The story of Jennifer
Interviewed By: Melody Lay COVT
For the benefit of our readers, can you describe how you are involved with Developmental Optometry?
A few years after I developed Visual Snow syndrome I was driving down the road and saw an office sign reading “vision therapy.” At that point it had been the only thing I hadn’t tried yet for my vision, so I looked up the practice online. I set up a consultation with Dr. Jenna McDermed. While she couldn’t offer help with many of my visual symptoms she did diagnose me as having convergence insufficiency and felt that vision therapy could help me with that side of my visual disturbances. I began therapy the next week and continued for 6 months. Until the day I drove by Dr. McDermed’s office, I had no direct knowledge of vision therapy. I had briefly heard of it being used by athletes, but had never looked into it, for my own use.
Can you describe for our readers Visual Snow?
Visual snow syndrome is an untreatable neurological disease that devastatingly affects a person’s vision, hearing, thinking, and physical body. Many of the symptoms a patient experiences are constant and do not come and go. Symptoms vary from patient to patient, but all patients with visual snow syndrome see static (similar to bad TV reception) everywhere they look. Other changes in vision include:
– seeing television-like static across the entire visual field 24 hours a day, 7 days a week – even with your eyes closed (visual snow)
– seeing millions of silver specks flashing and moving everywhere in the sky and bright surfaces (entopic phenomenon)
– looking at your hand, and then looking away and still seeing your hand for several seconds even though you are no longer looking at it (after images)
– seeing the vitreous inside your eye breaking down with gray, black and clear cobwebs, clouds, spots and strands (floaters)
– colors fade away (low contrast sensitivity)
– looking at a sentence and seeing the same words you are reading floating on top of the text you are looking at (ghosting)
– seeing a moving object’s motion after it passes your eyes (trails)
Other visual symptoms include night blindness, light sensitivity, flashes of light, glare, halos, starbursts, dry eyes, blind spots, vision blacks out with one eye closed, yellow-tinted vision, double vision and loss of accommodation.
Changes in hearing include constant ear pressure (this would be the feeling of needing to pop your ears on an airplane) and ringing of the ears (tinnitus)
Changes in thinking and the brain include migraines, a feeling of watching oneself act, while having no control over a situation (depersonalization), a sensation that the world seems unreal (derealization)
Changes in the body include numbness, tingling, twitching, vertigo and dizziness
When did you first develop symptoms of Visual Snow? Was it in adulthood, or looking back can you identify symptoms from your childhood that you now recognize as Visual Snow?
My visual snow story started around the age of 6. I was young, so I’m not exactly sure if I was 5 or 6, but I clearly remember going to my mom in first grade and asking her what the flying dots I was seeing in the dark were. She thought I was talking about floaters, told me it was normal, and that was the end of that. Two years later my teacher contacted my mom telling her that I was having trouble seeing in school. My mom took me to the eye doctor and we learned that I was legally blind. Fortunately, I could be corrected with glasses, but the doctor seemed baffled how this could have gone missed. Looking back now I wonder if the start of my visual snow two years prior had something to do with it.
In 2005 my visual snow progressed to the full-blown syndrome. I was experiencing worsening visual acuity, floaters, after images, loss of contrast sensitivity, ghosting, glare, halos, starbursts, tingling and numbness in my body. I was hospitalized and had every test run that was available and no doctor anywhere could figure out what was wrong with me. I was sent home time and time again from tests with doctors confused and questioning what was wrong with me. After many months of research on my own I came to realize that I had a little known condition called visual snow. Sadly, there was no research being done for the condition, so I started a non-profit and went on a quest to find a cure.
In 2011, a visual snow patient whose neurologist was interested in researching visual snow contacted me. The research began in 2012. In 2014, my visual snow syndrome progressed again with worsening symptoms and new symptoms of tinnitus, head and ear pressure, trails, night blindness, along with another regression of my visual acuity (the eye chart test) and the development of more floaters.
How has vision therapy played a part in your treatment and management of Visual Snow over the years?
The primary assistance that I’ve been able to get out of vision therapy has been to regain my ability to focus clearly. Glasses could not help me with this at all. Yes, readers could make the words bigger, but still unclear, so I welcomed the opportunity to pursue therapy in a hope to regain my focusing skills again.
You founded your own non-profit in order to facilitate research on Visual Snow. Can you tell us about that?
After learning that there was no research being done anywhere and no doctors aware of the condition, I felt compelled to do something. To take action. I started the Eye on Vision Foundation. We (my husband and I) launched a website and started to accept donations. I began to contact Universities and research facilities in hopes to entice them to start a research project. One of the main problems with the research at the time was no one knew if visual snow was an eye or a brain issue, so it was very difficult to find doctors who were interested because the ophthalmologists would insist it was neurological and the neurologists would come right back and say it was retinal or had to do with an optic nerve defect. You also have to remember this was all speculation too, because there had been no research at that point. After many failed attempts we were very fortunate to find Prof. Peter Goadsby and Dr. Christoph Schankin who felt very strongly that visual snow was a neurological disorder and were committed to conducting the necessary research to prove it.
That is amazing, how many member/supporters do you have?
The foundation is run by myself, my husband and my mom. We had been growing very slowly over the years, until 2014 when we began to expand due to a large fundraising drive that we undertook through GoFundMe. In a few short months we were able to raise the $50,000 that we needed to continue the research that Goadsby and Schankin began. Donations came in from several hundred people from all over the world.
Can you tell us about the research that has been conducted thus far, and the goal for continued progress forward?
The first research study was able to prove that visual snow is a neurological disorder. It was also shown not to be a persistant migraine state, which earlier doctors speculated it might be. The brain of a visual snow patient is in a constant hypermetabolic state. It is like a switch was turned on in our brains and can’t be shut off. I will share with you a link to the study, which can provide more medical and scientific data and details.
If someone where to walk in the shoes of Jen Ambrose for a day, what would that day look like (figuratively, and literally through your eyes)?
Each day is hard, really hard. The only two times in the past decade that I really show that is when my condition went full-blown in 2005 and when I had an acute worsening of my condition in 2014. At any given time I’m dealing with several symptoms. Everywhere I look I see static. It’s worse in dim light and in the dark. In the bright light and sun the appearance of my floaters is worse and my entopic phenomenon is very noticeable. There is no lighting condition that I’m comfortable with. My ears ring from tinnitus. My head and ears fill with pressure like I’m on an airplane and I’m constantly popping them and trying to clear them. I see after images off of many items. Letters ghost which makes me see many things (especially words and signs) as double. I have unexplained blind spots that appear even though my eye tests come back as normal. There is a lot of despair because there is nothing that the doctors can do to alleviate any of the symptoms. Honestly, I could go on and on about my symptoms because the list is long, but I get that for an outsider it’s hard to understand and imagine.
You have the opportunity through this interview to speak to many wonderful Developmental Optometrist and Vision Therapists. What do you want us to know from a patient’s perspective about Visual Snow?
Visual snow is going to represent different in each patient. Currently we all have one common symptom, which is the static. Other than that there are going to be many different symptoms, so no two patients are alike. Treatment options are most likely going to be different because of this. You need to get a full listing of symptoms and really delve into what they are seeing and experiencing. Understand that many symptoms cannot be helped or improved with therapy, but some can. Focus on those.
You have four amazing children who have helped promote awareness of Visual Snow. How has their support encouraged you to continue the fight?
I have four children, who mean the world to me. They are what gets me through each day and what keeps me fighting for a cure. While no research has been conducted on a genetic link, there have been enough patient accounts where multiple family members have the syndrome. I know that it is possible that one or more than one of my children will develop visual snow syndrome one day. I hope that my efforts through the Eye on Vision Foundation have laid the groundwork for a future that holds a cure for myself, my children, and the many other people suffering in this world with visual snow syndrome.
jen family
Some Closing Thoughts – I would like to personally thank Jen for taking time from her busy schedule to share her story with us. I first met Jen on her second round of vision therapy in Florida. Her first experience with vision therapy gave her some stability to help cope with her visual snow. When her symptoms began to change and intensify, she returned to continue therapy a second time. Please join me in thanking Jen for bringing awareness and research to Visual Snow Syndrome and for giving those of us in patient care an inside look into the world of Visual Snow. Please visit her website if you would like more information. I wish Jen and her family all the best! 🙂