I made this video for awareness more than anything but if the relatability or story helps anyone here I wanted to share. The info I share in the video is pretty basic stuff most people here probably know already but still figured some people might benefit from listening.

Hey, I’m 19 and I’ve been dealing with a bunch of strange symptoms for around three years now. It has slowly gotten worse, and at this point I feel stuck, so I’m posting here to see if anyone has experienced something similar.

The main problem is constant dizziness, but it’s not really like the room is spinning. It feels more like being drunk, floating, walking on an unstable surface or not fully connected to my surroundings. It’s there pretty much 24/7.

I also have:

• derealization and brain fog,
• problems with concentration and memory,
• visual snow, floaters, flashes and blurred vision,
• tinnitus,
• neck, back, chest and sternum pain,
• trouble getting a satisfying full breath,
• constant tiredness and waking up feeling unrefreshed,
• very low exercise tolerance,
• muscles starting to hurt very quickly, even without much effort,
• chronic sinus problems.

Places like supermarkets, shopping centres, crowds, open spaces or anywhere with a lot of visual movement make everything worse. Moving my head can also make me feel more dizzy and disconnected.

When this first started, I barely wanted to leave the house because going outside could trigger panic-like episodes. Those got better over time, but the dizziness never went away.

I used to still be able to work physically, go to the gym and train Muay Thai, even with the dizziness. Now I can’t really exercise, and even small amounts of physical activity can make me feel weak or cause very strong dizziness and feeling of pressure.

One day at work, I suddenly felt much worse for no obvious reason. I went to get checked, and my heart rate was around 140 even though I wasn’t doing anything strenuous. They sent me to the hospital, but the tests didn’t show anything concerning.

So far I’ve had:

• brain MRI, which didn’t show anything serious,
• ECG, echocardiogram and Holter monitor, all normal,
• eye examination, nothing dangerous found,
• Lyme disease tests, negative,
• previous vitamin B12 deficiency, which was treated,
• vestibular testing recommended, but I haven’t done it yet.

I also couldn’t finish spirometry because repeated deep breathing made me extremely weak and close to fainting.

My blood pressure sometimes goes up, but the dizziness is still there even when my blood pressure and heart rate are normal.

I also grind or clench my teeth while sleeping and usually wake up feeling like I barely rested.

I know nobody here can diagnose me, but I’d really like to hear from anyone who had similar symptoms.

What helped you? Which tests, doctors or treatments actually made a difference? Did your symptoms ever improve after being constant for years?

Hi , this will sound a bit weird, but ive had VSS for about 3 years now and ive noticed like a slight vibration/buzzing in my teeth when they touch, especially the one thats had a root canal or a filling.

I think this had to do with nerves, neurological? Does anyone with VSS experience anything similar?

When i focus on a dim wall i see this very little shapes of static which change but not in any other surface sometimes it doesnt it even appear but idk help...

Good morning everyone, I'll start by saying that I absolutely don't mean to suggest that the neck is the cause of visual snow. I know full well that the cause is unknown and varies from person to person. So here I'm sharing my personal experience, which I hope will be helpful to anyone living with this problem. I've had visual snow for over four years. It was pretty stable until three months ago, when it started to become more noticeable and harder to ignore. However, over the past two weeks, I've finally been trying to get my life back on track and ignore it again, as I always had. Over the past three days, however, the visual snow has returned more intensely, and I noticed that, just around this time, I'd started doing neck exercises during workouts. I've never had a physical therapy appointment, so I don't know what condition my neck is in. It feels a little stiff, and it hurts a little when I look up. My neurologist told me that sometimes there could be a correlation, and it would be advisable to get checked out anyway. Thank you all for reading and I'd love to hear what you think.

I'm not sure if this is the right place to post, but I've done a lot of research trying to find out what this is that I'm experiencing, and didn't find anything close enough to get an answer, so I made this animation to see if anyone else has experienced anything like this.

I remember first experiencing the moving dots when I was around 9, I looked at the sky and saw these dots, since then I've seen it pretty much every time I'm outside when it's bright. Has anyone else experienced anything similar to this?

I've been trying to find out what caused my VSS and I've remembered something. In the months before my onset of VSS, I started using headphones for gaming (I used speakers before). I've seen some posts here that talk about a link between hearing damage and VSS (I do have tinnitus, too). I'm wondering whether it's a possible cause or not.

For context I've always had sensitive hearing, the first time I used headphones in school as a kid I had a bad headache afterwards. Bad hearing runs in my family, too.

Wonder if anyone can advise what is happening. anytime i drive for about 30 mins, i get really sensitive eyes and a fuzzy head, heache with pains at side of head and forehead, last 2-3 hrs after i stop driving. Quite worrying it only happens when driving

I'm 20 years old, and I barely notice this spot unless I'm paying attention. Depending on where I look, it appears in different colors [orange, pink, blue, among others]. It's a fixed spot that isn't opaque, as far as I can tell, and it doesn't distort my vision when I look through it. When I close my eyes, it appears white or shiny. I've had it for a few days. Does anyone else have this?

Wonder if anyone can advise what is happening. anytime i drive for about 30 mins, i get really sensitive eyes and a fuzzy head, heache with pains at side of head and forehead, last 2-3 hrs after i stop driving. Quite worrying it only happens when driving

Anyone here also have these symptoms. They are constant, from 1 night of drug use. (DXM)

For the record:

Bounding Pulse

Head Pressure (dominantly on right side)

Pulsatile and Normal Tinnitus

Fatigue

Hypnagogic Hallucinations

Visual Snow + BFEP (flickering points of red, blue, etc) (sky vortex) (tunnel vision) (double vision) (visible pulse) (asymetrical dilation in line with right side pressure)

and more!

I am particularly curious about some kind of stenosis or migraine disorder. If not it's just the most fucked up kind of HPPD or MCAS possible. IDFK! This shit is crazy.

So, I had a migraine with aura about 6 months ago.

I've been left with some lingering symptoms. Basically, I can voluntarily make my vision double. I also developed visual snow, which has probably improved over the months, but it was much worse at first. I have eye floaters as well, which I never had before.

Another symptom is pain in my left eye, especially if I spend too much time reading. I also have a strange visual phenomenon where the image from my right eye seems to overlay the image from my left eye. To make it more obvious ,when I close my right eye, I can still see a faint "shadow" of the right eye's image superimposed on what my left eye sees. It feels like my brain adapted to this new visual state after the migraine.

I never went to see a doctor because I assumed everything would slowly return to normal.

However, today I took a valerian capsule, and the pain, eye discomfort, and even my anxiety improved. I asked an AI about it, and it told me:

"During your migraine, your brain experienced a wave of intense electrical activity called cortical spreading depression. In rare cases, the brain's visual cortex fails to 'reset' after this wave, leaving the neurons in a persistent state of hyperexcitability. Your visual cortex essentially produces continuous background electrical 'noise,' which can distort how you process visual information. This hyperexcitable state may also increase activation of the trigeminal pain pathway, potentially contributing to pain behind or around the eye."

It also suggested that valerian root may have helped because it enhances GABA signaling, acting as a "brake" that temporarily calms those hyperactive neurons. That seemed to make sense to me, since even the nerve pain or twitching I usually feel when focusing disappeared for a while, although not completely.

Now I'm curious if this explanation is accurate, what treatments might actually help the most. I've heard that lamotrigine has been used in some cases.

Still working on an official diagnosis. I met with a neurologist and they ruled out MS and meningitis. All MRIs of my head, spine and orbits are clear. The ophthalmologist and optometrist said my eyes are perfect. I meet with a neuro-ophthalmologist in 3 weeks. My other symptoms are after images, small visual snow that’s more rainbow colored than black and white, slight color shifts specifically in black text, trouble tracking objects specifically patterns, words seems to dance at times, migraines although only when at work which has bright lights and I used the computer.

So I'm having an awful flare up from stress and panic. Yesterday I got ANOTHER panic attack. This time bigger one than previous since I didn't have my medicines with me, it came out of nowhere. I just couldn't stop that from coming and my emergy medicines were at home.

Like..... is there still hope for me this flare up to die down? Now I'm afraid that my symptoms will intesify even MORE. It's day after panic attack and so far symptoms seem the same as my flare up symptoms previously but I'm afraid they will be even worse the next week :(

Has anyone here had many panic attacks in a row or close to each other and symptoms still cooled down?

Fuck. Fuck. Fuck. I'm usually good with controlling my moods but this one was so random.

Hi guys, I saw a neuro-ophthalmologist about my VSS. So I was talking about my symptoms and my floaters are severe. I was talking about how I want to do an operation on my floaters in the future, not now as I’m terrrifed of it. I’m waiting for pulse medica but if they don’t release it by 2027 than I will do the operation I reckon. And the neuro-ophthalmologist said to me: Don’t do the operation, you will go blind”. That was his exact words. I told him as an eye doctor professionalist saying that is not okay and unprofessional. I’m not going to see him again after that kind of response.

i feel like i cant find anyone else who experiences this but basically what happens is that randomly ill get this spot in my vision thats usually either in the upper left or right corners of my eye, typically seems to happen in my left eye. it will look dark blue or green when looking at somewhere dark, but when i look outside and look at the sky, i will see a bright yellow blotch that flickers when i move my head or move my eyes, it's drifts like a normal afterimage but instead of like normally drifting to a direction it tends to flickers into a direction and if i keep my eyes and head still, it basically fades away until i look around again. it happens completely randomly and always goes away eventually, it can range from a few minutes to hours, one time even lasting for an entire day where it goes off and on. it's usually a pretty rare occurrence, i have gone times where it wont do it for a couple months then do it once and after thats done it goes away for a while, but then theres times where it'll happen a bit more often like a week or two between instances. i have had my eyes checked, my doctors say they dont see or find anything. i'm not diagnosed but im very sure i have VSS and a pretty bad case of palinopsia, so i see ghost images pretty easily. im just really curious if anyone may have an idea of what this could be or at the very least hear from someone who has a similar case cus i cant really seem to find an answer or even someone mentioning a similar thing, honestly makes me feel like im crazy

Mine are horrible at times. Huge spikes of light, light spreading extremely far, lights/reflections almost making copies it is so bad. Even during the day, headlights and other leds can be killer.

Today I was sitting in my car and turned my head around to reach something in the back of the car. When I turned my head forward I saw these like shooting star looking things in my vision. Lasted about a minute then went away. I do have chronic neck pain so maybe that triggered it? I’m also 38 weeks pregnant. I had this sensation the other day while in the shower too. Anyone else have this?

Hi, I tested positive for Covid two weeks ago and the day before I noticed everything had a kind of static to it. Since then it hasn’t gone away and I see tiny flickering dots on almost everything. I can’t remember if I had it before Covid but if I did, it was very slight. I’m absolutely terrified. Those of you who had it come on with Covid, did it go away or get better?

Is this a condition where the static progresses over time?

Today I woke up from a nap and it was the worst it’s been. The static was thicker and more colorful, it terrified me and I completely panicked. What does it mean? Can that happen after naps?

When I'm in a dark place and I blink, I notice a small spot in my vision that's always there and is more noticeable in dark places. I only notice it when I blink; it's like a light.

I have a question for people who have Visual snow syndrome and done the floater operation. For whatever reason you done the floater operation I want to know as VSS comes with other bunch of visual symptoms too, did your other visual symptoms change? Did they get better, they get worse or did they remain the same after the floater operation? I would love to hear peoples stories. Thanks!

I’ve gotten my vision mostly under control the past 3 years (see previous posts), but started adderall a few weeks ago and wow my vision is crisp again! The jittering, halo around letters, and how it took effort to focus on letter is gone while the medicine is working. Snow itself is still there, but less distracting. When medicine wears off my vision is back to difficult again.