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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Thank you! My questions would be:
1. If developed at a later age (40’s for me), have most experienced a trauma or event that caused their VS? Other than a bad cold and ear infection after visiting a beach with “Red Tide”, that is the only thing I can possibly pinpoint. I did some research on Red Tide, and their has been some correlation to patients presenting in ER with neurological symptoms. Anyone else here have a similar story?
2. Has VS gone away for anyone, or does it just get to a “manageable” state when you identify your triggers? Mine has been constant now for 2 months. Thanks!
Those are two good questions @tnmom75. I'm tagging other members who have posted in this discussion to see if they can offer any suggestions or information for your questions. @peterpan226, @oldkarl, @manalabbass, @erikassf, @margiek and @woodgreen, do you have any information you can share with @tnmom75?
As far as a possibility of red tide being responsible, there is a lot of information that would support your feeling. I did a search on Google Scholar (https://scholar.google.com) for the phrase "red tide neurological symptoms" and it returned a lot of results. Here is a link to all of the results that were found:
Your question has VS gone away for anyone, or does it just get to a “manageable” state when you identify your triggers? Not sure if this is helpful or not so hopefully others will be able to share their experiences.
Everything You Wanted to Know About Visual Snow
National Organization for Rare Disorders – Visual Snow Syndrome
I initially had aurora before what I am told is ocular migraine hit. It happened for no obvious reason and I have never had such a "migraine" or headache that did not hurt at all, before. Initially it lasted for about ten minutes. Many years later it hits suddenly, without aurora and lasts longer, up to 45 minutes now. It is not snow rather a motley or checkerboard shimmery type vision where half the visual field is not there and it requires me to move my eyes about to find the missing elements if at all possible (impossible to read letters in a book when this happens). The issue ends as sudden as it hits…until…I have had via Stanford Univ. Pain Clinc, Botox injections about the forehead, temples and back of the neck in one application. It is not at all as painful as it might seem, the needle is small and the injected amount not much per 32 injections and it is not applied at sensitive areas such as the lips or the nose. It has been long enough since the quick in and out of the neurologist/ anesthesiologists clinic initial injection(s), that I would have have had at least three optical migraines since, but not one has happened since this first treatment. Hardly a statistically satisfactory reason to say it helps; yet I have nothing else to suggest it did not. I am due for the next series of injections…they prefer three sets of injections over several months to see if this novel therapy helps.
I should add in that recently I was prescribed Dapson to see if it helps with a skin issue. It seemed to increase the sensitivity to sun sensed by my eyes. Already bright, it had become almost too much to take especially when driving mid-day and having the sun's reflections from other cars into my neutral gray, normally only marginally effective "flight" grade sunglasses. I was suggested to order red tinted lenses instead for apparently that color blocks out the glare better. The diagnosis was photo sensitivity which happens to also be common as I just read about this issue of snow like vision impairment. Perhaps trying such tinted eyeglass helps with the issue if a specific band of light is in part, causing your daughter's problem; it's is only a guess. I take it that you have seen neuro-opthamologic experts.
I think I do. I’ve never mentioned it before because it doesn’t really bother me, and I kind of assumed everyone sees that way. It’s been there for as long as I can remember. Whenever I look at things it just looks like I’m looking at a TV. When I was younger I thought I was able to see atoms and molecules. I mostly tune it out, similar to how we don’t see our noses. I don’t know if your daughter has a more severe case, but it’s never caused me any issues and not really worth looking into or medicating.
I have this sometimes. If I close my eyes it's like I'm driving in a winter storm sometimes I can see it with eyes open. Doctors never found any cause. It doesn't affect my gision but if it does for you get your eyes checked.
I truly pray for help for your daughter. It must be so frustrating, especially at her age. I had cataract surgery 2years ago and recently had an experience of seeing different patterns – net on the walls, snowing in my livingroom, etc. was told it was floaters. I finally found a doctor who lasered buildip from my artificial lens. That ey was perfect but now the other eye is very blurry. I don’t have an apt till the end of Feb. i know this is not your daughter’s problem. I wish it were because it is easy to fix. I have ocular migraines several times a day. I know none of this helps but i do understand what all of you are going through. I will keep her in prayer.
My husband had floaters & got rid of them with “eye vitamins.” I heard a doctor say that a carrot a day will get rid of them. I pray that this works for you.
Is the eye with the snow covered at times so no light goes through? I had similar issue with a brain problem not eyes and having migraines. The doctors had no answers so I figured it out myself.
I wanted to tell Danny and others that I have had visual snow for at least 40 years. It bothers me more in low light, when I'm tired, under fluorescent lighting, and seems to get worse with stress. I'm sorry you are suffering and that it is affecting your life negatively. In my case, no one knew what it was (because it is thought to be very rare), and I learned to mostly ignore it, though it does bother me at times. I think doing meditation, yoga, mindfulness, or anything else that takes you away from the worry is a great idea. Maybe someday they will figure out effective treatments.
I am glad to hear you have found a remedy that works for you. Continue your methods for destressing. Seems to be a big help. The neuro ophthalmologist told me it didnt matter if I covered the eye causing the double vision so I learned by trial and error. I was told it was a brain issue and not an eye issue. That eye had become sensitive to light after my AVM. I covered the eye with a patch for over a month to avoid the double vision. In time, I discovered the longer I had the patch on, the snow in that eye increased and got worse. The snow was very bothersome so I decided to remove the patch. At first, the vision of snow was very strong in that eye but slowly it diminished and went away. I was so relieved. I now have both eyes uncovered and see no snow. My sensitivity to light is not as intense but it is still there. I prefer no snow over the sensitivity. It is much easier to deal with.