Visual disturbance research

A few months ago I came across some research on Visual Snow being done in the UK by the dept for Neuroscience at King’s College in conjunction with the Eye on Vision Foundation.  I’ve talked about my severe floaters here on my blog but that’s not the only issue I have with my vision and this research, amongst other things, is looking at the correlation between various types of ‘visual aura’.

Auras are a kind of hallucination – your eyes are seeing things which simply aren’t there but trust me when I say they are all too real to you.  There are various kinds of visual aura and, as per bloody usual, I have most of them – yes, I know I’m greedy 😉

VISUAL SNOW

The research is focusing on Visual Snow, which is a hallucination which looks just like the name suggests – falling snow or moving white noise.  Luckily for me mine is only  mild and I only really notice it in low light against dark objects and if I concentrate on it, but for some people it is hugely debilitating and they spend their whole lives trying to see past the bits.  Mine is white snow but for other people it’s multi-coloured.  Here is what mine looks like against a black background (you will have to concentrate for a few seconds on the black square for the snow to become visible):

BLUE FIELD ENTOPIC PHENOMENON

I noticed this for the first time earlier on this year and it totally freaked me out.  It was a lovely, sunny spring day and my friend and I were sitting down by the river.  I lay back on the grass to gaze up at the blue sky……….and saw dozens of white flashing wriggy dots that looked a bit like small worms!  My initial thought was that I had a parasite in my blood and the second thought was that my retina had become detached, something those with Ehlers-Danlos Syndrome are prone to, but luckily I was only at the hospital the day before with my floaters and had had a thorough eye exam so knew my retina were actually fine.  I came home and went on Google only to discover Blue Field Entopic Phenomenon – what I was seeing were leukocytes moving in the capillaries of my retina.  I only have BFEP when I look up to a bright blue sky and mine looks something like this – the white dots really are very bright and sparkly:

FLOATERS

I’ve talked about my floaters before here on my blog.  Floaters are caused by the vitreous gel inside the eye which is clumping together and causing a shadow to be cast on the retina, although I can weirdly even see them when I have my eyes closed and it’s dark.  Like all shadows they are blurry and if there are large or numerous floaters this can cause problems with vision.  Here is what my eyesight looks like due to floaters – they drive me absolutely and utterly insane:


The scary thing is that there is currently zero research being done on floaters.  None.  Yet they dominate my life, have left me feeling depressed, cause severe eye strain and headaches, make me feel dizzy and disorientated due to the blur they place on my vision and have made what used to be pleasurable hobbies, like my photography and reading, difficult at best and impossible at worst 😦

MIGRAINE AURA

I started with aura migraines in my late teens and have been having them ever since.  The hallucination usually starts off as a small flashing light in the periphery of my vision which you can see in the first picture but within minutes covers most of my sight.  They can happen at any time and have frequently woken me from sleep – I actually dream I have flashing lights and wake up suddenly in the wee small hours to find the lights are real and I’m starting with a migraine.  I don’t have head pain with aura migraines (unlike my common migraines which are excruciating) but they do make me feel spaced out.  When you read about aura migraines the blurb usually says they only last a few minutes but mine can last anything up to an hour or even longer unless I can manage to lie down with my eyes shut in a dark, quiet room or eat some carbs, something like a slice of toast is good.  Apologies for the poor second image – it’s the best I can do, but my actual aura is like having a kaleidoscope in my eyes!

Alongside these visual disturbances I also suffer from other sight problems, including:

  • Light sensitivity (which, when my ME was severe, was like living with a firework display in my brain 24/7, even with my eyes shut)
  • Difficulty seeing in low light
  • Halos round lights at night – particularly bad when driving
  • And related symptoms like tinnitus and headaches.

There has to be a correlation between all these symptoms – when you have one it’s much more likely you’ll have some, or all, of the others and I for one am desperate for answers and treatment to be found, particularly for my floaters.  It will be just my luck, though, that the treatment will involve some drug or other which I won’t be able to take because as you know my mast cell disease causes me to have anaphylaxis to just about every medication known to man :-/  However, in taking part in this research I hope I’m helping towards the understanding of these conditions and that people in the future won’t have to suffer in the way I do.

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4 thoughts on “Visual disturbance research

  1. melody

    Thanks, Jak, for another really helpful and interesting post. I didn’t know what those white flashy, wormy things in the sky were called before, but I’ve had BFEP for a very long time. I also have blinding aura migraines with brilliant geometric zigzag colors, somewhat resembling SW Native American style visual design, sometimes with migraines, sometimes without. And I have floaters, too, especially after vitreous detachments, detachments which are supposed to be “normal” and harmless though I don’t think they are. The floaters have faded some, which is a relief, but my worst ones were peripheral–like a flock of birds when I turned my head, but at least they don’t interfere severely with my vision. I have been curious about the research with near infrared, i.e., red light, therapy for helping eyes, which is somewhat controversial. I take red light saunas and find them helpful, they also help my cold urticaria symptoms in that I can turn my shower temperature down afterwards to pretty cool and don’t get the usual symptoms. The saunas are very cheap and simple in in that you can build one using just those bulbs for chicken brooder lights, for about $20 each light. However, I don’t know whether it would be tolerable for you, especially to get hot in a sauna–20 minutes in my enclosed canvas sauna makes me sweat–it helps me feel better, though I had to build up to it. If you thought the red light might be tolerable or worth trying you can get a single bulb light and clip it to the back of a chair or other place and use it for spot treatments on various places. (Don’t use LED lights, either, they have a flicker which supposedly can strain the eyes; incandescent or halogen is easier on your eyes.)
    Oh, one other thing, if you can tolerate Taurine (??), I’ve had a half teaspoon or so of it mitigate or alleviate an aura migraine in a few minutes.
    Thought I’d mention these because they are pretty simple and possibly helpful, if they don’t cause you awful reactions.

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    1. Jak Post author

      Unfortunately the heat found in saunas is a no no for people with dysautonomia, but thanks for all the info and I’m really glad you’ve found a few things which have helped you x

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  2. Ellie

    BLUE FIELD ENTOPIC PHENOMENON, I thought it was normal & every one had it! didnt realise it was another malfunction. Ive had that since I was a child. I get migraine auras since age 11, & many many other visual disturbances. I also get a heart beat in my left eye & a pulse in my right ear! more recently is the “rain effect” I can see rain when its not raining. I have a near infra red light for all my back & joint problems, but dont ever shine it on your Thymus, Spleen or appendix. It seems to stimulate the white blood cells into over production. I was in pain for two weeks.

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    1. Jak Post author

      My blue field entopic phenomenon only started this year Ellie – I have no clue what’s set it off.

      The ‘rain effect’ you’re seeing is classed as Visual Snow – it comes in various types.

      Jak x

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