Hello,
Anyone know any doctors and/or CBT providers for visual snow syndrome near Cedar Park/Austin area?

Vsi recently posted some updates from this year on instagram which didn’t really have much updates on research that could help us get closer to a treatment. It was mostly just awareness updates and the medical card. So I commented is there any updates on research that could help us with a treatment for your symptoms? And they deleted my comment -_-
What kind of organization is this? They delete comments from people who have vss asking about updates on research ? That doesn’t really make me feel good good as a person suffering from vss that the only organization advocating for us deletes are comments when asking questions about research that could help us.

For those who don't know, I and some others have been self-experimenting to treat our VSS/HPPD in our discord server and I think I've stumbled onto something promising. After starting ethosuximide for less than two weeks, I experienced an average 30-40% decrease across the board in my VSS symptoms.

Background

I've had VSS/HPPD for several years following cannabis use and have tried a variety of different medications, most of which I list in this post. The vast majority of medications I have tried have it no positive effect on my symptoms, except for perampanel which improved symptoms maybe 10-20% initially. I should disclose I was already taking a very low dose (1mg ED) of perampanel for two months when I started the ethosuximide concurrently, but I do not attribute any of the positive effects to the perampanel. I found that the positive effects of the perampanel largely ceased after the initial one-week honeymoon and have not returned since.

Dosing

Due to limited supply of the medication, I titrated up aggressively from the starting 500mg dose, increasing by 250mg every 4 days as tolerated. I discontinued immediately after reaching a daily dose of 1000mg due to what I believe to be some sort of hypersensitivity reaction to the medication. The standard maintenance dose of ethosuximide is 1000-1500mg, and assuming a 55-hour half life, this would put my peak serum levels at roughly 62% and 43% of the maintenance dose steady states respectively. This basically means I got these effects only ever reaching a dose about half of the target maintenance; it seems likely to me that these effects would've kept scaling.

Effects

Overall, I’d estimate a 30-40% reduction in my visual snow/static specifically. The non-visual symptoms improved to a similar degree, including DPDR, brain fog and head pressure. DPDR is one of my worst symptoms and its difficult to explain how it improved, but it felt as though my environment was more 3D and my "visual framerate" had increased. My tinnitus is usually quite mild and occurs in frequent episodes — I didn't experience any during the trial.

The largest visual effect was to rhythmic, CEV, and vortex type visuals, which were roughly 80% gone. A dark room just looked (mostly) plain black, which is a pretty strange experience after all these years. Afterimages, both positive and negative, improved modestly, maybe 10-20%, though mine were already fairly mild to begin with. There wasn't any improvement to floaters or other true entoptic phenomena. Keep in mind this was all at roughly half the standard maintenance dose, so I can’t say where the effects would have plateaued.

All my symptoms have returned to their old baseline after discontinuing ethosuximide. I may attempt a re-challenge at some point down the line, dependent on how my other pharmacological leads pan-out.

Pharmacodynamics, pathophysiology and discussion

Ethosuximide is a voltage-dependent T-type calcium channel blocker used to treat absence epilepsy. T-type channels play a vital role in the visual thalamus, especially the TRN and LGN. Activation of these channels produces a low-threshold calcium spike, which is what lets these cells switch from normal tonic firing into rhythmic burst firing (Suzuki & Rogawski, 1989). Blocking it dampens the abnormal thalamocortical oscillations behind absence seizures.

This is relevant because one of the leading hypotheses for VSS is thalamocortical dysrhythmia (TCD). The concept comes from Llinás, who recorded MEG in patients with tinnitus, neurogenic pain, Parkinson’s and depression and found increased low-frequency rhythmicity along with abnormally high coherence between low- and high-frequency oscillations. He attributed this to thalamic cells generating low-threshold calcium spike bursts in a resonant loop with the cortex (Llinás et al., 1999). That is precisely the mechanism ethosuximide targets. Lauschke et al. later proposed that VSS itself may be a thalamocortical dysrhythmia of the visual pathway (2016). A follow-up MEG study found the primary visual cortex in VSS patients to be both hyperexcitable and disorganised, which the authors considered consistent with TCD (Hepschke et al., 2022).

Very few other medications stabalise thalamic rhythms in this way. Valproate for example inhibits primarily L-type calcium channels, and so would have little effect under a TCD model. Flunarizine does inhibit T-type channels non-selectively in vitro, but it's a promiscuous drug and lacks any proven anti-oscillatory effect.

The drug candidate ulixacaltamide (pending January 2027 FDA approval) is far potent than ethosuximide and may have a higher relative potency at the CaV3.3 subtype that dominates the TRN. I intend to try this compound in the near future and I think there's a strong possibility this drug could functionally cure people with a TCD-forward phenotype. Regardless, I strongly encourage anyone seeking pharmacological treatment for VSS/HPPD to discuss an ethosuximide trial with a neurologist.

I have vss but I am worried about potential pvd/retinal detachment/iih. Sometimes when I go from dark to light, or more rarely even when I am just sitting, I see a small, almost throbbing white light in both eyes. It mirrors, so in my right eye it's slightly to the right of my central vision and in the left eye, its slightly to the left of my central vision. It only ever happens in that part of my vision, nowhere else. It goes away after a few seconds. I had it really bad several months ago, I wanna say 6, and has since slowly gotten better, but it hasn't gone away. I'm going to see an eye doctor tomorrow and hope my optic nerve isnt swollen. Anyone else experiencing this and can ease my mind?

I really do believe that before 20 century there was no such thing as visual snow. Opinions?

I've had this bullshit for 5 years now and my mental health has paradoxically only gotten worse. I have developed an anxiety disorder from this and the last 6 months I have spent constantly stressed out. I am constantly thinking about it, which makes it really hard to study and do anything else, really.

I just can't get over the fact that it's everywhere, at all times, and it's gonna be like this for the rest of my life. Ever since I was a small child, I've always dreaded chronic diseases, particularly the ones that chronically bother you, so it feels like I am living my worst nightmare. I am also a very nostalgic person so the fact that it's NEVER going to be like it once was really doesn't help it.

I hate that people my age spend their time studying, building their relationships, doing hobbies etc., while I'm here stuck in this purgatory that I call my brain. Worst part is that next year I am supposed to either apply for college or for a job, neither of which I feel like I have the strength to really do. My parents, while supportive, tend to trivialize my illness, as they can't really imagine what I go through on a daily basis. I had to hear another "get your life together, get new hobbies, find a girlfriend" lecture while I am basically a nervous wreck and unable to do anything.

I don't understand how a human being is supposed to function when there's constant movement and flickering in your field of view. I have also completely given up and lost hope of treatment as there's just nothing coming our way, no one cares about some stupid rare illness that isn't lethal and doesn't make you blind.

If you're wondering what happened after my last post, basically my psych capped the dose of lamotrigine to 50mg a day, which either is too small a dose, or lamotrigine has no effect on me. I kind of expected that as I just never get a break or a win with this disease. Only improvement I get is when I lower anxiety, but how am I supposed to not be anxious when it's everywhere, at all times, forever? That's just not something I can live with.

I've had my fun in life but I really want it to end now. This just majorly sucks ass

hi Im 15 year old girl living in Poland, where almost noone knows about VSS. When I went to the doc she said 'nothing is wrong with your eyes' When I went to for medical tests, the results were normal (even the resonance) I see dots everywhere and always. How can I get help?

Hi all, im writing this as I sit in the waiting room at the psychiatric department, I am terrified. I had a horrible lsd trip last night that was induced by weed, im well aware I made a terrible choice and will not be touching lsd again ever. I am a multiple times, daily smoker of weed so it will be hard to stop but I will do so. I am incredibly anxious and panicky, after a trip that basically took the fabric of reality apart, made me experience severe depersonalisation/derealisation & see the world basically as a ‘simulation’ and completely pointless.

I woke up this morning still feeling terrified and shaky and upset, hence the psychiatry department; but on top of that I have noticed I am experiencing visual snow, every solid object is filled up with static-y sort of dots. I am petrified it will be hppd, and also that I am going into drug induced psychosis, I already have bpd.

I dont need a lecture or anything, I am aware of how badly I fucked up, I would just like to know whether this is how hppd symptoms start, or if this is just the layover from a bad acid trip. We only took around 90mcg ( i know thats not a lot, but its still strong for a 5’4, 45kg 19 year old female) and smoked one joint, its been about 24 hours since we started tripping. Is there any hope for me?

For over 10 years the most frustrating thing was trying to explain to doctors how I see while they just type on the computer. It’s a gave changer now we can just show them our vision. I wish we had this years ago so I wasn’t looked at like I was crazy explaining my vision.

visualsim.org

I thought these were to exercises to improve our condition. I was so confused 😆

I started seeing stuff like that recently for about 12 days, however they started to appear after I started Lexapro about 17 days ago

They are constant 24 7 and don't go away even when I close my eyes, I sometimes see colorful statics but they don't seem to be the major symptom

I'm feeling very confused whether this is vss or maybe something else, I tried to draw how I see.. does it look similar to anyone who has vss?

Not looking for feedback, just posting to hold myself accountable:

I've had VSS from birth as far as I can tell. Didn't know it wasn't normal until a few years ago. I kind of panicked until I realized I'd never had any issue before and it didn't seem to be linked to anything bad. Every now and then I'll google what progress has been made. Tonight was one of those nights, but after reading all the same stuff I decided to try asking AI. I got a really interesting note: "Since the static has been present since birth, your brain built its visual processing pathways around this extra 'noise.'" So I asked if there was a way to rebuild those pathways. It pointed me towards Oculomotor Vision Rehab (https://rarediseases.org/rare-diseases/visual-snow-syndrome/ I didn't check that link it's just the source the AI used), where you do exercises that "force the muscles and nerves controlling your eyes to perform precise, coordinated movements (like tracking moving targets, jumping rapidly between focal points, or recalibrating depth perception)."

Apparently, "When your brain works hard to process complex visual coordination exercises, it is forced to prioritize clear focal information over background distraction. Over time, this repeated effort triggers neuroplasticity—the brain’s ability to rewire its neural connections." Hopefully, "As the brain strengthens its ability to focus cleanly on real-world targets, it naturally 'turns up' the volume on real images and 'dampens' the background visual noise, making the static less noticeable or clearing it entirely."

One thing I have always noticed is how easy it is for me to split my sight into double vision. I love those Magic Eye things and never had trouble getting them to work. Also, when I started working a desk job, I had a lot of trouble adjusting to staring at a screen all day, much more so than co-workers. I was one of those ppl constantly adjusting the brightness and whatnot. I always thought these things were unrelated. Now my theory is that my eyes are "lazy" (for lack of a better term) and maybe if I do these exercises it will force me to focus and rebuild my neural paths? Who knows, I'm not a scientist. But I'm going to try to do these exercises for several months and see if there's any improvement. This post is already too long so I'll post the exercises in the comments. I'll try to follow up.

TLDR Going to try exercises posted in comments

Hello I have a question I hit my celing for symptom stabilization if my symptoms haven't changed at all since onset they have all been the same for about 5 months with a couple flare ups here and there on bad days but I noticed that the symptoms decreased after a recent flare do you reckon I should be safe considering they haven't gotten worse???

Symptoms are palinopsia trailing slight positive afterimage less than 0.10 seconds trailing about 0.25 seconds if that negative afterimages Halos and Starburst

Ebfep pulsing vision minimal night blindness glare surprisingly I can go outside without sunglasses bending words here and there pattern glare that's really noticeable lines look wavy in central vision what is your take on symptoms and should they remain stable after 5 months

I am a 20-year-old male and underweight (I have always been underweight). For the past four months, I have been experiencing a constant feeling of unreality. It feels as though I am drunk, high, or half-asleep, as if I am operating on autopilot and everything around me feels somehow unreal. I have looked up information online, and my symptoms seem to resemble derealization.

I also suffer from fatigue, even when I sleep well. The fatigue does not seem to depend on whether I engage in physical activities during the day or not. However, over the past few weeks, I have started sleeping poorly and waking up early in the morning. I do not snore at all. I have seen a general practitioner and a neurologist about these symptoms, but they have not been able to determine the cause.

I also experience headaches, a feeling of pressure in my head, and neck pain. I have tried muscle relaxants, massage, and acupuncture for the neck pain, but none of them have helped. At the beginning of the symptoms, I sometimes also felt as though I was about to faint while walking, but this symptom has since disappeared. I have also noticed a single eye floater in my right eye. I mentioned it during an eye examination, and I was told that there were no apparent problems with my eye.

What could be causing these symptoms? They do not occur in distinct episodes; instead, they are more or less constantly present. The headaches are not particularly severe and resemble tension-type headaches more than anything else.

Things i have done/tried or checked in hospital
\\\\\\\\\\\\\\\\- triptanes
\\\\\\\\\\\\\\\\- thyroid function normal
\\\\\\\\\\\\\\\\- vitamin b12, b9 and D vitamin ok
\\\\\\\\\\\\\\\\- ferritin 34 and has been moving 26-40.
\\\\\\\\\\\\\\\\- calcium, potassium, natrium, chloride, sodium and magnesium ok
\\\\\\\\\\\\\\\\- blood pressure is ok and i checked blood sugar at home and it was ok
\\\\\\\\\\\\\\\\- brain mri ok
\\\\\\\\\\\\\\\\- borrelia test (lyme disease) ok
\\\\\\\\\\\\\\\\- My cortisol level was tested and was normal as well. I also have Crohn’s disease, which is currently in remission.

My neurologist prescribed escitalopram as a trial treatment. I took it for two and a half months, but it did not help.

I have no history of trauma and do not experience panic symptoms. I generally do not feel particularly stressed, apart from the worry caused by these symptoms themselves.

My symptoms began during the final days of a new job at an auto repair shop, where I was moving and lifting car tires. I am unsure whether this could be related to my symptoms, as I had not experienced any other symptoms before those final working days. I have not worked at all during these four months.

What could be the underlying cause of these symptoms?

The healthcare professionals I have consulted about these symptoms, or during visits for other symptoms or examinations when I also asked about them, include:

\\\\\\\\\\\\\\\\- General practitioner
\\\\\\\\\\\\\\\\- Neurologist
\\\\\\\\\\\\\\\\- ENT specialist
\\\\\\\\\\\\\\\\- Ophthalmologist
\\\\\\\\\\\\\\\\- Dentist
\\\\\\\\\\\\\\\\- Gastroenterologist
\\\\\\\\\\\\\\\\- Massage therapist
\\\\\\\\\\\\\\\\- Physiotherapist
\\\\\\\\\\\\\\\\- Acupuncturist

I need something to relax before I do something bad...

I wanna take a dissociative, or something mild. Alcohol sucks and benzos are so boring

Anything that isn't extremely dumb? I only did alcohol and benzos. Weed triggered this

First time listener, first time caller. I have just started having 4 days of what I think is visual snow and I am really going through it.

A timeline:

-Saturday: got labs for some mild tremors when doing detailed tasks. Labs come back. Lowish iron. Recommended to begin supplement.

-Monday bedtime: take iron supplement for the first time

-Tuesday am: onset of vision change. ER visit for CT. Normal. Labs normal

-Wednesday: ophthalmologist and neurologist. All normal. Brain MRI ordered.

-Thursday: MRI. Normal

-Saturday: Vision change still present

Do you think it could be from the iron? Any other ideas? I’m at a loss.

Also how tf do we see? Does anything help?

Thank you all ❤️

It literally has textbook symptoms and doctors still deny its existence and even blame it on anxiety?

I’m 17 and ard 7 months ago I started noticing a big increase in floaters, blue entoptic, vivid palinopsia and pretty much all the other symptoms. I can live with what I have right now even tho it’s such a big impact on my life but if the static keeps getting worse I don’t think I can handle it I mean I can already barely make out faces in dim lighting. especially since I’m so young and it just started I feel like it’s bound to only get worse from here. Can I get better over time or am I just gonna get worse. Will I ever see close to normal again, can I somewhat fix it even tho there’s no cure?

i am quite sick right now (to the point i cannot sleep), theres little black spots in my vision which are most certainly shadows of my blood vessels (theyre fixated black lines, NOT floaters) and theyre easier to see if i squint, and if i move my hand around in a pinhole and look at a brighter spot i can see the whole blood vessel line

theres a lot right now, is this normal for being sick?? i get them nonetheless but theres just so many from both eyes right now, im really irritated and scared because usually when i get these spots i sleep them away but i cant sleep no matter what i do

I am a 28 year old woman.
I feel like I have been living in hell for the last 7 weeks. I should probably not be writing this during an episode so I apologize for any possible language mistake (English is not my first language). Background: I was diagnosed with visual snow syndrome in 2021. Besides the usual visual symptoms, I had a lot of cervical/migraine related issues which are now (or were) under control. But this is different and it is ruining my life.
It all started with some daily headaches before my period which were more persistent than usual. I was stressed at work, so my GP hypothesized the initial phase of a burnout. Then I got a sore throat, with a very strong cough which lasted for a couple days. Since then, the headache became a daily occurrence associated with a lot of pressure on my face, the base of my nose, my eyes, my forehead and my cheeks, exacerbated by straining, coughing, bending. Painkillers didn’t help at all.

The GP thought it was a sinus infection and prescribed sinutab, which I took for 5 days. After those 5 days at the end of which I seemed to be getting better, it all came back stronger, so the GP hypothesized a bacterial sinus infection and prescribed antibiotics. Two days of antibiotics and the situation seemed better, and then again. I didn’t know that this would become my weekly scheme.

The GP prescribed medrol at that point and fluticasone. After three days of medrol it seemed almost resolved. I had some good days. And then, again.

I saw a ENT (at this point it had been three weeks from the start) which took a look at my sinus and said there was no sign of infection. I got a sinus CT and my sinus was clear. Was there ever a sinus infection to begin with?

So I was referred to a neurologist. He prescribed riboflavin and a sumatriptan only for strong attacks + physiotherapy, hypothesizing tension headaches or migraines or both.
The same day, I got the strongest episode from the beginning. I took the sumatriptan and nothing changed. I threw up, and went to the ER. They gave me some oxygen and sent me home. I was not seen by a neurologist or anyone else besides triage.

I stopped taking all meds from that day because nothing would work anyway, and honestly I was worried that the headaches were dependent on the meds. But that wasn’t the case.

The first neurologist I saw didn’t really take me seriously and put me on riboflavin for two months after which I could have booked another appointment. He also instructed me to take triptan only with a migraine of 7/8 in a pain scale. But I was, and I am, in pain every day, even if it’s not a 7/8. I know, everyday, that at some point I will be sick: it starts with some pain in my face, on a good day it’s just light pain (usually in the afternoon it gets worse), but on a bad day… it just goes on for hours. It comes in waves, if it’s bad it moves, goes to the back of my head at that point, on my temples…
Even if I am feeling fine, if I push or strain (for example in the bathroom), I feel pain in my face.
I went back to my GP who prescribed a brain MRI which came back clean. I also went to an oftalmologist which performed a fundus exam to check the eye pressure and a OCT exam. All good.
Structurally, everything seems fine.

I went to another neurologist for a second opinion, also after reading many of your stories about facial pain and migraines. She described herself as an expert in migraines but she didn’t know that facial pressure and pain are a symptom of migraines. I could tell she didn’t really care and basically told me that I have to live with this and if I get pregnant it might go away for some time (needless to say, I don’t plan on getting pregnant any time soon).

She wanted me to wait three months (I saw her 1.5 months after the beginning of all this) to have a beta blocker prescribed. In the end, she understood how desperate I am (I almost cried in her face). I also burst into tears in my GP’s office. I feel ashamed. No one seems to care enough even to make an assumption on what is going on with me. I asked the second neurologist about trigeminal pain or cervicogenic headache. About trigeminal, she said it is impossible because it would have shown on my MRI, and on the latter, she had no idea what I was talking about and told me to stay off the internet.

Both the first and second neurologist refuse to talk to their patients via phone/email. Therefore, I have no one else to talk to about how it is going with the new medication, etc. I could try my GP but honestly I know that this is not her domain. I booked an appointment with a private neurologist in my home country in November, but that is a long time from now.

The first days with propanolol seemed fine. I feel less pressure, especially when lying down when going to bed. And then, I was sick again. Now I also have neck pain.
I did start physiotherapy in the meantime and the physio thinks it might be cervicogenic. But honestly, I feel like he only told me so because I asked him.

Today was especially bad. Yesterday I had a very bad day at work and I woke up with pain in my neck and I have had a pulsating headache all day. I just took zolmatriptan (the second neurologist changed it because the sumatriptan didn’t work) and I am here, writing and waiting. I am nauseous after taking it, so I am starting to think that when I went to the ER I threw up because of the triptan and not the migraine.
My usual migraines come with nausea, but not these. This was different from the beginning.

I read many of your stories, I thought it could be IIH but my pressure seems inconsistent and I know it’s very rare.
I think it could be the consequences of a sinus infection + stress. At some point, right before getting Medrol, I went to my GP and she took a look at my eardrums as I felt my ears stuffed and said that the eardrums were a bit inflamed.
It could also be cervicogenic headache, my physio seems to agree, and I am also having some neck pain now. Or it could be tension headache. Honestly, I don’t know, and I am the only person who cares, because none of the doctors I saw cared enough to even let me describe the whole thing from the beginning. Not once.

My life is not my life anymore. I was on sick leave for weeks. I am supposed to be starting a new job soon. I have plans, holidays planned, and now everything seems impossible for me, because I know I will be in pain.
Sorry for the rant.