn’t treat it and I have to see a neurologist or a neuro-ophthalmologist. I was a visit with neuro-ophthalmologist until the end of this month, and my visual snow has been having me feel really miserable especially at night. If there’s any at home remedies or anything I can do to help alleviate this issue it would be much appreciated. It really has me in a funk.


r/visualsnow 22h ago

Question eye exams

5 Upvotes

people with palinopsia, how troublesome is it to get eye checkups, since they're always up in there with flashlights directly pointed in your eye? how long do the afterimages last? anyone had any experiences lately?


r/visualsnow 1d ago

Question really long afterimage after staring at a bright light

8 Upvotes

so there was an led light in my peripheral vision for about 5 mins and when i turned it off the dark afterimage lasted about 8-9 minutes. but i feel like there's still a bit of residue even after half an hour or so. how long do these afterimages last for you guys?


r/visualsnow 1d ago

Visual Snow Symptoms

3 Upvotes

Whenever I closed my eyes I always see geometric pattern and worm the worm weirdly only have 3 primary color which is RGB there's no other color than that also sometimes when I open my eye isee worm tho buts it's more transparent


r/visualsnow 1d ago

Media [Documentary] "Visual Snow" by Lucile Bienvenu - French documentary about living with VSS (English subtitles, 30 min)

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5 Upvotes

r/visualsnow 1d ago

Question What do your symptoms suggest ; a prefrontal cortex (PFC) executive filter breakdown, a thalamic reticular nucleus (TRN) gate breakdown, a mix of both or none ?

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5 Upvotes

r/visualsnow 1d ago

[Merch] Hoodies and more about Visual Snow Syndrome from Nerd Pixel

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5 Upvotes

r/visualsnow 1d ago

Personal Story New here

3 Upvotes

Hello!

I only recently started to suspect I have VSS. Like many, I had thought everybody sees the world the same way. I can't remember when this started or if I've always had it.

Scrolling through what others have posted suggests my symptoms are on the more manageable side. I see tiny flashing colorful dots across the whole field of vision, even with my eyes closed.

I sometimes get floaters or trailing afterimages, especially from bright lights, which I suppose is "normal" also among people without VSS? I relate some of the more drastic experiences with afterimages to heavy exercise and consequently momentary insufficient supply of oxygen to the brain.

I have no experiences with migraine.

The issue I struggle with the most is reading. Sometimes I struggle quite a lot to focus, and the colorful flickering is especially annoying around black text on white background. It could be maybe described as colorful "layers" behind the black letters flashing and shifting in and out of sync. My eyes seem to get tired quite easily.

Yesterday I went to get my vision checked. I described some of my symptoms to the optician, who was clearly astounded. He said he had read about VSS during his studies but never heard anyone tell him they have these symptoms.

Does this sound like VSS to you, and are there any tips, adjustments etc. you would recommend to help with reading? I need to do quite a lot of it since I'm currently doing a PhD.


r/visualsnow 1d ago

Question Developed VSS recently via Lyrica.

8 Upvotes

I've been dealing with vision issues and neck pain since January, though not VSS. That came a few months ago after a neurologist recommended I try Lyrica.

I remember during the first week, the bottoms of my feet hurt when I walked around. At the two week mark my lower back near the tailbone also started hurting and my neck issues intensified to a unbearable degree. This is where I began to see persistent hazy static and afterimages as well as when the migraines started. I stopped cold turkey there at about two and a half weeks.

Three months later now and the static and afterimages still remain. The neurologist put me on Nortriptyline as a alternative to Gab and Lyrica. This has reduced the static significantly (not completely) and halted the migraines, but the afterimages are mostly unchanged.

I'd like to ask those that developed VSS through prescription medications if this ever lets up at a point or is this something I'll need to manage for the rest of my life? I'm a writer as well as an art appreciator and it's very much so made those two hobbies difficult to engage with.


r/visualsnow 1d ago

Question Odd sensation when going fast/on swings or roller coasters/ when things r overhead. Could it be related to astigmatism?

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3 Upvotes

r/visualsnow 1d ago

just a reminder

13 Upvotes

a lot of autistic people and people with ADHD can experience visual snow syndrome more likely than a neurotypical will so I would say if you suspect you are neurodivergent ore you haven't learnt about neurodivergence but you've always been the weird kid ore you know stuff like that definitely look up about it and learnanother reminder is that pots can trigger and especially worsen visual snow syndrome so that's another thing to look out for it and other chronic illnessesand especially hypermobile ehlers-danlos syndrome it can really really affect visual snow syndrome so if you guys have not heard of it please learn about it


r/visualsnow 1d ago

Vent i’m really starting to lose hope of going back to my baseline

4 Upvotes

can someone give me some hope please… you can scroll through my posts if u need more context


r/visualsnow 2d ago

Media [Epilepsy Warning] - DAE experience this when going from bright to low light environment? Spoiler

Enable HLS to view with audio, or disable this notification

26 Upvotes

Specifically: Lights off -> strobing vision for a few seconds -> instant transition into slow rhythmic pulses


r/visualsnow 1d ago

Question DORAs like Quviviq/Daridorexant?

3 Upvotes

Anyone uses these? Experiences? They should be vss safe for sleep as far as I understand correctly?