On Feb 7, 2014, I went to sleep with a mild headache but otherwise was in good health. When I woke up the next day, I experienced a series of strange visual, auditory, and tactile symptoms that I later learned were called Visual Snow Syndrome.
I spent several months going from doctor to doctor trying to figure out the cause of these symptoms. I spent two weeks at the Mayo Clinic getting evaluated by some of the top specialists in the world. All of my tests came back negative, no one knew the cause of my symptoms, nor how to treat them.
Over the years, I’ve learned how to effectively manage my symptoms and live comfortably with them. So, I’ve tried to teach others how to do the same. In addition, I’ve tried to help educate the medical community by speaking at medical conferences and writing articles in medical journals.
If you’re reading this page, you’ve likely come here because you are looking for more information on VS or you are trying to contact me directly about VS. Unfortunately, I’ve received hundreds of messages about VS over the past few years and I am no longer able to respond to each of them individually.
So, I created this page to answer all of the most common questions I receive about VS. While I realize this isn’t as helpful as a one-on-one conversation, I sincerely hope this information will provide you with the answers and the support you need.
What is Visual Snow?
Visual Snow is a rare neurological condition characterized by a continuous visual disturbance that occupies the entire visual field. It is described by patients as tiny flickering dots that resemble the static of an old analog television.
Visual Snow Syndrome is a cluster of symptoms commonly found with visual snow. These symptoms include palinopsia (seeing afterimages), entoptic phenomena (floaters and other phenomena of the eye itself), photophobia (sensitivity to light), and nyctalopia.
In addition to visual symptoms, patients often also report tinnitus, migraine, migraine with aura, brain fog, paraesthesia (tingling skin), fine tremors, and depersonalization. These symptoms often cause tremendous difficulties for patients leading to stress, anxiety, depression, and depersonalization/derealization.
Is Visual Snow Dangerous?
No, to the best of my knowledge VS is not dangerous. In addition, it is not a terminal illness. There are reports of people that have had it since they were born and others that have had it well into retirement.
All of the symptoms of visual snow appear to be caused by hypersensitivity to normal sensory phenomena. Other people’s brains normally filter out this information. However, individuals with VS appear to be unable to filter this noise from their sensory awareness.
However, it is important to rule out other conditions that may present with similar symptoms. For that, you would need to see a medical professional.
Will My Visual Snow Get Worse?
Not likely. Most people report very little change in their VS over the course of their lives. A few people have reported gradual improvement over time and a few people have reported gradual worsening over time. However, there’s no reason to assume that your VS will get significantly worse.
My visual snow symptoms have gradually improved over the past few years. When my symptoms first emerged, they were always between 7 and 10 — on a scale of 1-10. Today, they are typically at a 5 or so. However, my ability to manage my symptoms has grown significantly better over time.
What Causes Visual Snow Syndrome?
We currently do not know what causes VS. There are a few working hypotheses, including hypermetabolism of the visual cortex, predictive-coding error, and thalamocortical dysrhythmia. They all seem plausible to me, however, none of these hypotheses have been scientifically verified yet.
I’m also aware of several unscientific claims about the cause of VS. These range from wild speculation, to pseudo-science, and pure nonsense. I, personally, do not subscribe to any of these beliefs nor am I interested in investigating any of these claims. This is outside of my professional training and interests.
Please be skeptical of anyone claiming they know the cause of VS or how to cure it. Unfortunately, there are some people out there trying to take advantage of people suffering from VS. I believe this is morally wrong and I don’t want anyone to be taken advantage of in such a vulnerable state.
What Caused Your Visual Snow?
Honestly, I have no idea and I don’t like to speculate. I went to sleep one night with a mild headache, and I woke up with the first few symptoms. Then over the next two days, all of the remaining symptoms emerged. Almost all of the symptoms have been present ever since.
I had no previous medical conditions, I lead a relatively normal life, and I’ve never taken any recreational drugs. In addition, I had never taken any antidepressants, anti-anxiety medication, or psychotropic drugs. I hadn’t had any antivirals, antibiotics, or vaccinations in the year prior either.
In addition, in the months leading up to my first VS symptoms, I had noticed that I was having difficulty habituating to noxious environmental stimuli. For example, the noise and vibration from the air-conditioning unit outside of my office seemed a lot more annoying to me than usual.
Do You Think (X) Causes Visual Snow?
In short, I don’t know. I’ve heard a few plausible explanations and several other explanations that are not based on any real scientific evidence.
I think stress is likely a contributing factor, migraines appear to be correlated, and possibly excessive computer use or screen time. However, we don’t have any strong evidence to support these claims yet.
Personally, I’m leaving it up to the medical research community to do what they do best and determine the cause of VS through evidence-based scientific investigation.
What Symptoms Do You Experience?
The visual symptoms I experience are persistent low-grade visual static, palinopsia (afterimages), entoptic phenomena (lots of floaters, blue-field entoptic phenomena, etc.), nyctalopia (minor difficulty with night vision), and halos around all lights at night.
Then non-visual symptoms I experience are continuous bilateral non-pulsatile tinnitus (ringing in both my ears), paresthesia (tingling sensation mostly in my hands and feet), and awareness of fine muscle tremors mostly in my arms and legs.
I also experience quite a bit of neck/shoulder pain when I use a computer for too long without taking adequate breaks and in very low humidity. This can also lead to migraines (without aura) if I continue to use the computer, despite my body telling me to take a break.
The brain fog ended about a week after my first symptoms and has not returned. I also no longer experience any stress, anxiety, or depression as a result of my symptoms.
I’ve only experienced depersonalization/derealization once in my life. I experienced it for about three days immediately following a respiratory illness where I had a fever of over 100°F for almost a week straight. It was a very strange and unsettling experience. I sympathize with anyone who experiences it every day.
Did You Cure Your Symptoms?
No, I did not cure my symptoms. I still experience almost all of the same symptoms I had since I first developed VSS back in 2014. On a scale of 1-10, my symptoms were between 7 and 10 for most of the first year. However, they went down to a 5 once until I learned how to manage them effectively.
Today, my symptoms stay around a 5 or so most days — which is much more manageable. I keep them at a 5 through a series of lifestyle changes that I made. I meditate daily, I eat healthy, I get regular exercise, and I enjoy life. Honestly, I live a happier and more productive life now than I did before VS!
Do Your Symptoms Still Bother You?
For the most part, no, my symptoms do not bother me like they used to. Through mindfulness practices, like meditation, I have changed my relationship with my symptoms. My symptoms used to cause me stress; however, now they are just a normal (though sometimes slightly annoying) part of my day-to-day life.
In the past, my symptoms would cause a negative emotional response, which would cause stress, which (in turn) would make my symptoms worse. However, I learned how to unwire this negative response to my symptoms, which broke the feedback loop. As a result, life with VS became much easier to manage.
While these mindfulness practices worked for me, there’s no way for me to know if they will work for you. So, please keep in mind that it took a lot of time and effort to get from where I was, to where I am today. In addition, there’s no guarantee that you will see the same results that I did.
How Did You Learn to Manage Your Symptoms?
All of the information that I currently have available on how I learned to manage my VS symptoms is available in the following videos and articles:
Everything is still the same for me today as I described in the videos. I still have all of my symptoms; however, they are significantly less bothersome now and they don’t cause me stress like they used to.
If you haven’t already done so, I strongly encourage you to watch all of these videos. They answer almost every question that I get asked about VS. In addition, they tell my whole story as best as I can tell it.
What Worked the Best for You?
Of all the things I tried, I believe that the 10-day Vipassana meditation retreat was the most effective. If you only try one thing, this is the one thing I’d recommend. It’s difficult, but it made a huge difference for me. You can learn more here: https://www.dhamma.org
If you’re interested in learning about the science behind mindfulness and meditation, I recommend The Science of Mindfulness by Prof. Ron Siegel. However, please keep in mind that learning about meditation is very different from practicing meditation. You will still need lots of practice to gain any of the benefits.
I also spent a lot of time learning about Cognitive Behavioral Therapy (CBT) and Mindfulness-based Stress Reduction (MBSR). These techniques helped me to reframe my negative thought patterns so that I could more easily manage the stress that my symptoms were causing me.
While I learned these CBT and MBSR skills from books, I actually recommend learning them from a trained professional. There are a lot of great counselors and psychologists out there that can teach you these techniques.
How Do You Meditate?
In general, I sit in a comfortable seated position, I close my eyes, and I relax. Then, I focus my attention on my breath. If my attention wanders from my breath, I gently nudge my attention back to my breath. I repeat this over and over again for 30 mins each day. Over time, you will learn how to calm your mind.
I also practice my meditation with biofeedback and neurofeedback. For biofeedback, I use a Wild Divine Iom Pro (discontinued). For neurofeedback, I use a Muse S. The neurofeedback helps me to notice when my thoughts wander and the biofeedback helps me to notice when I’m becoming stressed.
Will (X) Cure My Visual Snow?
In short, I don’t know. I’m aware of a few potential treatment protocols being researched that seem promising. However, none of these treatments have been clinically proven and reproduced by an independent 3rd party. So, I can’t recommend anything yet.
Unfortunately, I’m also aware of several VS scams, shams, and unscientific treatments. Please be skeptical of anyone claiming they can cure your VS unless they can provide sufficient scientific evidence to back their claim. As of 2020, there are no known cures for VS — if there were, I assure you, I would know.
I’m not (personally) interested in pursuing any treatment for my VS until we have a full understanding of the cause of VS and a rational treatment protocol that has been clinically proven and independently replicated. In addition, it would need to have minimal side effects and low risk factors for me to consider it.
When Will We Find a Cure?
I’m confident that we will eventually have a scientific understanding of the cause of visual snow. In addition, I believe that this will eventually lead to a treatment for VS. There are doctors and scientists around the world currently searching for a cure for VS as a result of work done by the VS community.
However, we don’t know how long it will take to develop a safe and effective treatment. So, in the meantime, it’s important that we each learn how to manage our own symptoms and live happy and productive lives. In addition, we all need to do our part to help raise awareness for visual snow and move the research forward.
Thanks to the efforts of organizations like the Visual Snow Initiative, research is beginning to pick up as more medical professionals become aware of this condition. I have been personally involved with their organization and participated at the first-ever Visual Snow Conference as a guest speaker.
I’m Really Struggling — Can You Help Me?
Unfortunately, I’m not a medical professional, so I’m not qualified to provide any kind of medical advice or help. In addition, I’m not professionally trained to help you through any kind of emotional or psychological struggles that you may be dealing with. I wish I could help, but unfortunately, I can’t.
If you are struggling and you need help, I recommend that you reach out to the Visual Snow Initiative. They can provide you with information and put you in contact with a trained medical professional that can actually help. In addition, if you feel you just need to tell your story to someone, they will listen.
I Have a Question — Can I Contact You Directly?
I get several messages each week asking questions about VS. Unfortunately, I’m not a doctor nor a psychologist, so I’m unable to help with most of the emails I currently receive.
In addition, if I personally responded to every visual snow message that I received, I would have little time for my professional work with AI and Data Science or my non-profit work with tech education.
So, unfortunately, I am no longer able to personally respond to any VS emails, posts, or messages. If you send me a message about VS, you will receive a URL to this page as my response.
Will You Speak At My Conference or Event?
I speak at several conferences and events around the world each year. Most of my presentations are on AI, ML, and Data Science. However, from time to time, I also speak on mindfulness, meditation, and VS.
If you’re interested in having me speak at your conference or event, please contact me and provide me with all of the details. If it’s something that I’m interested in, we’ll discuss it further.
What Can I Do To Help Others?
First, take care of yourself. You can’t help others if you’re struggling to make it through each day yourself. However, once you are able to manage your symptoms effectively, it definitely helps to focus your attention on helping others in need.
The best thing you can do to help others is to support the Visual Snow Initiative. You can donate money to help fund VS research, volunteer your time to raise VS awareness, or provide support in other ways. The VSI and the research that it is funding are currently our best hope for finding a cure for visual snow.
What Other Resources Are Available?
Below is a list of all of the online resources on VS that I’ve compiled while doing research for my VS presentations at medical conferences.
20101022 – Disorders of visual perception – Journal of Neurology, Neurosurgery & Psychiatry
20120430 – ‘Visual Snow’ Called Real, Not Drug Related – Medpage Today
20120523 – Melting the Myths of Visual Snow – Psychology Today
20120815 – ‘Visual Snow’ May Be a Distinct Clinical Entity – Clinical Neurology News
20130128 – The woman who sees snowflakes even when it’s sunny – Daily Mail Online
20130200 – Visual Snow – It’s perception and it’s cause
20140318 – ‘Visual snow’ – a disorder distinct from persistent migraine aura. – PubMed – NCBI
20140509 – The relation between migraine, typical migraine aura and visual snow – PubMed – NCBI
20140806 – Should ‘visual snow’ and persistence of after-images be recognised as a new visual syndrome- – Journal of Neurology, Neurosurgery & Psychiatry
20141100 – Le phénomène de neige visuelle (The Visual Snow Phenomenon)
20150600 – Visual snow – persistent positive visual phenomenon distinct from migraine aura – PubMed – NCBI
20150900 – Das Visual-Snow-Syndrom – Symptome und ophthalmologische Befunde
20150900 – Visual Snow – Report of three cases
20160600 – Visual Snow – A thalamocortical dysrhythmia of the visual pathway – Journal of Clinical Neuroscience
20160808 – The mysterious eye condition of ‘visual snow’- The Guardian
20160810 – Visual Snow Syndrome – Symptoms and Ophthalmological Findings – PubMed – NCBI
20160926 – When ‘seeing snow’ means your eyes are in danger – Daily Mail Online
20161127 – Visual Snow – A Newly Recognized Neurological Disorder
20170127 – Visual Snow-Syndrom – Verrauschtes Bild vor Augen – ARD Mediathek
20170205 – Rare Disease Visual Snow – Jetzt
20170319 – Visual Snow Guide – Axon Optics
20210115 – Disrupted connectivity within visual, attentional and salience networks in VSS
What If I Need Something Else?
Almost all of the emails that I get that are not asking one of the questions that I’ve already addressed on this page are simply looking for emotional support and reassurance. Trust me, I understand. I was once in a very similar place myself. I know how difficult this journey is and how scary it can be at times.
I honestly wish I was able to provide you with the support that you need. Unfortunately, there are simply not enough hours in the day to help everyone that reaches out to me. More importantly, I’m simply not qualified to be providing the medical, emotional, or psychological support that you need.
So, I encourage you to reach out to the Visual Snow Initiative if you need help. That’s why this organization exists. They can put you in contact with someone who is actually qualified to help you with your visual snow. In addition, there are numerous VS support groups that exist for this exact reason.
Please know that you are not alone in this — together, we can make a difference!