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COLLABORATE, EDUCATE, AND CURE
Visual Snow Syndrome (VSS) is a neurological disorder that impacts an individual’s vision, hearing, cognition, sensory processing, and quality of life. The defining characteristic of VSS is seeing visual snow, which can be described as seeing static, flickering dots, and flashing lights 24/7 (with your eyes open and closed). Some describe it as trying to see in the middle of a snowstorm or through a snow globe that has been shaken up. VSS entails more than just seeing visual snow. People with VSS also commonly experience many debilitating visual and non-visual symptoms. VSS symptoms affect an estimated 2-3% of the world’s population.
The Visual Snow Initiative (VSI) is a nonprofit organization dedicated to global awareness, education, resources, patient advocacy, treatment development, and research for VSS. To date, our team has heard from people affected by VSS in over 93 countries. Together, we can find solutions!
What is Visual Snow Syndrome?
If you have never heard of Visual Snow Syndrome (VSS) before or if you have VSS and find it difficult to explain your condition to others, this video is for you. Physicians may also show this video to their patients or colleagues to help them better understand VSS. VSS is a complex condition, but the explanation of it does not have to be.
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LEARN
Use our diagnostic tools and educational resources.
JOIN THE CAUSE
Share your journey and raise awareness for VSS.
What is It Like Having VSS?
Visual Snow Symptoms
Visual Snow Syndrome (VSS) can affect people of all ages and backgrounds. The condition encompasses an array of visual and non-visual symptoms.
Visual & Non-Visual Symptoms
Visual snow (dynamic snow-like dots across the entire visual field)
Palinopsia (continuing to see an image after the stimulus has been removed)
Photopsia (flashes of light or small floating objects)
Enhanced entoptic phenomena (excessive floaters and rings of light shooting across the entire visual field, more noticeable when looking at bright surfaces such as the blue sky)
Photophobia (sensitivity or intolerance to light)
Nyctalopia (impaired night vision)
Diplopia (double vision)
Visual distortions
Susceptibility to sensory overload (the brain receives more sensory input than it can handle, triggering a “flight-or-fight” response)
Hyperacusis (increased sensitivity to sounds, especially those with specific frequencies)
Tremors (involuntary, unintentional, rhythmic movements of the body)
Balance issues (difficulty maintaining body position/stability)
Other visual phenomena, such as starbursts and halos
Tinnitus (ringing or buzzing noise in the ears)
Anxiety
Depression
Derealization
Depersonalization (feeling detached from yourself)
Frequent migraines
Brain fog and confusion
Dizziness
Nausea
Paresthesia (tingling “pins-and-needles” sensations, commonly in the arms, hands, legs and feet)
Insomnia and other sleep-related issues
Sensory disturbances (such as “brain zaps”, or electric shock sensations)
Sensory hypersensitivity / hyperesthesia (sensitivity to stimuli, such as sights and sounds)
Cutaneous Allodynia (pain sensation to the skin/scalp from innocuous (non-painful) stimuli, such as a hairbrush on the scalp or glasses on the nose/ears)
Recent Highlights
Visual Snow Syndrome and Visual Snow Now Have ICD-11 Codes: A Historic Achievement by the Visual Snow Initiative (VSI) The World Health Organization (WHO) has officially classified Visual Snow Syndrome…
With your generous support, the Visual Snow Initiative (VSI) is able to fund the groundbreaking research of Dr. Francesca Puledda (principal investigator), Dr. & Prof. Peter Goadsby (supervisor), and their…
Click here to read the full article originally published by Patient Worthy. Sierra Domb on Visual Snow Syndrome: A Journey of Resilience, Medical Trauma, and Advocacy In this insightful article,…
The Visual Snow Initiative (VSI) is excited to announce a new partnership with the Oxford Mindfulness Foundation, bringing Mindfulness-Based Cognitive Therapy (MBCT) to individuals with Visual Snow Syndrome (VSS) through…
Sierra Domb Leads Visual Snow Initiative to Historic ICD Code for Visual Snow Syndrome: WE DID IT! Official Verdict The Visual Snow Initiative (VSI) has successfully completed the final phase…
Founder of the Visual Snow Initiative (VSI), Sierra Domb, is happy to announce that we have funded a new collaborative study investigating if a specific pathway can change what we think…
Sierra Domb Announces Historic ICD Milestone for Visual Snow Syndrome
The Visual Snow Initiative (VSI) has concluded the last phase of its mission to secure a first-ever ICD code for Visual Snow Syndrome (VSS). Our Founder, Sierra Domb, has been working alongside Dr. Peter Goadsby and Dr. Owen White, for the inclusion of VSS in the latest edition of the International Classification Diseases, or ICD-11, which is maintained by the World Health Organization (WHO).
Sierra Domb Shares 2024 VSI Updates on Visual Snow Syndrome
Sierra Domb, our Founder, shares the Visual Snow Initiative’s latest updates on Visual Snow Syndrome, including:
- A new medication study
- Ongoing collaborative global research
- Insights from experts
- Supportive and educational resources
- Advocacy efforts
- Additional news and developments
Our Collaborators
Some of the institutions we have worked with and continue to work with include:
Massachusetts Institute of Technology
Cambridge, MA, USA
Monash University
Melbourne, Australia
Moorfields Eye Hospital NHS Foundation Trust
London, England
University of Bern
Bern, Switzerland
King’s College
London, England
University of Oxford
Oxford, England
NIH (National Institutes of Health)
Maryland, United States
University of California, Los Angeles
California, USA
University of Colorado
Boulder, CO, USA
Imperial College
London, England
McGill University / Université McGill
Montreal, Quebec, Canada
NIHR National Institute for Health and Care Research
Cambridgeshire, United Kingdom
Binghamton University
New York City, USA
Patient Worthy: Rare Patient News. Well Done.
Virginia, USA
University of Queensland
Brisbane, Australia
York University
Toronto, Ontario, Canada
University of Toronto
Toronto, Ontario, Canada
Oxford Mindfulness Foundation
Oxford, England
The University of Sheffield
Sheffield, England
University of Perugia
Perugia, Italy
Bournemouth University
Poole, England
University of Minnesota
Minnesota, United States
Sechenov University
Moscow, Russia
Brain Communications
Journal of Neuro-Opthalmology
Neurology (American Academy of Neurology)
Headache, the Journal of Head and Face Pain
ScienceDirect
Healthcare Brew
Optometry Today (OT)
The New Optometrist
Modern Retina
Brain: a Journal of Neurology
Emianopsia Magazine
Brain Communications
Journal of Neuro-Opthalmology
Neurology (American Academy of Neurology)
Headache, the Journal of Head and Face Pain
ScienceDirect
Healthcare Brew
Optometry Today (OT)
The New Optometrist
Modern Retina
Brain: a Journal of Neurology
Emianopsia Magazine
Brain Communications
Journal of Neuro-Opthalmology
Neurology (American Academy of Neurology)
Headache, the Journal of Head and Face Pain
ScienceDirect
Healthcare Brew
Optometry Today (OT)
The New Optometrist
Modern Retina
Brain: a Journal of Neurology
Emianopsia Magazine
Brain Communications
Journal of Neuro-Opthalmology
Neurology (American Academy of Neurology)
Headache, the Journal of Head and Face Pain
ScienceDirect
Healthcare Brew
Optometry Today (OT)
The New Optometrist
Modern Retina
Brain: a Journal of Neurology
Emianopsia Magazine
Brain Communications
Journal of Neuro-Opthalmology
Neurology (American Academy of Neurology)
Headache, the Journal of Head and Face Pain
ScienceDirect
Healthcare Brew
Optometry Today (OT)
The New Optometrist
Modern Retina
Brain: a Journal of Neurology
Emianopsia Magazine
Brain Communications
Journal of Neuro-Opthalmology
Neurology (American Academy of Neurology)
Headache, the Journal of Head and Face Pain
ScienceDirect
Healthcare Brew
Optometry Today (OT)
The New Optometrist
Modern Retina
Brain: a Journal of Neurology
Emianopsia Magazine
Brain Communications
Journal of Neuro-Opthalmology
Neurology (American Academy of Neurology)
Headache, the Journal of Head and Face Pain
ScienceDirect
Healthcare Brew
Optometry Today (OT)
The New Optometrist
Modern Retina
Brain: a Journal of Neurology
Emianopsia Magazine
Brain Communications
Journal of Neuro-Opthalmology
Neurology (American Academy of Neurology)
Headache, the Journal of Head and Face Pain
ScienceDirect
Healthcare Brew
Optometry Today (OT)
The New Optometrist
Modern Retina
Brain: a Journal of Neurology
Emianopsia Magazine
Brain Communications
Journal of Neuro-Opthalmology
Neurology (American Academy of Neurology)
Headache, the Journal of Head and Face Pain
ScienceDirect
Healthcare Brew
Optometry Today (OT)
The New Optometrist
Modern Retina
Brain: a Journal of Neurology
Emianopsia Magazine
Brain Communications
Journal of Neuro-Opthalmology
Neurology (American Academy of Neurology)
Headache, the Journal of Head and Face Pain
ScienceDirect
Healthcare Brew
Optometry Today (OT)
The New Optometrist
Modern Retina
Brain: a Journal of Neurology
Emianopsia Magazine
Frontiers
Frontiers in Neurology
PubMed
Annals of Neurology
Elsevier
Advances in Ophthalmology and Optometry
Morning Brew
Current Opinion in Neurology
Oxford Academic
Frontiers
Frontiers in Neurology
PubMed
Annals of Neurology
Elsevier
Advances in Ophthalmology and Optometry
Morning Brew
Current Opinion in Neurology
Oxford Academic
Frontiers
Frontiers in Neurology
PubMed
Annals of Neurology
Elsevier
Advances in Ophthalmology and Optometry
Morning Brew
Current Opinion in Neurology
Oxford Academic
Frontiers
Frontiers in Neurology
PubMed
Annals of Neurology
Elsevier
Advances in Ophthalmology and Optometry
Morning Brew
Current Opinion in Neurology
Oxford Academic
Frontiers
Frontiers in Neurology
PubMed
Annals of Neurology
Elsevier
Advances in Ophthalmology and Optometry
Morning Brew
Current Opinion in Neurology
Oxford Academic
Frontiers
Frontiers in Neurology
PubMed
Annals of Neurology
Elsevier
Advances in Ophthalmology and Optometry
Morning Brew
Current Opinion in Neurology
Oxford Academic
Frontiers
Frontiers in Neurology
PubMed
Annals of Neurology
Elsevier
Advances in Ophthalmology and Optometry
Morning Brew
Current Opinion in Neurology
Oxford Academic
Frontiers
Frontiers in Neurology
PubMed
Annals of Neurology
Elsevier
Advances in Ophthalmology and Optometry
Morning Brew
Current Opinion in Neurology
Oxford Academic
Frontiers
Frontiers in Neurology
PubMed
Annals of Neurology
Elsevier
Advances in Ophthalmology and Optometry
Morning Brew
Current Opinion in Neurology
Oxford Academic
Frontiers
Frontiers in Neurology
PubMed
Annals of Neurology
Elsevier
Advances in Ophthalmology and Optometry
Morning Brew
Current Opinion in Neurology
Oxford Academic
Medical/Scientific
Publications
Our global impact and VSI-funded research studies have been published in the following medical/scientific journals and clinical databases:
Latest Updates
Here, our team will share the latest news and updates regarding the Visual Snow Initiative, research studies, interviews, projects, as well as any additional information related to our global efforts to better understand, treat, and/or cure Visual Snow Syndrome.
Visual Snow Syndrome and Visual Snow Now Have ICD-11 Codes: A Historic Achievement by the Visual Snow Initiative (VSI) The World Health Organization (WHO) has officially classified Visual Snow Syndrome…
This 2023 study by the Visual Snow Initiative is significant as it provided scientific evidence consistent with previous research, further proving that Visual Snow Syndrome (VSS) is a distinct neurological…
Visual snow syndrome (VSS) is a neurological condition characterized by the persistent presence of tiny, flickering dots in one’s visual field, resembling the static on an old television screen. This…
Tinnitus, brain fog and visual disturbances are “constant companions” for Steve Gillis since his recovery from a virus in 2023. He said he sees through “a set of filters” with…
New Videos Starting On: April 2, 2025 In this video series, Dr. Owen White will provide insights into the possible origins of Visual Snow Syndrome (VSS), the role of brain…
The Initiative
The Visual Snow Initiative (VSI) was founded by Sierra Domb, who struggled, as many did, with the lack of information and resources available to those with Visual Snow Syndrome (VSS). It was difficult for VSS patients to understand their condition and for physicians to help them. Sierra realized that further awareness, education, research, and solutions for VSS were necessary in order to reduce the high frequency of intrusive and unnecessary medical testing, marginalization, misdiagnosis, trauma, and isolation that many people with VSS endure (but should not have to).
VSI is a nonprofit organization dedicated to awareness, education, resources, patient advocacy, treatment development, and research for VSS. Our team consists of passionate VSS experts, physicians, scientists, and researchers from around the world who are dedicated to creating and finding solutions. With your generous contribution, we gain the ability to collaborate on a global scale and continue to produce new research that can help those with VSS.
The Visual Snow Conference
One of the earliest efforts of the Visual Snow Initiative was the establishment of the first Visual Snow Conference in history. Held on May 5th, 2018, at UCSF, this free summit brought together patients, their families, and Visual Snow Syndrome (VSS) experts from around the world. Everyone involved sought to raise awareness, share the current body of research, provide education, offer resources, and foster understanding for VSS.
NEWS & RESEARCH
Our team shares the latest news and updates regarding the Visual Snow Initiative, research studies, interviews, projects, as well as any additional information related to our global efforts to better understand, treat, and/or cure Visual Snow Syndrome.
PHYSICIANS & SPECIALISTS
Our Physicians & Specialists Directory is comprised of medical professionals from around the world. Many of them have helped members of the Visual Snow Syndrome community, who have then referred them to us and maintained they have knowledge of the condition.
VISUAL SNOW SYNDROME WARRIORS
These inspiring individuals living with Visual Snow Syndrome share their experiences and how they try to overcome its symptoms.
VSI Website Walkthrough
This detailed video is guide designed to help you navigate all the information and resources related to Visual Snow Syndrome (VSS), Visual Snow Initiative (VSI), and more available on our website.
- Discover the latest updates and enhancements on our website.
- Access new features and tools designed to assist VSS patients, medical professionals, and researchers.
- Learn how to quickly find essential information and resources related to VSS, VSI, and more.
- Check out how our new layout improves your browsing experience.
- Explore ways to connect with our community and support the VSI’s mission.
If you need guidance on navigating our website or are looking for something specific but are not sure where to start, we recommend watching this tutorial.
What the Experts Are Saying
Medical Professional Testimonials
“The recognition of Visual Snow, broadening education, and funding research would not have happened were it not for the Visual Snow Initiative. The condition is now being studied actively by a number of groups on several continents. Research would be idling in a backwater without VSI. Thank you to the Visual Snow Initiative for all you have done and continue to do.”
Peter GoadsbyMD, PhD, DSc, Professor of Neurology, UCLA, Awarded 2021 Brain Prize
“Almost single-handedly, the Visual Snow Initiative has educated Visual Snow Syndrome patients and helped them understand that they have a true disorder. Their team has played a pivotal role in bringing together Visual Snow patient groups with physicians and researchers from around the world.”
Professor Owen WhitePhD, MD, M.Sc, MB.BS, Ocular Motor Research Unit “Fielding/White Group”, Dept. of Neurology
“The recognition of Visual Snow, broadening education, and funding research would not have happened were it not for the Visual Snow Initiative. The condition is now being studied actively by a number of groups on several continents. Research would be idling in a backwater without VSI. Thank you to the Visual Snow Initiative for all you have done and continue to do.”
Peter GoadsbyMD, PhD, DSc, Professor of Neurology, UCLA, Awarded 2021 Brain Prize
“Visual Snow Initiative is the key player dedicated to improving the well-being of individuals affected by visual snow syndrome. VSI is crucial in all aspects: raising awareness, promoting education, and – importantly – supporting and coordinating research. They were able to contact clinicians and initiate research. This resulted in the definition of criteria for visual snow syndrome that are now used all over the world and an enormous increase of our understanding of the underlying mechanisms.”
Christoph SchankinMD, PhD, Associate Professor & Head of Inselspital Headache Clinic, Dept. of Neurology
“The VSI has been instrumental in raising awareness and acceptance of Visual Snow Syndrome as a neurological condition, educating patients about their disorder, and kickstarting the efforts made by researchers to understand what underlies their myriad of visual and other sensory symptoms. The work initiated by VSI has ensured that physicians and ophthalmologists are now mindful of the constellation of symptoms that define the syndrome, ensuring that patients’ concerns are not dismissed and that patient resources are now available.”
Joanne FieldingPhD, Ocular Motor Research Unit “Fielding/White Group”, Dept. Neurology
“The VSI has played an incredible role in the advancement of VSS awareness, education, and research. I have had patients who made their own accurate diagnosis of VSS on the basis of their information. And I am able to use the VSI’s webpages as a trustworthy resource that allows my patients a place to land for information after the diagnosis.”
Victoria PelakMD, Professor of Neurology and Ophthalmology
“I was determined not to let Visual Snow Syndrome stifle my ambition. I refused to let this circumstance turn me into a person I wasn’t.”
