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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Is it snow or dark snow? I see a bloody looking blob in my left eye.

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@brendaf

Is it snow or dark snow? I see a bloody looking blob in my left eye.

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That sounds like something related to your retina.
Thank you,
Jen Ambrose

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@brendaf

Is it snow or dark snow? I see a bloody looking blob in my left eye.

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Go to a retina specialist now!

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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. My daughter is now 15 and we know she does have Hashimotos Disease which is an auto immune disorder. Apparently it’s now known that a side by product of hashimotos is the visual snow. She has received some relief from taking topomax. This was prescribed by her neurologist. Hope this helps.

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@laschroeder

I don’t know whether this is in the same category, but my granddaughter, age 13, has had problems with “flashing” eyesight. She recently saw a strobe light and said that’s how she sees. She has blackness rather than snow. She has also described an experience where her field of vision is covered with overlapping black circles (light spaces in-between), and a “sparkling” effect in the black areas. This happens only once every several months. Her flashing started about 2 years ago and was intermittent. She went through this last summer without the flashing, but it started up about three weeks ago and is now 24/7. She’s been to a number of doctors, even a neurologist at MD Andersen, but no diagnosis. Migraine headaches was suggested and she was put on medication, which caused severe forgetfulness, so she came off of that. I will check out the UCSF research, but can empathize with your frustration in getting help for your daughter. My granddaughter’s school won’t provide any help for her until she is classified IEP, which requires a diagnosis. Her parents are working on getting her help under a 504 classification. Like you, I would appreciate hearing from anyone who may have any experience with this.

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Hi. Have you gotten an IEP established for your granddaughter? We have an extensive 504 plan for my daughter due to visual snow. Her plan includes rest time while taking tests, all print outs on colored paper, and extra time. We were also having trouble getting the right diagnosis but we went to her regular pediatrician who gave the right letter because she said while we try to figure out the diagnosis, there is no dispute she can’t see. So she wrote us a letter listing temporary blindness. The schools could not argue against that diagnosis. Hope this helps.

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@laschroeder

I don’t know whether this is in the same category, but my granddaughter, age 13, has had problems with “flashing” eyesight. She recently saw a strobe light and said that’s how she sees. She has blackness rather than snow. She has also described an experience where her field of vision is covered with overlapping black circles (light spaces in-between), and a “sparkling” effect in the black areas. This happens only once every several months. Her flashing started about 2 years ago and was intermittent. She went through this last summer without the flashing, but it started up about three weeks ago and is now 24/7. She’s been to a number of doctors, even a neurologist at MD Andersen, but no diagnosis. Migraine headaches was suggested and she was put on medication, which caused severe forgetfulness, so she came off of that. I will check out the UCSF research, but can empathize with your frustration in getting help for your daughter. My granddaughter’s school won’t provide any help for her until she is classified IEP, which requires a diagnosis. Her parents are working on getting her help under a 504 classification. Like you, I would appreciate hearing from anyone who may have any experience with this.

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Yes, she has had an IEP for a while now, and it is helping. Thanks for
sharing your suggestions! Still no answers, as I know from reading other
posts.

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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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Hi @grace02! I think @agraffia is who you want to speak with. Maybe the two of you can connect and discuss your daughters’ situations. Hope you find some comfort in each other!

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Hi Grace. I’m the mom who started this post about the visual snow. I wish I had better news for you but there is no cure we have found. We did try topomax and did see some benefit from it but not much. The side effects were probably worse. My daughter is 16 now and what I can say is now she has learned to deal with it and it doesn’t even bother her that much anymore. I think time and maturity helped her brain adapt and allowed her to handle it better. Kelsey, if you read this post, feel free to share my email address with Grace. I’m happy to talk to her about it. Just wasn’t sure I should post my direct email here.

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@kelseydm

Hi @grace02! I think @agraffia is who you want to speak with. Maybe the two of you can connect and discuss your daughters’ situations. Hope you find some comfort in each other!

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Thank you so much!  Melissa Patterson (Grace’s mom)

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HI! I’m Margie. My daughter Chloe is 14 and has had this undiagnosed Visual Snow for years. Her vision is 20/20 and she has had an MRI on her brain at the age of 9. I wondered if you have had any new developments int he past year.

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@margiek

HI! I’m Margie. My daughter Chloe is 14 and has had this undiagnosed Visual Snow for years. Her vision is 20/20 and she has had an MRI on her brain at the age of 9. I wondered if you have had any new developments int he past year.

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Welcome Margie. I hope @agraffia @grace02 will return to give you an update on any new developments. In the meantime, can you tell us a bit more about your situation? What specialists has you daughter seen? Have any suggestions or diagnoses been investigated? Solutions?

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