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.

Danny

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.

Hi @pollyetal
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?

Hi, Melissa,
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

@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.

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

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

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).

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.

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

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!

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