Written by Sierra Domb

What Is Visual Snow Syndrome (VSS)?

Visual snow syndrome (VSS) is a neurological disorder that can impact an individual’s vision, hearing, cognition, sensory processing, and quality of life. The condition, VSS, is named after its most common, primary symptom: visual snow (VS), which refers to seeing static, flickering dots, and flashing lights across the entire visual field 24/7 (with your eyes open and closed). Trying to see when experiencing VS is often likened to trying to see in the middle of a snowstorm or through a snow globe that has been shaken up; hence, this is how the term, visual snow, or VS, got its name. The condition, VSS, also encompasses many additional visual symptoms, including palinopsia, enhanced entoptic phenomena, photophobia, and nyctalopia as well as non-visual symptoms, including tinnitus, depersonalization, insomnia, anxiety, depression, paresthesia, and other sensory disturbances. VSS symptoms affect an estimated 2-3% of the world’s population, impacting people of all ages and backgrounds daily.

Symptomatology: What Are the Symptoms of VSS?

Visual Symptoms

• Visual snow (dynamic snow-like dots all over the field of vision)
• Photopsia (flashes of light) or small floating objects
• Photophobia (sensitivity to light)
• Palinopsia (continuing to see an image after it is no longer in the field of vision)
• Entoptic phenomena (seeing images within the eye itself)
• Diplopia (double vision)
• Nyctalopia (impaired night vision)
• Other visual effects, such as starbursts and halos
• Visual distortions

Non-visual Symptoms

• Tinnitus (ringing, humming, or buzzing sounds)
• Depersonalization (feeling detached from yourself)
• Anxiety
• Depression
• Frequent migraines
• Brain fog and confusion
• Dizziness
• Nausea
• Insomnia and other sleep-related issues
• Paresthesia (tingling “pins-and-needles” sensations, commonly in the arms, hands, legs, and feet)
• Sensory disturbances (such as “brain zaps”, or electric shock sensations)

Every Case of VSS is Not the Same

Living with VSS is not the same experience for everyone due to a myriad of factors. While everyone with VSS sees visual snow, or static, 24/7, they may also experience one, several, or all of the other visual and non-visual symptoms associated with VSS. The appearance and intensity of these symptoms, as well as the size, color, density, and/or speed of one’s visual snow/static, can vary. Other considerations for case-by-case differences include if one has experienced VSS symptoms since birth or after sudden onset and one’s medical history/any other medical conditions besides VSS. The degree of impact VSS has on a person’s life can range from mild to moderate to life-altering.

The debilitating nature of VSS symptoms coupled with the medical community’s historic marginalization of VSS patients can profoundly, negatively impact their mental health. This further underscores the necessity for more awareness, education, resources, and research to improve VSS patient care, facilitate effective physician-patient communication, gain more understanding about VSS, and develop additional treatments.

What Causes Visual Snow Syndrome (VSS)?

The exact cause of VSS is still unknown. Research suggests it is related to changes in the visual processing centers of the brain, as well as alterations in the neural signals between the eyes and the brain. The origin of VSS has also been linked to hyperactivity in the visual cortex of the brain. A recent study, supported by the Visual Snow Initiative, discovered the first-ever possible biological basis of VSS, revealing that the patterns of activity in two brain chemical systems, glutamate and serotonin, are different in people with VSS compared to those without the condition. Research into the causes of VSS, its pathophysiology, and further treatment options is ongoing and increasing day by day.

How is Visual Snow Syndrome (VSS) Diagnosed?

Historically, it has been challenging for people with VSS to receive an accurate diagnosis. VSS is diagnosed based on a patient’s symptoms and a thorough clinical evaluation, including a comprehensive medical history and a comprehensive eye exam to rule out other eye-related conditions. (Optometric and ophthalmological examinations typically yield “normal” results.) In some cases, an MRI or EEG may be ordered to rule out other neurological conditions. Neuro-ophthalmologists and neurologists are best equipped to address VSS, including some ophthalmologists, optometrists, and neuro-vision therapists who are certified in the management/treatment of VSS symptoms.

Developed alongside neurologists and neuro-ophthalmologists with expertise in VSS, the Visual Snow Initiative has created the first Diagnostic Criteria for VSS, which can be shown to a doctor to confirm a diagnosis. It can also sometimes be difficult to find a medical professional with knowledge of VSS. The Visual Snow Initiative has created a Directory of Physicians from around the world that can help with diagnosis and treatment options. Additionally, for individuals who are new to VSS or newly diagnosed, the Visual Snow Initiative’s VSS Patient Guide can be an informative resource.

Types of Doctors Involved in Visual Snow Syndrome (VSS)

• Neuro-ophthalmologist: Doctor with expertise in both neurology and ophthalmology, addressing visual issues linked to the nervous system
• Neurologist: Doctor specializing in the diagnosis and treatment of brain, spinal cord, and nervous system disorders
• Ophthalmologist: Doctor specializing in eye care, diagnosing and treating various eye conditions and performing surgeries
• Neuro-optometrist: Vision care professional trained in neurology and optometry, focusing on vision problems related to neurological conditions
• Optometrist: Vision care professional specializing in visual exams, corrective lenses, and managing common eye conditions

Treatment Options & Management Tips for Visual Snow Syndrome (VSS)

(With effectiveness that has been substantiated by published scientific research)

• Neuro-Optometric Rehabilitation Therapy (NORT), or neuro-vision therapy modified for VSS
• Mindfulness-Based Cognitive Therapy (MBCT), also known as MBCT-vision when modified to help both visual and non-visual VSS symptoms
• FL-41 tinted glasses/lenses
• Chromatic filters
• Eating a healthy diet and identifying common triggers, such as stimulants like caffeine, alcohol, and fermented or processed foods that may exacerbate VSS symptoms
• Reducing stress levels, which can cause VSS symptoms to intensify, is essential to mitigating flare-ups
• Learning to retrain your brain by redirecting one’s attention away from the visual disturbances and focusing on the people, places, or objects behind them; practicing this consistently teaches the brain that VSS symptoms, while uncomfortable, are not dangerous
• Moderate physical activity appropriate for one’s level of fitness to improve brain health, neuroplasticity, blood flow, oxygenation, and the release of neurotransmitters, such as endorphins
• Getting sufficient sleep by making your bedroom VSS-friendly, which is essential for cognitive functioning and lessens the chance of symptom flare-ups; use white noise machines (or even a fan) for managing tinnitus, avoid using a phone (that emits blue light) before bedtime, and keep your bedroom dark and free of unnecessary, flashy, or bright visual stimuli
• VSS also affects sensory processing, causing people with VSS to experience heightened sensitivity to external stimuli, such as sights and sounds. This may be managed using the following tips:
  • To combat noise, use earplugs or noise-canceling headphones. If you forget to bring either, if it is safe to do so in the environment, you can cover your ears.
  • To combat bright lights, wear sunglasses or tinted lenses (even indoors). If you forget to bring either, if it is safe to do so in the environment, you can close your eyes.
  • If you can, excuse yourself from the situation and take a break to calm your nervous system.
  • Distract yourself from the stress in the moment by utilizing a fidget tool (you may carry this with you), deep breathing, or guided imagery.
  • While it may be impossible to avoid sensory-triggering environments altogether, it is important to look out for yourself by choosing sensory-friendly activities/events when you can. Your well-being is important, and you can establish boundaries.
  • In addition to your doctor, consider sharing how you are feeling with a friend or family member whom you feel comfortable with. They can become aware of what you are going through and potentially offer support in these situations.

For the latest information, resources, and research regarding Visual Snow Syndrome (VSS), please visit the Visual Snow Initiative website, www.visualsnowinitiative.org.

About Sierra

Sierra Domb is a Visual Snow activist and trailblazer in neuroscience, philanthropy, and communication. Her nonprofit organization, Visual Snow Initiative (VSI), is dedicated to global awareness, education, resources, patient advocacy, treatment development, and research for Visual Snow Syndrome (VSS).