Understanding Visual Snow Syndrome

What is Visual Snow Syndrome (VSS)?

To understand the profound impact of VSS, we need to look beyond the eyes and focus on the brain. VSS is not a structural eye problem; it is a neurological, specifically neuro-ophthalmological, condition that affects how the brain interprets visual information. This altered processing can influence both what we see and how the brain responds to sensory input, contributing to the persistent visual disturbances and non-visual symptoms experienced by those with VSS. The condition is now also classified as a spectrum disorder within the fields of neurology, neuro-ophthalmology, and neuro-optometry.

VSS is considered a network disorder of the brain, meaning it arises from disruptions in interconnected neural networks rather than a single localized area. These networks integrate sensory, motor, and cognitive functions, and when their coordination is disrupted, they can produce the wide range of symptoms observed in VSS.

Research to date indicates that VSS involves atypical processing of visual and sensory information, including hyperactivity in the visual cortex, thalamus, and occipital region such as the lingual gyrus, along with neural misfirings. Altered neurotransmission involving serotonin, glutamate, and possibly GABA has also been investigated as a potential biomarker. Together, these findings point to irregular sensory filtering and metabolic stress in visual brain regions, helping to explain why symptoms vary between individuals and why network irregularities are associated with continuous visual disturbances like flickering or static, as well as non-visual comorbidities such as tinnitus, migraines, and sensory overload.

Potential Triggers and Onset of Visual Snow Syndrome

The exact cause of VSS remains undetermined, though numerous potential triggers for its onset have been identified:

• Certain medications, particularly those with serotonin reuptake inhibiting properties
• Extreme physical or mental stress
• Concussions or traumatic brain injuries (TBI)
• Migraines, especially migraine with aura
• Infectious diseases
• Some surgical procedures

The diversity of these triggers underscores the complexity of VSS, suggesting it arises from a combination of genetic, neurological, and environmental factors. 

Physical and emotional stress, lack of sleep, which are sometimes unavoidable, and the consumption of caffeine or alcohol can often worsen symptoms. Flares usually return to baseline over time. For example, a flare rated 10 out of 10 may settle back to 3, 5, or 7 depending on the person. For many, VSS feels like a 10 at all times. For those born with VSS, their brains tend to adapt from a younger age, making the static and other symptoms less noticeable. It is also common for people born with VSS not to realize they have a neurological condition because they have always experienced life with VSS symptoms, recognizing it as their “normal”. In contrast, someone who experiences onset later in life notices the stark difference between life before and after VSS. 

Please note that VSS can affect everyone differently. Symptoms, severity, and medical history vary, so it is important to consult a qualified medical professional, such as a neurologist, neuro-ophthalmologist, neuro-optometrist, or neuro-vision therapist, for care tailored to your needs. Each individual should determine what approach is most comfortable and realistic for them with guidance from a trusted healthcare provider.

The Visual and Non-Visual Symptoms of Visual Snow Syndrome

The defining feature of VSS is seeing Visual Snow (VS), a continuous disturbance that looks like flickering dots, static, or “snow” covering the entire visual field, whether the eyes are open or closed. People with VSS see this constantly, 24/7, without any relief.

But VSS encompasses far more than the static. It is a complex, multi-sensory condition. For a clinical diagnosis, an individual typically experiences the continuous static for more than three months, along with at least two other specific visual symptoms, such as:

• Palinopsia: Seeing afterimages or trailing trails behind moving objects
• Photophobia: Severe sensitivity to light
• Nyctalopia: Impaired night vision or difficulty seeing in dim light
• Enhanced Entoptic Phenomena: A heightened awareness of floaters, often in excessive numbers, the blue field entoptic phenomenon (seeing tiny sparks in the sky, especially against a blue background), or spontaneous flashes of light, which are a type of photopsia

Because VSS is a neurological processing disorder, it frequently brings a cascade of non-visual symptoms and comorbidities. Many of us also experience persistent ringing or buzzing in the ears (tinnitus), debilitating migraines with or without aura, dizziness, tingling or numbness in the extremities (paresthesia), electric shock-like sensations throughout the body, and episodes of derealization. The cognitive and emotional toll caused by the visual and sensory disturbances can be equally significant, often disrupting daily functioning and overall wellbeing. This can include brain fog, difficulty concentrating, severe sleep disturbances such as insomnia, anxiety, depression, and feelings of depersonalization. 

Many people with VSS also commonly grapple with other co-occurring health conditions, adding to the challenges. Personally, in addition to the onset of my VSS at age 21, I have lived with Erythromelalgia (EM), a rare neurovascular disorder, and Autoimmune Dysregulation since childhood.

The Global Impact and Severity of Visual Snow Syndrome

What often shocks many people is the sheer scope of this condition. VSS is estimated to affect 2-3% of the global population. It does not discriminate and can occur at any point in life, from early childhood to late adulthood. In fact, you might have VSS, or know someone who does, without ever knowing its name. Many individuals are born with the condition and grow up thinking that everyone sees the world through a veil of static. The severity of cases varies widely: for some it is mild, for others moderate, and for others severe and disruptive. 

Although scientific researchers report that VSS is not degenerative and is not associated with blindness, this persistent neurological disorder can cause unceasing visual and sensory disturbances that interfere with daily functioning and quality of life for many across all ages. On top of their visual and non-visual symptoms, the long-standing lack of awareness, aid, and resources, combined with the medical community’s historic neglect and limited understanding of VSS, has only deepened the suffering of patients.

Turning Medical Struggles into a Catalyst for Change: The Visual Snow Initiative

Faced with debilitating visual and non-visual symptoms, a global lack of information, limited support, and VSS research without funding, I felt completely devastated. Shortly after, I developed Post-Traumatic Stress Disorder (PTSD), overwhelmed by the medical trauma of VSS and years of frustration navigating a healthcare system that could not effectively address my medical challenges. I tried to adapt, but school, work, daily tasks, and accepting my new reality became a constant struggle.

When I realized that no one was coming to save me, and discovered countless other heartbreaking cases worldwide, spanning all ages and facing similar circumstances, I decided to channel my trauma into advocacy. Even though I felt unqualified and unsure where to begin, I knew nothing would improve unless action was taken. In 2018, I channeled my pain into purpose and founded the Visual Snow Initiative (VSI), a nonprofit created to raise awareness, develop education and resources, secure recognition, and advance research for Visual Snow Syndrome.

I started by reaching out to the few researchers worldwide who had published studies on VSS and assembling a team of passionate advocates. Many told us that it would be impossible, no one would listen, progress could never be made, and I should end my life. But we pressed on.

In 2018, I organized the first Visual Snow Conference, bringing together VSS experts, patients, and their loved ones from around the world. After building VSI’s Global Research Team, we facilitated international research across universities and medical institutions in seven countries, contributing to a fourfold increase in scientific publications on VSS. Our collaborations advanced understanding of symptom patterns, brain networks, neurotransmitter activity, potential biomarkers, and various treatment approaches for managing VSS symptoms, areas where little research previously existed. Today, through VSI, VSS is being actively studied worldwide, symptom management strategies are being explored, and a variety of VSS-related resources are available for patients of all ages, doctors, and researchers.

VSI successfully campaigned to secure the first official ICD (International Classification of Diseases) codes for Visual Snow Syndrome (condition) and Visual Snow (symptom) in the WHO’s ICD‑11, legitimizing VSS and its primary symptom in modern medicine. VSI also created a globally accessible official Diagnostic Criteria for VSS, the first Global Directory of VSS Physicians, and the first pediatric resource for VSS, VSI 4 Kids, to support children, teens, and parents affected by the condition. 

Over the years, VSI has built a comprehensive library of VSS resources, with nearly 800 items including 300 educational videos, guides, research summaries, patient stories, clinician listings, and tools. Multi-channel global awareness campaigns, both online and in-person, have brought newfound attention to a condition that has long been underrepresented despite its validity and widespread impact.

Every donation to VSI goes directly to research to better understand Visual Snow Syndrome. This helps expand safe, effective, and evidence-based treatment options and supports researchers in their long-term pursuit of a cure. As scientific research advances, our team simultaneously continues to foster global collaboration, raise awareness, and develop resources that empower VSS patients, caregivers, and healthcare professionals worldwide.

Shaping the Future of Understanding for VSS

To date, the Visual Snow Initiative has connected with individuals affected by VSS in over 93 countries, reflecting the global prevalence of this condition across all ages and backgrounds. While VSS has recently gained official clinical and scientific recognition and significant progress has been made since 2018, continued awareness, education, advocacy, research, and resources remain critical. These efforts help improve diagnostic accuracy, advance scientific knowledge, expand treatment options, foster compassion and understanding, and enhance the quality of life for those affected. They also work to reduce misdiagnosis, marginalization, and mistreatment of VSS patients while supporting researchers in their long-term efforts to study VSS and one day discover a cure.

If you are reading this and recognizing your own experiences in these words, know this: your symptoms are real, and your experiences matter. Living with Visual Snow Syndrome can be challenging, but your resilience, efforts, and voice can help drive progress. Be proud of yourself for enduring, advocating for your own care, and navigating a world that is only beginning to understand the complexity of what you face. To anyone living with VSS or managing health challenges, please be kind to yourself and honor every step forward, whether through advocacy, learning, or simply doing your best on a difficult day. Each effort is meaningful, and collectively, these contributions help advance understanding, improve care and systems, and support the science that could one day transform lives for the better.

To learn more about Visual Snow Syndrome (VSS) and access helpful information and a variety of resources for patients, doctors, and researchers, please visit: https://www.visualsnowinitiative.org