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visual snow

Snowman

Hey,

So briefly: I'm new here. Mid 40s. No formal diagnosis - both children have now been diagnosed ASD - first (youngest) a couple of years ago and eldest a month since.

I've had no idea about autism at all until recently looking into everything with the children and have realised now that it's most likely I'm autistic. Viewed through this new lens now it's like so much has finally clicked into place regarding my childhood and ongoing difficulties. The youngest child is like a small mirror of myself in many ways. Just feels like finding a piece of a puzzle.

Anyway. Before all this appeared on my radar, I'd been scratching my head about another few problems I've been having some of which I've only recently discovered are not normal and now I'm at the point where I'm wondering how I've got into my mid 40s without realising.

So I have had tinnitus for as long as I can remember. It's constant, both ears, about 15kHz so very high frequency. Never goes away, sometimes gets worse but not too much variation.

About a year and a half ago I started to notice visual snow. I have it all the time now when dark or on an evening when I'm in the house and have lights on. I didn't know what it was at first and it's been causing me a lot of anxiety. I mentioned it to the GP and was told to seek an optician but I was trying to describe how it doesn't feel like it's a problem with the eye but neurological (like the tinnitus) however the eye tests were done and everything checked out fine. Eventually I found out about visual snow and landed on this page http://visualsnowsyndrome.com/symptoms/ 

I have the visual snow which at the moment is always there but fine, blue dots, not very noticeable in the day time but I'm struggling to make details out in certain indoor lighting situations and on an evening, say when I'm putting the kids to bed, the darkened room is just a mess of blue fuzzy dots.

Having found the page above however, I'd realised that there's a load of other symptoms which I have had in advance of the actual snow some of them for decades.

Palinopsia (afterimages, indoors doesn't need to be bright light for this to happen, constant thing), floaters, Blue-field entoptic phenomenon (indoors looking at anything bright like a white wall), closed-eye hallucinations (which I didn't even think to be abnormal at all before) - so when I close my eyes it's never dark, it's always blue or red clouds moving about. Been like this since I can remember as a small child. I'm getting some of the spontaneous photopsia and have been on and off but only very slightly for the last ten years but has got worse recently. Halos have always been there for me, glare and to some extent starbursts (although I confuse this with halos). pulsating in so much as I can sometimes see my own heartbeat when I've been exercising (again thought this was all normal). I don't have problems with the pattern stress in general but I'm completely unable to deal with repeating characters in text etc, say if 00000000000000 appears and I'm asked to count the 0s it's a virtually impossible task for me. 1234567 wouldn't be a as much of challenge at all.

When I was a child I had some proper weird stuff going on. I'd had the closed eye hallucinations back then too and every night and I'd watch the blue / red clouds as I was going to sleep, but quite often I'd be unable to sleep properly for quite some time, I'd be stuck in a kind of half sleep half awake stress state where I'd "see" two outlines (squares with rounded corners) next to each other which I'd slowly zoom into on of the corners until the curvature of it took up the whole field of view and I could somehow sense I was really near to it which would set off some weird but incredibly uncomfortable sensation which I honestly can't find words for whereby I'd be trying to wake myself up. This was a recurring thing, happened lots of times, same thing every time. Sometimes when I'm in a stressful situation for example starting a new job, sat talking to someone and being blasted with information more quickly than I can take it in, I kind of gloss over / zone out and sometimes see like mental pictures across what I'm looking at like some kind of cartoon or moving pattern or something coming out of my imagination.

I also have some other weird things, like recall of dreams from years ago as if they were normal memories. Sometime's I can think back to specific places and all the detail etc then realise it hadn't actually happened, it was a dream, but one from like 20 years ago. I can remember, vividly some of the dreams I'd had when I was a really small child, at the start of infant school.

Anyway, I've gone a bit off on a tangent here. I was wondering about the visual disturbances (which I've honestly only just realised aren't there for most people) and if this is related to or common with autism / neurodivergence or if it's something else entirely. I'd heard tinnitus might be a common overlap with ADHD for example. Just interested really as it's not really something that comes up in conversation with people very often.

It doesn't look like there's much they can do regarding the visual snow so sadly appears like this is probably here to stay now like the tinnitus.

Anyway, sorry for cluttering up the forum with this stuff.

Thanks.

  • in reply to Snowman

    To me, to you, to me, to you.  I gave up alcohol in August 2022 and haven't touched a drop since - nor wanted to.  This obviously also coincides with my autism realisation AND the tinnitus.  When it started, I assumed it would be related to one or the other, but I didn't (nor since) have found tinnitus to be associated particularly with either.  I am hoping the tinnitus will go away - occasionally I entirely don't notice anyway.

  • in reply to JuniperFromGallifrey

    I don't have a smart phone! But I could try the moving around listening to different places test. I never knew one could actually buy a stethoscope, what did I think, they were just provided to doctors? I suppose most things can be bought! Just one of those things one hasn't thought about before.

    My Dad did a bit of sound sampling donkey's years ago (why donkeys?!) which was quite fun.

  • in reply to AuTriker

    Record the sounds with your phone and see if they still exist. Or see if you can follow the sound to the object omitting it. We have an electrical buzzing in the walls of my bathroom and it's more prominent at night. If I put my head to the wall it's much louder. you can always buy a stethoscope for fun and put it on appliances around the house. I have a microphone that collects electrical sounds, they can be manipulated into instruments haha

  • in reply to AuTriker

    Another crazy theory of mine is that we found a way to perceive not real part of complex numbers, that are used to attribute value to many things, expecially electricity. Both parts usually are in a form of sinusoidal pattern shifted in phase, when one goes from 1 to 0 the other goes from o to i.

    Yes it's annoying at times

  • in reply to Deleted User

    Now that's interesting. It wasn't the same time but a couple of years before I noticed the visual snow starting. I stopped drinking and became completely tee-total in August 2019. Haven't touched a drop since. Used to drink a fair amount at one point and a few periods where it probably was a bit excessive (2 litre bottle of cider just to 'switch off' at the end of the day before going to sleep etc for a period of time at one point).

  • in reply to Snowman

    Tinnitus.  Constant.  High pitched.  I started to suffer about 3 months ago.  Not a massive problem to me, but irritating and persistent.  This onset coincided with my realisation of my autistic self.....but also stopping alcohol consumption.

    In terms of visual effects, I get kalidescope effects = a rim or partial rim of coloured shimmering lights "around" the main focus of what I'm looking at.  Also present when I close my eyes.  This comes at random times and lasts about 5-20 minutes generally.  Had this all my life.  Can go a year+ without it or occasionally have 3 or 4 episodes within a couple if weeks.

  • in reply to AuTriker

    Yeah, sorry just meant, it's potentially not linked at all with neurodivergence. Just wondered if it is a thing for other people and if so how much it is. I don't believe the snow to be anything to do with the eyes in so much as I don't believe the tinnitus to be anything to do with the ears. Seems to be a neurological condition from what I can gather - but I might be wrong. 

  • in reply to Snowman

    sorry, i mean i hadn't had problems with having any of the other things they listed along with the visual snow, apart from the tinnitus which. 

  • in reply to Mariusz

    I don't think they're saying there's anything wrong with the other things - halos etc, they're saying that it's likely they're present alongside the visual snow, which is interesting, especially for me as I'd not had any problem regarding any of the other things apart from the tinnitus which is more than tedious. However the snow situation is new to be. Wasn't like this before last year and has lead to an uptick in both anxiety about my vision and also irritability with not being able to see what I am doing properly anymore in specific situations. I wouldn't use the term harm but there's been a definite negative consequence for me with the snow. The other elements just interest me in how they're potentially linked.

  • Don't apologise for cluttering up the forum, it looks like enough of us have this topic interesting, and even if nobody does (on a given day) it doesn't really cause clutter!

    I don't know about the visual things, it has made me wonder what is normal and what is not about own vision!

    I do have very vivid dreams sometimes, and the memory of them can seem as real as memories of real events. I usually know the difference. although just occasionally I have thought something was a real memory but it doesn't match others' and then I wonder if I dreamt it. I also can remember some dreams fro infant school. I love talking about dreams! I am tempted to recount some but then i think i would be cluttering up your thread so i will resist!

  • in reply to Mariusz
    Mariusz said:
    ghosting makes reading difficult sometimes in black and white

    I find that. The worst is white text on black, I can barely read that at all, and it seems quite common on youtube. I often tilt my head to vary the angle of the lines as i read the forums! And I have my screen brightness turned way down.

    Mariusz said:
    ability to hear flow of electricity

    I have wondered that about the sort of hissing or high buzzing I can often hear. But it also might be the lack of a sound, like when I put the laptop away, I often get it at night, sort of like a negative afterimage but for sound? I guess I ought to try and find somewhere properly quiet outside and see if I hear anything, but that is hard to find. Even the birds or the breeze rustling leaves can be loud! So I don't know.

  • I notice more of a graininess to my vision this time of year, I think because it’s darker outside and indoors. I don’t think it is as bad as visual snow. If you go to the right kind of optometrist you may be able to get coloured glasses for visual snow but it’s not a thing your typical specsavers etc can do. Maybe try different lightbulbs as suggested, I prefer bright white bulbs but most seem to be warm white. Tinnitus I’ve had permanently for a long time but mostly because of going to a particularly loud gig, but I’ve had it intermittently quite loud for a minute or so at a time since I can remember. My Dad always said it was earwax moving but I think that’s been disproven now

  • Hi

    Looks like doctors found another way to stigmatise things they can't explain, the funniest is thay they're are unable to say in what way it's harmful, so the only harm is done by stigma basically

    I had many of those symptoms since I remember and I don't see anything wrong about them. If you know of any real harm though I'd like to hear, except of course the risk of walking under a passing car at night because they blinded you with their lights. But that is the same for those without those symptoms as well.

    I find what's described as halos very pretty. and ghosting makes reading difficult sometimes in black and white, so I change colours to be less constrasting. Grey is nice.

    I speculated about tinnitus a lot, and I think it might be ability to hear flow of electricity, so triggers around devices that drain more power

  • in reply to JuniperFromGallifrey

    oh that's interesting. will try with the other bulbs etc to see if it feels better / takes the edge off - or in this case puts the edges back on :) 

  • Tinnitus can be an overlap with inflammation. But I've recently come across some studies trying to cure it, which would be amazing. I work in sound which probably helps some to forget about the ringing, but it never goes away. It does get louder with a glass of wine.

    And also quite vivid dreams. I wrote them down for a while and kind of wish I'd get back to that habit, they're like a whole other life. Some I recall more than others. 

    As for the fuzziness, though, I'd suggest a halogen lamp. Or a few for the evening. Our eyes are designed to work with a broad spectrum and into infrared which helps the retina see with contrast (UV for brilliance). There's some debate around the dangers of infrared in LEDs - it's expensive to manufacture. So, with little IR things will appear more fuzzy. This may not be your situation but it couldn't hurt to try. I have light sensitivity (and am part of this org: lightaware.org) and started learning more when a friend mentioned being colourblind. I discovered he  could see in the dark a little better than most and that took me down a rabbit hole :)