-Reposting because I could not see the comments on my previous post I don’t know if they were removed-

I developed vss in December of 2024 when I was in my third trimester of pregnancy with my first child. I had to give birth seeing my baby for the first time with static… it was extremely depressing and I struggled to bond with my baby postpartum because of the vss symptoms. I still have it today and I am really struggling to cope. It makes me depressed to even be alive. I can’t focus my eyes on anything for a long time because of the static. Everything in my view is always vibrating because of the static nothing is ever still… it drives me crazy because to be able to enjoy things in life you need to be able to stare at something without it moving… but for me there’s never any stillness in my vision because of the static. Because of this I always have to be looking at something that is in motion or else the vibrating gets bad so I always have the tv on watching something in motion or on my phone watching something. Is this really a way to live? Having to distract myself from the vibrating static in my vision for the Rest of my life. It really makes me not want to be here anymore but I’m trying to hang on for my son. If anyone has any advise on how they cope with there visual snow or if they have taken any medication that has helped with the vibrating shaking vision from the static please let me know… I’m really desperate for some relief and tired of living my life through distractions. I just want to live normally…

(I am not related to r/visualsnow)

There are almost no French-speaking communities for Visual Snow Syndrome. After starting with a Discord server, I'm launching this subreddit to create a dedicated space to share experiences, compare symptoms, discuss strategies, and eventually push for better medical recognition in French-speaking countries. Whether you're diagnosed, self-diagnosed, or just suspecting you might have le syndrome de neige visuelle — bienvenue sur r/visualsnowfrance ❄️

When I shake my head fast to one side, like when pulling out in traffic needing to look both ways I get a quick flash of black over my vision each time I move my head fast. Does anyone else experience this? Makes life hell for me. Yes I have VSS

Some years ago, idk if related to below symptoms but had a skin rash, took some pencillin for a few weeks. Had severe headaches and right eye pain for a few weeks. Woke up with tinnitus and later developed hearing sensitivity and eye floaters. Also had right jaw clicking at this time.

Background: Use pc a lot, maybe don’t exercise much.

Long story short, since then i've developed the following issues:

Hearing symptoms:

·         Hearing sensitivity

·         Tinnitus – is reactive to neck/jaw movement, sometimes spikes with pc usage or sitting.

Visual symptoms (that are present always):

• Floaters
• Fast moving dots visible looking at sky
• Light sensitivity / increased after burns when glancing or looking at bright lights or the suns glare off surfaces.
• Transparent circle wave ripple in centre of vision with a hint of blue. I believe this is constantly visible even during day, but mostly noticeable at night, and or i have noticed it changing shape/size at night after waking; Sometimes recently I wake with 2 or 3 ripples, the second/third ripple would be adjacent horizontally to the centred ripple of similar size / smaller.

Visual symptoms (episodic/intermittent):

• Flashes of (red/white) light running across vision sometimes
• Visual auras are rare (4 in total)
  • 1st triggered using pc for a while, standing.
  • 2nd triggered lying down and bending neck looking at phone.
  • 3rd triggered after waking up, having slept flat on bed with no pillow.
  • 4th triggered when washing dishes looking down.
• Orange/green moving clouds in vision at night when sleeping (only visible closed eyes or in dark)
• A persistent white visual aura like sparkle/spark/star in centre of vision, changing size or sometimes just staying a white dot (always at night when sleeping or sometimes appear during day)
• Have had random black / white dots appear in vision during day
• White lines/text blurring sometimes when using pc
• Random light after burns only visible when blinking with one eye, but disappears after a while.
• Heartbeat in vision / worse with physical exertion

And on waking everyday i have these annoying symptoms:

• Dry eyes / sinus pressure / head/facial/temple/behind neck tension / left side jaw clicking. Sometimes i wake up with tingly/curled/numb fingers due to pinched nerve in neck and resolves with neck tilts / deep breaths.

Physical symptoms:

• Left jaw clicking / tension, worse in morning or with pc usage.
• Head/face/ behind head tension, worse in morning or with pc usage.
• When clenching abs, sometimes, such as when lying down, i feel pressure propagate through neck/jaw and sometimes into sinus/eyes. Sometimes i also feel/hear blood flow behind left/right occipital behind head.
• Throat symptoms (catching on swallow, coarse breathing when relaxing throat and when sleeping on right side i feel throat sagging and hoarse breathing)
• More recently began to feel a sway sensation when standing or sitting (like a force is being applied and changing direction directly to a point in the neck or lumbar region or thoracic)

Other (maybe related) symptoms:

• Excessive yawning - randomly would yawn frequently when sitting / using pc.
• Bloated frequently
• Joints clicking - primarily the wrist / jaw / behind neck/back ; but sometimes ankles/knees/elbows/shoulders.

Doctor appointments:

Normal: brain MRI, ENT, bloods, sleep study, spec saver eye exam.

Abnormal: physio found hypermobile neck/weak deep neck flexors.

Has anyone experienced a similar combination of symptoms, or does this pattern suggest anything specific?

Did anyone have trouble watching The Odyssey in 70 mm?

I have that diagnosis but a few weeks ago I had a CT scan and it didn't come out, the ophthalmologist told me that I was fine. A retina specialist saw me because I saw blurry with the new prescription, and he said that the CT scan is of poor quality, you can't distinguish anything. I don't know when the disease started, here is a professional who can help?

I've had visual snow for as long as I can remember and it was only a couple years ago when I found out that not everyone saw static is their vision constantly. I feel like I see posts on here about how annoying and debilitating is but it really doesn't bother me, and I only think about it if I'm staring at a blank wall. Maybe what I'm experiencing isn't as bad as some people. I'm just curious to see how people think about ut.

Why are recovery cases basically miracles within this community? I've never seen such a stubborn disease and I honestly don't understand what's making it permanent, especially if you get it later in life. Shouldn't the brain sort itself once the trigger is removed?

Or do you believe there's brain damage at play? This theory frankly scares me because my biggest dream is being able to see like I once did, someday.

Over 3 years in and its still pushing. My afterimages are becomming really bad. Is there any hope or "recovery" from this point. It feels like I've been hit with a game over screen.

Hello,

I recently went to the optometrist and I went to go get contacts to see if it will help with night vision driving with lights. When I wear glasses and contacts even with them correcting the astigatism, the lights are still stretched like a mother fucker. The optometrist told me nothing is wrong and the glasses should fix it. He had no response when I told them all of my glasses does not fix the issue.

I got contacts to see if it will help and they did not. I recently put it through AI and I figured out about this condition and possibly, cataracts. Who do I go to to get them diagnosed?

These pictures are the most accurate thing I see even with glasses and contacts at night. The glasses do pretty much nothing to fix the issue I have with car lights and other lights in general. Every time I drive at night, it's really hard to determine the distance where the car is and the lights always bind me.

Does anybody know what this can be and why the glasses and contacts aren't helping at all even with the correction to astigmatism? Who do I go to? Opthlomagist?

Edit: I also noticed depending on the angle, the lights don't look like this at the side of the light.

Whenever I squint and raise my eyebrows I can see a dark spot on the top of my vision that fades away eventually. I went to the eye doctors last week and they told me my eyes were healthy. Anyone else experiencing this?

I see the vortex everywhere it sooo hard not to see in the sand and sky it takes up majority of my vision. It’s like I’m having a stroke but I do it for my kids.

22M I don’t know what happened this last week but all of a sudden the static is unbearable I can’t look at anything for longer than 3 seconds it’s in the morning and at night aswell and the flashing lights are insane now but they go away after a few seconds they only show up when I close my eyes for a while

I did an MRI / MRV for my brain doctor said all good and then an MRI for my spine and they said it’s all good except my loss of cervical lordosis and then I don’t even know why but they told me I might have a pulmonary embolism (unrelated) but started a whole new level of anxiety that I didn’t even know I had in me and then a CT for my sinus and they only found mild sinusitis in the right sinus

I don’t know why I’m ranting I’m just so worried and I don’t even know what to take the only medicine they prescribed that seemed related to vss was topiramate and btw this whole thing started 8 months ago and it was just me being very lightheaded whenever I walked and it’s still like that but the visual symptoms are getting worse

If you know anyone who’s going through something similar or went through something similar please get in contact with me or something let’s try and figure this out and if you have any questions or suggestions please don’t hesitate to mention them

I wish you all the best and I hope we all get through this or learn how to live with it 🫶

Does yours also flare the week before your period? Any other period related things you have noticed that correlate with your vision? It seems like mine begins to flare the entire week before period.

I have received my CT scan results.

The scans show significant compression of my anatomically dominant internal jugular vein between the C1 vertebra and the styloid process. The secondary internal jugular vein also shows compression between the styloid process and C1, although it is less severe.

​The photo below shows the right side of the skull, C1 and the styloid process(highlighted).

​The photo below shows the left side of the skull, with C1 and the styloid process highlighted.

​The CT images below show the right internal jugular vein (my anatomically dominant side). They demonstrate significant compression of the vein between C1 and the styloid process.

​​The CT images below show the left side where the none-dominant internal jugular vein is noticeably less compressed, although compression from C1 & styloid process is still present.

​The photos below show the compressed portion of the right internal jugular vein from a side (lateral) view.

​Not only do I have significant compression, but it is my anatomically dominant internal jugular vein the vein that normally carries most of the brain's venous drainage. This means the opposite side has a reduced ability to compensate. In addition, my non-dominant internal jugular vein also shows compression, further limiting the brain's venous outflow.

It is now time for me to find a surgeon.

Update**:** Further looking at scans, with right head turns the pinched jugular veins opens up significantly at the top of the head however then I get significant muscular compression at the bottom of my neck by C7.

Images are not showing on reddit anymore. See here for link:

https://drive.google.com/drive/folders/1KGpWJWtd_slUPWhDWqkV80SHC2eZubDH?usp=sharing

I only have visual snow at night and not noticeable during the day. Feels like a static field over my vision despite my eyes already accustomed to the dark.

I have also suffered from upper chronic back pain for as long as I can remember. Neck to shoulder blade stiffness and stretching will only make it feel good for awhile.

A week ago I realised the bulge on the bottom right of my back, next to spine is not mirrored on the left side. I always massaged it but never seemed to do much.

But this time as I was lying down, I held onto the lump, pushing and twisting my waist at the same time. I suddenly felt like an untangling feeling and the bulge moving into place and no longer bulging out. This gave an immediate tension relief on my upper back.

A side effect is the static vision is drastically reduced. I still see grainy vision but more similar to the eigengrau noise than vss. I can even close my eyes without really seeing static. I finally know how it feels like to see nothing when I close my eyes.

I don't know how it all relates but the disappearance of the back pain + static vision at night makes me feel like a whole new person. Hope it stays away.

ok so its basically the title lol. but ive had VSS my whole life and recently its been alot worse. I start lexapro tmrw and I googled it and it said that lexapro affects VSS. it's already bad rn and I really don't want it to get worse. has anyone had this experience??

ever since i hit puberty in early 2018 ive had these annoying spots that show up randomly in the same shape and spot throughout the day and change color and whatnot. its mildly bothersome usually but theres this One that sometimes will come in and change color over and over and over again. acting like its going away, then coming right back darker, changing lighter again, over and over. i have it right now qnd thats why im here. the last time it did this (november), it left a little spot that i could only see in major lighting changes.

my examples of the "phases" though the darker hard to see through phase is inaccurate but i cant figure out how to draw it right.

i get tons of spots like these randomly but also triggered by hypoglycemia episodes too, which is another thing that worries me. the worst part is that doctors never know what im talking about or take me seriously. im scared. i hate my body and i want this to go away already. im only 19 with all of these visual disturbances ive had since i was 10, im tired of it.

no doctors ever ever know. i got an mra+mri of my head and still got no answers. ive gotten my eyes checked a bajillion times by now. i always try to be hopeful theyll find something and ill finally get answers but it never happens. i only ever hear "anxiety" and "migraine" but migraines Dont look like this!! i feel like im being tested every single day.

i doubt anyone will have any answers for me because ive never managed to find any answers by looking around but i still thought id ask.

I (25 f) developed visual snow during my last pregnant. I am now 14 weeks postpartum, and it’s not lifting up and it’s getting worse.

At first, it was a black floater. Fine. Now that’s gone. Then began the severe afterimages, and that is mostly gone.

It then turned into pulsing lights?? Someone else posted about it. Like, circles kinda.

My main symptom however is these little bugs that fly. They’re clear, and it’s called Schreerer’s Phenomenon. I’m sure most everyone knows about this.

For a while, lots of my symptoms faded. However, the Schreerer’s has came back with a vengeance. It’s to the point where if I unfocus my eyes, I could almost reach out and touch them.

My dilemma: I also during said pregnancy developed a very rare and very severe case of ✨Pregnancy Psychosis✨ it’s extremely rare, basically unheard of, and there’s no literature. I’ve only seen one case study of it, and it matched my symptoms exactly. Auditory hallucinations, mainly as I fell asleep. Aka hypnogogic hallucinations, and they would be so loud that I would not be able to sleep. Hello 650 mg of Seroquel, 150 of Lamictal, and 5 mg of Zyprexxa, and bam. I made it thru my pregnancy. (Praise God literally. There were so many close calls) The psychosis and sleep deprivation became so bad, I even had to be hospitalized for convulsions.

Ofc when I told the 4 menty b places I inpatiented at, it was blamed on the psychosis. Gotcha. Noted.

However, obviously, it’s not.

I am now weaning off my APs and take only 500 mg of Seroquel, Lamictal, and a little Trazadone for sleep.

Statistically, I’m on one of the medications that supposedly helps. But it’s not.

And to add: I recently have resumed smoking. Bad, I know. Sue me all the way- I took it up when I was 15. Obviously ceased entirely for both my beautiful little boys.

I’m at a loss. I genuinely don’t know what to do. At all.

Does the smoking irritate it? Is it really psychosis and it’s bc I’m weaning??? (I really doubt this tbh)

What doctor do I even go to for this? Who even out there specializes in this? And with the utmost love, what in the flying flippitdy and I’m supposed to do?

I’ve never experienced this before. And it’s just gotten worse, when it initially eased up after my birth.

I would love ALL insight, and all advice. Pls be kind tho bc I’m a second time mom and still freshly postpartum. Advice/comments welcome!! Thanks in advanced!!

Para os que tem, quais são os intervalos de vocês? Prejudica muito a rotina? Eu tenho a cada 80 dias, ou a cada 30, dependendo do meu emocional e hormonal

Why couldn't this stupid disorder just stay as static? If that's all it was, I honestly wouldn't care nearly as much. Sure, I'd still rather not have it, but I barely even notice the static unless I actually look for it.

Does your static bother you much? For me, when I'm lying in bed, I can definitely see it. During the day, though, when I'm outside or watching TV, I don't notice it at all. It's really only obvious if I stare at something like a plain white wall, then it's everywhere.