Visual Snow: Anyone experience this?

Posted by agraffia @agraffia, Jul 17, 2012

Has anyone ever experienced "visual snow"? My daughter suffers from this and sees it 24/7. No doctors seem to be able to help her. We've been everywhere in Chicago, and nobody can help her so they left it with "sorry, she'll have to learn to live with it". She's only 12 years old! So I'm trying Mayo now. Just wondering if anyone out there has ever experienced this; apparently it's rather rare.

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@grace02

Hi. My daughter, Grace, is 11. She got diagnosed with Hashimoto this summer, after having the seeing dots 24/7 symptom, about 2 months earlier. She still has the dots full time, but does not see them in outdoor lighting, unless it is dark. She sees full time in the indoor lighting. I am feeling hopeless today about the dots. We are working with a chiropractor and nutritionist. We have gotten rid of the dizziness, nausea, and leg pain symptoms. So that is really hopeful. I would love to connect with the mom that wrote about her 12 year old (at the time) daughter who has Hashimoto w/dots. I would ask, what is helping now? Recommendations? We are on the AIP diet and trying the natural route for now, mainly because Grace is functioning through the dots. Any chance your daughter would be interested in a fellow dot seeing pen pal? My daughter often feels alone with this. Thanks. Melissa

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@grace02 Hi, Melissa. I have had spots in my eyes since about age 8 or 9. No one could diagnose, until just the last few years. We believe now that my hATTRwt (primary systemic inherited Transthyretin wild type Amyloidosis) is to blame. It gets into various tissues around the body, including the layers of the eyes (cornea, iris, etc) and causes problems. It usually does not show itself until later years, but can show up in early teens or before. Mine showed up around age 8, but did not grow rapidly. Now it is all over my body, but I am 77. It is a protein misfolding disorder, and will take an outfit like Mayo-MN or Mass General, Sloan Kettering or Fred Hutchinson to diagnose it. But you can start with a simple blood test, SERUM FreeLite@ chain assay from Bindings UK. At her age, any reading above 1.0 should be a warning. My eyes are still going worse, but very slowly. For a time in my early 20s I could hardly see to drive because of the spots in my eyes.

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@grace02

Hi. My daughter, Grace, is 11. She got diagnosed with Hashimoto this summer, after having the seeing dots 24/7 symptom, about 2 months earlier. She still has the dots full time, but does not see them in outdoor lighting, unless it is dark. She sees full time in the indoor lighting. I am feeling hopeless today about the dots. We are working with a chiropractor and nutritionist. We have gotten rid of the dizziness, nausea, and leg pain symptoms. So that is really hopeful. I would love to connect with the mom that wrote about her 12 year old (at the time) daughter who has Hashimoto w/dots. I would ask, what is helping now? Recommendations? We are on the AIP diet and trying the natural route for now, mainly because Grace is functioning through the dots. Any chance your daughter would be interested in a fellow dot seeing pen pal? My daughter often feels alone with this. Thanks. Melissa

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Welcome to Connect, @bintuan
I’m sorry that your daughter hasn’t found answers to her vision issues. Is she still in school?

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@grace02

Hi. My daughter, Grace, is 11. She got diagnosed with Hashimoto this summer, after having the seeing dots 24/7 symptom, about 2 months earlier. She still has the dots full time, but does not see them in outdoor lighting, unless it is dark. She sees full time in the indoor lighting. I am feeling hopeless today about the dots. We are working with a chiropractor and nutritionist. We have gotten rid of the dizziness, nausea, and leg pain symptoms. So that is really hopeful. I would love to connect with the mom that wrote about her 12 year old (at the time) daughter who has Hashimoto w/dots. I would ask, what is helping now? Recommendations? We are on the AIP diet and trying the natural route for now, mainly because Grace is functioning through the dots. Any chance your daughter would be interested in a fellow dot seeing pen pal? My daughter often feels alone with this. Thanks. Melissa

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Yes. She is in school. How is vision snow research going? any good news?

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@grace02

Hi. My daughter, Grace, is 11. She got diagnosed with Hashimoto this summer, after having the seeing dots 24/7 symptom, about 2 months earlier. She still has the dots full time, but does not see them in outdoor lighting, unless it is dark. She sees full time in the indoor lighting. I am feeling hopeless today about the dots. We are working with a chiropractor and nutritionist. We have gotten rid of the dizziness, nausea, and leg pain symptoms. So that is really hopeful. I would love to connect with the mom that wrote about her 12 year old (at the time) daughter who has Hashimoto w/dots. I would ask, what is helping now? Recommendations? We are on the AIP diet and trying the natural route for now, mainly because Grace is functioning through the dots. Any chance your daughter would be interested in a fellow dot seeing pen pal? My daughter often feels alone with this. Thanks. Melissa

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Here are some articles about Visual Snow Syndrome and related research
– NIH Genetic and Rare Disease Information Center https://rarediseases.info.nih.gov/diseases/12062/visual-snow-syndrome
– PubMed search https://www.ncbi.nlm.nih.gov/pubmed/?term=%22visual+snow%22

This 2018 article “Visual snow syndrome: what we know so far.” https://www.ncbi.nlm.nih.gov/pubmed/29140814 looks like it would be interesting, but you have to purchase the paper to read it (paywall).

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Hello, Yes – my 8yo son has visual snow. We have also been to many specialists who have never heard of it and (blessedly) can't find anything else wrong: I diagnosed him based on research. He describes exactly what others with VS do. Also, he gets infrequent migraines with certain triggers (usually heat and dehydration) which are hereditary in our family. I can help him manage the migraines (I get them, too) but the snow is tough. Wondering if people have practical suggestions for school and reading? I've been researching tinted glasses, e-readers (larger font and color contrast help), magnifying glasses, etc. It seems unlikely that we can cure the snow, but that we could assist in the eye strain that comes with it.

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@woodgreen

Hello, Yes – my 8yo son has visual snow. We have also been to many specialists who have never heard of it and (blessedly) can't find anything else wrong: I diagnosed him based on research. He describes exactly what others with VS do. Also, he gets infrequent migraines with certain triggers (usually heat and dehydration) which are hereditary in our family. I can help him manage the migraines (I get them, too) but the snow is tough. Wondering if people have practical suggestions for school and reading? I've been researching tinted glasses, e-readers (larger font and color contrast help), magnifying glasses, etc. It seems unlikely that we can cure the snow, but that we could assist in the eye strain that comes with it.

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Hello @woodgreen — welcome to Connect. Thank you for sharing your story. While I don't have visual snow or know much about it, I happened to run across a YouTube video that may provide some help. Hopefully some others will jump in and offer more suggestions. Have you had a chance to read through the discussion above your post?

How I cured my visual snow and migraine auras – YouTube
https://www.youtube.com/watch?v=YtnDfPBtQ54

John

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I have experienced constant auras of white light accompanied with extreme dizziness and confusion. It has left me incapacitated because to be able to cope with it, I had to lay down in bed and close my eyes and tried to fall asleep. I have always woken up to residual auras of white light but Thanks to God, they are much less now. However I'm 56 and I have Chronic Lyme Disease Complex. If you have any questions or if you want to tell me any more about your daughter (for example – age, height, weight, etc.], you may either reply back to me here or send me a private message so I can email you. I truly do hope that God answers your prayers for a diagnosis and I sincerely pray for you and your daughter and for your daughter to completely recover. God bless you always!

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@mommaj

I’ve had this since early childhood – as long as I can remember. It’s getting worse with age. (I’m 46.)

It wasn’t until my 20s when I realized it wasn’t normal. Then the eye doctors I asked had no clue what I was talking about. Only yesterday did I find a name for it. Here I had begun to believe I was the ONLY one — so glad there are others!

There doesn’t seem to be a cure at this time, or even much in the way of research. I have read there seems to be a connection with auto-immune disorders, particularly Lupus. I have several symptoms of Lupus including butterfly rash and positive ANA, but it doesn’t seem doctors want to diagnose it without kidney damage. (Which makes no sense to me.)

Have you had much bloodwork done on your daughter?

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Hi. I am just stumbling on to this. My 16 year old suffers from visual snow as well and we live in the chicagoland area. We have had tests done. Her vision is 20/20. Please let me know if you have had any more luck with research and doctors. Thank you

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My wife suffered from a migraine about 60 days ago and the VS has never gone away. She doesn’t ever get a headache but does occasionally get a severe aura. Has anyone had any luck being treated for this? We are currently trying to get seen in Michigan and Milwaukee to resolve this since it has been so debilitating for my wife. She is so depressed she wants to give up.

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@peterpan226

My wife suffered from a migraine about 60 days ago and the VS has never gone away. She doesn’t ever get a headache but does occasionally get a severe aura. Has anyone had any luck being treated for this? We are currently trying to get seen in Michigan and Milwaukee to resolve this since it has been so debilitating for my wife. She is so depressed she wants to give up.

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I feel for her it’s very depressing. Same thing is happened to me in April 2017 started seeing large spots with a bad with a headache. Then to follow was my visual snow that will not go away. I had a good 4 months recently where I wasn’t noticing it anymore it was after a steroid injection in my neck for my disk bulge. Doctors wouldn’t connect the two but I think it may be related. Two weeks ago the visual snow came back bad and it may be because my steroid injection is wearing off. I’m going in tomorrow to doctors office to try Botox for migraines I will let you know if it helps with my visual snow.

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