I suffer from a very rare neurological disorder known as Visual Snow, AMA

THANK YOU FOR POSTING THIS. I might have VS. I have tried explaining the situation for doctors, but no one had the answer. I feel so relieved that I am not the only one seeing these things.

That's exactly why i thought it would be a good idea to make this :D

You should join the facebook group, you'll feel a lot better about it all.

Wow. When did you realize your vision was abnormal?

When i was 15 or so. I wasn't born with VS as some people are.

I was 15 and started having odd symptoms... stabbing pains in the side of my head, like someone was stabbing an ice pick into my eye through the side of my head, and i started seeing red sparks appearing and sort of fading out. Then i started noticing static everywhere, and afterimages were lasting longer than usual. Eventually the random stabbing pains and red sparks went away, everything else stayed.

That was 6 or 7 years ago now in my first year of high school.

Jesus Christ!

Thank you for posting this. I have ALL the symptoms you have described. I remember becoming aware of it around age 5 in a school assembly. It bothered me for years and years.

As I became a mid teenager I got into drugs and, well did a lot of them including many many hallucinogens and psychedelics which muffled/made me less bothered by it all, but after coming down the symptoms were really exacerbated. This carried on for a couple of decades until I stopped drugs altogether but the exacerbated symptoms continued :(.

After a lot of research I diagnosed myself with HPPD and just well, learned to live with it. Very difficult sometimes, especially the DP/DR when it kicks in hard during important activities (like speeches). Nonetheless this couldn't explain the symptoms I had had during pre drug childhood.

This visual snow idea fits perfectly.

In addition to everything you have listed, I have a few other symptoms that come and go.

1: Tracers: I get purple and green "afterimages" of things which are fast moving in my close field of vision, especially my fingers when typing. (fapping is interesting too; think The Matrix bullet dodging)

2: Ear pressure: I get a feeling akin to ear pressure in an airplane or elevator. It can last for minutes/hours/days at a time and suddenly it will stop, with an immediate increase in tinnitus. To add insult to injury, I had my hearing tested and it is WAY above the norm for someone my age. LOL I get to "hear" my tinnitus in hi-def!

3: When the DR/DP is in full effect, it becomes very difficult to multi task and concentrate on problems that required consistent attention.

I totally feel you on never getting any peace, it's bloody horrible. I don't know what darkness or silence is like. I have constant sensory input.

I saw a doctor about it once, as it was affecting my sleep for a while, but the medication they gave me made me infinitely more ill and had a withdrawal syndrome lasting 2 years (with some effects still lingering many years after).

I'm sorry to hear that you have this problem, but at the same time am relieved that it's not just me going mental or being born broken.

Good luck!

VS and HPPD at the same time? That's harsh :(

Yeah, avoid drugs. From what i've heard HPPD can reduce over time. VS not so much.

Check out the facebook group as well.

Thanks, but I left facebook a long time ago.

Without sounding like a new-age hippy moron, other things that seem to increase symptoms.

1: caffeine - I have a cup of coffee in the morning and am usually ok, having more than that seems to increase tinnitus.

2: really salty/msg laden food - DR can go crazy for several hours.

3: alcohol - I used to drink A LOT. not now, just one beer maximum and that can increase the ear pressure the next day.

I use a white noise generator to mask the tinnitus at night and a tempur eye mask (even the stand-by light on my tv will wake me up) I find the slight pressure it puts on my eyes kind of alleviates the flashing and streaking. Also, relating to your blood flow hypothesis, the position of my head drastically alters the tinnitus, I sleep with a paper thin pillow now. Blood sugar levels also severely affect the DR/DP. I am far from diabetic, so that is not a concern, but I find eating smaller complex carb meals 5 or 6 times a day, really helps.

Drugs all have a negative effect on the symptoms now. However on the other hand, having taken and handled so many psychedelics, I find that I am better equipped to manage the DR/DP when it gets bad. Rather than regret the drug abuse, I consider it battle training for when times get bad.

It might be worth it to you to make a facebook account just to post in the VS group and nothing more. There's a ton of useful information being posted there all the time, and a study result coming out soon that hopefully gives us some answers.

Anyway, i've heard that beer in small amounts can help reduce VS temporarily. Well, people tend to say that specifically guinness does.

Before you knew what it was, what did doctors think it was, and what was their approach to treating t?

Well, i've never been to a neurologist, because i'm in the US and uninsured, so they simply won't see me.

But i did go see a few different optometrists back when i still thought there was something wrong with my eyes (it took me a few years to figure out it was neurological)

One of them told me it was from dry eye and gave me some eye drops. I did have dry eyes, but that had absolutely nothing to do with the VS. It made my eyeballs feel better though.

The other answers i got were that it was from my eyes having trouble focusing because i had recently had my glasses prescription updated (trouble focusing will never cause such symptoms) And finally yet another optometrist who i would say was the most competent one i've visited simply admitted that she didn't know what it was, but didn't think it to be eye related.

No doctor i've been to has taken any approach to treating it, however other people with the condition have been diagnosed with Persistant Migraine Aura (most commonly), HPPD, and other various neurological disorders, however these diagnosis are thought to be wrong seeing as treatments for them never work on people with VS.

Health care in the US really seems to suck. I mean, as a young teenager it's not your fault that you're uninsured, but you're the one who has to suffer from it. Doesn't seem really fair to me.

I wish you all the best, OP!

Thanks. And yeah, it does suck. I'm almost 22 now and still can't afford insurance or health care though. It's just insanely expensive.

I... I think I have visual snow, at least in that I've always had some static, and I think either phosphines or sctomas - when I close my eyes, with or without a light source I get vivid coloured patches which warp and merge even if I open them again. I honestly thought it was normal. I'm 20 and I can't remember not having it.

The blobs are phosphines.

Scotomas are flickering dark spots with hard edges.

Anyway if it doesn't bother you, no need to worry about it.

Phosphines are normal under certain conditions.

WOAH WOAH WOAH, Hang on a second, you're telling me that this is a thing? I've had this almost my entire life and every optometrist I've ever seen has told me it was nothing.

Yep, it's a thing. Try the facebook group i linked.

I have visual snow as well. It Sucks so much it's hard to describe.

Indeed it does... you should join the facebook group. It really helps you feel better about it, plus having a huge facebook group of people with VS is something to show doctors so they'll take the condition seriously.

One person has symptoms a seasoned medical professional has never heard of that sound outlandish... chances are they're faking.

Show that medical professional a group of a few thousand people with the same symptoms and they'll get the idea.

I have nearly all of the symptoms listed in the description. Most of it is very normal, to a point. Do you get the "static vision" thing even when sitting down? I get it very often when I stand up quickly, which is normal.

You're describing a head rush. A sudden drop in blood pressure caused by standing up when sitting for too long, because blood has pooled in the lower extremities and is suddenly being circulated much more evenly.

No, VS is not a head rush.

Drink more water, head rushes happen more when you're dehydrated.

This is not a rare thing. Most people have it to some degree.

Actually a lot of VS is significantly increases in normal visual phenomenon. Everyone gets afterimages, but not usually from just looking at something slightly lighter in color than the surroundings.

What do you find is the most difficult part about having this and what do you do to try and cope? Like you clarified it isn't life threatening or anything but as I thought about all the symptoms it sounds like some of them would make me got nuts.

The most difficult part is probably the disconnected feeling, as though i'm viewing the world through someone else's eyes, or through a screen rather than actually being there.

Also, trying to sleep with a shitstorm of static and noise is pretty hard as well.

Anyway, as for coping there's not much really. Video games help a lot, mainly because VS is much less noticeable when looking at a screen, because the fact that it's uniformly lit helps to cut through any afterimages, but still allows for seeing a lot of contrast. Other than that, i just... go about life doing stuff as i would without VS.

I have VS. It's noticeable if the screen is dark.

Yeah, a dark screen is staticy, a white screen shimmers strangely like water in sunlight.

I have had visual snow probably since I was born. I didn't know it was out of the ordinary until my dad was talking about the tiny dots he saw, like static, when I was about six. I immediately agreed with him but nobody else knew what we were talking about. It makes driving at night very difficult. Also, I don't think it's super rare; most people just don't know about it.

I think that VS is actually just extreme versions of normal visual phenomenons. Maybe it's stuff the brain usually filters out, but in out cases cannot.

Some of it though can't be normal... Like static so thick in the dark you can't see anything else, and opaque afterimages.

I'm not sure what causes it, but hopefully they figure it out. Maybe one day there will be a cure. Then again, this is how my vision has always been so it's just normal for me. I can't help but wonder how everyone else sees though...

Also, I get the after images all of the time and my ears ring fairly often, but not constantly.

Well, if you join the facebook group i linked to, there should be a study about it coming out fairly soon, and apparently it has some solid results. Not a cure, but the first actual information about what's going on in the brain, and with that a cure or treatment should be possible, since every previous attempt any doctor has made at treatment has just been a shot in the dark prescribing medication that usually doesn't help.

Are there any positives to having VS?

None that i can think of.

Though there are a few nutters who have it who think it's a gift from god and that it's some kind of zen awakening thing. They see it as some kind of gift and are urging everyone to embrace it as being some sort of magical wonder...

However i (and most people with VS) see such people as excellent candidates to be thrown off a cliff.

You said you see the same static shitstorm when trying to sleep. But what happens when you actually do fall asleep? I mean when you lose your consciousness and such. Does the static carry over to your dreams?

(If you have had a lucid dream, can you describe your experience?)

No, that's the one time the static is gone.

Well, i think it is. It's really hard to tell in dreams because vision just doesn't work the same there.

Thank you for answering. I have never heard of your condition before, and I find it quite fascinating, as well as dreams. I'm sorry you have to suffer from this condition.

However, I feel like I should pursue the question further:

Do you have attempted to lucid dream? (It's basically a dream where you know that you are dreaming and thus, are free to control it and do anything). If dreams are the only place where your vision is normal, maybe it could help you find some solace in there?

I've attempted it, yes.

Every time i have though it never went anywhere.

I have had a few lucid dreams when i wasn't trying to however. Those are always neat, but short lived.

Yeah, they can work oddly like that, usually appearing after you have stopped trying. Thank you again for your answers.

No problem

Try eating something like pizza or tacos before going to bed... helps me.

You mean... dinner?

You never had that for dinner? I eat later than most people I guess.

Food starts in my stomach and I have a digestion period of about 4 hours. If I go to bed before the 4 hours is up, I have a deep sleep while digesting and crazy dreams. I'm a regular lucid dreamer, so I don't always eat pizzas and tacos- I don't even watch TV. I know my dreams will keep me entertained.

I've had that for dinner, yeah. No, i don't think i understand what you mean.

Do tacos and pizza have special powers, or do you just mean eating food in general at night... as in dinner?

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Check out the facebook group. The more people we have in it, the more seriously VS is taken, because it's pretty impressive when you show a doctor a group for a disease that no one knows about if it has thousands of members.

Thanks for raising awareness of this. I have this too, and when I first brought it up to my optometrist she looked at me like I was crazy- I was totally embarrassed.
Then it started to get much worse a few years ago, and I confided to my boss and she gave me the name of her doctor. My night vision is now almost non-existent, and I'm seeing neurologists for it - MRI is normal but the other visual tests are not. They've tested me for MS, Lyme disease, and brain tumors (the tests are continuing).
This is a maddening condition. You can't think. You can't concentrate and your anxiety increases. When you stress, the visual snow gets worse, which in turn increases the anxiety. It's an awful cycle and people don't understand how bad this is.

Also, OP, if you can't afford a neurologist you might want to give topamax a try? It's just a migraine medication, can be prescribed by a regular doctor in the same way they'd treat chronic migraine, some people with visual snow due to persistent migraine aura have had some success with it. I'm trying it now but no luck for me yet. Fingers crossed. Just thought I'd throw it out there. :)

I've had a total of one actual full on migraine in my entire life, so i don't really think that's the case for me.

You can absolutely have migraine aura without the migraines, which is what my neurologist believes may be the case for me. I don't get them either.

Well, that is a pretty common theory. Persistant migraine aura without infarction is the most common thing people with VS are diagnosed with.

However, since typical treatments for PMA don't always work in people with VS it might be a different thing alltogether.

VS is likely a symptom that can have different causes.

Like chest pain for example... it can be caused by coughing, a heart attack, gun shot wounds, leeches, impalement, etc.

Fair enough! Just thought I'd let you know what my neurologist is trying out on me since its such a common medication. :)

Tell me how it works out!

what is migraine aura?

The other symptoms that come with a migraine aside from the headache are known as the aura. http://www.mayoclinic.com/health/migraine-aura/MM00659

Most commonly it's visual disturbances, such as zigzags going through the visual field, or partial (but temporary) loss of vision in both eyes, but in the same sector (for example, you might not be able to see anything on the right of your vision, but it's in both eyes)

However, i'm pretty sure the PMA diagnosis isn't right.

Holy shit, I also have this but never knew that there was a name or condition to it! Whenever I look at the blue sky while on a plane I see thounsands of white things moving about very fast kinda like worms or bacteria. Floaters are an everyday ocurrance to me and I've just basically learned to live with it.

The most anoying thing is the static field all over, it's impossible for me to look at a white surface without getting fucking annoyed by it or the floaters. Other then that I mostly forget about it he whole day ....mostly....

I've also been tested for glaucoma multiple times, those tests are the worst thing ever, since I have high eye preassure, but never been diagnosed with it (it's mostly african american people and I'm caucasian).

Man, it's fucking great knowing I'm not the only one suffering from this! Thanks for doing this AMA!

How could I even begin to bring this up to my oftalmologist? It's so wierd talking about it and trying to describe it without being seen as having some time of sick condition or something.

Oh and the sudden migraines are also the worst! I've had them maybe thrice in my whole life, once during a class in college and the other times where just sitting down. Blurry vision, seeing colored lines and the freaking headache!

Join the facebook group, it will help take away quite a bit of anxiety when you can joke about it with people who have it as well.

Were you born with it, or did you later develop it?

I developed it around 15 or 16 years old.

I think it may have had something to do with forest fires. I live in a valley surrounded by densely forested mountains. There were a ton of forest fires in the mountains one year, so much that the smoke looked like fog one summer... that was around the same time my VS started.

I know this feeling of being disconnected, luckily i just have it about once or twice a week for some seconds. How often do you get it and how long does it lasts?

It's pretty much constant.

I have this. My friend also has this. your not alone bud, if you need anyone to talk about it with or make any new discoveries please tell me cause this shit is a pain in the ass.

Edit: pretty bad comment so i thought id add

i've had it for about a year now and am almost 17. I just woke up on day and there it was, never went away. Close friends has it same symptoms and all. Doctors said i'm fine and i have perfect vision even with the static It goes away when i'm outside and it gets worse in small dark,indoor, rooms.

Also if you have this and find some cure on the internet, its a scam.

I'd recommend joining the facebook group i linked to. Every once in a while someone finds something that helps ease off the symptoms a little, or if there is any new research done on it, it's posted there.

Thanks, just joined. Anything that can help is definitely welcomed.

Try magnesium supplements. They seem to help, but just a little.

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Wonderful, i could use a huge pile of cash :D

Anyway, magnesium and calcium don't do a thing for you without each other.

However, calcium can inhibit the absorption of other vitamins if it's taken with them.

I suggest having some magnesium after breakfast, then later in the day eat some yogurt or take some tums or something.

Have you tried removing foods that cause neurological disorders, such as gluten and caesin to improve or resolve your disorder all together?

Nope, never tried that, but other people with VS have and have reported no reduction in symptoms.

I have this as well. My visual snow came from smoking cannabis daily for a year or 2. Since I have been sober for 3 years and on a healthy diet, I only get peripheral hallucinations and visual snow when I am stressed.

What you have is HPPD it sounds like.

http://en.wikipedia.org/wiki/Hallucinogen_persisting_perception_disorder

Have you ever tried psychedelic drugs and if so what were the visuals like?

Nope, i've never used any drugs in my life.

Have you ever taken mushrooms, LSD or mescaline before? Im curious to know how the trip would be for you.

I have not, and i dare not. It would probably make my symptoms worse permanently.

TIL I have vs. I experience everything you said but I never had any problem with it. I just assumed life was like this for everyone.

If it doesn't bother you, no need to worry about it.

Basically ... you're on acid ... but all the time ...

... I wouldn't trip. [no pun intended]

Nah, doesn't acid come with actual hallucinations or something?

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No particular way i guess. I mean, what other options are there aside from just living with it?

OH MY GOD

I have had this for roughly 20 years and never knew what to call it. Every single symptom listed above is my life. I have often wanted to recreate the effects with a computer so people could understand just how bizarre it gets.

Thank you, OP.

People like you are exactly why i made this. Not knowing anything about it is the worst. You should really join the facebook group i linked to. There's supposed to be a study that got some results on the cause of Vs coming out fairly soon.

Do you need to use tinted glasses or a colored transparency sheet when reading? Do you use a tinting program for your computer screen or do you change the background color when typing?

I know this is a separate condition acknowledged as a minor form of dyslexia, but I am wondering if the two might be connected. I've had to use tints for reading since I was 10.

I've been diagnosed as dyslexic, but honestly i have no trouble reading, so i really don't know.

A tinting program is certainly more comfortable, but isn't really necessary for me. But if there's white text on a black background, that will kill my eyes. Anything where the text is a light color and the background is dark is awful.

f.lux is an excellent tinting program if you need one.

Anyway, i don't use it much myself anymore, because i do graphic design work (it's a hobby, really...) and the tint would put my colors off. I have a minecraft texture pack. I have an album of it here, if you don't mind a shameless plug

I have had this all my life. Most of the time I can ignore it.

In a way i envy you... If you're born with something like this, there's nothing to try to adapt to, it's simply how you know the world to be, not something to cope with. Right?

As a kid I complained about it but nobody really told me anything and doctors just sort of dismissed it. As an adult it's something that never got any worse. So I figured if it were serious I would already have been dead.

Yes. It is something I tune out 90 percent of the time. It is annoying but I don't have anything to compare it to.

Well, it's definitely not going to kill you.

Hey OP, I too experience the constant ear ringing and occasional dark spot flashes,tons of eye floaters and snowy visuals. Back when i was 21 i was painting a house on the outside and got shocked from the electrical wires coming from the street. I always told myself i probably damaged myself pretty good and blamed that incident for my tinnitus and flashes. I feel soo much better now that im not the only one with these symptoms! Thanx for posting this.

From getting an electric shock? That could be extremely relevant. You should join the facebook group and make a post about that there. Be as detailed as possible, try to think of everything that happened.

It could help us understand what causes it.

Half the people in that group ended up becoming amateur neurologists due to the VS, myself included, so someone might have some idea how that could tie in.

You just described my reality. I didn't know there was a name for this. I was diagnosed with disassociative disorders but that definition never quite fit. Doctors think I'm making it up or hallucinating when I talk about my vision being pixelated or fuzzy. But my eyes are healthy. I tell them it's like living in a robot that I can control but it's not really me. Like living in a dream world where nothing is real.

Thanks for posting this.

See a neurologist, not an eye doctor.

Join the facebook group i linked to and show it to the doctor. There have been a few medications that people have had some luck with. I'm not saying you should go out and get them, that should really be up to the doctor to make that call in your specific case, but i've heard good things about lamotrisine or something like that. Lamb something... it's some kind of pill that sounds like it contains lambs.

Thanks for doing this AMA. I've had VS for as long as I can remember, when I was super young I thought I was just seeing "atoms", like we learned in science class haha. Then I found out atoms are microscopic and such ;p When I first found out there was a name for it I found these forums which really helped feeling not alone; http://thosewithvisualsnow.yuku.com/

I was part of the FB group a few months ago, but everyone was kind of too dramatic about it for me. I guess I'm just so used to mine, I couldn't really connect with everyone else freaking out & looking for answers :/ Although I was pretty pleasantly surprised how many people were in the group and chatting about it.

I'm not sure how the depersonalization is a part of it though, I know I get that symptom because I have anxiety/panic disorder personally. All the other visual symptoms from what I can tell and experience myself are related. I also get the "pickaxe" headaches from time to time, which are so random. I could get 3 in one day then not again for 6 months, so annoying! lol

Ergh yuku. Don't go to yuku. It's infested with trolls, and never gets any relevant information posted. It's a depressing place... Even the forum skin for it is depressing.

Actually, i'm the one that designed the brown background and such (i'm not an admin, i just designed it and had them apply it) anyway i thought it would be easier to read with VS. I don't think it really worked.

Haven't been there in so long honestly! But I remember it being one of the only places online that I found anyone who talked about it. I guess I don't focus on it anymore since it's just a natural part of me at this point.

thinking about it, I guess the depersonalization/derealization is kind of a side-symptom of not being able to understand what you're seeing. Although when I get it these days it's completely different than when I laid in the dark and just surrounded by fuzzies. But I can see how it can relate.

Join the facebook group, it really makes it easier to deal with when people who have it can actually talk about it openly and even joke about it.

Like I said, I used to be in it and it just felt like people were freaking out all the time. I just couldn't relate at all. Maybe it's better now, but it seemed like no moderation was being done with the bunch of Off Topic posts and stuff too.

I don't see so much freaking out, but yeah there's plenty off offtopic stuff still. Not too much, but some.

Anyway, relevant information is often posted there, so imo it's worth it, even if you don't actively follow it. I think you can make it so the posts don't show up in your feed, but you can still view them if you want.

I did not know that this was rare. I have literally all of those symptoms. I figured it had to do with the fact that I have really bad vision. I never connected it to the tinnitus and the derealization before.

There are people with 20/20 vision with VS... and some, like me who have shitty vision and need glasses.

It's really cool to see so many things that have bothered me throughout my life come together. I have always had trouble trying to explain what I have previously referred to as sudden blinding moments of reality where it's like my perspective shifts suddenly, or as if I was looking at thing through a screen and I'm suddenly just seeing things through my own eyes. Next time I feel that, I'll try to remember to see what the visual snow is doing at the time to see if it has changed in any way.

I showed my husband the visual snow simulator I saw linked in another comment and he was confused to how I don't run into everything all the time. I explained that I'm used to it, but now he understand why I hate driving in the rain and at night so much.

Rain is actually good for VS imo, because you can't tell if you're looking at static or rain falling and for once it's almost like seeing just like everyone else does.

Plus the lighting is very soft, which keeps the afterimages down.

Been to two eye doctors and they had no clue and dismissed it :'(

It's neurological. A neurologist finally did a study on it not long ago and will be publicly releasing the findings at the end of october, which will hopefully lead to some treatment options.

I have VS as well as some other related symptoms (light sensitivity, very persistent afterimages) but they seem to come and go. Right now I barely notice them, but there have been a couple of 2-3 year long periods where they bothered me intensely. Have you been treated for migraines at all?

I've not been treated for anything, i can't afford to see a doctor.

oh, I see. Well, I hope it gets better for you like it did for me.

Did the symptoms go away for you, or just the anxiety attached to them?

For me, i'd be fine with either of them though of course i'd very much prefer to have the symptoms gone.

But the way i see it, it doesn't kill you, and if you can find a way to not care about it, that's almost as good as being cured.

Anyway, there have been a few lucky people who just had their VS mysteriously disappear one day after suffering for years, and never saw it again.

Thank you so much! I recently had prisms added to my glasses bc they just can't figure out why my eyes don't work together, and see snow (or glitter as I call it bc of the colors), constant flashing lights when I close my eyes, etc, etc. I was referred to a neuro but was so fed up I declined. I will definitely go now.

My 'glitter' is twenty times more intense in a pitch black room, and even swirls and makes designs. Have you heard of that?

Yeah, with VS pretty much anything you can think of can happen. Abstract patterns, sparkles, even the occasional perfect grid overlaying vision.

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Yeah, it's hard thinking you're the only one in the world that has something, and sometimes it really seems like it if information isn't readily available.

I think i have this, but its not that bad and really doesent effect me much. If i look at anything dark and black i can always see the "snow" and i also get "Phosphines, sctomas, and the like" when i close my eyes or im in a very dark room (dark to the point of needing a light to maneuver), and also Tinnitus, sometimes its worse then others but i cant sleep in a completely silent room, i need a background noise like a fan or else all i can hear is the ringing.

The Phosphines, sctomas, and the like, sometimes, i can make things out of them. If im about to go to sleep and are relaxed with my eyes closed in a dark room i can faintly make actual figures and things out of them. This always happens if im high on weed and gets exaggerated giving me crazy closed eye hallucinations (which i love). i was once stoned to the point (this was the most high i had ever been) where i could see them in the dark room i was in with my eyes open.

Should i even bother talking to a professional about this? If it doesn't effect my daily life at all and there is nothing they can do, then whats the point?

If it doesn't bother you, there's no reason to bother trying to get treatment. It doesn't seem to do anything harmful aside from the symptoms themselves.

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A bit like this?

http://25.media.tumblr.com/tumblr_lqbqqxy3zM1r200uko1_500.gif

exactly like this

I made this today to show other symptoms as well. http://i.minus.com/ibmCq7H1cfv5L9.GIF

the blobs, definitely. The shadows, I don't know if they are there or not

Those are afterimages, actually.

It's kind of hard to show them accurately, because they're always stuck in your vision as you look around.

Is this really all that rare? I experience all of your listed symptoms.

Well, most everyone who has it seems to think it's really rare, but i believe it might be somewhat common. Not hugely common, but maybe 1 in every few hundred people.

The fact that most doctors accuse people of faking it i think makes people not want to mention it lest others think them fakers as well.

I have this aswell , never knew it was rare.

Most of the visual phenomena i mentioned is normal to a certain degree (aside from the static) It's just that in people with VS they come in extreme forms.

Most people see an afterimage if they stare at a light bulb for a few seconds, but that afterimage is gone in a blink.

People with VS have an afterimage if they look at a white piece of paper for a second, and it takes longer to go away than the amount of time they looked at it for. Glance at the sun, and see it for an hour...

I've had visual snow since I was 21 or so (27 now). I found that drinking wine helps get rid of it temporarily or at least distract the mind from it.

Most people say dark beers help reduce it temporarily.

I've never tried it myself, beer is expensive.

TIL everyone on reddit has VS

I think the name makes it fairly obvious what it is, and that's what compels people who experience it to click it.

Holy hell this is actually a thing, and it explains so much.

Yep, it's very much a thing.

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I find that simulator to be pretty inaccurate. I should make a gif or something...

Is there any indication of what area of the brain may be causing/contributing to this, if it is localized at all?

Is the depersonalization/derealization related to the stress of having the disorder/social stress, or is it actually endogenous to the disorder itself? I've had both by the way, trauma induced, and they do indeed suck.

The best theory we have so far is that it's likely related to blood flow in some way. I did a poll in the facebook group and found that tons of people with VS have problems with their neck or jaw. (TMJ is very common in those with VS, although stress/anxiety can cause TMJ so who knows)

It really does back up the blood flow theory, since inflammation could be restricting blood vessels, or it could be due to compression of the trigemninal nerve.

Anyway, there was a study done by a neurologist which has apparently produced some answers about the cause, that will be out soon, maybe even at the end of this month.

The depersonalization/derealization does seem to be a symptom of VS.

Have you ever been tested for blood disorders? i Know blood clotting disorders are starting to show up in conjunction with other disorders, including disorders that include an inflammatory process.

Personally i've never been tested for anything. I am uninsured and in the US, meaning i have absolutely no access to a doctor.

However, the VS facebook group i mentioned... there are over a thousand people there, most of them have had pretty much every test known to exist. Not one has had anything show up out of the ordinary as far as anything with VS is concerned.

I mean, of course a few of them ended up finding out they had other unrelated medical conditions, but there has been no consistent result found between them.

I have a friend with a rare disorder that is both vascular and neurological in nature. It was identified not long ago, is likely heavily underdiagnosed, and treatment protocols are just starting to be established. It won't all come together in time to save her mom (it is inherited autosomal recessively and is currently fatal), but the outlook is a little better for her.

I guess what I am saying is don't give up hope, even if you have no insurance. Doctors are busy exploring this disorder on the people that do, so when things finally come together, you'll be there to reap the rewards.

I don't think the disorder you're describing is the same thing as VS.

VS has never been fatal (unless you count the suicides), there are people 70+ years old who have had it their entire life.

Are there any way for doctors to test this? Also, you describe it being very isolating, could you elaborate? I understand how doctors not believing you can piss you off, but have others in your life done something similar?

There is really no medical test VS shows up on. Most likely because they don't know what to look for. If it's something as simple as a harmless variation in a blood vessel, a neurologist might see it on a MRI and think nothing of it. The only way anyone could possibly ever figure it out is get test results from a bunch of people with VS, and a bunch of people without VS, look for common factors between each group, and compare them to see what's different.

Luckily there is one neurologist doing something like that and he will be releasing the results soon... somewhere. Not sure where they will be released, but i will look into finding out. (There's a guy in the VS group on facebook who knows this neurologist, and will be posting the study results there when he gets them)

And yes, VS is very isolating... Think about it. You are nothing but a brain. You have a full body to get you around, organs to serve you and keep you alive and fed, and sensory organs to tell you what the world around you is like. But in the end, you are just a brain.

Now, relating to others is pretty hard when your sensory organs are telling you there's a constant shit storm around you that you know isn't real, and others cant see. It's basically like living in different world from everyone else, like being in a cage, behind a glass wall. You can take the cage anywhere you want, but in the end you're still inside of it.

Also, the whole depersonalization thing makes it seem as if people are just inanimate objects... except they move. Animate objects? I dunno, i always figured that people are supposed to feel something for other people, or have some sort of sense that they're living creatures or something. But i see other people and they're just background elements, lumps of matter, i can't relate to them in any way. I have a much easier time relating to people in text for some reason. I don't think it was like that before i had VS though. Maybe it's because text gets in your head better. Or maybe in this case it's just me, i have been pretty isolated my entire life. Maybe i just never learned to relate to people because i never had practice.

Reading through your post I'm pretty sure I have this, but the psychological effects you've described, to me, seem (for lack of a better word) extreme. Really I'm not trying to be offensive at all, but I can't tell how it could be that troubling.

I think i just have far too much time to think. I'm unemployed and basically have nowhere to go all day. Things aren't nearly as bad if i keep busy.

But it effects everyone differently. A lot of people with VS end up with far worse psychological issues than anything i might have. Some even end up suicidal :/

But knowing one is not alone in the VS, and knowing what it is (well, to the extent of the available information) really makes it easier to deal with, so who knows, maybe this AMA will save some lives. Probably not, but who knows if someone about to jump off a bridge somewhere because of their undiagnosable medical issue might check reddit first.

Thank you for replying. I know clinical trials can take a while, and are very expensive. Hopefully the results will be released soon!

The reason I ask about the isolation is because I have a friend who is legally blind (sorry, can't find the exact name of the disorder that resulted in his blindness, but it had something to do with his retina. Anyways, he can see very limited amount of light and some color, but with very little contrast and almost no resolution. Like if he sees a dark blue box on a table, to him it will appear as a dark colored blurry blob).

Despite his blindness, I would hardly describe him as being isolated because of his visual impairment. We still go out to movies, eat out, and hangout. He's the exact opposite.

By no means I am calling out a fault on your part for being isolated. I was just curious as to what aspect of VS affects your social life that's different from being legally blind. The person I described is also very outgoing person by nature, so that has to be taken into account.

Well, like i mentioned for, the derealization/depersonalization makes it feel like i'm viewing the world through a screen, rather than being there.

Know how you find it rather hard to connect to NPCs in a video game because even though they seem autonomous something about them just isn't real? Same thing here, except i know other people are real.

And i think what your friend has would either be macular degeneration or retinitis pigmentosa.

Yea, it was retinitis pigmentosa I believe. And that video game analogy make sense. And in the light of that, is there a psychological aspect that needs to be treated, and if so, how is it treated? Is there a way to overcome the, well, confusion you get from the way you perceive the world?

Some people are treated for the anxiety/depression it causes, however antidepressants can sometimes cause worsening of the VS symptoms... not to mention those things have been known to make people suicidal who weren't already.

The depersonalization doesn't really have a treatment, though it's not really psychological. Even though I FEEL detached from reality, i know what's real and what isn't, and i know that actions have consequences. So it's not really a matter of confusion so much as perception.

A better example: Imagine if you were wearing a suit that completely cut you off from the outside world. There's a camera on the front that feeds an image onto a screen in front of your eyes, there are microphones on the outside that will bring sounds in to headphones you're wearing. It's showing you what's outside the suit, and you're experiencing the actual world through it, but at the same time, it's degraded and artificial, even though you know what you're seeing is real, you're just somewhat cut off from it at the same time.

Ok, so like brain in the vat thought experiment?

The idea that a brain without any sensory input would create its own world? No, not really.

Huh, I seem to have some, but not all the symptoms listed o.o If they were numbered I have 1,4,6, and 8.

The real question is... does it bother you?

If not, then don't start worrying about it.

It does to some degree, it hampers my vision in low light situations, the visual interference softens lines to the point it becomes somewhat hard to see.

That's one of the biggest problems for me as well.

I find that overhead lighting is horrible. The best thing to do is get a lamp and shine it on a wall and let it diffuse the light. It makes it easier to see.

As soon as i can afford it, i'm going to get some lamps for my room. I already have one, but it's a piece of junk that is extremely dim, but it's still an improvement over the ceiling light. More would be even better. You should get some!

So... I have almost all of these sometimes... Do you have these things constantly? Or do they kind of pop up, like you generally don't notice them except every once in a while?

Constantly, yes.

I can ignore it to a certain extent, but it's always there.

I have this, too. But it's because I overdosed on synthetic cannabinoids twice.

I think you have HPPD.

http://en.wikipedia.org/wiki/Hallucinogen_persisting_perception_disorder

I'm aware, but the symptoms are virtually identical. They were just triggered for a different reason.

From what i understand, HPPD is more transient, and comes in blobs of static only covering part of the visual field, and can reduce or disappear over time.

wait, i see static, and when i stare at any fine patterned surface i it start to move like hot lava. I also see stuff wizz around when looking at solid colors. Should i get it checked out?

Well, if it doesn't bother you don't worry about it, because it's not doing you any harm.

If it does bother you, getting it checked out probably won't do you any good. There is a study coming out pretty soon which will give some answers about what exactly causes it. That information might lead to a treatment.

My VS appeared suddenly when I was about 17.5 years old. I went to see an opthalmologist, who confirmed there was nothing anatomically wrong with my eye, and the neurologist had an MRI done on me that only picked up hardening arteries. However previous to developing my symptoms, I had two optical migraines, which caused temporary blindness in one eye and severe head pain for a short time. The second optical migraine I had was right before my VS appeared, so I suspect it may have something to do with it. Have you ever heard of anyone else with VS having a history of optical migraines?

Migraines are somewhat common in people with VS.

I don't get them. I've had one optical migraine ever, and it was a few years after i already had VS.

My friend described these same symptoms to me just a few weeks ago. She is not diagnosed however, so I thank you and I've passed this along to here. Now she knows she is not the only one

That definitely makes a huge difference, not being alone in it.

Wow! This sums up all the problems I've been having and why nothing showed up on any of my eye tests. I'm going to mention this to my neuro!

Awesome, and join the facebook group as well. It will help if you can show that to him/her.

I've seen the visual snow for as long as I can remember, but never knew it was a "thing", when I was little I thought I was seeing dust or air molecules

Well, if it doesn't bother you there's no need to worry about it.

I have loads of your symptoms from my MS. Not as severe, though, judging by your commentary on how much it affects you.

But you're not alone, anyway.

My question: It developed later in life; is it continuing to worsen?

I have a fluctuating case. Some days it's a lot worse than others, though even at minimum it's still pretty obvious and annoying.

For most people it's stable though after the onset, a few unlucky people have progressive cases that worsen over time.

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Yep, that video is pretty accurate.

Well, things don't exactly feel 2 dimensional, but it does all feel pretty fake and disconnected.

You might be suffering from methanol poisoning.

It doesn't seem likely.

Huffing too much of that new lab-acid?

Nope.