Visual Snow: Anyone experience this?

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.

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

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.

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?

Hi, I'm Julie. My daughter Rachel just turned 17 and has Visual snow. The VS started for no apparent reason around May of 2015 right around the time of puberty for her. She hasn't had any head trauma, and she doesn't really have migraines - on occasion after her acro classes. We first noticed something was going on when she felt like her contacts weren't doing the job and we went to the optometrist to get a stronger prescription. Rachel went through battery of eye tests but none of the eye doctors were able to give us any information so my daughter went on the internet and pretty much diagnosed herself. Since then we have seen a neural ophthamologist, Physical therapist, therapeutic massage, dry needling, and chiropractor. The massage helped a couple of times, but that was it. She had an MRI but nothing showed up. Also tried a muscle relaxer for her neck muscles but Rachel only tried a couple of times and didn't like feeling groggy. The physical therapy worked on her occipital lobe region and was able to make the snow worse but not better. I am investigating other neural opthamologists to see if they have any recommendations. I'm looking into U of M Ann Arbor Kellog eye institute and Kresge Eye Institute because it was recommended to me that a group of doctors were needed for this condition.
Rachel is a dancer and has very tight neck muscles - we think that might have an impact somehow. Rachel was diagnosed with Cervicalgia but I don't think that's it.
It's very weird that PT can make it worse ... tells me something is going on there. Also, this started around the time that Rachel had a growth spurt, started her period, and also had wisdom teeth out... I just wonder if hormones or growing so fast were a factor somehow.
So does anyone know what type of brain doctor would be good to discuss this with? I'm not sure the neural opthamologist has the whole picture. Also, I am going to explore natural supplements and vitamins at some point. Not sure if it will help but you never know.

Hi I'm Kelley and my 18 year son was just recently diagnosed with Visual Snow. We are at a complete loss of what to do. He is a senior in high school and going to college next year on a baseball scholarship. This happened so suddenly back in March, it was like one day he woke up and is vision was impaired. He is struggling to see the baseball and that's not good for a kid going to school on a baseball scholarship. We have been told that there is no cure or anything he can do. We live in the St. Louis area and are seeing a neurologist next to see if there is anything else we can do. Any advice for me???

@ktshy Hello Kelley and welcome to Mayo Connect! I'm sorry to hear of your son's diagnosis with Visual Snow. We have several members who have mentioned this diagnosis and they can probably share with you from their experiences. Please meet @jstahl @margiek @agraffia and @grace02 who have all discussed their children's experiences with Visual Snow. We wish you well as you seek treatment for your son. Keep in touch with Mayo Connect and let us know how your son is doing. Teresa

Hello my name is Danny. I live in Hayward, Ca. I haven't been to the Dr to have a diagnosis but I'm certain I have VS. I got an onset of floaters Nov 2016 and VS came this Jan 2017. I've worn glasses since I was a teen. My mom has bad eye sight as well, she began to suffer from various conditions late in her 50's from iritis, inflammation, and one or two floaters.

I'll be 36 this year and I am attributing VS to the very stressful and traumatic 2016.

Here is my story it's long but I promise it will provide some insight....

Feb 17th, 2016, I sustained 3rd degree burns to my right arm due to an accident working on a car. I was hospitalized for 13 days at St Francis Medical Burn Unit. I had the first 2 surgeries of my life during my stay (xenografts and autografts) it was the absolute worst pain I've experienced ever. It was also the first time I've ever taken pain meds, ever. I was given morphine, percocets, dilaudid, fentynol round the clock. After being discharged, I spent the next 5 months healing up at home. Physically my recovery has gone well. Attempted to go back to work and everything seemed normal for the next few months.

Come Oct 8th, 2016 while I was visiting a friend in NY I got a severe panic attack, hands turned blue and ice cold, began convulsing, heart beating a million miles, in and out of consciousness. A week later after coming home, I began to experience heavy anxiety. So much so I could barley walk, short of breathe, felt as if at any moment I could pass out. Within the coming weeks my anxiety got so bad I couldn't leave my apartment. I saw a psychiatrist and was prescribed anti depressants (benzos and SSRi's) at times they worked. However in Nov 2016 I noticed eye floaters in my vision and after some research I personally came to the conclusion that the benzos may have caused the floaters so I decided to stop. Coming off benzos to SSRI's was extremely hard and literally felt like I was going die. I've seen 2 optometrists and 1 ophthalmologist who said nothing could be done about my floaters and not to worry as my eyes are structurally and physically healthy.

Jan 2017 I began to have bad acid reflux from some of the SSRI's I was taking so I stopped them as well and began to notice the VS. When the VS came it also came with a very strange sensation of de-realization which eventually went away. It also came with a host of other eye problems, negative after images when I close my eyes, visual portals/auras, lightning bolts, light sensitivity a bit of tinnitus and my very first migraine.

I'm generally a very healthy person. I don't eat beef or pork or any fast food at all whatsoever. I do a lot of walking. I've never done any serious drugs my entire life aside from cannabis, in fact it was only until 2016 that I've taken morphine when I was in the ICU (for my burn) or any prescription medications.

As of Oct 2016 I've quit drinking alcohol and smoking cannabis. I was only a weekend social drinker, and smoked cannabis a few times a week.

My VS consists more of color static. I have trouble focusing and can't stare at anything bright for too long, glares, reflections all bother me. I also have light trails from objects that I stare at, almost as if the image follows after I've moved on.

All of this has had negative implications on my life. Before I was very outgoing, fearless, I loved to travel and try new things, and was very social. I now find it hard to enjoy things I once did. I'm afraid of doing simple things like going on day trips, work, or going to social gatherings. My floaters and VS are constantly in the back of my mind and they exacerbate my anxiety. I'm saddened that I can't fully experience my sight and I'm afraid that perhaps one day it might be gone from me.

As of this month June 2017 I've now fallen into a pretty dark depression. I now get migraines nearly every day that have been on going for 11 days since writing this. My 5 year relationship with my gf has been greatly impacted and I've been let go of my job due to poor performance. I realize I'm not dying but internally I feel I have very little left.

I do my best to practice yoga, meditation, and deep breathing exercises as they do provide me with some relief with my anxiety and depression however it's been extremely hard accepting there is no cure for my VS and I don't do them as often as I should.

Any kind words or advise would be immensely appreciated.

To anyone who is suffering from this or knows anyone I'm truly so very sorry, my heart breaks for you and your loved ones. I feel like a caged animal, all I want to do is run free but this disease has me chained up and I could only imagine how hindering it must feel for young children suffering from this.

Sending my love,

Danny

Hello Danny (@danny59), welcome to Mayo Connect. I'm sorry you are having to deal with so much. I can't begin to imagine how overwhelming it can be. I'm hoping others will join in and share their story and be able to offer some advice on what they have done.

I don't have visual snow but I think you are on the right track by coming here to look for answers. The more you can be your own advocate and push for answers the better chance you will have. I've found comfort in learning as much as I can about my neuropathy illness by learning what others have done. I use Google search a lot. I also Google Scholar to find information because you can sort it by the newest date for articles. Here's an example:

Searched for visual snow +migraine and selected 2017 in the left column - http://bit.ly/2thhZF4

Please don't give up and keep searching for something that will help you. You might also want to go to the top of this discussion and read through the posts if you have not already done that.

John

Hi Danny,

I'm in the same boat as you. I'm currently out on disability from my job and need to get better in the next few months or will probably lose my job 🙁 I'm very depressed too and feel like a prisoner in my own home too. Do you have noise sensitivity with your visual snow? I live in the peninsula really close to you. I just sent an email to UCSF to see if they can see me for my VS since they are experienced.

Erika