Visual Snow: My Story

By Jackie, United States, December 3, 2014

Visual Snow: My Story
Posted on June 25, 2014 by Jackie
This article is intended to spread awareness about a rare condition called Visual Snow. It is something doctors do not understand… and many do not even know it exists. I am hoping that by sharing my story, others will come to see that they are not alone, that this condition does in fact exist, and that there are researchers working right now to find a cure.

I haven’t told many people this story, not even many of my close friends and family. Because when you are experiencing something which baffles doctors and leads them to think you might be on some sort of controlled substance… you tend to keep it inside.

A couple of years ago I began to notice my vision seemed a little odd in certain situations. It was very subtle, and perhaps had been slowly developing for years, largely unnoticed. Once it progressed beyond a certain ‘noticeable’ point, it became a small part of my life. Obvious at all times, in all situations, and sometimes completely overwhelming – trying to take up a larger space in my daily experiences than I have been willing to cede.

I see static. TV snow. Erratic fuzz that flickers and flashes all around my field of vision in every situation, all day, every day, all the time.

Sometimes it’s mild and sometimes it’s unbearable and handicapping. Mostly I’m busy, running after a couple of toddlers, fetching things, preparing meals, cleaning up messes, teaching phonics, kissing boo boos, and reading storybooks. Hardly sitting still until I crash into my pillow. It is the joy of my life, these wonderful little years that seem to fly, I try to hold on tight. And these busy days are saving me from my disturbances, I don’t have time to dwell. But when I do have a moment to sit at long last and enjoy a quiet blue sky with my husband, it is the very blue sky which I feel the need to run and hide from.

A blank canvas, such as a bright blue sky or painted wall can be a nightmare for me. The expanse provides the perfect arena for the spots and flashes to dance around wildly, standing out in disturbing ways I cannot stand. Computer screens can also be a problem, as is anything too bright, too dark, or too bright and dark together, simply watching TV can be overwhelming. My night vision is awful. Let’s not even mention sitting under fluorescent lighting. A fan flickering near a ceiling light: blinking room of death. Strobe lights: terrorizing.

How have I coped? I just don’t sit. So long as I am running around, turning my head, looking at this or that, tending to x,y, or z… I simply don’t have the time. The snow mixes in with my kitchen dishes, laundry piles, my children’s faces, everything else in my field of vision and quickly gets lost. Mostly I have to actually try to see it if you were to ask. But ask me to stop, and I can’t not see it.

I’ve seen a few doctors about it. A primary care physician, a neurologist, another neurologist, an ophthalmologist, a neuro-opthalmologist, and a colleague of the neuro-opthalmologist. The exams result in pretty much the same routine: I’m healthy, my eyes are healthy, my blood work is normal, my MRIs are normal.

Then come the fun questions:

Umm….Describe those symptoms to me again, please?

How is your home life? Fantastic.

Are you stressed? No. I mean, raising little ones is stressful by nature.. but I love every moment.

Do you exercise? Yes, I run or lift weights most days of the week.

How is your diet? I rarely eat out. I eat whole foods, tons of veggies, lean proteins…

Then you’re probably stressed.

Maybe you don’t realize how stressed you are.

Have you ever taken any recreational drugs? No.

And the unanimous diagnosis always is….

Well, I’ll be honest. I’ve never heard someone describe these symptoms to me before. It sounds like some sort of long-term silent migraine. 

Face palm.

Then tears.

After 9 months of this repetition, I have given up. There is no effective treatment for a long-term silent migraine, if that’s even what this is, and my doctors think I’m crazy anyway.

I’ve stopped seeking treatment.

As much as I hate to admit it though, my symptoms are worsening. The static is growing more prevalent and I’m beginning to also see after-images everywhere. I’ve recently moved to a new state and have toyed with the idea of starting over with a new team of doctors here. But what if they think I’m crazy too?

I googled my symptoms about a year ago and came up with absolutely nothing. Evidently I am alone.

Then the questions start to play tricks with me. Maybe I am crazy? Am I making this up? Do I really see this?

Yes. Yes, I do see this. And it’s in my way.

I was watching the sunset with my husband just the other day. Our boys were running around the yard catching fireflies as we sat on our porch, relaxing, reflecting, savoring the sweet air. Until I could bear it no longer. I had to escape inside. I went to the computer and desperately googled again. Static, floaters, dots, snow in vision… BOOM.

Something was there. An article. A few articles. I clicked and saw an image that brought me to tears.

This smiling little girl. And the snow. This! THIS IS EXACTLY WHAT I SEE!

Visual snow (VS) is the persisting visual symptom of seeing snow or television-like static across their visual field. The snow and static tends to be worse in the dark, but can be seen in all lighting conditions.

I learned from the Eye on Vision Foundation that there is an actual condition called Visual Snow! Most doctors don’t know that it exists! It is very rare! There are others just like me! And most importantly, there are researchers working to find a cure!

I was so overwhelmed with tears of joy, I could hardly read the short article. Read it for yourself here.

It is important for you to realize that this is a 24/7 condition for these sufferers. The symptoms do not ever go away. Even with their eyes closed they see the static, afterimages and other disturbing visual images. With the help of a handful of caring doctors, the Eye on Vision Foundation strives to raise funds for research into finding a treatment. Currently we are awaiting the results from a brain imaging study being conducted at UCSF to learn more about visual snow.

Dr. Goadsby and Dr. Schankin from UCSF are 100% committed to this research, and are very motivated to help find the cause and hopefully a treatment plan.

Further tearful internet searching led me to this incredible video. It’s a young woman describing her Visual Snow to a Denver news station. Her journey of disheartening doctor’s questions, her diagnosis of long-term migraine, her discovery of the condition, and an interview of the doctor leading up the research right now!

“Part of the problem — it’s fallen between the cracks,” said Dr. Peter Goadsby, with the University of California San Francisco medical center.

Goadsby is spearheading Visual Snow research, focusing first on diagnosing it as its own condition.

“Some people are interested in migraines and some in vision, but I don’t think we’ve joined the dots up — probably a bad metaphor with Visual Snow,” said Goadsby. “But people with visual snow can take some comfort knowing that everyone is not ignoring them. We’re starting to listen and when we listen what they’re saying is very clear.”

I’ve found the Facebook page joining Visual Snow sufferers, I’ve found other articles explaining further details of the research, I’ve found other simulations of what VS sufferers see… and all of it has just brought me to my knees. My heart is so inexplicably happy. It’s real. It’s not drugs. It’s not a migraine. There is no cure, but I’m not alone and I can’t wait to be a part of all this.

I’ve learned that VS is so rare that most doctors may only see a patient with it once in their entire medical career. No wonder I have seen so many puzzled faces. I’m going to my next consultation a little more prepared.

I don’t ask for sympathy. Many of my loved ones suffer from chronic medical conditions far worse than my snow. While all of this can be extraordinarily disturbing, I try not to let it get me down. I can still see my husband. My beautiful children. Kiss their sweet faces and thank God that I can live my life to the fullest. Maybe I can find a way to be a part of this research. In the very least, I share my story to raise my hand. I see snow. Maybe someone you love does too.

Check out the sequel to this story! <— Click here to read about how a news station picked up this blog post and interviewed me about it, about how I walked around downtown with a TV on my head, and other fun things that got started because of this post!

***I should note that I have suffered from migraines with aura for most of my life. I am relatively used to losing my peripheral vision, seeing radiating psychedelic jagged lines, light sensitivity, after-images, losing the ability to speak coherently, experiencing numbness in my hands/arms/face, and of course the excruciating headache all related to chronic migraines. That’s all something my neurologists and I have come to refer to as ‘my normal.’ I’ve suffered from these attacks for the past 16 years, sometimes weekly and sometimes (the good times) every few months. Mostly my neurologists have concluded that they are hormonally triggered and have been associated with my teen years, birth control use, my two pregnancies, the common cold (double whammy), lack of sleep, or stress. Many sufferers of Visual Snow also suffer from migraines with aura, but the events are separate. And doctors see them as separate too.

Posted in Visual Snow | Tags: afterimage, bfep, lingual gyrus, migraine with aura, migraines, migraines with aura, palinopsia, persistent migraine aura, snow in vision, static in vision, visual snow, visual snow syndrome | 16 Comments

Share this

Share your photos, videos and your experiences!

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial.

Share your story

(To find the english name and more information about your disease, click here). Start typing the English name of your disease. Please choose from the suggestions that appear. If your disease is undiagnosed please write ‘undiagnosed’, or if you would like to list multiple diseases, please type in a list separated by commas.