static in vision – Jackie Vest

Behind the Scenes: My News Interview

Posted on September 12, 2014 by Jackie

I was recently interviewed by a news station about my Visual Snow story! It is set to air on November 5th in the 10 o’clock news on Fox Carolina. Find out how I struggled to not mumble and puke all over the news anchor and how, together, we blew some minds wide open…

A few months ago I wrote my very first blog post about my two-year journey through Visual Snow Syndrome (If you’re wondering what in the world is VSS? Find out here) and how I battled through negative doctor reactions to my symptoms and incorrect diagnoses… finally discovering Visual Snow Syndrome through Google searches… and eventually having to diagnose myself with it.

Since then, I’ve learned very much and very much has happened.

We did crazy things like this:

Visual Snow Syndrome

And then there’s…

a New Phase of Research (Docs are working towards a treatment!) We need help to raise funds to begin. Please visit our Go Fund Me link here.

an Awareness Video (Me + giant TV on head = Good Stuff) Watch the 3 min YouTube video and read more about why I did it here.

a New Forum at VisualSnowForum.com (woop woop!) Handy Tech-e Hubby made it so we can more easily discuss important info. If you haven’t checked it out and joined already, jump in! It’s free and open to anyone- you don’t have to be a VS sufferer.

…and a TV News Interview I did! I am so excited to tell you about this, that I have basically already passed out.

Here goes:

After years of strange looks and harsh questions from doctors, and a diagnosis of Persistent Migraine Aura, I gave up seeking treatment. There wasn’t one for Persistent Migraine Aura anyway, and my doctors made it clear they weren’t even sure that’s what I had, just that they didn’t know what else to tell me. Around this time I moved to a new state and didn’t seek out a doctor. Eventually, I came to find out about Visual Snow Syndrome, and the research, and that it was exactly what I was experiencing. I wrote this blog post about that journey and I’m glad I did because LO AND BEHOLD: One of my local news stations wanted to interview me about it!!!!!!!!!!!

With one caveat: they wanted me to have a doctor to interview too. I called about 30 different Neurologists and Neuro-Ophthalmologists in my city and asked if they had ever heard of Visual Snow… not one. Not only that, but many of them had 6-9 month-long waiting lists. I found the Neuro-Opto with the shortest waiting list and decided to heck with it and made an appt. Armed with this new knowledge (literally), I walked into an appointment with Dr. Mitch Wolin and the expectation that I would be greeted with the same hurtful looks and questions. I rattled off my list of symptoms and shakily handed him the documents, nearly ducking as I waited for his response. “Why yes, of course, you have Visual Snow.” UHMMMM Can you répétez s’il vous plaît?????

Me: So… you’ve heard of this before?

Doctor Wolin: Yes. I have seen a few patients with it.

Me: Would you be willing to let a news crew interview you about it?

Doctor Wolin: Sure.

There is a hole in the ceiling of that exam room where my brain exploded.

To further add to my complete excitement/bewilderment/disbelief/body-is-there-but-brain-has-clearly-left experience, he then spoke these crazy words:

Each month I give a lecture at the hospital to students of the University of South Carolina School of Medicine. Would you like to come to the next one and speak about Visual Snow?

I somehow refrained from the urge to jump about wildly and scream like a little schoolgirl.

Me: Yes. That would be *nice*.

People, I was completely cuckoo. I don’t even remember the rest of the appointment. I floated out of the building and floated home and did all of my jumping and giddy screaming there.

Fast forward to earlier this week.

The news crew wanted to set up two opportunities to film: One here at my home with my family and my personal life with VS. And the other at the hospital lecture with my doctor.

It must be said that while I can sit behind this screen and pour my heart out to you in writing, when it comes to public speaking I am exactly a stuffed piece of taxidermy. That mumbles.

I resembled said stuffed piece of mumbling taxidermy here on my couch with the beautiful news anchorwoman at my side and the giant light and camera in my face. If I slumped over and passed out at any point, they never did say.

At one point they went into my kids’ room and got some footage of them playing. To a 3-year-old, I think it looked something like this: Towering giant walks into your room carrying a rocket ship on his shoulder. You drop all your toys and your mouth. He commands, “Do not look into the rocket ship, son. Just pretend the rocket ship is not here.” (Blink.. Blink…)

The interview was successful in a relative sense. There were so many things I did get to talk about, but also so many things my frozen brains left out.

A few days later, we all met at the hospital for the lecture: me, the news crew again, Dr. Wolin, three hospital/doctor assistants, and six students from University of South Carolina School of Medicine, beamed in via Skype. There was a podium, and a mic, and several rows of seating. That podium tried to be the death of me. Right in the crosshairs of two large cameras and 12 pairs of eyeballs.

What happened in the next 10 minutes is nearly beyond words. I will do my best, folks.

I was under the impression that I would be speaking to students, but in fact they were university hospital residents (doctors)! They had never heard of VS and were very intrigued! I was able to talk about every symptom of VS (the static, the afterimages, the palinopsia, the BFEP, the floaters, the vibrating, the light sensitivity, the tinnitus, the whole enchilada) and I was encouraged to explain everything! The latest research in the medical journals, the upcoming research, how doctors are misdiagnosing or dismissing patients, etc. Not a thing was left out and it was all caught by the news camera on my side of the screen. Dr. Wolin did an interview with the station as well and told them that he does not believe it is as rare as we think it is, due to patients being disregarded or sent to therapists and doctors not knowing what to make of it. He said it is “humbling” when your patient comes to you with the research papers and a self-diagnosis and they are exactly correct. He said all of this right to the news camera! IT. WAS. SO. AWESOME.

There was room for questions and answers from the doctors after I gave my story, and the more they asked me, and the more they discovered, the more they were just blown away. Their faces were full of surprise, mouths wide open, hands in the air. I think the only two people who weren’t falling out of their chairs were me and my doctor. I don’t even know where the words came from, the clarity I finally spoke with, and the functioning of my brains. I didn’t mumble or space out, although I was again that stuffed taxidermy. I could have been thrown down a set of stairs and not lost my shape. But I’ll absolutely take it. I had a lot of people praying for me in this moment, and I am truly thankful for the strength I received from the Lord to stand up there and hold it together. It was not my own.

The hospital’s media relations specialist attended the lecture and was also completely floored by our condition and these tough circumstances. This story is set to air on November 5th in the 10 o’clock news on Fox Carolina (the November Sweeps) and she wants to assist me in reaching out to all of our other local media and newspapers to help us spread the word.

All of this was just… I can’t… Incredible.

And that’s not even enough. It’s not me. It’s not “Congratulations, Jackie! Thank you!“… it’s this: I was in the right place, the right time, with the right people, and the right opportunity, a strength that was not my own, and I am on the receiving end of an incredible reception from a crowd of people who knew nothing about this and wanted to know so much more. I am in shock. I am in a state of humble gratitude.

November is a little ways off, but it’s actually good news. The Sweeps season is known for more in-depth stories rather than tiny news-flash clips.

Fingers crossed. Toes crossed. Prayers going up! THANK YOU for your support!

Video: Why I wore a TV on my head

Posted on September 9, 2014 by Jackie

There I am, walking around downtown with an actual TV on my head. Do you see the window faces? What on earth compelled me to embarrass my husband in this way? It’s quite simple really. I’ve got a rare condition that doctors don’t know about. There is no treatment and rarely anyone to turn to. The physical and mental 24/hr burden looks exactly like living life with a giant tube on my head. (psst: and I love to torture my hubby)

Please take a moment to watch and share this video. Doctors who haven’t read the latest research articles on Visual Snow Syndrome are unaware that this condition even exists. Instead, they misdiagnose patients with a long-term migraine… or even refer people to a shrink. All joking aside folks, this is real. Help us spread the knowledge. Someone you love may be affected and perhaps too embarrassed to talk about it. If a doctor thinks you’re crazy, then what will everyone else think? I was there.

The simulations you see from my perspective may or may not come through on your screen the way we VS’ers (ha!) truly see things. To give you the rundown, we see tv-static covering over everything in our visual field 24/7. Yep. 24/7. On top of that we will usually also see any number of these fun disturbances at an exaggerated level: afterimages (we look at something for a second, look away, and still see the negative image of the thing we just saw. This can be especially difficult when reading, as we tend to still see the line of text we just read on top of the next line. Or watching TV, as we still see the image from a moment before now laying on top of the new one. This one symptom of Visual Snow can be more handicapping than the “snow” itself), trailing of moving objects, Blue Field Entoptic Phenomenon (exaggerated), floaters (everywhere), and MORE… to truly create a buzzing-static-vision filled with negative images, flashes, trails, wiggles, dots, spinning circles, and craziness… 24/7.

Certifiably nuts? Think again. There is a location in the brain responsible for all of this mayhem (the Lingual Gyrus to be exact) and doctors are trying to figure out how to treat it. So we hang tight. And try to live in hope. And try to get the word out. And work to raise funds for the next phase of research. Will you join us?

If you’d like to read my personal story of Visual Snow, see my previous post here.

If you’d like to donate (seriously, every single dollar is one step closer to research – no admin or CEO paychecks here – a direct impact!) follow us to Go Fund Me here.

If you’d like to learn more about Visual Snow Syndrome, join our forum discussions, see the research papers, find out more about the Eye On Vision Foundation, and more, go here. <–handy hubby made this just for you and me!!

Thank you for taking the time to educate yourself on a rare and overlooked condition. Your prayers, your support, your donations… mean everything to us.

-Jackie Vest

Visual Snow Syndrome

Video: Ice Bucket Challenge – Take 2!

Posted on August 27, 2014 by Jackie

I had a lot of reservations about the ALS Challenge. I’ve been challenged several times by friends and haven’t risen to the occasion yet. Mostly because I don’t like feeling a social pressure to do something trendy. Then there’s also the whole wasting of water. And the silly act of making a big deal out of getting doused in the middle of a scorching summer. With water. And ice. Gasp.

But moreover, there’s the people with ALS. And their sufferings, and their family, their friends, the lack of awareness, and lack of money. These are a much bigger deal.

So I thought, why stop there? It’s WONDERFUL that ALS is finally in the spotlight, finally known to just about every human with an iPhone. Finally they are flooded with love and donations and empathy. This movement, while silly, is truly incredible. Let’s take a moment to think about the humble beginnings. The fact that it’s a rare disease, it’s without a cure, it’s under-funded, and largely ignored. And further, if these oppressions prick your heart at all, then absorb this: there are literally thousands of rare diseases out there that are without cures, funding, research, or attention.

I have a proposition for you. Yes, YOU!

Let’s lift up ALS and step it up a bit: TWO Buckets! TWO Charities! Pick a rare disease, the list is OVERWHELMING. Make any donation you can afford, and season it with all the love and attention and ice cubes you can muster. Then let’s all be trendy-cheesy-soggy together.

Which one did I pick? Visual Snow Syndrome. It’s a rare visual disorder in which sufferers see what looks like tv-static or “snow” in their entire field of vision at all times. It never goes away. There is no treatment. It is mostly unheard of (even in the medical field) and often those who have this syndrome are misdiagnosed with migraines, or just plain looked at like they have multiple craniums.

I know this personally because I also suffer from Visual Snow Syndrome. Find out more in an article I wrote which details my story here. For the research donation page, please go here.

Consider yourself DOUBLE DARED! Even if you’ve done the dunk, I dare you to step it up. TWO Buckets! TWO Charities! ALS and another rare disease of your choice. Pick one. Pick up a bucket. Make a small donation. Make a huge difference to someone else.

For a laundry list of rare diseases visit this site.

Are you game?!

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.