Has anyone in this forum been to Magwise (Poland), university of Bern (Switzerland), or any other neurologic clinics in Europe that provide neuromodulation?

As an American, it would be difficult to travel and do any treatments there, but from what I can see online, they have been attempting RTMS, specific neurofeedback, and other treatments to try and alleviate VSS.

I just went through 15 sessions of Neurofeedback, Kloud therapy, vision therapy, and 6 sessions of Exomind TMS therapy to the occipital lobe. It pains me to say that I still feel the same, as I have with my plethora of treatments the past 8 years.

**BUT, after some of the treatments, for the remainder of the day, I felt this sense of partial clarity. Yes I still saw the Visual snow symptoms, but something felt maybe 10% better. So knowing that, kinda makes me feel as if it’s possible for neuromodulation to be my avenue to getting better. Im not speaking for all, and everyone’s going to have different methods that may help.

Im 18 and a couple times in the last week or so I've woken up with such horrible visual snow that my vision is flickering. I'm not diagnosed with any sight problems besides just the normal near sightedness but both my parents are legally blind. I don't really have visual snow ever during the day either. So I don't really understand why. Is this something I should talk to my doctor about? Or is it fine because it goes away after a bit?

It's quite scary 😭

My symptoms are roaring atm so I wanted to see again where we are at with the VSS research.

There is Pelak's RTMS study which has been going on from the year 2019?

What happened with Schankin's tACS study? Neurofeedback was also studied, started 2021 and still no results?

Was there also some new rTMS study in Russia? Did it ever start? Any more information about that?

How about that new NESA XSingal study in Portugal/Spain, did it even start?

I tried to look VSI webpage but I can't form a good picture what is the current situation with research atm.

Is it just a thing to start researches and then never finish and publish them?

I received an epidural during childbirth, so I got VSS. During that time, I experienced CSF leakage and horizontal double vision, and for two months I was only focused on how I saw. I couldn't even get out of bed because lying flat is necessary for the CSF leak to close. During that time, I noticed floaters and BFEP. After researching, I found VSS and started noticing statics as well. I'm getting used to my vision now, but whenever I feel like I'm getting used to it, I remember what I went through and wonder what it would have been like if it hadn't happened. Honestly, adjusting to my new vision hurts my heart. I'm very grateful that I don't have any debilitating symptoms. However, thinking about the possibility of it getting better is deteriorating my mental state. Please, can you support me? How can I overcome this? Right now, the pain of what I went through is upsetting me more than the symptoms. Honestly, if I hadn't experienced double vision and CSF leakage and my vision had become like this, I probably wouldn't have worried so much, thinking that my astigmatism had increased and floaters had formed. But I can't get over the trauma. My vision isn't that bad now, but the fear I'm experiencing is preventing me from getting better. Please, will you support me?

Hi everyone,

first of all, I want to express my sincere empathy to all of you. I have been dealing with what I believe is a rather severe case of VSS since 2020, so I know how challenging it can be.

Please also keep in mind that I am not trying to speak for everyone. Every case is unique, and if I generalize at times, please don’t take it personally.

Lately, there’s something on my mind that I would really like to discuss with fellow VSS patients.

I’ve noticed what seems to be a significant difference between “lifers” and those who developed VSS later in life. That difference appears to lie in how people deal with the symptoms. From what I’ve seen, VSS often causes much greater distress in those with a later onset, while many lifers don’t seem to be as mentally affected. I’ve read comments from lifers who go months without even thinking about their VSS - which is great, of course.

This made me wonder why that might be the case. I have a theory: for those of us who were used to normal vision, our brains may interpret these visual changes as a potential threat. As a result, we pay more attention to the symptoms because we fear them. This can lead to anxiety, a constant fight-or-flight state, and repeated checking to see if the “threat” is still there. In turn, this increased attention makes the symptoms feel even more prominent. It becomes a vicious cycle.

People who were born with VSS or developed it very young never learned what “normal” vision looks like. For them, VSS is their baseline. Because of that, the symptoms may not be perceived as threatening, and they are less likely to get caught in this cycle.

I wonder if breaking this cycle is the most important step. If we can teach our brains that the symptoms are not something to fear, it might allow us to gradually adapt and pay less attention to them. That, in turn, could calm the brain and reduce the perceived intensity of the symptoms. In a way, this would create a positive cycle instead: less anxiety, less checking, and fewer intrusive perceptions.

What do you think?

Friends, before getting the VSS, I thought it looked like the iPhone 16 Pro Max camera. Do you think this is possible? Or is my brain romanticizing the past because things have changed, and it seems like it was the best time? I feel like I used to see things much more clearly and sharply, and that's why opening the phone camera makes me feel down. Do you think it's possible to see it like the iPhone 16 Pro Max camera? Or are these phones taking photos with adjusted colors and sharpness due to advancing technology?

First started a couple of years ago but now it’s just progressively worse and worse especially in the past 7 months. Ive eaten very poorly for the past 5 years and pretty much just microwaveable stuff and have back issues but I’m seeing a chiropractor, also I have a lot a lot of stress and I used to be in ssri’s for about 4 years but have been off since December. It’s probably related to me getting off ssri’s cuz it’s all kinda gotten worse since weining myself off them which sucks cuz I’d really prefer not being in them but if i were to get back in them would my visual snow get better (if that is the cause) cuz I might have to. Also in general my eye sight is worse cuz 4 years ago I had 20/20 vision and now my eyes are very fucked up. All of the doctors say my eyes are okay and specialist do as well but idk what to do.

Okay so this happened today and I genuinely don't know what was thag6

I had just woken up and was sitting on my bed. My sleep was already mostly gone by then. I noticed something on the floor tiles. It looked like something was written there, which was weird.....because to write on floor you literally have to scratch it with something sharp

Then I thought maybe my father.... ( just random reasoning at that time)

And then I noticed it wasn’t just one tile. It looked like there was writing across multiple tiles till the door. That’s when I got confused because who and why would even do that? So I got up from bed and went closer to read what was written.

But i wasnt able to read it

I tried focusing on it, but the "writing" slowly started disappearing. I somehow convinced myself maybe it was just sleep effect and stood up again.

But after that for around 5 minutes, I kept feeling like things had writing on them

Tiles

Tables

Random surfaces

( and it wasn't like i was sleepy at that time I was fully awake by then)

Then slowly everything became normal again.

Like.....What the hell was that?

I’ve only seen things like this in movies/shows. Never experienced anything remotely similar in real life.

I do read a lot.....before sleeping too (around 3–4 hours a day) so I wondered if my brain was somehow still in “reading mode” after waking up or something

But still..... something like this just because you read before sleep??? It was weird.... and the actual creepy thing is how real it felt at that timw when i was fully awake..... I was literally trying to read it

Has anyone experienced this before or knows what this could be?

What did the ophthalmologist say? I just noticed this tonight.

I’ve been struggling really bad with depersonalization, and just last night I went to a concert and it doesn’t feel like it happened. Not because it was surreal, but it feels like I read or watched a story of someone else attending the concert. My memories morph into that of another person even a couple hours after occurring. Please help me.

Well, it's been more than 3 weeks since I got palinopsia for the first time, at first I didn't notice I had palinopsia, it was very very mild, I thought my eyes were tired or something like that, but these days, it's been increasing day by day, it's worsening and I see trails of almost everything, I started seeing negatives afterimages, and now I see both negative and positive afterimages, I don't have snow vision, I just got palinopsia, and its just 3 weeks since I got it, before I got palinopsia, I had a severe migraine which lasted about 4 days, it was a like a thunderstorm in my head, I really thought I was gonna die, by the way, before all this, I had a strong panick attack, I've been under stress/depression for a long time, my palinopsia is 24/7 right now, and it's getting worse day by day, I do still have small headaches, will I be will well again? Will it fade out? My palinopsia went from very mild to moderate

Glycine is a co agonist to glutamate at the NMDA receptor, but at the same time exhibits inhibitory effects outside of the brain. In theory, the addition of glycine should worsen symptoms in many upon taking magnesium glycinate (well, the magnesium theoretically blocks the receptor so neither can go in, but this is assuming that there is enough magnesium, which there is almost never enough in neurological issues).
Yet magnesium glycinate is still recommended for migraines and VSS, over other forms like Taurate which can even enhance gaba? Any theories why glycine can be fine for many despite the excitatory effects on the brain?

Has anyone here been under anesthesia? (Full anesthesia like propofol.) If so, did it impact your symptoms? I am scheduled to have an endoscopy and am scared shitless worrying that it's gonna permanently impact my VSS or something.

Hey everyone, I've had VSS for about 15 years. I've been going through a bad flareup after trying to go back on ADHD meds.

I see a lot of people on here saying Magnesium is helpful. I have been trying Magnesium Citrate 400mg for the past couple days and I feel like it might be making my after images a little worse.

I could just be paranoid about the whole thing, but has anyone had bad experience with Magnesium?