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Does visual snow syndrome overlap with ME/CFS?

Discussion in 'Neurological/Cognitive: Brain Fog, Concentration' started by strategist, Jan 1, 2020.

  1. strategist

    strategist Senior Member (Voting Rights)

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    I read about this syndrome because I'm becoming light sensitive, can't see in poor light conditions and have intrusive visual snow and disturbances. The association between light sensitivity and ME/CFS is well known, I'm wondering how many others have some of these additional symptoms?

    An exaple of visual snow:

    cxjgjyzklbmpl1hydpit.jpg

    Another example
    Visualsnow-80.jpg

    An example of entoptic phenomena:



    The afterimages in this syndrome are different from the normal afterimages that everyone has. Normal afterimages occur only when staring at a high contrast image and are in complementary color. An example of abnormal afterimages:



    (I don't have these abnormal afterimages)

    In addition to this, there is also light sensitivity and difficulty seeing at low light conditions.

    There appears to be some evidence this is a brain problem rather than an eye problem.

    https://rarediseases.org/rare-diseases/visual-snow-syndrome/
     
  2. alktipping

    alktipping Senior Member (Voting Rights)

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    I have had floaters since the very first day I became ill . and some visual disturbances in the first few years . now the floaters are only really noticeable when looking at white backgrounds or the sky .
     
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  3. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I've had floaters ever since I can remember and long, long before I got ME. I've had routine eye checks and eye health is fine.

    I have always been sensitive to bright lights and certain lighting triggered migraines since about 20 years before ME onset.

    About a decade ago my migraines changed and at the same time I started to experience this visual snow. Originally it was just on very bright days, but it can also happen on dull days. Wearing sunglasses helps but it can still be noticeable. Sometimes it's extremely distracting, at others barely there. I don't have it all the time. As this was new onset & because of the migraines I saw a neurologist. I was advised this was "migraine activity" in the brain even though it happened independently of any other typical migraine symptoms.
     
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  4. James Morris-Lent

    James Morris-Lent Senior Member (Voting Rights)

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    Visual snow was a symptom that popped up for me when I wasn't feeling quite right for a period of about 6 months before I was sick in earnest. It's not an issue for me now, though.
     
  5. Forbin

    Forbin Senior Member (Voting Rights)

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    I have occasionally experienced the afterimage thing. It has seemed connected to the tail end of a viral infection, or otherwise being more run down than usual. It might have something to do with sleep deprivation.

    Odder, for me, is "flickering vision," in which image brightness rapidly fluctuates like you're watching an old silent movie. Prior to the illness, I would sometimes see this for a few seconds when moving from a dark area to brighter area, or vice versa. It seemed to be part of adapting to very different brightness levels and I considered it normal. After ME, I had rare occasions where this kind of flickering persisted for 10 minutes or more while just standing outside. I'd never had that before.

    This might also be an effect of a sleep deprivation. I think lack of sleep makes you more light sensitive if it goes on long enough, and enough accumulated "unrefreshing sleep" might do the same.
     
    Last edited: Jan 2, 2020
  6. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    I looked into the connection about 18 months ago when my visual disturbances started. You'll find some forum threads I started if you do a search on here. Another area that desperately needs looking into in more detail. The only work I saw on ME and vision was from Leicester and it didn't involve these sorts of disturbances.

    One thing I did read about a lot was possible connection between visual snow / disturbances and tinnitus, another primary symptom for me. I found this framework for describing these phenomena interesting because I also suffer from OCD (https://en.wikipedia.org/wiki/Thalamocortical_dysrhythmia)

    Oh and these issues are almost definitely brain rather than eye issues. Even floaters can be a brain issue - not being able to filter these shapes out.
     
    Last edited: Jan 2, 2020
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  7. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    PS Thanks for posting the entopic phenomena video. I have this and didn't know it had a name! Like swirls of ink of slightly different hue moving around when my eyes are closed.
     
  8. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    I was about to start a thread on this myself! Visual snow preceded by ME but has currently worsened along with my brain fog. I get tinnitus and ocular migraines too, both of which are apparently connected to visual snow.

    I never realised it was a thing for years. I assumed that was just how the eyes interpreted points of light coming in on the retina and forming a picture. Since it's got worse, I've now realised it's obviously not.

    Eye tests, etc, are all normal. Fatigue makes it worse but it's not blurriness. It's not definitely 'noise' in the image.
     
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  9. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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  10. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    I do get a slight bluriness on bad days. This is perhaps the only vision symptom that is an actual eye (or rather eye muscle) issue.
     
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  11. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I have tinnitus too but didn't connect them. I've had tinnitus since young childhood. It started after I had both tonsils and adenoids out.

    The blurring is definitely related to ME. As eye movement and focusing are controlled by muscles I've always assumed it's down to that. I have regular eye tests and make sure they know about it, but my eyes are healthy. I do have to be careful though as my pupil distance changes slightly when my eyes tire and that makes a big difference when they take their measurements for correction lenses.

    Re. the visual snow type symptom - I also get burn out spots when it's bad. Like someone burning an old celluloid film from the back with a cigarette. The neuro reckoned it was all part of the same thing. In my case at least.
     
  12. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    I should say, I get blurriness when fatigued too, but the core visual 'snow' isn't that. I.e., it doesn't feel like I need glasses. I tried glasses and they gave me a headache without making a difference.

    I suspect the blurriness is due to something getting tired and not focussing properly. But the visual snow seems to be there even without that.

    The best way to describe it is as a poorly tuned in or grainy TV picture. Or an image with low resolution blown up too big. Or like the air is alive with innumerable tiny atoms that are naked to the eye somehow.
     
  13. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Like you, my eye muscle fatigue and "snow" occur independently. I need to wear glasses anyway and have done since before this all started. I find sunglasses can help reduce it and make less distracting.

    Edit - though my shades have prescription lenses too.
     
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  14. Badpack

    Badpack Established Member (Voting Rights)

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    thats exactly how i see, im sick for 5years now with cfs. And about after 2 years my sight worsened a lot and looks pretty much just like those pictures now
     

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