Sierra Domb - Visual Snow Initiative's Personal Stories Series

Watch the first video in the Visual Snow Initiative’s Personal Stories Series: Hear from Visual Snow Initiative's Founder, Sierra Domb, as she describes developing the neurological condition, Visual Snow Syndrome (VSS), the moment she first noticed her vision looked different leading up to the full onset of her condition later that day, how what happened affected her life, her most common symptoms, and her hopes for the future of VSS research and awareness.
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[@trashlikesmusic]

i'm crying i'm so happy i found this channel to know that there are other people who are experiencing the same thing as i am.

[@Iamfeelundisputed]

Yeah I was so stressed out knowing there are other people with it helps me alot..we just have to stay strong and wait for a cure

[@dreamlandisfake.]

I know!!! Knowing that I'm not alone feels so nice

[@SHORT_CLIPS_GYMLIFE]

Same on this side. I thought that i was The only one. Nice to know that are Some other people are out there. I searched for years and never found something thank you!

[@rachelg1372]

dude there is a bunch of us

[@MrSteezyyy]

I’m 13 but have visual snow :(

[@mosesnoble5236]

I’m 20 years old and I’ve had visual snow for as long as I remember and for the chance anyone reads this, Live through the panic and anxiety, for me it never got worse ( thank god ) actually it gets better, not because the symptoms get better but because you learn to accept it, when you stop worrying about it it seems like your brain starts filtering it out when you are occupied with work or hobbies, please know you’re not alone and that I hope the best for you.

[@ŽaliaUgnis]

Thank u i'm 20 too and had visual snow since childhood

[@S1deStr1ke]

I'm just glad I'm not going blind

[@harryfash2713]

I'm 26 now, but when I was 13, I first started noticing flashes and floaters in my vision, which were also accompanied by visual snow. I became hyper aware of this new perception, and I too suffered with bad anxiety and ocd. I will say that if you feel plagued by anxiety, that it does get better. You learn to accept it, and often, you even forget about it. Sometimes the anxiety returns, and that feeling can be scary. In those moments, come to the comments section on videos like this and see that you're not alone! To anyone reading this, take a deep breath and have a positive day :)

[@ashwinkv9635]

I got it recently but 4mnths ago i had a chemical in both of my eyes accidentally and at first i had 1 or 2 floaters then it started increasing then i started to have visual snow. I don't know whether it is caused by that accident or because of other reason. Before all this i had a side effect from a medicine prescribed by a physiologist maybe it happened after that idk.

[@nicolestokes05]

Would you say as the anxiety decreases so does the vs?

[@hiddedevries7255]

This is exactly my story! Woke up one day and ...BOOM. Visual Snow! It never left. Go VS initiative and Go Sierra!

[@VisualSnowInitiative]

Thank you Hidde for sharing your story.

[@hiddedevries7255]

@@me_TJ_MrB I'm so sorry. Let her know she's not alone and you can find joy in life again! (...even though VS is always annoying)

[@Connorscarlos]

Yea woke up one day with floaters and blue field phenomenon

[@artursfreimanis4571]

Same !

[@mfraser29]

Me too. No clear cause for me. No drugs.

[@alyssatheawkwardskat]

All my life I had this and I just learned that I had this I thought that this was normal, I can't imagine what it would be like to just wake up with it.

[@calamitynatalie8590]

Same, I remember having it with my earliest memories at 4-5 years old. I thought everyone saw like this! Now I understand the weird looks I would get when I’d talk about it like it was normal lol

[@marise-cellardoor2031]

@@calamitynatalie8590 same!!! My parents thought I was sleep talking when I came in to their room to excitedly tell them about all the floating pictures I saw and the static - I never mentioned it again for years

[@Salty12]

Same, I had no idea it wasn’t normal lol

[@defqongallant5107]

I have had tinnitus for over 10 years and visual snow as long as I can remember. It has got worse the past year and I'm suffering with depression, anxiety and constant panic attacks! It's hard to stay positive I wish more research was being done on this condition!

[@STXRBOY999]

Defqon Gallant hey, how are you doing?

[@eyesofstatic9641]

Stay strong man. Accept it as part of you and adapt to it. It sucks and there are days where I truly feel down having it but try to drive on and you can do it!

[@BudderB0y2222]

I suffer from tinnitus and hyperacusis and recently developed VSS randomly. I’m convinced it’s pathologically connected to hearing damage for me and that resolving the hair cell and synapse damage will also resolve VSS by fixing my filtering system.

[@marcika]

wow! Same here. Exactly the same. I also have it, since I can remember back. (I definitely had it when I was a child) My mother also has it, so it's inherited for sure. We also suffer from aural migraine too. Fortunately I didn't have aura for 15-18 years. (the VS is there all the time) It was pretty sad, when I realized, that I will NEVER be able to see real darkness in my life...

[@mv8908]

Look into neuro inflammation and CIRS

[@cjh0751]

I'm 57 and was diagnosed with VSS this morning by my doctor. Yesterday when I saw snow / particles falling in my living room I thought I was going insane. I'm so happy I found this channel it gives me hope for the future.

[@emilymanning312]

Your story sounds almost identical to mine. I was in college and randomly had an episode of my ears ringing and feeling dizzy. I just randomly started seeing stars, static, and after images 24/7. I saw every specialist from my primary doctor to cardiology to neurology to eye doctors. The migraines that came with it were insane. I would lose my vision in my left eye (migraine auras). I kept receiving answers that my mri, tests, and everything came back clear. I was told I had anxiety and seizures. I decided to keep searching and got into a Duke neuro-ophthalmologist who diagnosed me with visual snow. The doctor described every symptom of mine and knew immediately what it was. I felt so much comfort knowing and having confidence that this was what was wrong. Being put on so many different medicines really affected me in a negative way. I am finally on the road to feeling better. It is upsetting to know that it may not go away, but I am thankful to not have blindness or a brain tumor. So many people were praying for me, and God put me in the right hands. Just having an answer and not guessing anymore is a comfort in itself. Thank you for sharing your story!

[@Svdbsixsixx]

i have visual snow for most of my life.I,m 57 now.i have ocular migraines and autoimune diseases APS/SLE and tinnitus;they might be connected in some way.Happy to finally hear about this on youtube and that i,m not alone.Always thought it was my eyes but it seems to be neurological.

[@damok5804]

Wow this story really hits home, I'm 30 now and I've had these symptoms since I was 12 or 13. The constant fear of going blind or something being wrong with my brain had caused me to have serious anxiety problems. I just happened to stumble across these videos and it is comforting that i'm not alone with these symptoms

[@peacepeace4256]

My son told me two days back n I m crying since then.I read stories and I am more concerned for everyone going through it .I just pray May God help the researchers find a solution for the discomfort. Knowing that there are so many people suffering my life has definitely changed going through all these stories. I am not the same person which I was 2 days ago. I m not a researcher but I can do one thing that is praying for all of you including my son.

[@carlymrha]

I have visual snow too and it’s probably the hardest thing to adapt to, so I’m glad there is a Chanel that makes me feel more comfortable

[@VisualSnowInitiative]

Thankful for your support!

[@aurelinepinkeaint3951]

I'm 16 ; I just found out about my problem which has been bothering me for about 4 months till now. I actually started to notice floaters, flashes, along with visual snow (which I thought there's something wrong with my retina). I was freaked out and went to the eye doctor ;said nothing was wrong. I'm now having mild visual snow and I'm so happy to find out about the real cause of my exact symptoms I've been experiencing. Thank you so much Sierra!!

[@davecolvin310]

I'm 58 about 30 years ago my life changed forever.i remember I had a bad day working in the mines .all at ounce I developed tinnitus and visual problems went to the doctor and said my vision is like looking through a static tv screen along with trails and halos.my ears ring like a loud tuning fork.all specialist thought I was crazy.ive been on disability many neck and back surgeries.its funny I had to wait 30 years to find this info from you.i finally feel justified

[@dennis4633]

Have it for 8 years. Everything is flickering since then (day and night). Reading is hard since then. I'm 36 now. I remember how crystal clear vision felt like.

[@SoundJudgment]

Yep. Totally agree with this. I have the exact same thing you describe... very mild visual-snow. Had it all my life...and such. It is always there visible (to me) in the background, and there is no denying it exists. Same with a very mild case of tinnitus, too. Just have to live with it, and I understand nothing in this day and age can be done to eradicate it through any health program or medication. Many doctors don't know about it and those who do, cannot offer any effective treatment. Probably just some malady of the visual-cortex and the brain. Another tiny stumbling-block in this thing called, life.

[@paigiepanda6958]

I’ve had it my whole life, and it took me until about 8 years old to realize that it wasn’t normal. I started developing many other symptoms such as vertigo episodes and migraines. I’ve been to so many doctors but nothing has ever been found and no medication has helped. The hardest part is the unawareness and misunderstanding other people have about my conditions. It is very helpful discovering and listening to other people’s stories and to know I’m not alone in this!

[@soupercool5288]

It took me until I was 15

[@VisualSnowInitiative]

Thanks for sharing your VSS experience Paigie, we appreciate hearing from you. You are not alone!

[@CollectorMusical]

I've had this condition since I was a kid. I remember seeing colours or what I would call "glitter" in the dark. I would put my hand out and draw through the glitter and create shapes. I was a very imaginative child. I would ask my siblings if they saw the same things but they said for them it was just pitch dark with absolutely no colours. I thought I had superpowers lol. I've only recently discovered the condition known as Visual Snow Syndrome. I'm glad to know I'm not the only one who has this condition. If you're reading this, I hope things get better for you all. This condition has caused me a lot of pain over the years especially with the constant ringing in the ears (tinnitus) which makes my head feel like a ticking time bomb. Just like the lovely girl in the video, we are not alone. I really hope they find a cure. Here's hoping. 🤞🏼

[@metallicatsa]

Hi. Which symptom came first for you. Tinnitus or VSS? I got tinnitus from noise trauma like a month ago, and stumbled upon a video about VSS and now I'm pretty sure that I have it too, so I'm wondering if tinnitus could have triggered it.

[@emre12ang]

Have your symptoms progressively worsened?

[@jicajacobsonkimbreaux]

I did the same thing as a kid, except my does were mostly red. I thought I had some kind of psychic super powers, too! lol 😎

[@VisualSnowInitiative]

Thanks for sharing your experience with VSS. We're glad you found our page, you are correct, you are not alone!💗🤍

[@nataliegrace3545]

thank you for sharing your story, mine is almost identical! I know how hard it is and how scary it is. I wouldn’t wish it on anyone but we are the generation that will solve visual snow.

[@Felipe-di3gm]

i dont believe it :/ we don have no advance

[@nataliegrace3545]

theres always a chance of a break through , dont lose hope.

[@fss1704]

i'M researching an off-bias implant for the cornea to remove the effects of overstimulation, this is basically an amplification problem in the brain.

[@RolandodellaValle]

Hi Natalie, it is terrible when somebody doesn't believe you and says that it is only psychosomatic.

[@beckadrake46]

I hope so

[@tizulis2]

It started gradually with me. At first I realized I had some kind of distortion in my sight but didn't know what was it. Plus I started having photophobia and weird palinopsias. Then I realized it was like a static, and now its quite disturbing. I went to the ophthalmologist and he discarded me immediately with a "that happens to some people, we don't know what can trigger it but its fine, don't worry". I suspect, my extended exposure for screens has worsen it. It all started when I began working/studying at the same time. So I would sit basically my whole day in front of a computer screen. It scares me that at some point it may get worse enough to heavily interfere with my life. For now it just causes me anxiety and bothers a bit from time to time but I am able to cope with it. I hope research comes at some point. Thanks for this!

[@emre12ang]

Have your symptoms progressively worsened?

[@Fran547]

It most likely, from my anecdotal evidence, has nothing to do with screens. I've been born with with VS and I always thought this is the way it is for everyone else. I've been also a major nerd ever since I remember and I spent most of my life in front of a screen. The VS didn't get any worse or better, it's just the same as it always been.

[@tizulis2]

@@emre12ang my syptoms progressively worsened for the first year and a half since this started (back in 2019) but I think they have now reach up a point of no change. I have worse days and I have better days. But overall it stays the same.

[@tizulis2]

@@Fran547 fair enough , maybe it was something was happening to me at some point regardless of my screen time. I have found it to worsen it tho, whenever I spend too much time working on the computer.

[@Fran547]

@@tizulis2 kinda sucks man, I hope it won't get any worse for you and welcome to the club buddy :) Hopefully they will figure it out sooner or later

[@danbond22]

I was almost in tears watching this. Completely mirrors my story. Suffered with various symptoms of VS 24/7 for 9 years now. Had all the same issues with seeing all sorts of doctors who didn't understand, was given anti-convulsion tablets that made me feel awful as well. I had dealt with it for so many years alone, trying to find out what it was until recently when I had some amazing luck and went to a doctor here in England who had studied it a lot. Well done for sharing Sierra, love the confidence you give off, and the fact that you're still living your life, and it feels so good not to be alone with it, for people to understand!

[@dn-pp5ny]

I got a migraine one day, the next day I went to class and noticed there were spots all over the white board, and trails behind my teacher as they walked. That was almost a year ago.

[@fss1704]

Dennis M a bit creepy...

[@RolandodellaValle]

Hi Dennis. My visual snow also began with a migraine with aura (vestibular type), but I noticed the visual snow the first time when I was twenty. My neurologist however calls it "persistent migraine aura without infarction" since my VS is related to the migraine.

[@mynewnameisthisok]

Exactly my experience DennisM. Have been dealing with it for 6 months now

[@braydenfooley9199]

Eyes still fucked up?

[@dn-pp5ny]

@@braydenfooley9199 yee

[@Vilma_R]

Thanks for sharing your journey. As you said, it's rly nice to find people online around the world with the same condition. Coz when I developed VS in 2010, there were not many answers and communities. But now Im glad to see, that there is maybe some hope and people with VS unite ♥️

[@haqsach4147]

What are your symptoms?

[@swartkat4218]

I have this and ringing in the ears. Also went to many doctors to try find out what's wrong, they did not know about this. Only many years later did I find out the correct term for it. I have accepted it and it's part of my life now.

[@matthewpadilla6671]

how many years have you had it ? what’s your visual symptoms

[@andrewnicastro8400]

I'm currently 24, I developed my Visual Snow about a year ago. When I first noticed it, I too went into a fearful state and thought that I was going blind. I went to various doctors as well and most of them had never heard of it before and was told that "it's just one of those things". After that I decided that it was pointless to seek any more help from medical professionals since there is no treatment and it would be pointless to do so. Everyone I ever talk about with it thinks that I'm a liar or I'm crazy. I do not understand why people simply cannot believe that something like this is real. Now I have come to accept it and live with it better after doing more independent research. I have hopes that someday soon there will be a cure for this and that we will all be able to see our world without this horrendous filter. Thank you for spreading the message.

[@VisualSnowInitiative]

Hi Andrew! Thank you for your support and for sharing your story. Our research team is always working on new research for treatment and potentially a cure! Feel free to donate to support the research for VSS 💙🫶🏻

[@mfraser29]

Exact same experience for me. Woke up and there is was. Thank you, Sierra, for your many years of work on behalf of the VSS community.

[@gianfrancoschramseis]

Thanks so much for your story, matching perfectly mine. One thing I've noticed, the more I'm stressed the more I have visual snow and noise in my ears, the more I'm relaxed the less my brain cares of them (same situation for my floaters and phosphenes)

[@VisualSnowInitiative]

Hello Gianfranco, how are you today? We know that stress will elevate your visual snow symptoms as you experience first hand. It's so important to learn relaxation techniques when you become anxious or stress. Thanks for sharing.

[@Jakecaseyy]

Honestly when I’m clam it’s like it’s not even there

[@ambershah5741]

thanks for making this initiative! people need to be more aware about this

[@ahmettaha8267]

Woooaaww this is me !!!! TANK YOU FOR THIS VIDEO ❤❤❤ I AM HAPPIER NOW

[@VisualSnowInitiative]

Thank you Ahmet, we're glad that you found it useful. Please subscribe to our channel for other good VSS content.

[@TheBlondale]

I had it my entire life

[@aperson8934]

Same

[@Natasha-lw4om]

I was 8.

[@tasos0135]

I think i was born with it

[@steliosmhhh]

Your entire life?? You are a hero.. i have it for 7 months

[@blueberrypoptart2424]

I remember being like 5 thinking I could see the atoms in the air

[@joshuatoms7664]

I have had it all my life. I do not get migraines, but do get massive after-images to everything I look at. Complex patterns that change, and that I can influence. It is sometimes annoying, but I look at it as a gift.

[@VisualSnowInitiative]

Thanks Joshua for sharing your VSS experience. We're glad to hear that you can turn your visual symptoms into a positive thing. Best of luck! 💗🤍

[@Sybil13Grey]

I have been living with this for over 5 years now. My symptoms are pretty severe, especially the light sensitivity and afterimages. It is constant like she said and after going through so much testing, have also found no solutions or answers. I feel for her and understand what she is going through. It can feel so isolating, depressing, and difficult. Even more so when you know what you’re experiencing and nobody around you understands what it is. Thank you for sharing. It has been the one thing that has given me some hope for Visual Snow and my experience as well.

[@InterfectorBCEyearsago]

do yoy also experience when you look at a straight line for long it bends

[@VisualSnowInitiative]

Thank you for sharing your story!

[@senordingdong]

I have had these symptoms for 15 years and have struggled so much to describe them to doctors. Just to know the name of the condition and that other people go through it makes me feel so much better. Thank you.

[@VisualSnowInitiative]

Thanks for sharing with us, we're glad to hear that you found some answers. We hope that our KZbin channel has been helpful.

[@splocal]

Thanks for sharing your story. This sounds like what has happened to my son at 20. I’m so heartbroken for him but praying for answers and a solution but we’ve been doing everything we can think of and nothing has helped. He seems to be doing better emotionally knowing his life is not over. But I wish we had answers as to why this happens and how it can be corrected.

[@VisualSnowInitiative]

You are so welcome. Thanks for sharing the story of your son. We are always here for support and resources

I have it for 19 years and I didn't know what is it. Now I know. Doctors said it was all right.

[@marcika]

It took me almost 3 decades when I realized that what I see is not normal. Doctors barely heard about it. (MR, EEG perfectly normal, my brain functions as it should do)

[@shahzaadkhan4562]

I have had visual snow my whole life (27). Mine is colourful little dots encompassing my entire range of vision with or without my eyes being closed. I am so happy to hear other people have it too. I hear the ringing always, and my head is in constant pain. I always wondered what on Earth it was. Thank you. It is somewhat cool to be afflicted with something so rare. Doctors also put me on heavy meds for someone easily twice my size. I only weigh about 40kg.

[@VisualSnowInitiative]

Thank you for sharing, we appreciate hearing from you.

[@ChrisKadaver]

I developed visual snow after accidentally looking straight into my projector lens. The day after the accident I first got super light senestive, and that remained for maybe 1-2 months but went away with time. I had to wear sunglasses during that time. Except that my vision in low light has degraded like crazy. My 70 year old dad have better vision in darkess than me. The visual snow is still there, but I don't care about it anymore. One year later I got severe tinnitus and that is way worse I think. Also I have ME/CFS.

[@scottm4193]

I developed mine after a weekend of drinking, smoking weed and taking mdma. I beat myself up for it from time to time but hey i was just living my life i guess and never knew about this condition before. I have found that when i wear sunglasses it seems to reduce the symtpoms slightly. I developed tinitus as well after the event.

[@VisualSnowInitiative]

Thanks Scott for sharing your story. Hope you're doing ok today.

[@Maxsmate]

Sounds like me. Don't blame yourself it was going to happen at some point! How are you getting on today?

[@Neesha242]

I got this whenever I used to smoke weed. Then I would get scared that my vision wouldn't go back to normal. I saw static. Once I went to sleep and I wasn't high anymore it would be normal. it's weird! I had to stop smoking weed

[@katya231]

Dear Sierra, thank you so much for raising awareness. You are such a beautiful and fearless young lady! I was endlessly happy to discover this channel and your video, and the term VS itself. Please stay strong and carry on!

[@Eli-yr3rs]

i cant imagine seeing normal. like im just trying to imagine waking up one day seeing like this. i dont remember not having it but i also dont remember having it. its just there.

[@sandrooffermans1809]

I’ve been going trough the same. Having VS for 3 years. Let’s hope someone will be able to cure it ever..

[@michaelwarwavesyn9391]

I think I've had mine all my life and only just began to take check on all my senses and realized this isn't normal. I can't imagine not having it. Thank you so much for sharing.

[@VisualSnowInitiative]

Thank you Michael for sharing your VSS experience.

[@EpicClutchh]

i got vs too i had it since i was born but one day i wen on vaction with my family i had a parasite so i had to take meds to cure it the way back to the netherlands whare i live i started seeing black things in the sky when i was looking out of the window in the car and i was like oh shi* i think the parasites went to my eyes i went to alot of docters did my own research and found out that i had VS it became worse since i took the meds in marokko i was also scared that i would go blind or even die i am happy that that is not the case and i hope there will be a cure one day i hope all of you have a great life

[@alyssatheawkwardskat]

I wish my story was like that my story is boring AF

[@Blackthorne-z5z]

Very well spoken.

[@mzrms]

Wow I have this but it’s not often. I knew this couldn’t be normal. I had my eyes checked but was good with a eye exam. To know others have this makes me feel like I wasn’t loosing my mind.

[@emre12ang]

Have your symptoms progressively worsened?

[@VisualSnowInitiative]

Thanks for sharing your experience with us, we appreciate hearing from you.

[@botto8099]

I've just stumbled across the VSI, as well as some of the newer research. As a lifelong sufferer, thank you for all your efforts and for sharing your story. It makes me so happy to know that awareness is increasing, and that there are people out there proactively doing something about it.

[@Gavenoth]

I have had visual snow and floaters for as long as I can remember. I also have a moderate case of tinnitus and get occasional migraines with regular headaches being much more common. My eyes have always been very sensitive to light, and driving at night is very uncomfortable, borderline painful, which often can trigger headaches. My visual snow isn't overly debilitating, as it is not really noticeable during the day unless I am looking for it. At night it is very noticable and makes it much harder to see. I do have very good night vision, but my visual snow competely ruins that, as it severely distorts the edges of objects. I get around by visuallizing exactly where things are, to compensate for the visual snow distortion. If i look at objects out of the corner of my eye, their corners are not nearly as distorted. At night with my eyes closed i occasionally have my entire vision flash with white light, and sometimes the will be a sort of lightning show, especially if there is pressure applies to my temples when laying in bed. As I near sleep and start to "day dream" sometimes in my daydreams a situation will occur where there is a bright light of some sort (whether it be a light, flashlight, the sun, etc), but it will be extremely bright, and completely flood my vision with blinding white light. I have to mentally tell myself that my eyes are close so everything is black, pitch black and there is no light, and my vision will go back to normal. Almost every night as I'm falling asleep, i will see a movie/slideshow, if you will, of random objects that quickly morph from one thing into another, sometimes being animated. The images are very abstract and have nothing to do with anything that happened during the day. I feel like this is how my mind unwinds after a full day of use, much like using the "Device Maintenance" app on your phone to free up memory and space that was used by apps, or a memory dump. The images are quite persistant when they start, and do not dissapear when i open my eyes. They are around the same "opacity" as my visual snow. When they start, I know my mind is really starting to wind down in preperation for sleep. Out of everything, my tinitus is the most annoying as it is very distracting at night, and I have to have a fan on to drown it out. If i don't its hard not to focus on the ringing, and I will develope a headache. All of this is completely normal for me, and doesnt really bother me, or impair my everyday life (the visual snow at night, i just compensate for). There have been a few times when i have worried about possibly losing my vision, more so when i was younger. The only thing I will probably seek medical attention for is the tinitus.

[@fara4485]

Exactly like me.. its trouble me to fall asleep..

[@VisualSnowInitiative]

Thanks for sharing your VSS experience with the community, we appreciate hearing from you.💗🤍

[@clairaishavillaflores8116]

Im glad that i am not alone and finally know whats the name of it, I told my father about this and told me he also had it since he was young then i asked him if there’s anything that helped him but there isn’t, her mom just brought him to the optometrist and nothing changed, up until now there are days that he’s still suffering and worst case scenario he cant work for a day. While mine on the other hand started when i was in junior high it was really hard for me because i can’t focus on those times it attacks and I hate it when im taking an exam and school and i just cant read the paper and having a super bad headache, Nothing can help at that time because i didn’t also know what it is called. Recently I went to optometrist to buy some graded contacts and to have an eye check up, Im a bit disappointed when i share to him and asked what i am experiencing but he just told me that it is JUST NORMAL and it was because my eye grade is getting higher but i know to myself and sure that this is different, it is not what it is, people here in my country cant understand it, Good thing u found this video and finally someone exactly what i am experiencing appeared .

[@al2s1717]

I’m only 16 and have been dealing with this for months now. I don’t know how it even started. I don’t know if weed had anything to do with it because I did smoke some a while back. Then after a while gradually I started seeing static in my vision and little moving white dots when I look at the sky, but now it’s gotten so severe I can see it on white walls and objects. The only way I can totally forget about the static is when I’m watching tv or on my phone but I have high myopia and doing that is even more harmful. It was really bad last year with the static and vertigo but it eventually went away and I started seeing normal again. But now it’s happening again I’m hoping it will go away and this is only a thing that happens every year...

[@idiwudidiyu3937]

how is it now?

[@VisualSnowInitiative]

Thanks for sharing your experience with VSS. We are so glad you found our page. You are not alone! 💗🤍

[@erikamartinssf81]

I’ve had it for 4 years, I also have light sensitivity & floaters. Wish my doctors cared enough to do more testing.

[@emre12ang]

Have your symptoms progressively worsened?

[@jsubham]

Hello, sierra i'm 20 years old boy from India and i have also been suffering from this rare condition Visual snow from the past 2 years....i see static in vision 24/7, eye floaters, afterimages and trailing (palinopsia), Blue field entoptic phenomenon, Ocular Migraine , double vision and tinnitus (ringing the ears)....my eye floaters are constantly increasing in number...i have also been to opthalmologist several times and they say my eyes are fine there's nothing wrong with them...my symptoms started in 2016 January just like you woke up one day and boom visual snow everywhere.....i hope your team finds a cure for this condition...and treat patients like me.....and I'm really sorry it happened to you...i started crying when i was watching your video... you really motivate me.......

[@RolandodellaValle]

Hi Subham, have you ever suffered in migraines? By the way it is interesting to hear that not only people from the western world is suffering in this disease.

[@jsubham]

Do you also suffer from Ocular Migraine...????

[@rolirossi4819]

Yes, but I have very rare attacks, but when they come they are multiple in One day and no headache is following. I have noted that after ocular migraines my visual snow can get worse.

[@kapil171990]

Hi, Subham, where are you from. I m suffering from it since 2015. I am from Haryana.

[@kapil171990]

@@jsubham, are your symptoms progressive. My main issue is afterimages that make reading difficult.

[@bingbong6066]

Yeah same here. Had it for as long as i can remember paired with tinitus. Its like living in a tunnel of the loud high pitch and my vision having difficulty to adapt and the grain. Because i have had it for as long as i live, i can kinda move it to the background. But when i become self aware it can become too much. Whenever i have anxiety or need rest, I can't really find it because the sydrome is asking too much of me. At that point i sometimes feel like i am going mad knowing it will never stop.

[@J_BC]

mAAAAAn, when you said it’s like looking through a dirty window. That’s exactly how I described it to my friend. It’s comforting to know there are others who understand, that I’m not alone

[@VisualSnowInitiative]

Thanks for sharing Jordan.

[@yupyuppy9949]

Valium and lamotrigine clears it up for me, clonidine helps but causes dehydration

[@KevinEHV]

So that means VS is basically stress/anxiety related?

[@yupyuppy9949]

@@KevinEHV Lack of sleep plays a role regarding the VS. I don't get stressed mire than usual so I cant answer that.

[@americancitycountymagazine7925]

@@KevinEHV It's caused by an overaction of a certain area of the brain. Medications like those mentioned slow the action of those areas of the brain, and can therefore help with the snow.

[@martyfromnebraska1045]

If you're still around, I'm curious how bad yours was. Could you see it in broad daylight or just at night? Wondering if lamotrigine is even worth trying as I just developed this after a migraine 3 or 4 days ago.

[@felixnunez1]

Your story sounds a lot like mine, almost to the "T". Damn, so im not the only one who is experiencing this new stranger reality, so im not going crazy. Kinda feels reassuring to know I'm not alone but saddened knowing others are also having to go through this. Hope everyone whom is afflicted by this condition is healed or at the very least are able to have a better quality of life in spite of it.

[@RyanWilliams222]

Good description, and assessment of the current state of affairs! Thank you for working hard to be a voice for the VS community and raise money for research!

[@Fran547]

Hey, I've been born with VS and had it my entire life, didn't really bother me for the most part, besides, I always considered it to be the same for everyone. Recently started digging into it, and to my amazement I realized that when I look at someone's face (this only works in real life and up close) the VS goes away. As soon as i stop staring like a goof into the other persons face, it comes back.

[@VisualSnowInitiative]

Thanks Drogi for sharing with us, we appreciate it.

[@doyochii127]

I already had floaters before and had this seeing stars. I also had this Palinopsia and tinnitus. This is so stressful. This feels me scared so much. Watching this knowing that you're not alone. I wish I can turn back time. I also visit my opthalmologist and they said my eyes and good. Now, I need to do the eye test and I'm looking for neuro ophthalmologist.

[@VisualSnowInitiative]

Hello there. If you have yet to get a proper diagnosis, check out our resource directory for a list of medical professionals around the world that can help. Here's the link, best of luck. www.visualsnowinitiative.org/visual-snow-doctors-and-specialists/

[@eldiablo3124]

I LOVE THIS, people tell me what I have is rare but it's nice knowing it's not

[@timogreen6209]

Well I have the same problem and I also have a permanent migraine It's good to "meet" other people with the same issues

[@ndk4]

Timo Green nice to meet you too. How long have you had this? I will have my brain mri in a week

[@timogreen6209]

@@ndk4 My migraine begun 9,5 years ago. Visual snow... I don't know. At first I thought it's a migraine aura but it wasn't. I have "flyes" in my view since my childhood. I thought I can see bacteria xD I guess my VS started with 14 to16. I know that I couldn't see good at night since I was a teenager

[@bpopa27]

I tend to experience this similar visual effect whilst looking intensely at actual snow , up to a clear blue sky, or any other bright and dimly lit monochrome surface, but only if I'm purposely focusing on a point for about 5 seconds. It doesn't happen while doing normal daily activities.

[@disrespectful1y]

same here

[@sudeshbagawe8195]

Same here

[@specificsoup]

If I understand correctly, everyone has some sort of effect like this in those conditions or like looking at monochrome backgrounds. The syndrome is when it’s constant and then in the dark environments or looking at a bright clear sky it’s just more intense. That’s at least what I read when I first started researching visual snow. And when I try to explain it to people they tend to compare it to what they see in the dark.

[@VisualSnowInitiative]

Thanks for sharing!

[@josoffat7649]

I've had this my entire life. I thought it was what everybody saw. aural migraines, slight ringing in my ears 24/7.

[@VisualSnowInitiative]

Thanks for sharing Jo.💗🤍

[@leagueonly3163]

I remember seeing visual snow for the first time. Most people say they woke up and had it. I remember getting it while sitting at my bus stop to go home from school. All of a sudden things went weird. The gravel in front of me(pattern) I noticed was moving around and swirling and all of a sudden it was just snow. Later in the day I noticed eye floaters and a sparkles in the blue sky and on white backgrounds. 4 years and nothing has changed. I just wanted to note that when I was younger, I had a few episodes of Aura without migraine that would last from 15-60 minutes but nothing that I thought would lead to anything.

[@marcika]

I was in my late 20's, early 30's when I realized it is not normal what I see. I'm inherited from my mother, who has the same symptoms as I do. I'd consider my VS as a medium level one. I think there are WAY MORE people with this out there, whom known generally in the medial literature.

[@VisualSnowInitiative]

Thanks for sharing Marcika, we appreciate you doing so and we hope you're well.

[@Catasple]

I've started experiencing symptoms of this this past month. I was in the middle of my class when my vision started to be staticy. Since then I've experienced said static (black and white),an increase in floaters (and other entoptic phenomena that I am unsure how to even explain), and possibly mild light sensitivity. It's not very bad, my eyes just seem to ache when looking at screens or am in a bright room, but the sun seems far brighter than it used to be, and I will have a very mild headache (really only noticeable cause I'll clench my jaw). I also get afterimages far more often. Where as before it was practically none, I am more often than not getting afterimages when looking at screens, as well as regular objects, albeit less often. For instance if it's night and I stare at my fan on the ceiling, I'll see an afterimage. I think I'm mostly just scared my vision will get worse- I'm currently in art school to get a degree for illustration, something I can't really do without my eyes... though luckily It's currently manageable as none of my symptoms seem severe. Thank you for all the work that you've all done for the VSS community. I'm not sure it's what I have, but I don't know if I would have been able to even hear about this condition if not for your work.

[@VisualSnowInitiative]

Thank you for your constant support along the way! We are so glad you found our page. You are not alone 💗🤍 & We believe you.

[@DavisInDuval]

I don't know if I've had this my entire life or not. I feel like I have but only recently discovered it's something others don't have.

[@kingalex29339]

I remember in November 2021 I began to have intense brain fog, fatigue and memory loss and couldn't figure out why. From there it stayed with flashing and dancing blue light, but then one day in July 2022, suddenly the static and stars were overtaking my entire visual field and that's when I really knew something was wrong.

[@ashwinkv9635]

I started experiencing this after i got floor cleaner chemical in my eyes accidentally. At first i started getting eye floaters and now i can see the symptoms of visual snow.

[@VisualSnowInitiative]

Thank you for sharing your story ❤️

[@mw87675]

Sounds like my story. I had strep throat and a few weeks later covid. Before covid though I had the worst nerve pain...tingling, feeling set on fire from head to toe. After covid I ended up with migraines with aura that would last 30 minutes. I have black and clear eye floaters and I get visual snow in the shower or if I have anxiety. I also had positive ANA test for lupus and Sjögren's syndrome. I have vitiligo that started on my left side of my body. My floaters are mostly in my left eye. I also have pericarditis after covid. Must be something inflammatory that triggered this. Praying for answers everyday. 🙏

[@EmilyK1101]

i really have no idea if i have it or not. i only see what i think is visual snow sometimes like when i look at a blank surface for too long, but i also dont know if this is just what people see normally.

[@johnmejia1876]

I always told my parents I could see static on a TV 24/7 and waves in my vision but they never believed me and still don't. I was so obsessed with figuring out why I couldn't focus that I told my parents, maybe it could be this that or the other. Highschool was a nightmare, I gave up because I found it impossible to focus even for a couple seconds. The more I focus the more I see waves and static moving drawing my vision elsewhere.. I was on 3 or 4 different ADHD medications that either made me focus for a little while or gave me an unbearable migraine, or made me really dizzy. Its good to know what it is but disappointing to know there's nothing I can do with all the research I've done, I only eat healthy now in hopes that it'd fix the problem but never any relief

[@mosesnoble5236]

I have the same issue as you, my parents also never believed me, I think this is because it’s such a unknown condition, I think that the only people who know about this condition is people who have it and some eye specialist. Anyways I wish the best for you in living with this condition, we can’t let it hold us back in life.

[@VisualSnowInitiative]

Hey John, we hope that you are doing well and staying healthy. Let us know how you're doing. Stay strong!

[@ihatealex4015]

I’ve had visual snow my whole life

[@valeridimitrov5309]

Like 5 months ago I had panic attacks and I developed Tinnitus. Then I notice the VS too . From what I know about the Tinnitus thanks to “Liam Stop Tinnitus “ I think both are connected and it’s in the nervous system problem . He is treating the Tinnitus with diet ,fasting and more little but effective tips . I will start his program and see if the VS will get better as of my Tinnitus. I hope this was helpful for ppl with Tinnitus and VS . Btw doctor do not know everything. The book “the secret “ has a lot of tips too for positive thinking and curing things that doctors can’t . Ask believe and receive . I know it’s hard ,” it’s hard for me too” but we own it to ourselves don’t we ? Cheers and good luck !

[@tedwu9628]

Hey how are you doing with Liam's program? I am about to start it to with my tinntius

[@akshaythakur8500]

Are you ok now please reply bro

[@fizzypizzel6477]

I've had snow since i was born. I also have Nictophobia because i see dark human like figures in the dark which float around which scares me.

[@misscurvygirl_love]

Kidha Gray me too

[@erikamartinssf81]

I also had after traces in my vision when it first started. I had a migraine that triggered mine. I also got burning skin pain and ringing in the ears at the same time as my VS

[@starlightevenstar1827]

Ive had it since I was young but my migraines I think make it worse, I read its caused by overstimulation in a frontal part of the brain, I hate it :(

[@nataliegrace3545]

I don’t know how to get involved in giving a voice to visual snow but I do want to in some way

[@VisualSnowInitiative]

Thank you Natalie for sharing with us, we appreciate it. We'd love for you to get involved, please go to our Crowdfunding page to see how you can help. Please join our team and help us create awareness and fundraise for a cure. Thank you. donate.visualsnowinitiative.org/o/en/campaign/visualsnowinitiative

[@nataliegrace3545]

will be checking it out and getting involved!! thank you for getting back to me

[@AlexAlex-hs2sp]

I'm really annoyed with myself for finding out about visual snow because I used to just accept it as a natural part of my vision, and now I can't help but feel about it as something that's invading my visual space :/

[@tedwu9628]

Lol omg same

[@megmog4094]

Always had this and thought it was normal up until a few years ago. I have 20/20 vision but still can find it hard to see things at a distance due to the flickering dots. And cannot see in the dark at all.

[@darkussnull8034]

I have visual snow for a year now mine it's not that much snowy it's more mild but still it's terrifying ...it started out of nowhere and it was destroying and keep destroying my life I wish people would put more knowledge and effort to it.... it's very rare most people don't know that it exist I wish in the future people will invent a solution eventually.

[@bluepuddle407]

I have been referred to so many doctors who had no idea what was wrong with me. I’m 16 with a range of visual, hearing and motor function symptoms and the ophthalmologist was concerned and referred me to a neurologist. The neurologist did an MRI and just told me nothing was wrong with me, he just tapped my shoulder and told me I must have strength. He even told my mom directly to see a psychologist if she wanted to find out if I had psychological problems. But I know that it’s not a psychological problem, I know I’m not hallucinating I’m actually seeing it!

[@VisualSnowInitiative]

We feel you and understand what you are going through. Stay strong!

[@cngyt3005]

My visual snow has a focus on palinopsia. I first noticed it when i saw random colors in my field of vision which were actually afterimages of light which I did not know back then. When i looked into the sky i would see black dots quickly moving and circling each other and I thought I was going crazy. I've only noticed my symptoms for the past 1 year but I think I had it as a kid because I remember seeing a lot of floaters thinking they were bacteria in my eye. My actual snow is not that bad but it seems to be getting worse. Nowadays right as I wake up, my vision is really snowy and it gives me anxiety and depression because I don't want it to get worse. In the beginning I thought this entire thing was just migraine and light sensitivity issues and I did not know the actual term of it being visual snow. I have migraines very frequently and the right side of my head constantly pounds on my head 24/7. I feel it during the day and before I sleep. I really hate after images and trailing because it makes me feel crazy. I always end up focusing on something and my eyes get locked on to it but I wish I could just move them freely without visual disturbances. I haven't done drugs and i'm not on any medication for it. I haven't even seen a doctor for it. If anyone can relate to me feel free to reply and have a discussion about anything related to this.

[@emre12ang]

Have your symptoms progressively worsened?

[@lancetschirhart7676]

How are you, how have you been?

[@VisualSnowInitiative]

Thanks for sharing your experience with VSS. We're glad you found our page, you are not alone!💗🤍

[@sonnenblume3606]

So glad that I am not alone

[@jarebak5579]

Its me Sophie how’d you get it sophie

[@sonnenblume3606]

I‘ ve always has the static but over the last couple of years I developed more symptoms like Depersonalisation, paliopsia and more.. So I don’t know how 🤷🏼‍♀️

[@jarebak5579]

Its me Sophie really it just happened ? mine got triggered by lsd

[@sonnenblume3606]

Jare Bak No trigger i guess

[@kellypawspa]

Has anyone experienced their depth perception or vision quality fluctuate often and in extremes without any noticable triggers or possible explaination for this from the eye doc?

[@rfc20]

Mine has been making feel like I am near sighted lately. Have had it since I was 21 and after being on antidepressants for a year or two it seemed to have gone away and out of the blue at 28 it came back a couple months ago with a vengeance and now I feel near sighted quite a bit

[@RaisingJackal]

Until i found these videos. I didn't know i had a problem that was real. Always felt it was just in my head. Or i had a super power as a child 😂. The fuzz was my vail to the unknown world in the dark. Thank you for the information and willingness to be open.

[@VisualSnowInitiative]

Hi there! We are so glad you found our page . You are not alone 💗🤍 so many people are unaware of VSS

[@hiphopper4801]

I love u.... Sierra

[@EditsByLyra]

I see the static, I'm extremely sensitive to light, I know those things are part of VSS. There's also that one symptom... if a car speed past me and the light from the sun hits it a certain way, the flash it creates stays in my vision for some time + it forms a trail of light following the direction the car was going. Is this part of VSS? Does it have a name?

[@rachelg1372]

yes

[@mosesnoble5236]

I’ve the same symptoms as you, I stand with you, don’t let it get you down.

[@VisualSnowInitiative]

Hello there- I hope that you have received answers to your questions. If you are still seeking answers, I'd suggest to join a Facebook support group and ask others in the group. Here are the links to a couple good groups. facebook.com/groups/VisualSnowInitiativeDiscussionGroup & facebook.com/groups/visualsnowsupport.

[@traceywindle962]

Oh my, this is the first time I’ve actually found a Chanel that describes my condition. I didn’t even think it had a name. I have it 24/7 but I have it extremely bad at night, it’s blue/ red very erratic static and there’s sparkles everywhere. But the thing is, I thought I would try and record what I was seeing with my iPad and low and behold...it worked, although you have to be in a dark room to see the recording exactly as I see it. This confuses me greatly because it’s actually there in reality not in our head. Hmmmm

[@VisualSnowInitiative]

Thanks for sharing Tracey, it's real and it has a name. I'm glad that you found VSI, please go to our website for more information on VS, www.visualsnowintiative.org. Take care...

[@crystalelizondo311]

I’ve had visual snow since I was a child, it’s quite annoying and at times makes my anxiety go up. I get floaters, stars, trails, after images, some days are worse than others.

[@io8259]

Crystal Elizondo my god same! According to a couple of opticians and an eye specialist my eyes are structurally fine. I’ve had no answers so far, anxiety is through the window. I’ve had visual snow all my life but all the flashes, floaters, afterimages, stars (blue/white/blacc) scare me

[@crystalelizondo311]

Ryan Price I have recently had my eyes checked and they said they were healthy, I have also had two CT scans done months apart and they said everything was good. My afterimages is what bothers me the most and makes my anxiety act up because there’s days where it’s not as bad and days where I just want to sleep so I don’t have to see and deal with after images

[@reginafrazier631]

I just got visual snow a month ago I feel alone. Also my anexity is awful every day is a fight I also have keritaconus my cornea are damaged. I fear blindness or seizures or stroke since I ts dealing with the brain does anyone have ringing in the ear I need a friend/friends

[@crystalelizondo311]

Regina Frazier anxiety causes a lot of symptoms, you may be experiencing the ringing from your anxiety, my ears tend to ring a lot

[@io8259]

Crystal Elizondo the afterimages are weird. You could be sat in a dark room and still get one which doesn’t make sense considering afterimages are usually caused by looking at something bright. Waking up with a group of stars or dots or a patch of black or white can be quite weird as well. The anxiety I have because of it makes me real worn and tired but I try to find acceptance with it all. Some days are definitely better than others

[@PaulHanafinMusic]

What a lovely girl - I have suffered similar & just learning about it

[@theepitomemedia1573]

I had it my entire life....I remember being 4 and 5 and I would use my finger to draw things in the “snow”. The images I would make would last for about 5 secs. My mom and sister would ask “what are you doing?” And I would explain. They thought it was just my imagination ( for whatever reason I’m not able to do this anymore), but I got older 16 or 17 and more information became available online. I was finally able to show my mom I wasn’t crazy lol.

[@Wendy63Lorraine]

One day probably 6 months ago, I spent all day on my phone none-stop trying to book an Airbnb for Christmas. I kept getting frustrated but was determined to find a place by the ocean. I failed. Combination of stress and staring into a little screen for over 12 hours straight. The next day I woke up and said wow, looks at those atoms in the walls. I had visual snow and got anxiety over it. I Dont drink, never done any drugs or take any medication, except for thyroid. I'm also a graphic designer, so a lot of screen time. I try to do less now. Anyway, at worst it's a bit bothersome, and now I'm enjoying my hobbies, I Dont even think about it. It's like tinnitus, I have that for 5 years. Doesn't bother me now. Funny thing is, my sister in law and two nieces have visual snow as well and do a hell of a lot of screentime. Both TV and phone. They thought it was normal. Damn, no it's not. The cure is to find things that are joyous in life and you won't even notice it so much. Life's a blessing. I'm getting off my phone and outside to nature. 🌈🌈

[@VisualSnowInitiative]

Thanks for sharing your VSS experience Wendy, we're glad to hear that you have found ways to manager and deal with your symptoms. Keep it up, hope you're continuing to do well.

[@americancitycountymagazine7925]

I have visual snow, and it was caused by intervenous administration of the mycin class of antibiotics. Prior to the antibiotics, I did not have snow. I have now had it for 5 years.

[@emre12ang]

Have your symptoms progressively worsened?

[@VisualSnowInitiative]

Thanks for sharing your experience with VSS. We're glad you found our page, you are not alone!💗🤍

[@jazzcabbage9370]

I've had visual snow my whole life, i'm autistic and apparently its more common for us to have VS

[@impassioned113]

All this time I felt as if a black haze covered my vision.. and it made me think that my vision was.. 'fake'. Its kind of weird to describe this but I've had this thing for so long and I can't even imagine how it would be to look at the sky again without seeing white snow-like particles floating around with constant dark blue static accompanying them. I've also had several instances of derealization and now I found out that this visual snow may have been the cause. Anyway.. at least I don't fell lonely anymore. :)

[@VisualSnowInitiative]

We are so glad you found our KZbin channel, you are not alone. 💗🤍

[@safeplace2118]

I’m wondering if I have visual snow because I have tinnitus and when I look at a white wall I have the feeling of visual snow but it’s pretty light, these day I’m behind a screen a lot so I’m not sure, maybe my eyes are just tired. I need to check with a ophthalmologist (sorry for my English)

[@VisualSnowInitiative]

Thanks for sharing, your English is just fine. Have you ever been diagnosed with Visual Snow? We'd like to hear from you, let us know. 💗

[@garrettcoleverse]

I just developed this last week

[@allbaedoe]

How are u doing now?

[@garrettcoleverse]

@@allbaedoe better, I think I've gotten more used to it

[@wafamochten846]

@@garrettcoleverse and now? What's the cause?

[@garrettcoleverse]

I have no idea, last June I think I got sick and started to notice what I thought was static in my vision. It started when I was in a dimly lit room. It carried on for months after that and now comes and goes

[@wafamochten846]

@@garrettcoleverse good I have an eye disease called mewds But I have some symptoms of vs I don't know if it's just mewds or the two?

[@thecarrasius]

I hear you, I've got it too, been on a similar journey.

[@VisualSnowInitiative]

Thanks for sharing your experience with VSS. We are so glad you found our page.

[@WillGrs]

im 16 started getting it a few months ago but it's gotten really bad recently to the point where its hard to read. Sucks knowing it can't be fixed with glasses.

[@VisualSnowInitiative]

We feel your frustration, thanks for sharing.

[@RolandodellaValle]

I thought to be the onlyone in the world having this. It is so good to know now to be not alone. I know today that my VS is strongly related to my Vestibular Migraine. Migraine auras are the cause of my VS and worsened my symptoms. Science separate VS from migraine aura, but I see my VS as a kind of persistent migraine aura. I wonder if there is other people with VS who never experienced migraines?

[@Heed2070]

Not sure, but i have tinnitus as well with migraines with auras which oddly doesn't always end up with a painful headache after the aura.

[@lancetschirhart7676]

The list of symptoms I have developed over the past year is impressive, includes all the visual stuff, stuff I'll never remember, twitching, swelling, intermittent blindness, intermittent paralysis, hyperacusis and photophobia, tinnitus and the rest of the VSS trappings as well. However, I've never had a migraine in my life.

[@VisualSnowInitiative]

You are not alone and we are always here for support and resources. Hang in there Roland! You are strong and a warrior💙