Visual Snow: My Story

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.

static_tv_021709

 

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.

 

vs-animated

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.

Comments

  1. Eric Fits says:

    Thank you for your post. I relate with you 100%. Let’s hope for a clearer future!

    1. Jackie says:

      Amen to that!

  2. Timothy Salthouse says:

    Thanks for posting! I’ve had visual snow for 45 years and was relieved to find the Facebook support group. The other day my optometrist tried to tell me vs was in my eyes. Hopefully she will watch the YouTube videos and check out our Facebook page. Many doctors are set in their ways and don’t want to learn about anything “not in ther books” –Tim S

    1. Jackie says:

      I can’t imagine suffering with it for so long! I’m also hopeful that doctors will be receptive to the reading material I am prepared to enlighten them with lol.

      1. julia says:

        Hi, I have visual snow and went to many doctors before being diagnosed with Lyme disease. I had to go to a Lyme literate MD to get an accurate test through Igenex. Through treatment my visual snow has radically decreased and I rarely see after images anymore. I still see 1 floater and sometimes I still have blue field entopic vision. However, I’ve only been in treatment for 1 month and it could take years to cure. At least I know what is causing it. Many doctors did not know what I had and are very uneducated when it comes to Lyme and it’s symptoms.

  3. Mayara Almeida says:

    Thanks for posting this.
    Your case is very similar to mine. The snow increased for me gradually and today is hard to ignore it. I always thought my symptoms were getting worse because I used to spend too much time with screens (computers, phones, tv). Now, reading your post, I think I may be wrong and VS does not have to do with overuse of technology.

    1. Jackie says:

      Thanks for your feedback. I’ve read that a lot of people had the vs come on suddenly and was wondering if it happened to anyone else gradually.

  4. dad says:

    Keep your faith my beautiful daughter. ..and keep reaching out to others for communal intelligence. There may or may not be a simple cure…but the odds favor you the more you can connect. I love you and pray for help. Xoxo dad

    1. Jackie says:

      Thank you, dad.

  5. Ashley DeJohn says:

    I am praying for you sweet Jackie!

    1. Jackie says:

      Thank you!

  6. Christina Boatwright says:

    So glad you have found that you are not alone. I sincerely hope you can be apart of the research! Great article!!!

    1. Jackie says:

      Thank you!

  7. Wendy Flamand says:

    Jackie,
    Ditto everything you’ve experienced for my daughter, beginning with aura & migraine/visual snow at around age 8. She’s know 18 and coping mostly, but it is torturous for someone who wished nothing more to devour books. The stripe pattern of text bring it on terribly – when she can she inverts computer text to be black background with white typeface. I thankfully discovered the facebook group and Eye on Vision a year and a half ago and it has helped to know there are others. One final thing, she does love her brain and the pronounced powers of observation it allows her. She is wonderful and I wish for a cure for the both of you! Cheers, Wendy

    1. Jackie says:

      Thank you for sharing, Wendy! Best wishes to your wonderful daughter.

  8. Katie says:

    Hi I clicked on this page from your post in the Facebook group. Very interesting and all too familiar reading unfortunately! My blog also largely relates to VS if you’re interested 🙂

    1. Jackie says:

      Yes, Katie! Please post a link to your page so we can follow.

  9. Marylaine says:

    I seen your story on Fox Carolina news last night. I only live about a hour from Greenville around Pickens SC. I am so glad I watched because now I finally have a answer to my problem. I’ve seen this way ever since I can remember seeing at all. Everyone has always looked at me like I’m crazy when I tell them it’s like a old fuzzy tv screen. That’s the only way I’ve ever known to describe it. Eye doctors have never helped at all. Thank you for making me aware of this syndrome.

  10. JZ says:

    I think I may have Visual Snow . It started in 2007 when I at times I could only see in shades of red. It was not long after that happen that I started to see violet streaks and blotches . The problem seemed to progress to the point I was seeing violet streaks most of the time and sometimes white circles. I noticed my vision became more distorted , kind of wavy. In 2008 I lost most of my hearing for about two months. I had a sharp pain in my head and my hearing came back but from then on I had real loud ringing in both ears. Everything seemed to become worse from then until now. What I see in the last couple of years looks a lot like a analog TV picture on a weak station and my vision seems to also have a steady pulsating / wavy pattern to it. It is far worse in dim light. The dimmer the lighting the worse it becomes. Many years ago I was told I may have brain damage because I was Anorexic from 1972 -1989 . It destroyed me . I have chronic pain in my legs and arms , burning pain. So I may not have Visual Snow but brain and nerve damage because I starved myself to such extreme. What you and other people describe is a lot like what I experience.

  11. Megan says:

    Thank you so much for posting this!

    I am 26yrs old and slowly but surely out of now where I started to see negative images of things by just glancing at them. A few short days after I glanced to the bright sky and seen this “snow” with little sparks flying everywhere. I too have been searching for answers. The snow is bearable. But the negative images with everything I look at is unbearable. I pray to god they find treatment soon. But I am blessed to know there is someone else out there, and rather others, that have a similar issue going on. No one understands. And its so hard to explain.

    Thanks again! Good luck to you and God bless.

  12. Chris says:

    Thanks for this

    I too have experienced visual snow for nearly a year. I was going mad, not knowing wtf was going on with my eyes, especially that when I close my eyes hoping it would all ho away, it was still there. It lead me thinking some strange things lol. I suffer from nothing else, fit, healthy and young, just have loads of floater and this. Its like glistening light on snow. It appeared out of the blue for me and gets worse when its dark.

  13. Sheree Paulson says:

    Hello. I stumbled onto your page after a long day of Internet reading fueled by another unsatisfactory trip to the eye doctor. I have had this condition my entire life. I’m soon 43.

    The first time I remember trying to describe it to someone I was only five years old. Laying in bed staring at the white ceiling, I asked my mother if she could see the “little wonder women” flying around the room. Because to my very young mind it was the only comparison I could think of to describe the specs of light that I was seeing constantly, that seemed to reflect red, yellow, and blue, the colors of Wonder Woman’s costume and not coincidentally, I believe, the three primary colors. My mother, of course, dismissed it entirely and never questioned me further which I was frustrated by. Why couldn’t anyone understand this? Doesn’t everyone see this? Do they just not notice it?

    I don’t know if it ever occurred to me that something might be wrong, that I needed a “cure” for it, but I always embraced it as a gift, a different, if not better perspective and understanding of light and color. It’s lead to a life long fascination with light and color and how they work together.

    I remember when I first saw the work of the artist George Surrat. I thought to myself “See. This guy gets it. He sees the world the way I do.”

    I am intrigued by the study going on and would love to participate if it is still active, and would love to be kept up to date on the research findings as well as share my own observations and ideas.

    Thank you for taking the time to create an actual page in which people can come together on this fascinating subject and please let me know if this study is still on-going.

  14. John says:

    “That’s it, that’s what I see!” was the first thing my young daughter said when she saw the smiling little girl in the photo above. I knew she had visual snow after waking up one morning. The doctors in their infinite wisdom want to label sufferers as anxious, depressed, suffering mental health problems, as is their habit these days, but dismiss the Visual Snow. Mental illness is the buzz phrase which allows them to prescribe dangerous anti-psychotic and anti-depressive drugs, heroin for the masses, and tag you for life.

    Save your time, money and sanity and avoid the medical profession, including neuros and opthalmologists. Go and see a deep-tissue massage therapist or chiropractor and release the occipital muscles and neck.

    Tinging and numb arms and legs, headaches and muscle soreness, may point to neurological lyme disease, which happens to also attack the eyes.

    The Goadsby research seems to have stopped, maybe not enough money to support research in this rare condition.

  15. Jay McCall says:

    My son has these exact symptoms. Have you met with an LLMD (Lyme Literate Medical Doctor)? Here is an example of someone with these symptoms who was diagnosed with Lyme and treated with Minocycline.

    https://goo.gl/M4h4Vw

    Here’s a second post about the connection between visual snow and lyme: https://goo.gl/SjMZCv

  16. Cassie says:

    I just got diagnosed with visual snow at a reputable neurologist. I sat through hours of tests for them to say that there is nothing they can do. I am grateful that this will not hurt me, but I wish there was something I could do.

  17. Jeff says:

    I have it. I first noticed bouncing lines when I was about 18. I’m 40 now, and I know my BFEP has gotten worse. I used to only see it in a blue sky and under fluorescent lights and light colored walls. Now it is everywhere all the time. Prayers for you and everyone else dealing with this.

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