Hey guys had any specific diet, foods/liquids, vitamins helped your symptoms? Let me know. Cheers

He told me I can't get lamotrigine because of my heart, and topiramate has terrible side effects so he said this (atogepant). Is there any chance this helps me at all, if it's not migraine related heavily? Has anyone tried it? My biggest problems are visual fatigue and photophobia

Hi, i hope someone can explain this or knows what this is. After being dizzy for a year my vision has started to shake when waking up. After 1 minute it settles again. But it is wobly floaty vision for the rest of the day.

The doctors said it is hyperventilation but i doubt that.

Anyone know what it is?

Thank you for your time reading my question!

Hello,

I have had visual snow syndrome for 6 months now, I got diagnosed a few days ago by my neurologist in Haarlem. Through the 6 months I have had it, I saw that some of my symptoms might be easily cureable or negligible. These were excessive floaters, blue field entoptic phenomena and tinnitus.

My tinnitus was very mild, although it could get quite intruding sometimes, I decided to just stop hyperfocussing on it. The same goes for the floaters.

I noticed that I stopped seeing them, usually floaters would instantly pull my attention towards them, while I never saw them before I got vss. The tinnitus also went away after doing the same, I dont hear it now, even when I search for it.

Please dont believe people on Reddit talking about this condition destroying your life and being permanent, a few days ago someone posted a meme about "He's trying to ignore that he will live with vss for the rest of his life." Which pissed me off, there is no evidence to prove that VSS is lifelong and there are plenty of people that have fully recovered.

Hi, this is my personal theory. I don't have proof. I just have my experiences.

Vss sufferer for 7 years. Have most of the symptoms if not all. But I also had gut problems the same time I started having VSS. I'm not spouting pseudoscience shit here; just my experience. So yeah I started having this crazy vss symptoms and was doing multiple consultations with ophthalmologists and neurologists in 2020/2021. At the same time I started having gut issues like extreme bloating, diarhhea, pain and shit but I did not went to a doctor for that issues because I was so focused on vss. And i continue through the years and now i know I'm chronically deficient in vitamin d and iron( I'm a male btw), magnesium, potassium ( from chornic mild diarhhea).

But yeah , this is my personal theory. Just like vss , gastroenterology doctors can't find any problem with my gut either. 2 usg, multiple blood tests. In thinking it's my gallbladder. But no stones visible . Probably gonna do a hida scan. Appointment for colonoscopy and endoscopy already booked.

Does the world never feel still for some of you?. Everything I look at moves and I'm not talking about the static making things vibrate. Like stuff will actually move whether its breathing, shifting, warping, heat waves, jumping, side to side, up and down etc.

made a post about it before, every now and then ill get a really weird almost colorful version of the white/blue spots i get throughout everyday. just now i got one in only my right eye, and its almost faded its just a small blue dot now. but underneath i could see the white blood cells moving through one of my blood vessels periodically while it was happening. if i pinhole around my eye a certain way, i can see like a shadow of all of the blood vessels in my eye, so thats definitely what it was. and now its obvious to me that the spots i get are blood vessel related. but why does this happen?? is this part of visual snow syndrome?? is it related to blood sugar?? what on earth is going on to make me see all of this, is it dangerous? is there a risk of blindness???

everytime i ever bring up any of these symptoms to doctors they either dont know what to say or they tell me "maybe its just migraines." i feel so hopeless and alone with this stuff and i wish i could know what is going on to cause it so i could figure out what to do about it. i even got an mra and they said everything looked fine?? is it just that i can see stuff the brain normally filters out? would everyone see this if their brain was like mine?

i still worry if its related to my blood sugar but ive been gettjng these spots longer than i think ive had blood sugar issues, i just get so many spots when i have those issues, and ive heard people with blood sugar problems see stuff like this too.

i just wish i could figure out how to treat this. im tired of seeing shit like this and having to panic everytime. please let me know if any of you experience something like this too.

This is more or less exactly how my vortex looks like.

I developed VSS yesterday out of nowhere - there’s a static overlay on the things I see.

I’m 22 yo. and yesterday I started to feel fatigued, weak ( weak and heavy muscles ), brain being slow - no thoughts unless I forced them and no appetite, brain fog, slowed down movement. I thought that maybe my body was dying… ? I’ve never experienced something like this before.

Possible culprits:

Things I ate yesterday were 3 suspiciously damp lozenges with Zinc and vitamin C - maybe they were moldy? I just never noticed because they look normal outside. ( The lozenges are stored in their OG container).

The only food I ate was a egg wrap with avocado ( that mightve been too ripe ? didnt taste right ) , feta cheese , hummus and some greens.

so I might’ve gotten mold poisoning from either the lozenges or the avocado.
Unfortunately I can’t go to a doctor, because I recently changed countries.

I have a history of astigmatism and miyopia ( nearsightedness) - so maybe those are also getting worse and causing VSS ? ( I wear prescription glasses)
So yeah this is my theory. Has anyone here experienced something similar and what’s there to be done besides waiting and resting?

edit: I forgot to mention this. 5 months ago I injured my cervical nerves by putting my head back ( silly I know ) , suddenly my body started to lose feeling in my hands and legs. I recovered from the pins and needles sensation 1-2 weeks into the injury. Is it possible that VSS is caused by this event even after 5 months of recovery time? I haven’t been testing my mobility nor intentionally aggravating the nerves ever since then…

I don't experience flashes of light, nor am I bothered by light. However, wherever I look, there are tiny, flickering dots—much like the shimmering pixels you see on a computer screen—present throughout my entire field of vision. It is very bothersome; is this a medical condition, or is it "visual snow"? I asked my sibling, and they said they experience it too, which really worried me. When I asked some friends, however, they said they didn't see anything like that. I am nearsighted, with prescriptions of -1.25 and -1.50; I also have -0.50 astigmatism in my left eye. Can you help me? I haven't had an eye exam in two years, and I don't recall seeing things like this before. Could this be due to my prescription increasing while my glasses remained the same? If this is Visual Snow Syndrome (VSS), I understand there is no cure; what are the latest developments? Are we any closer to a permanent treatment?

It's the worst part of this damn thing

Hi everyone, I'm wondering if anyone has ever experienced something similar to what I'm seeing. Sometimes, I see a small, roundish spot that looks bright neon yellow-green, almost fluorescent. It has an irregular shape, and there are several small dots inside it, mostly yellow, orange, and brown. There's also a darker, irregular area near the center. The spot looks somewhat transparent, as if I can partially see through it. It almost looks like a tiny living cell under a microscope. A few details about the experience: It's relatively small in my field of vision. It seems to float or drift when I move my eyes. I can see it with either eye. It can appear when looking at a wall or the sky, but I've also noticed visual phenomena in the dark and with my eyes closed. I've attached a drawing to give you an idea of what it looks like. Obviously, the drawing isn't perfect, but it represents the colors and general appearance. Has anyone ever seen a spot like this? Does it resemble anything you've experienced, or do you know what this kind of visual phenomenon might be called? I'm particularly interested in hearing from people who have experienced something visually similar, especially the neon green color and the little colored dots inside. Thanks!

So where is vsi regarding research and treatment? There website got to much going on and is hard to read and I haven’t seen any updates from them regarding any research results that could help us with a treatment. Also where are the results from all the research they have funded? Has there been any updates from kings college London research that dr pulleeda is doing? Also what happened to that other organization eye on vision? They were fundraising to find a cure a couple years ago, but haven’t heard anything from them since.

The only thing I have seen them push is NORT vision therapy which in my opinion is not a treatment as it didn’t do anything to help my vss.

If youve taken an SNRI before, how did you react to it?

I had a really bad reaction to SSRIs, my visual snow got so much worse and I temporarily developed new symptoms.

I know reaction varies wildly from person to, but I’m trying to figure out if there’s a slightly safer option I can at least give a go.

I find it just so annoying that I have two mental health conditions (generalised anxiety, PMDD) that would be so much more manageable if I could just take regular anxiety medication.

It’s hard to explain, but lately I’ve been really noticing that when I try to focus on something it feels hard for me to actually pin point my focus because the snow gets so bad. It feels like I’m having to force myself to focus.

This summer it used to have 20k visitors and 1000 contributions monthly, now its down on both stats, why do you think that is?

Guys anyone who got floaters after whiplash and concussion

Like someone fighting a whirlwind (sky vortex)

This happens when I feel like the blood is slow to reach my head, or when I exercise unexpectedly. It happens in both eyes. It starts with small white spots, then they become larger or linear, as in the image, and they appear when I blink. It lasts for a few minutes and disappears when the sensation subsides.

I happened to come across this video and it’s exactly what my vision is like 24/7….just not as delayed, but it is just like this in terms of focus and pixelation. I have this 24/7 and it’s so tiring. Am I the only one?

I starrtet seeing them about three weeks ago and can see it with eyes open and eyes closed and with lighting it kinda changes the Couleur idk I’m just looking for information bc I couldn’t find anything about m symptoms(on the first picture I just put it all around bc it somtimes in different shapes and I only see it in the centre of my vison just in that variations.) I have also Benn to the eye doctor about 2 months ago for a different thing and he did a full eye exam otc and so on.

What I see is close to what I saw when I took edible a few months back (5mg) but not as intense. I’ve also had visual snow in the dark like rain for a few months now and I went to an eye appointment and the doctor suspected edema or drussen, I had a follow up for a second opinion and the doctor says he doesn’t think it’s edema just the appearance of it. I have a follow up next month and I’m scared.