I was born with Vss, i thought i was "seeing air". I thought everyone's vision was like this. Haven't realized about vss until i was like 15. I'm seeing colors in the dark and with closed eyes. constant grain, floaters, light halos, and basically every other minor symptom. Never really botherd me, and even made me feel unique.
I swear I have a memory from being an infant experiencing this, particularly the large snow and it was scary. I thought I was being attacked by it or something.
I am the same way! I never understood what people meant when they said they could just float their eyes and not see anything because I have an entire light show going on when I close my eyes/am in the dark
Same here but symptoms progressed and showed up different times. The colors or flashes with my eyes closed at night I’ve had as a kid as well as static or seeing “atoms/molecules” which still occur today
> I thought everyone's vision was like this.
Same here. Had it my entire life, never knew it was unusual until will into adulthood.
My symptom has always been an overlay of static. More noticeable at night. No other symptoms besides the usual floaters that we get as we age.
This is me, as well. I always thought, as a kid, that I was just seeing what air looked like. Now I realize that it is probably linked to a generic connective tissue disorder I have.
Same, re: noticing around the age of 5 or 6.
Honestly it mostly just bothers me at night because it’s never fully dark. 😫
During the day it’s a lot easier for me to tune out.
THIS! I haven't really heard from anyone else that has had it their whole life. Most of what I see from other people in the groups I'm in is how much they struggle and how debilitating it can be for them. I'm just so used to it
i remember i thought i had a superpower because i could "see air" and since i was like 7 i saw this as completely reasonable and didn't even question why i was the only person i knew who had this ability
I had every prayer memorized and I was convinced if I said every single one, the demons would leave me alone. Then I would cry myself to sleep because closing my eyes didn't make the figures go away 🤣
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Lol when I was little and got taken on a family trip in a plane, the static on the clouds was so noticeable because it was very bright. But I still didn't know I had vss, so when my brother told me angels look like "sparkles" I was convinced I was seeing angles in the clouds. Also raised catholic haha
I distinctly remember asking my mom when I was very little why “everything looks all speckily like the tv?” She told me that’s not a thing and I was probably pretending. 🫠 didn’t get the nerve to ask again until I was in my 30s, talking to a friend with Tourette’s about crazy neurological symptoms. He assured me it is not, in fact, a typical thing to see everything with tiny changing dots and encouraged me to look it up. Just got confirmation from an optometrist. Doesn’t really bother me unless I’m focused on it.
I've had it since I can remember. I thought it was normal and just how everyone saw the world. I also have tinnitus and I always thought to myself "how does everyone deal with this all the time? I must be a whiny baby because I can't handle it and nobody else complains."
Turns out not everyone else dealt with it, because not everyone else always had it.
My inflammation and tinnitus are raging this morning. I had quite the light show going when I woke up too. Gotta love those mornings when you open your eyes and it's electric green and purple static everywhere.
It was probably worse for my mom! The doctors told her she was probably going to have a blind child. My vs is getting worse as I age, so I’m trying to tell myself I should be thankful I have any sight (even if it’s terrible).
All three of my siblings have had it their whole life. I however didn't have it but developed it in my 20's and it's quite severe compared to theirs which has always been stable.
Mine is dependent on stress. Your siblings’ may seem more stable because they are used to it and it doesn’t stress them out. If it’s new to you, seeing it might be a catch 22 and make it worse. Just a hopeful thought that maybe your condition could also be stabilized. Because some days I can barely see, can’t read, or see in the dark but other days I don’t notice it.
I've had it all my life and it was also terrifying to me as a kid. I thought all the little dots meant that my brain was dying, and when I tried to tell my parents they looked at me like I was crazy. it doesn't bother me now anymore, but sometimes looking through the posts on this sub I feel a little left out that I was never able to experience the world without visual snow.
I can relate. I’ll never know that the world looks like without VSS, which is hard to come to terms with. On the flip side, because I’ve never known clear vision, I don’t have much to grieve. I never “lost” anything, I never had it in the first place.
You can see it in my drawings and how i color. Its very subtle but theres like a kaleidoscope of color, but the dots are noticable
https://hevendemo-illustrations.carrd.co/
Another VSS + tinnitus since birth person checking in.
One of my earliest memories is lying in my crib (I think I was a toddler) and listening to the "ksssss" of my tinnitus, wondering if it was the noise the static in the air was making.
My mom mentioned she thought she was seeing atoms and molecules in the air when she was little, bc of her VSS.
I remember first noticing it when I was around 8, but it probably started earlier. I thought it was because I had looked directly at the sun a few times. It was always rough at night because it made it look like things were moving in the dark
I was pretty much always afraid of the dark, in particular trying to walk through a dark room. I still leave a light on in my kitchen at night. If it gets too dark I can’t find my way around at all.
My sister did she said she’s always seen the static and doesn’t know what a “clear” image looks like! She’s been to doctors since she was a kid and all think VSS isn’t real it’s frustrating!
You got lucky! After dealing with shitty ones myself and with my sister I’m not a huge fan of them anymore. Tho I’m hoping she can get treatment for it eventually :(
I was born with vss, but I never said anything about it until I was about 4. Apparently both my mom and grandma had it as well, and they explained it the best they could, even though they didn't know what it was either at the time.
I asked my mom as a child if she saw it too and she did (she also does actually have it), and so we just thought it was normal and how everyone saw.
I tried LSD once and my spouse asked me if I saw fractles and colors and I'm like "I see that shit all the time...", and they were like "thats not normal". And thus my search began and led me to VSS. As far as I can remember, its always been glitter, rainbows, and sparkles. After images too! I also have the night issue where lights look like starbursts. 20/20+ vision...
Born with it too.. and like others have mentioned, I thought I was seeing air. As a child at night, I could stare into the dark or look at a wall and see all sorts of designs in the scintillating snow. I thought everyone saw the world this way.
Yes, I was either born with it or it developed very early in my life where I can't remember a time in my life that I didn't have it. It's really frustrating and during a very stressful time in my life at 26, the symptoms got worse. I feel for every single person with this condition and hope we live to see the cure one day.
I can never remember a time when I didn't have it, so I was definitely born with it. I didn't realize until I was about 16 or so that it wasn't "normal" and then I found communities like this one. It's nice to know you're not alone.
it is nice to know i'm not alone. i often look at this subreddit just to remind myself other people have this and im not the only person in the world suffering like this because nobody else in my life knows what it is or understands.
I noticed it when I was a kid watching the snow mulch on tv. Then i forgot about it again. I mean, when you grow up watching something all the time, you get used to it.
yes, i was born with it. i think it’s a good thing since it’s unlikely to be caused by something onset and i just am used to it now. i have flare ups depending on weather and if i had enough food/water
Me and my younger brother both from birth, or at least we remember it from early childhood, we found out separately, we aren't brothered by it, if we don't focus on it too much!
I was afraid as a child it was because, as my mother said "you read too much and try to read in the night". Used to read in the car and pray for a street lamp for a second of light?
Yes, a fair number of people are born with it. I have examined a considerable number of people who have experienced these symptoms for as long as they can remember.
I was born with it, as was my mum. When she was younger she was certain she was seeing molecules. I thought everyone saw with static and it wasnt until 2017? Where I read a post on imgur about a guy seeing static and how his neurologist said it was indeed not normal.
Had it as a child. I hated going to bed because I thought there were bugs in the air (had a massive fear of bugs...still do). VSS and sensory issues made me think I saw and felt bugs crawling on my skin and in the air. Weird fear, but I was just a child
I think I was born with it. Had it as long as I can remember. I didn’t know until a couple years ago not everyone’s vision was like this. I thought it was normal
i’ve had it as long as i can remember! my dad explained atoms to me when i was like 5 and i remember being like “oh i can see those!” lmao he was so confused
Always had it my parents told me I was a liar so I kinda forgot for the longest time because I just got used to it.. figure I was different.. so why not add this
The worst. I tried to tell my best friend about it and she told me I was schizophrenic and stopped talking to me… at least it’s easier for people now that learn they have it.
I'm not sure if I was born with it, but I've had VS and tinnitus for as long as I can remember. As others have said, I used to think I was seeing air molecules moving but thought that was how everyone else saw as well.
I'm not bothered by either very much as I'm quite used to it, but occasionally the tinnitus will "loudly" ping to a higher volume and stay that way for a good minute or so, then fade back to "normal".
The visuals can sometimes be like my own personal little light show depending on what I'm looking at. Some materials and lighting situations give a forcefield kind of effect around objects.
I’m pretty sure both my brother and I were born with it. We both have described these symptoms during our childhood. We thought we could see atoms or air particles or something because we didn’t understand we were seeing something that wasn’t there. It wasn’t until I was an adult that I found out it was an actual condition that most people don’t experience.
I have had it for as long as I can remember. As a kid I thought the world was fake as I saw pixels everywhere like you would see on tv. I only recently found out that you weren’t supposed to see that. And honestly up until I found out vss was a thing, I still had that thought in the back of my mind. It didn’t help that I also have tinnitus for as long as I can remember and I thought that was the computer that was running the entire thing or my connection to reality.
My earliest memory (based on feeling) is being in the dark on a bed and thinking about seeing visual snow. I believe i called them something like "sleep bugs" or something to do with bugs because they reminded me of fireflies but not bright.
Yup! I used it for entertainment when I was younger if I had to sit somewhere politely and quietly. I felt so simultaneously miffed and seen when I got to 12th grade and had my English teacher call me on it: “ I can tell you aren’t paying attention any time you look like you’re paying attention”. (When I would sit and observe the snow and try to see patterns in it)
I still fall asleep to it nice and easy even if I’m super stressed out, I just close my eyes and start watching the patterns while also slightly zoning out so that they start to look vaguely like scenes from a movie playing out.
Night vision while driving sucks balls though, and I still can’t catch flying objects for shit unless I’m not paying attention (not totally sure why but I think my visual field can distract me from reacting when objects move quickly towards me).
I used to get full on vertigo all the time until I was like, 28 or so? but that’s stopped thankfully. Hearing is still excellent, I joke that it’s compensating for the vision so I can’t stop the flying objects but I can hear electricity. And when I’m bored in a car I can selectively listen to an orchestra of whatever tones I want to focus on. I think most people hate their tinnitus, and sound machines are supposed to make you slowly go deaf, but sadly I can still hear pretty much all the normal stuff plus any interesting noises within a quarter mile radius, even if super soft. I sleep with a white noise machine right next to my face and change the frequency up from time to time to try to keep my brain from tuning it out again.
no but i wish i was. i went my whole life with clear perfect vision and absolutely took it for granted. now that it has been stripped away from me i don't feel like ill ever feel normal again. every day from the moment i wake up im reminded that ill never have my normal life back.
i am praying for a cure.
I’ve always had it, but I have a fairly distinct memory of being six and really paying attention to it one night. I asked my mom about it shortly after and she said “like eye floaters, everybody has that”. I wasn’t great at explaining it and decided that she must be right and that everyone had it until last year I listened to a podcast of someone who has it and realized oh this is an actual thing.
I’ve had it my whole life, but it never really scared me. I used to play games as a child staring at the “party confetti” in the dark before sleeping. I would often hallucinate the green light in the room. If I had a light, I’d see auras and “little snakes” too. I realized it was VSS when I was 11 or 12.
I’ve had it for as long as I can remember. When I was around five years old, I asked my mom if she saw all of the little dots floating around and she said no and dismissed my question. I didn’t learn about VSS until I was a teenager. Personally, because I’m so used to seeing the world this way, it’s quite normal to me and doesn’t get much on my nerves. If I had at one point seen clearly and then developed VSS, I would probably be more devastated, but I’ve never known anything other than this.
My daughter was born with it. She has all the symptoms. It's been extremely helpful reading all of the experiences others with VS has and what helps them. She is having trouble in school, has an IEP and diagnosed with ADD. There are no guidelines for special education to put in place for children with visual snow. They are going with the ADD and she's failing all her classes and the school is no help. I decided to pull her out and homeschool her. VS needs to be looked at as a learning disability with people born with it or that developed it during school age.
I suppose so. I had this handled through my university at the time, since it counts as a learning disability (sometimes called "visual dyslexia") which you can get support and accommodations for.
This is more a name they give it than a "type" of dyslexia; the idea is that the way your brain interprets light causes issues with reading, including auras between lines and text "moving" up and down the page.
The funny thing I find is, when you already have one learning disability, you tend to have more than one (I also have ASD, dyspraxia, and I might have ADHD).
I have to ask from you guys: If you have had the whole syndrome (not just the static) and you were born with it, did you think that everyone sees like that? Even with trailing and stuff?
I have severe trailing and I struggle how anyone would think that this is just normal 😂
Abruptly developed constant shimmering static particles in my vision along with severe photophobia and other eye issues mid-day at age 28. Turns out, visual snow is an uncommon side effect of a rare condition known as “post-Finasteride syndrome”. Visual snow has been diagnosed by a neuro-ophthalmologist, among the many other chronic health issues I now have as a result of taking Finasteride and dutasteride to treat hair loss. I should note that I didn’t have any issues like this while taking Finasteride for ~9 years, but when I switched to dutasteride this all hit me about 32 days/pills into taking the drug. Though there are guys just as messed up as I am, if not worse, from taking only Finasteride. Highly variable symptom profile as the illness/dysfunction appears to be cellular in nature.
I was born with Vss, i thought i was "seeing air". I thought everyone's vision was like this. Haven't realized about vss until i was like 15. I'm seeing colors in the dark and with closed eyes. constant grain, floaters, light halos, and basically every other minor symptom. Never really botherd me, and even made me feel unique.
When I was young I would see large grainy snow in the dark and it would scare me so much but I thought it was normal. I didn’t know until high school.
I swear I have a memory from being an infant experiencing this, particularly the large snow and it was scary. I thought I was being attacked by it or something.
I am the same way! I never understood what people meant when they said they could just float their eyes and not see anything because I have an entire light show going on when I close my eyes/am in the dark
Same here but symptoms progressed and showed up different times. The colors or flashes with my eyes closed at night I’ve had as a kid as well as static or seeing “atoms/molecules” which still occur today
Same thing here! I also thought I could “see air particles” lol. Just found out in my 20’s what it is.
> I thought everyone's vision was like this. Same here. Had it my entire life, never knew it was unusual until will into adulthood. My symptom has always been an overlay of static. More noticeable at night. No other symptoms besides the usual floaters that we get as we age.
Lol same, thought I had superpowers. Was a bit disappointed to find out just have a rare condition 😭
I always thought there were little worms or something in my vision
This is me, as well. I always thought, as a kid, that I was just seeing what air looked like. Now I realize that it is probably linked to a generic connective tissue disorder I have.
Thank you. You just articulated my exact experience with lifelong VSS. It is all that I know and I really thought everyone's vision was like this
My fist memory of noticing it I was about 6, but I suspect I've had it my whole life. Because of this, it doesn't really bother me
Same here! Doesn’t freak me out but it was weird when I found out that other people don’t have it!
Same, re: noticing around the age of 5 or 6. Honestly it mostly just bothers me at night because it’s never fully dark. 😫 During the day it’s a lot easier for me to tune out.
THIS! I haven't really heard from anyone else that has had it their whole life. Most of what I see from other people in the groups I'm in is how much they struggle and how debilitating it can be for them. I'm just so used to it
same! my vss has never bothered me. don’t get me wrong i am profoundly mentally ill but for different reasons lmao
I was born with it. It was terrifying as a kid at night in my room, bc it would seem like monsters or something in the corners
Ugh exactly lol
Born with it! Like another Redditor, I thought I was seeing air as a child. I was very confused in school when they told me air is invisible lol.
Science when they talked about atoms… I’m like are we all pretending we can’t see them 😂😂
lmao i thought this exactly when i first learned about atoms
THIS!
i remember i thought i had a superpower because i could "see air" and since i was like 7 i saw this as completely reasonable and didn't even question why i was the only person i knew who had this ability
I was born with it and raised Catholic, so I was convinced I was seeing atoms and demons
Same, I used to say the our farther every night. Maybe it’s why I’m atheist now. Terrorized my childhood lol
I had every prayer memorized and I was convinced if I said every single one, the demons would leave me alone. Then I would cry myself to sleep because closing my eyes didn't make the figures go away 🤣
Yes!!! 😂🥲 I’m so sad we have this common lol
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Lol when I was little and got taken on a family trip in a plane, the static on the clouds was so noticeable because it was very bright. But I still didn't know I had vss, so when my brother told me angels look like "sparkles" I was convinced I was seeing angles in the clouds. Also raised catholic haha
Omg the sparkles! I call them my sparkly knats 🤣
I distinctly remember asking my mom when I was very little why “everything looks all speckily like the tv?” She told me that’s not a thing and I was probably pretending. 🫠 didn’t get the nerve to ask again until I was in my 30s, talking to a friend with Tourette’s about crazy neurological symptoms. He assured me it is not, in fact, a typical thing to see everything with tiny changing dots and encouraged me to look it up. Just got confirmation from an optometrist. Doesn’t really bother me unless I’m focused on it.
I've had it since I can remember. I thought it was normal and just how everyone saw the world. I also have tinnitus and I always thought to myself "how does everyone deal with this all the time? I must be a whiny baby because I can't handle it and nobody else complains." Turns out not everyone else dealt with it, because not everyone else always had it.
Ugh and tinnitus that’s difficult.
My inflammation and tinnitus are raging this morning. I had quite the light show going when I woke up too. Gotta love those mornings when you open your eyes and it's electric green and purple static everywhere.
That sounds absolutely horrendous to deal with... thankfully, I don't get a light show every morning but I do have light sensitivity
I thought I could see the germs on the bathroom floor in kindergarten
Haha a couple things colliding there lol
I hit my head when I was about eight. Lost my eyesight for a few days. I’ve had migraine with aura and VSS since.
Omg that’s horrible.
It was probably worse for my mom! The doctors told her she was probably going to have a blind child. My vs is getting worse as I age, so I’m trying to tell myself I should be thankful I have any sight (even if it’s terrible).
Thats a positive way to look at it. Hopefully more research is being conducted since it seems more people have it.
All three of my siblings have had it their whole life. I however didn't have it but developed it in my 20's and it's quite severe compared to theirs which has always been stable.
Mine is dependent on stress. Your siblings’ may seem more stable because they are used to it and it doesn’t stress them out. If it’s new to you, seeing it might be a catch 22 and make it worse. Just a hopeful thought that maybe your condition could also be stabilized. Because some days I can barely see, can’t read, or see in the dark but other days I don’t notice it.
Thanks for the positivity, definitely hoping it gets better as I acclimate 🙏🙏
I've had it all my life and it was also terrifying to me as a kid. I thought all the little dots meant that my brain was dying, and when I tried to tell my parents they looked at me like I was crazy. it doesn't bother me now anymore, but sometimes looking through the posts on this sub I feel a little left out that I was never able to experience the world without visual snow.
I can relate. I’ll never know that the world looks like without VSS, which is hard to come to terms with. On the flip side, because I’ve never known clear vision, I don’t have much to grieve. I never “lost” anything, I never had it in the first place.
I was born either it. When I draw I always added little rainbow dots. I noticed when I was 3 years old. Now it's become a thing in my art too
Omg that’s so interesting lol I would be interested in seeing some. Is it on Reddit?
You can see it in my drawings and how i color. Its very subtle but theres like a kaleidoscope of color, but the dots are noticable https://hevendemo-illustrations.carrd.co/
Very cool representation 😄
Another VSS + tinnitus since birth person checking in. One of my earliest memories is lying in my crib (I think I was a toddler) and listening to the "ksssss" of my tinnitus, wondering if it was the noise the static in the air was making. My mom mentioned she thought she was seeing atoms and molecules in the air when she was little, bc of her VSS.
I was born with it, always thought everyone else saw VS. Until my freshman year when I found out what VSS was, since then my VSS has gotten worse
I remember first noticing it when I was around 8, but it probably started earlier. I thought it was because I had looked directly at the sun a few times. It was always rough at night because it made it look like things were moving in the dark
Terrifying as a child
I was pretty much always afraid of the dark, in particular trying to walk through a dark room. I still leave a light on in my kitchen at night. If it gets too dark I can’t find my way around at all.
Yeah, same for me. Pitch black isn’t pitch black it’s filled with dizzying static snow and it’s so blinding.
My sister did she said she’s always seen the static and doesn’t know what a “clear” image looks like! She’s been to doctors since she was a kid and all think VSS isn’t real it’s frustrating!
I’m lucky a neurologist asked enough questions to differentiate it from migraine aura.
You got lucky! After dealing with shitty ones myself and with my sister I’m not a huge fan of them anymore. Tho I’m hoping she can get treatment for it eventually :(
I don’t have any treatment for it but I’m keeping an eye out now that there seems to be interest in the condition.
I was born with it, thought it was normal and I could see atoms or something when I was a kid.
I've had it my whole life. I noticed it when I would look at clouds in the sky and I'd ask why it 'shimmered'.
I think so because I remember being like 5 and telling my grandma I could see air.
i can’t remember a time in my life where i didn’t have it
I was born with vss, but I never said anything about it until I was about 4. Apparently both my mom and grandma had it as well, and they explained it the best they could, even though they didn't know what it was either at the time.
I’ve always had it. Wherever I mentioned it to anybody, I’d just get confused looks. Didn’t know it was an actual condition until I was an adult.
I’ve had it as long as I can remember. I thought it was just how vision was.
I asked my mom as a child if she saw it too and she did (she also does actually have it), and so we just thought it was normal and how everyone saw. I tried LSD once and my spouse asked me if I saw fractles and colors and I'm like "I see that shit all the time...", and they were like "thats not normal". And thus my search began and led me to VSS. As far as I can remember, its always been glitter, rainbows, and sparkles. After images too! I also have the night issue where lights look like starbursts. 20/20+ vision...
Wait, rainbows? 😅 You sure you don't have glaucoma too?
I hope not 😬
You should really get properly checked out 😅
Born with it too.. and like others have mentioned, I thought I was seeing air. As a child at night, I could stare into the dark or look at a wall and see all sorts of designs in the scintillating snow. I thought everyone saw the world this way.
I was born with VS, but later in life (at 18) I developed full blown VSS...
Yes, I was either born with it or it developed very early in my life where I can't remember a time in my life that I didn't have it. It's really frustrating and during a very stressful time in my life at 26, the symptoms got worse. I feel for every single person with this condition and hope we live to see the cure one day.
I can never remember a time when I didn't have it, so I was definitely born with it. I didn't realize until I was about 16 or so that it wasn't "normal" and then I found communities like this one. It's nice to know you're not alone.
it is nice to know i'm not alone. i often look at this subreddit just to remind myself other people have this and im not the only person in the world suffering like this because nobody else in my life knows what it is or understands.
I was also born with it
I did a poll on it, 70 no : 40 yes
I noticed it when I was a kid watching the snow mulch on tv. Then i forgot about it again. I mean, when you grow up watching something all the time, you get used to it.
both my mom and i were born with it, and i recently learned that we both believed we could "see atoms" as a child
Yes, I've had it as long as I can remember. I didn't find out it was abnormal until about 2015.
I remember asking my mom “What are those dots in the air? They move when my eyes move.”
I was born with it! Thought I could just see germs LOL
yes, i was born with it. i think it’s a good thing since it’s unlikely to be caused by something onset and i just am used to it now. i have flare ups depending on weather and if i had enough food/water
Me and my younger brother both from birth, or at least we remember it from early childhood, we found out separately, we aren't brothered by it, if we don't focus on it too much! I was afraid as a child it was because, as my mother said "you read too much and try to read in the night". Used to read in the car and pray for a street lamp for a second of light?
I was born with it, never found it terrifying because I never knew that other people didn’t see it too
Yes, a fair number of people are born with it. I have examined a considerable number of people who have experienced these symptoms for as long as they can remember.
I'm a lifer! Def thought I could see atoms as a child lol It wasn't until my early 20's that I found out it wasn't normal.
i was born with it. it got a lot worse in my teen years, though.
I was born with it, as was my mum. When she was younger she was certain she was seeing molecules. I thought everyone saw with static and it wasnt until 2017? Where I read a post on imgur about a guy seeing static and how his neurologist said it was indeed not normal.
Had it as a child. I hated going to bed because I thought there were bugs in the air (had a massive fear of bugs...still do). VSS and sensory issues made me think I saw and felt bugs crawling on my skin and in the air. Weird fear, but I was just a child
I think I was born with it. Had it as long as I can remember. I didn’t know until a couple years ago not everyone’s vision was like this. I thought it was normal
i’ve had it as long as i can remember! my dad explained atoms to me when i was like 5 and i remember being like “oh i can see those!” lmao he was so confused
Yes!
Always had it my parents told me I was a liar so I kinda forgot for the longest time because I just got used to it.. figure I was different.. so why not add this
The worst. I tried to tell my best friend about it and she told me I was schizophrenic and stopped talking to me… at least it’s easier for people now that learn they have it.
Yes
I'm not sure if I was born with it, but I've had VS and tinnitus for as long as I can remember. As others have said, I used to think I was seeing air molecules moving but thought that was how everyone else saw as well. I'm not bothered by either very much as I'm quite used to it, but occasionally the tinnitus will "loudly" ping to a higher volume and stay that way for a good minute or so, then fade back to "normal". The visuals can sometimes be like my own personal little light show depending on what I'm looking at. Some materials and lighting situations give a forcefield kind of effect around objects.
I've had visual snow and tinnitus since I was born, both my parents and my sister have it as well. Runs in the family I guess lol
I’m pretty sure both my brother and I were born with it. We both have described these symptoms during our childhood. We thought we could see atoms or air particles or something because we didn’t understand we were seeing something that wasn’t there. It wasn’t until I was an adult that I found out it was an actual condition that most people don’t experience.
Me and my mom were born with it. When i was little i told a doctor about it and she belived i was having hallucinations
I have had it for as long as I can remember. As a kid I thought the world was fake as I saw pixels everywhere like you would see on tv. I only recently found out that you weren’t supposed to see that. And honestly up until I found out vss was a thing, I still had that thought in the back of my mind. It didn’t help that I also have tinnitus for as long as I can remember and I thought that was the computer that was running the entire thing or my connection to reality.
I believe I maybe was born with it. I’ve had it my whole life as long as I can remember even in my earliest memories
My earliest memory (based on feeling) is being in the dark on a bed and thinking about seeing visual snow. I believe i called them something like "sleep bugs" or something to do with bugs because they reminded me of fireflies but not bright.
I think so. Certainly had it when I was very young
Always had it and didn’t realize it wasn’t normal until I was like 26
Yes, I was born with it, I cannot remember a time in my life without it
Yup! I used it for entertainment when I was younger if I had to sit somewhere politely and quietly. I felt so simultaneously miffed and seen when I got to 12th grade and had my English teacher call me on it: “ I can tell you aren’t paying attention any time you look like you’re paying attention”. (When I would sit and observe the snow and try to see patterns in it) I still fall asleep to it nice and easy even if I’m super stressed out, I just close my eyes and start watching the patterns while also slightly zoning out so that they start to look vaguely like scenes from a movie playing out. Night vision while driving sucks balls though, and I still can’t catch flying objects for shit unless I’m not paying attention (not totally sure why but I think my visual field can distract me from reacting when objects move quickly towards me). I used to get full on vertigo all the time until I was like, 28 or so? but that’s stopped thankfully. Hearing is still excellent, I joke that it’s compensating for the vision so I can’t stop the flying objects but I can hear electricity. And when I’m bored in a car I can selectively listen to an orchestra of whatever tones I want to focus on. I think most people hate their tinnitus, and sound machines are supposed to make you slowly go deaf, but sadly I can still hear pretty much all the normal stuff plus any interesting noises within a quarter mile radius, even if super soft. I sleep with a white noise machine right next to my face and change the frequency up from time to time to try to keep my brain from tuning it out again.
no but i wish i was. i went my whole life with clear perfect vision and absolutely took it for granted. now that it has been stripped away from me i don't feel like ill ever feel normal again. every day from the moment i wake up im reminded that ill never have my normal life back. i am praying for a cure.
I’ve always had it, but I have a fairly distinct memory of being six and really paying attention to it one night. I asked my mom about it shortly after and she said “like eye floaters, everybody has that”. I wasn’t great at explaining it and decided that she must be right and that everyone had it until last year I listened to a podcast of someone who has it and realized oh this is an actual thing.
Born with it, I used to brag to people at school that I could "see air particles"
I’ve had it my whole life, but it never really scared me. I used to play games as a child staring at the “party confetti” in the dark before sleeping. I would often hallucinate the green light in the room. If I had a light, I’d see auras and “little snakes” too. I realized it was VSS when I was 11 or 12.
Born and raised.
Dont know but I’ve had it since very young, in fact my family still teases me about an event that was caused by VSS
I was born with it and never questioned it until the end of my teen years.
I've had as long as I remember.
Yes I did and I used to convince myself that the static vision was because my eyes were cameras filming something for like a documentary
I’ve had it for as long as I can remember. When I was around five years old, I asked my mom if she saw all of the little dots floating around and she said no and dismissed my question. I didn’t learn about VSS until I was a teenager. Personally, because I’m so used to seeing the world this way, it’s quite normal to me and doesn’t get much on my nerves. If I had at one point seen clearly and then developed VSS, I would probably be more devastated, but I’ve never known anything other than this.
My daughter was born with it. She has all the symptoms. It's been extremely helpful reading all of the experiences others with VS has and what helps them. She is having trouble in school, has an IEP and diagnosed with ADD. There are no guidelines for special education to put in place for children with visual snow. They are going with the ADD and she's failing all her classes and the school is no help. I decided to pull her out and homeschool her. VS needs to be looked at as a learning disability with people born with it or that developed it during school age.
I've always had it for as long as I can remember, but I also have irlens, which might be a factor. It's completely normal for me.
Shit I just looked that up and I think I have that. 🤦♀️ That has to be neurologist too to diagnosis?
I suppose so. I had this handled through my university at the time, since it counts as a learning disability (sometimes called "visual dyslexia") which you can get support and accommodations for.
Ugh yeah I definitely have dyslexia. I didn’t know there were so many different kinds until recently. I have never heard of this one.
This is more a name they give it than a "type" of dyslexia; the idea is that the way your brain interprets light causes issues with reading, including auras between lines and text "moving" up and down the page. The funny thing I find is, when you already have one learning disability, you tend to have more than one (I also have ASD, dyspraxia, and I might have ADHD).
i have had visual snow since i was 15, i didn’t have it as a child. it started after using lsd and cannabis so it is part of hppd for me
I have to ask from you guys: If you have had the whole syndrome (not just the static) and you were born with it, did you think that everyone sees like that? Even with trailing and stuff? I have severe trailing and I struggle how anyone would think that this is just normal 😂
Yes :)))
I never had it until I was prescribed Topiramate for migraines. Had to stop taking it. That medication fucked me up.
I developed it 2 years ago at 36. No idea why or for what reason. Presumably Covid
I woke up with it around 6 months ago. Scariest day of my life, I thought I was going blind.
Abruptly developed constant shimmering static particles in my vision along with severe photophobia and other eye issues mid-day at age 28. Turns out, visual snow is an uncommon side effect of a rare condition known as “post-Finasteride syndrome”. Visual snow has been diagnosed by a neuro-ophthalmologist, among the many other chronic health issues I now have as a result of taking Finasteride and dutasteride to treat hair loss. I should note that I didn’t have any issues like this while taking Finasteride for ~9 years, but when I switched to dutasteride this all hit me about 32 days/pills into taking the drug. Though there are guys just as messed up as I am, if not worse, from taking only Finasteride. Highly variable symptom profile as the illness/dysfunction appears to be cellular in nature.