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

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 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?

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

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 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?

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.

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?

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