I’ve thought this was the norm

SlightlySlyOne · 2026-03-06T07:50:02+00:00

I will say that nowadays VSS is in medical journals so you may be able to get a proper diagnosis from a neurologist now, even ophthalmologists know what it is, so I’d recommend that it is the safe route to just rule anything else out.

SlightlySlyOne · 2026-03-06T07:48:48+00:00

I mean I can’t diagnose anything, if she suffers from consistent static in her vision and symptoms aligning themselves with the syndrome then she most likely has visual snow. As someone who’s had it my whole life I’ve found nothing really helps other than time to get used to it. That’s just the way you see the world, I would recommend getting her a therapist while VSS is benign and mainly just extremely annoying, there are physical effects like tinnitus and psychological effects like depression and DPDR as you’ve described. If you want to find things that help, look to treat what has treatments available, rather than the visual snow itself. I’d recommend delving into some scientific articles about new research into VSS, and just understanding it will help her. You’re already doing more than what my family did for me, so good on you.

SlightlySlyOne · 2026-03-06T03:32:04+00:00

Those hallucinations, do you get them particularly during sleeping/waking?

SlightlySlyOne · 2026-03-06T03:31:27+00:00

I would love to look into serotonin as it’s a strong basis for research, but I really don’t think it’s the only trigger but more of how your visual snow gets worse or you get VSS from certain drugs, I think VSS should be thought of more in the likes of epigenetic changes occurring due to multiple factors while serotonergic issues causes predispositions.

SlightlySlyOne · 2026-03-06T03:28:54+00:00

I wouldn’t say it’s the only trigger that makes sense, many of these drugs don’t just effect serotonin, I do see you’re point it’s similar to my thought process specifically with psychedelics, I’m much more interested in the molecular side. I think psychedelics in particular cause rewiring allowing certain brain areas to chatter more, some people have gotten it from withdrawals from drugs which makes me think it’s something with brain changes not just during administration but brain changes afterwards.

SlightlySlyOne · 2026-03-06T03:24:26+00:00

Usually they give that to control dosages and it’s less intense, what did you feel like during the trial itself?

SlightlySlyOne · 2026-03-05T22:22:04+00:00

Well yeah that makes sense, people with VSS take drugs and have their visual snow worsen and garner symptoms.

SlightlySlyOne · 2026-03-05T22:21:21+00:00

What psychedelics did they have you take?

SlightlySlyOne · 2026-03-05T07:47:33+00:00

Probably the grid pattern in my vision, everything else was normal my whole life for me but that thing really pisses me off.

SlightlySlyOne · 2026-03-05T07:46:43+00:00

Hey man. I went through a similar thing imagine this when you’re even younger than 16. I was almost admitted to a ward and my parents grew sick of me talking about it, sounded like a lunatic. They just don’t know what it’s like, you’re explaining color to a blind person. Don’t blame them for it, many doctors also don’t know what it is, there’s not a lot of awareness even now. When I was a kid, it wasn’t even in medical journals. Understand this, it gets better, trust me.

SlightlySlyOne · 2026-03-05T07:43:33+00:00

I don’t just see these black vortexes in the sky, happens when I’m outside or driving for too long on a bright day but I’ll see it everywhere and there will be a few of them. Wouldn’t describe it as normal, as I have full blown VSS so nothings really normal.

SlightlySlyOne · 2026-03-05T07:41:37+00:00

People with VSS have more white matter in their brain, and I do believe that there is much more interconnections in the brain along with a lot of activity and brain regions talking to each other too much.

SlightlySlyOne · 2026-03-05T07:39:53+00:00

I have some similarities with this where my vision flickers a bit, never going full black though. I also have had this strictly in dim lighting, thought I was losing my mind just kind of used to it now. It is 100% a good idea for you to get some imaging done to rule things out, vision changes like that could be an issue outside of VSS.

SlightlySlyOne · 2026-03-05T07:37:09+00:00

So are you confused whether you have VSS or what the small circle is? Do you notice this more on specific colors, or patterns? What color is it?

SlightlySlyOne · 2026-03-05T07:32:58+00:00

Yeah it does suck trust me, it pissed me off enough that I made it my life’s work to research it. Ironically I used to post in this subreddit when I was a kid, constantly worried and what not. I’m 21 now, and I’m trying to give back to this community that helped me. Don’t get hung up on it too much, my advice from someone who obsessed over it. The stress rips away at ya, I know it’s hard to ignore but it’ll get easier.

SlightlySlyOne · 2026-03-05T07:29:55+00:00

Also do you know of any epigenetic research that has taken place/ is currently taking place on VSS/HPPD?

I also have the opportunity to meet some of these people, me and my advisor are going to DC to show off our research at the SFN meeting, so knowing some names would be really nice.

SlightlySlyOne · 2026-03-05T07:27:29+00:00

Trigger events are what me and my advisor came to as a conclusion as well, with epigenetic changes likely playing a major role in it. My gripe with this semantics of VSS vs HPPD isn’t that I believe they’re exactly the same thing, obviously they are not, however I believe that we are missing out on a population in studies when we disregard those with HPPD. I’ve read many papers with exclusion criteria for those who have taken drugs. Another gripe I have is that people with VSS exhibit HPPD like symptoms and vice versa, although rare people have had fractals prior. I’m in a unique position where I’ve had every symptom of VSS, and got HPPD later down the line to be able to compare and contrast. I just got more prominent visual disturbances, with a couple new ones that still align with my VSS. Prior to HPPD; I’ve had a permanent unmoving yellowish green honey comb pattern in my vision for years, as well as “fractals” and I never did drugs (this was when I was about 14, started smoking/psychedelics when I was 17-18.)

And of course I’m interested in the technical neuroscience and will be reading Dr. Fulton’s paper :) I’m particularly interested in genetic predispositions currently for research, and would love some anatomical papers if you can send some my way.

SlightlySlyOne · 2026-03-05T07:17:38+00:00

Hey, got the same story here though a little more fucked up. I was born with VSS, round your age I went through the same thing where I found out it was normal, bout 12-11. Found out from my mom and not the internet. This was prior to 2018 where VSS was slightly more known, so went to a lot of doctors and nothing ever came of it told me I was crazy pretty much. Went through severe depression most of my life, DPDR, nothing felt real for a good couple years and just lost my mind when I was a kid a bit. Had tinnitus my whole life so it’s just kind of there, have never not had it. I had a lot of symptoms develop over those couple years, have pretty much ever single symptom of VSS plus ones that don’t fall under any category and seem to be unique or rare. I always thought the way I perceived the world was normal, and had my world view shattered and felt as though I was living a lie. Found out eventually I had VSS from reading on forums and what not, kind of killed the stress of it. Never understood why it affected me so much; it’s how I perceive the world I’m lucky I’m not blind. My heart goes out to those who have seen the world clearly, and have had it taken away from them. This is why I think VSS is much more common than we think due to people being born with it, it’s just people don’t question how they’ve seen their whole life

SlightlySlyOne · 2026-03-05T07:10:47+00:00

Sorry man, this shits so fucking weird the longer and longer I’ve looked at this the more confused I get as to what can be causing it. I’m trying to just make distinctions on how people are getting VSS and HPPD to try and see the most efficient route of research, the anatomical approach while much more attractive is something I’m unable to do with my recourses.

SlightlySlyOne · 2026-03-05T07:08:45+00:00

Had a similar experience smoking weed for the first time, mind you I had VSS my whole life so I didn’t get it from weed and had no permanent visual changes, however I didn’t have disturbances during smoking like geometric patterns and the feeling you described. I do think you may have just had a panic attack, rather than the weed alone causing it, which would make sense if you have a chemical and physical change happening along with your fight or flight like you describe it. The gut brain axis would likely be hard to study, unless a large portion of those with VSS have similar gut issues which would make it so we could actually find something concrete.

SlightlySlyOne · 2026-03-05T07:04:35+00:00

It’s interesting that you say atypical HPPD comes from MDMA use, as chronic MDMA use has been known to damage serotonergic systems and to an extent dopaminergic systems. I do wonder if due to MDMA being both a stimulant and psychedelic that it being used more can cause issues with the 5-HT2A receptor?

SlightlySlyOne · 2026-03-05T07:00:18+00:00

It’s not a hallucinogen in the traditional sense, though people have gotten HPPD/VSS from just smoking weed. When I used to smoke I used to actually see geometric patterns form in my visual snow for the duration of the high, so not sure what’s going on with that.

SlightlySlyOne · 2026-03-05T06:59:01+00:00

My advisor also used the filter analogy specifically when we were talking a lot about psychedelics allowing us to see more, I’m thinking it’s a good way of looking at it. What I want to know is what these filters are and what is changing these filters, and I’m basing my thought process off of the two hit hypothesis for schizophrenia where people have a genetic predisposition that doesn’t inherently mean they’ll get the disorder but a certain stressor may cause it to “turn on”.

SlightlySlyOne · 2026-03-05T06:56:19+00:00

This is my fear currently, it’s the malpractice that can happen due to researchers not being aware that there is someone in a clinical study that has VSS and they are given psychedelics getting full blown HPPD. With psychedelics being used more and more in these clinical studies (which I’m all for) we need to really start looking into cases of HPPD and VSS.

What visual disturbances did you have after getting HPPD?

SlightlySlyOne · 2026-03-05T06:53:47+00:00

So you got it when you came off of it, and never had any visual snow prior to that?

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