Binocular vision dysfunction (BVD) encompasses a group of conditions where the two eyes have difficulty working together as a team, resulting in a vertical or horizontal (or both) misalignment between the line of sight of one eye with the other eye. Subtle vision misalignment can be congenital/spontaneous or precipitated by a brain injury/concussion, and has many non-visual symptoms including dizziness and other vestibular symptoms, headache, neck ache, anxiety, and difficulty reading. There has made little progress in identifying and treating this condition, most likely because the standard vision alignment tests are not sensitive enough to find these subtle misalignments.
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My name is Matthew and I suffer from visual snow syndrome (VSS). I work as a research scientist and am from New York! I have suffered from VSS since 2008 when I was 17/18 years old. Right around my 18th birthday I noticed a large dark floater in my left eye. I thought I was going blind or something very serious was going on. The floater slowly got bigger, darker, and longer until it stretched across my entire visual field in my left eye. Then, I noticed the ringing in my ears (tinnitus). Then the static/snow and Blue Field entopic phenomenon set it and was noticeable against solid surface, in the dark, and against the sky. I slowly noticed my night vision worsening as well. Many folks believe they know what triggered their VSS. A certain medication they took, an illness they had, a drug they tried. I do not know for certain, but my best guess is that my symptoms started after a bad migraine with aura. I suffered with Migraines as a teenager and had one at least once every few months. I continue to suffer with migraines to this day.
When it all first started, I visited every type of doctor you can imagine. I saw a primary care provider, optometrist, neurologist, retina specialist, ophthalmologist and a neuro-ophthalmologist, etc. The list goes on. No one could tell me what was going on and no one at this point had really heard of VSS. Medical care providers accused me of having anxiety, making it up, doing drugs and lying about doing drugs. It was very disheartening to be treated in such a way when I was just looking for support and trying to figure out what was going on with my health at such a young age. I had numerous test performed including CT scans, MRIs, MRIs with contrast, and EKGs.
Fast forward 5-6 years to my senior year of college and I noticed some of my symptoms seemed to be worsening and there were some new ones. I now saw slight trails off of bright lights and surfaces, I saw after images when looking away from objects, my night vision continued to get worse, and I noticed it was very difficult to see in low light settings and my static was getting denser. At this point I started to do my own research again and I stumbled on a large community of folks that seemed to be experiencing similar symptoms and having similar issues getting a diagnosis. That is when I first learned the term “visual snow.” It was strangely comforting to finally be able to out a name to the condition and at least some sort of explanation as to why I had been experiencing these strange sensations and visual disturbances.
Thankfully I was referred to the Flaum Eye Institute in Rochester NY and was seen by a world-renowned Neuro-Ophthalmologist. I had every eye exam and test you can dream of and everything came back normal. After extensive examination the Dr. officially gave me my first diagnosis of visual snow syndrome. She said it was rare, nobody understood what caused it or how to treat it, but she assured me I would not go blind. It was amazing to not be dismissed by a medical professional and actually get a diagnosis. From there, I mostly learned to live with my condition. I finished college, worked in the private sector, went to graduate school. I have an amazing career, a wonderful girlfriend, supportive friends, family and pets I love very much.
My symptoms stayed relatively stable from that point forward until this Fall. I had two migraines after exercising within the same month and since then my symptoms have continued to worsen and deteriorate. My floaters have exploded and exponentially increased every day since, my static is much denser, my low light vision has gotten significantly worse, my night vision is worse, my tinnitus is louder, I have on and off headaches, I see afterimages more often and for longer periods of time, reading dense text in a book or on a screen is very difficult because the words shimmer, shake, and move around (this actually makes me nauseous), I have extreme light sensitivity (fluorescent lights are extremely difficult and can cause migraines), digital screens are very hard for me to look at (televisions, computers, smartphones, etc.) and I have to make extreme adjustments to use them on a daily basis for work and for pleasure. I am unable to watch tv or use computer or phones in the dark as the contrast really seems to set my symptoms off and it is too harsh for me to look at. I also now see orbs and arc of light throughout my visual field throughout the day (I believe these are pressure phosphenes) and they can be really strange and distracting. I have bouts of extreme fatigue, brain fog, confusion, forgetfulness, anxiety and depression. It is extremely hard living with a chronic illness, let alone one that is a mystery and has no treatment, cure, or official prognosis. Until the pathophysiology of the condition is understood I am stuck living with a very messy visual field.
I have made adjustments for now and am surviving. I have multiple pairs of glasses with different types of filters to help with certain lighting situation and so digital screens are not so harsh on my eyes and do not cause headaches. I have special filters applied to my work and personal computers. I require the brightness to be turned down and night mode to be turned on for all of my digital devices so I can read them without getting a headache and or nauseous. Reading books is also very difficult but I have found certain colored pages and the right bright, white, cool light make it manageable. I really enjoy reading books, so it has been really important to me that I am able to make adjustments to do so. Many of my hobbies were negatively affected by this condition but I am learning to make adjustments and enjoy them the best I can. Invisible chronic illness is extremely difficult for many people to understand and even difficult for the medical community to understand how negatively it effects my day-to-day life 24/7-365. I just hope with advancing technology and more awareness better days are on the horizon. I hope I live to see the day where folks in the VSS community are able to receive treatment that at least provides some form of relief. Thanks for listening to my story!
Hi, everyone, my name is Mujjo I am a Music composer, record producer, singer, and songwriter from east India. I remember when I got my first symptoms of VSS when I was suffering from typhoid in the year 2018.
It all started with static, floaters, flashes in my entire field of vision and slowly it got worsened!
I also suffered severe migraines. Once my typhoid medication got done my vision problems began to fade away, only mild static & floaters remained but flashes went away.
Fast forward to the 7th of November 2021, I had been diagnosed with typhoid again which was caused as the result of an increase in the amount of WBC, reduction in calcium, Tinnitus (a high-pitched ringing in my right ear 24/7). VSS flashes hit me back even stronger than before & I thought I am going to be blind permanently! I was feeling very anxious! This situation turned me into a very emotional person, every day I woke up with this static that would make me depressed! All I felt was as if I was watching my life on a Television set!
I am not able to see the sky clear as before in daytime. It is manageable, but the nights are problematic since the VSS flashes make it way too difficult to deal with it.
After an appointment with an eye doctor, I went through numerous eye check-ups. I came to know my eyes are 100% normal. Later I was diagnosed with VSS at first it was difficult for me to accept that there is no cure or medication for it but I started to think about the people who are blind at least I am not blind I just see the world from a different perspective & I accepted it as part of my life and moved forward. Trust me things got better! The people who are going through this silent disability it's important to know that you are not alone it's hard but once you accept and stop worrying about it & brain starts to tune it out, now I live my life normal like before, I cope with VSS and Tinnitus with help of early sleeping habits and proper diet and morning meditation, yoga, and stretching exercise and more water in-take and along with help of music. As a music artist, I have to work on a lot of music projects, so it keeps my mind busy at work and keeps me away from anxious thoughts so definitely music is the best healer!
A normal life with VSS is 100% possible I hope in the future a cure will be found stay strong!
Associate Professor Jo Fielding and team at Monash have expressed their sincere gratitude for every dollar someone donates to this research. They feel that there is a great need to understand the underlying cause of Visual Snow so we know precisely what is causing it and what are effective treatments to eliminate or sustainably relieve the patient's condition. Without funding, the work stops as allocated staff needs to work on other funded projects not related to Visual Snow, as scanning and analysis services are costly.
Using a novel assessment of ocular motor (OM) function, my group has identified for the first-time world-wide a unique OM signature of visual processing changes in VSS, from which we hope to develop a means to assist with diagnostic certainty and a means to measure the efficacy of any future treatment.
However, determining effective treatments depends crucially upon understanding a disorder’s underlying neuropathology. Here, our OM signature may serve another important role – providing a quantifiable behaviour that may be interrogated using in vivo neurophysiological techniques.
THIS RESEARCH: will investigate the mechanism of disruption in VSS using measures of brain function while the brain is at rest and while actively processing and responding to visual information. This will be guided by our unique VSS OM signature and previously proposed changes to thalamo-cortical processing]. Broadly speaking, the thalamus is a set of nuclei located at the centre of the brain that relays sensory information to the outer layers of the brain (cortex).
Aim 1. Characterise thalamo-cortical processing changes in VSS using resting state electroencephalography (EEG) and functional magnetic resonance imaging (fMRI). I have commenced the MRI arm of this study, collecting high resolution anatomical and resting-state fMRI data for >40 VSS patients using a Siemens 7 Tesla MRI. Preliminary analyses reveal widespread changes in neuroanatomy and network connectivity. Using EEG, my group will explore whole brain electrical changes consistent with thalamo-cortical changes.
Aim 2. Identify functional changes between the thalamus and cortex using task-based EEG and MRI guided by our unique VSS OM signature. These studies will be task based, specifically exploring changes in brain activation while patients engage in the OM tasks that underlie characterisation of our VSS OM signature.
Abby I. Metzler & Carrie E. Robertson
Published online: 22 June 2018
Published: 11 December 2021
This study demonstrates a lower visual contrast sensitivity exclusively at 15 Hz in VSS patients and demonstrates frequency-dependent differences in dynamic contrast vision. The peak sensitivities of both parvo- and magnocellular visual pathways are close to a frequency of about 10 Hz. Therefore, this frequency seems to be of crucial importance in everyday life. Thus, it seems plausible that the impairment of contrast sensitivity at 15 Hz might be an important pathophysiological correlate of VSS. Furthermore, the overall age-related decrease in contrast sensitivity only in VSS patients underscores the vulnerability of dynamic contrast detection in VSS patients. Dynamic CT detection seems to be a promising neurophysiological test that may contribute to the diagnosis of VSS.
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Two hundred and forty-eight cases of visual snow: A review of potential inciting events and contributing comorbidities
Dev G Mehta, Ivan Garza, Carrie E Robertson
First Published February 20, 2021
Though most cases of visual snow are spontaneous, potential secondary causes should be recognized by clinicians. Patients who develop visual snow after an inciting event or related to an underlying comorbidity may have a better prognosis than those in whom it develops spontaneously. In select cases, treatment of the suspected underlying cause may significantly alleviate the otherwise typical intractable visual disturbances associated with visual snow.
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It is important to get to know the people and faces behind a disease. No two experiences are alike. Visual Snow Syndrome is on a spectrum from mild to severe cases. From people born with the condition to people who have a sudden onset. Here Liz Brent-Maldonado will tell you her story and journey with Visual Snow Syndrome.
I've had Visual Snow Syndrome my whole life. I remember talking to my mom about it when I was 8 or 9 and realizing that I was seeing things that no one else was seeing (constant sparkle static, extra glow and colors around everything, after images, trailing images, and stars-times-a-billion between the real stars in the night sky). She encouraged me to talk to our eye doctor about it, but he thought I was talking about floaters and dismissed it.
I always hoped it was a superpower I could harness, but instead spent a lot of my life ignoring it in order to just live normally. I never told anyone about it except the occasional significant other. I was always afraid that if I talked about it with doctors or scientists, I would be told I was losing my mind or I would end up locked up in a hospital or lab (I realize this is extreme, but I watched a lot of science fiction movies and tv shows!).
In 2015 I started writing a series of autobiographical essays and realized what a mystery my unique visual experience is and that I wanted to write more about that!
In 2016, I ran across the term "Tetrachromatic Vision" and thought that maybe that was what I had. That discovery inspired a long process of facing my fears, contacting scientists, and getting a new series of ophthalmology tests (which came back normal).
In 2018, I ran across the term Visual Snow Syndrome and realized that this was a better match for my experience. I'm currently writing a book about my investigative journey and living with what I still call my "sparkle vision."
But this year, I was able to share the Visual Snow diagnostic criteria with my primary care provider, which led to confirmation of my self-diagnosis by two neurologists!
I've overcome a lot of fear and doubt to be able to talk more openly to everyone from medical professionals to friends and family about my experience. My dream is to publish my book, help others who experience VSS, and bring awareness to neurodiversity.