Visual Snow: Anyone experience this?
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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So sorry to hear about your situation, literally teary eyed as I’m writing this. I do get noise sensitive from time to time, especially when migraines come around. There are days where I just want to hide away from all stimulation, at the same time all I want is my old life back and be out with friends. I feel pulled in two separate directions and all I want is a little relief from it all. I’ve received a referral to be seen at UCSF headache and VS center but was told they don’t have availability until Oct, so discouraging :[
Wish you well Erika, I hope things start looking up for you and all of us here.
I have had broadband visual snow since I was a small child always with red in it. I would lie in my bed at night looking at it.
Never knew there was a name for it until maybe 10 years ago with the internet. Thought everyone had it. I am 47 and though it is there I dont notice it much now. Even as a child I had a lot of anxiety & the more anxious I am the worse it is. I do have an autoimmune disease, Psoriasis & Psoriatic Arthritis. As for medications causing it I had obviously not taken any hallucinations at age 4. I do think there is a link to anxiety. I do take medication for depression / anxiety but I do not think it affects the snow one way or another.
Hello @amyjo, welcome to Mayo Connect. We are glad you found us. Connect is a great place to share your story, ask questions and find out what others with similar conditions to treat their health concerns. I had never heard of visual snow until I saw these posts on Connect. I found this YouTube video – A presentation on visual snow syndrome and its relationship to tinnitus. Also, the management of bothersome symptoms using mindfulness practices like yoga and meditation. Presented by Matthew Renze at the 24th annual international Management of the Tinnitus and Hyperacusis Patient conference from Dec 2016:
Hello, I have had visual snow since childhood. Only since Eye on Vision Research did I know that I was not alone with this condition. I am waiting for an appointment at Mayo to see if this is related to auto immune disease. Back in 1984, I was given a dexamethasone suppression test to see if I suffered from clinical depression. The response that I got from the dexamethasone was life changing. I remember asking the nurse what the h*** he gave me because I very quickly experienced a calm that I had never had before, sense of well being, and remarkable ability to think “effortlessly”. I am ADD and suffer from anxiety. The most profound thing was when I went to bed that night in a dark room, for the first and only time in my life, my constant companion of “TV fuzz” was gone. I could see objects in the room clearly with no grainy visual affect. That day changed my life and allowed me for one fleeting moment in time to understand that this must be how other people experience life, no grainy vision, no problems thinking clearly, and the sense of well being that was life changing. Since that time, I have told this story to every singe doctor (eye specialist, psychiatrist, etc.) and no one had a clue what this was and kept sending my to psychiatrists or thought it may be an aura connected to my migraines. Now, with the attention on the new research I have found doctors that actual believe me and believe the experience was real and significant. You have no idea how I was made to feel like this was all in my head. I understand that dexamethasone reduces inflammation but also works on a molecular level impacting signal processing and triggering gene function. I have offered myself up for research and personally believe that the benefits I received from dexamethasone somehow corrected the neural “connection” which improved my signal processing with vision, thinking, emotion. I think more research needs to be done in this area, but there is no diagnostic code for “visual snow”, so this may still take time for standard of care medicine to embrace what I know to be true. I will try to post after going to Mayo to see if anything of significance comes about. Best of luck to your daughter.
I have had visual snow for about a year now and I just thought I was imagining it. Recently though Ive been having constant headaches( 24/7) also which I think I may have been getting this past year but I was dismissing it. I also have a problem with anxiety; I feel down very often. I also remembered recently that I got banged on the head this past year ( no concusion)
any ideas if these things are connected?
ps I think my peripheral vision may also be decreasing
I wanted to give everyone a quick update as to my symptoms with visual snow and treatment.
I was seen by a UCSF Headache specialist – their doctors were part of Dr Goadsby’s team in the 2014 research on VS – unfortunately I did not get any help other then a prescription for Nortriptyline. To be honest I haven’t tried it, mainly for the reason that I do not want to be on antidepressants. This left me dealing with all my VS symptoms with no resolve.
I am not working due to my symptoms and inability to know how I will feel each day. Because I am not working I have medi-cal which is the bottom of the barrel in terms of health insurance, with only the option to see clinical doctors. Visits with Primary Doctor, who I’ve gotten into arguments with, have resulted in nothing more than him saying he can’t help me there is nothing he can do – verbatim.
I am 36 years old and this is the first time since I started working at 16 that I’ve been unemployed for more than a year and have ever been on disability. Both my professional & personal life have taken a hit, sad story I wont’ go into.
After speaking with people on facebook with similar issues I’ve found two possible options as a cause to VS:
The first is Lyme disease. I spoke to a gentlemen in Ontario who had VS along with all the symptoms (VS, BFEP, Eye Floaters, light sensitivity, ghosting/trailing, flickering, stiff neck, headache, tinnitus, fatigue, muscle spasms, joint pain). He was diagnosed with Lyme disease and after 3 months of IV antibiotic treatment is free of all his VS symptoms with the exception of a little VS and his floaters. This led me to get tested through iGenx lab in Palo Alto by way of an LLMD doctor. From what I’m told many tests for lyme come back negative so it’s important to keep testing. My tests with iGenx came back indeterminate and still going through another round of testing. I was bitten by a tick late last year around the same time my symptoms started so this is why I’m pursuing Lyme disease as a possible culprit.
The second possibility is metal toxicity specifically Mercury Poisoning. I began to look into this after speaking with a lady whom I met through an acquaintance. Again I went through all the symptoms that I had and verified that she indeed had the same. This lady was local to me and I was able to meet in person. She was advised by a friend to remove the metal fillings in her mouth as they could possibly be exposing her body to mercury. After about a month of detoxing from heavy metals and getting the fillings removed she was back to her old self. No VS symptoms with the exception a few eye floaters.
I don’t pretend for even a moment to know how VS comes about or what causes it. I only know what I’ve seen and am hopeful that lyme and metal toxicity are possible options for me to be rid of my god awful symptoms.
If any of you suspect that lyme infection, metal toxicity might be a cause to VS to you or a loved one please pursue it. I am now in the process of getting my metal fillings removed and will update you if there is any improvements to my symptoms.
Wish everyone well, much love.
I wanted to thank you for following up and posting this. How is your daughter doing? My 10 year old son has been experiencing visual snow in the mornings the last few weeks. We’ve been convinced he has a autoimmune condition of some kind for several years now, but haven’t been able to find any positive antibodies.
What symptoms or indications lead you to believe that your son has an autoimmune condition?
You may be interested in the discussions in the Autoimmune Disorders group as well: https://connect.mayoclinic.org/group/autoimmune-diseases/
Is he still experiencing visual snow?
How is your daughter doing? was her vision snow gone?
She started have leg/knee pain at night, every day, half year ago, and lasted for three and half months. We saw 10s specialists and can’t be diagnosed. Finally, the leg/knee pain gone. She complained about floaters and flash light a month before leg/knee pain. She saw several eye specialists and eye is normal. She complains that she can see lots a small dots on the subject, and dots are getting big. We already see all kinds of specialists, and run out of choice. Hope you or someone can share their experience. Thanks, Bintuan