frequently asked questions

> Frequently Asked Questions

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Visual Snow Syndrome (VSS) is a neurological condition that impacts an individual’s vision, hearing, cognition, sensory processing, and quality of life. The primary symptom 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). VSS also entails a variety of other debilitating visual and non-visual symptoms. It is not a structural issue with the eyes.

VSS is a processing condition that originates in the brain, not the eyes. This explains why eye tests typically come back “normal” for people with VSS and why it is so difficult for physicians to diagnose, especially if they are unfamiliar with the condition.

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. 

In a recent brain scan study supported by the Visual Snow Initiative, researchers discovered a possible biological basis for Visual Snow Syndrome.

Using a combination of information from positron emission tomography (PET) imaging information on the distribution of different chemical receptors in the brain and functional Magnetic Resonance Imaging (fMRI), researchers found that the patterns of activity in two brain chemical systems – glutamate and serotonin – are different in people with Visual Snow Syndrome compared to those without the condition.

“There was less synchronised activity (or functional connectivity) in the glutamate networks in the anterior cingulate cortex (ACC) in those with VCC compared to healthy controls. The ACC is a hub for thinking and top-down control over sensory inputs and the different pattern of activity could represent an interruption in the filtering and integration of visual information. 

Analysis also showed that VSS patients had reduced functional connectivity in the serotonin networks of the visual cortex, insula, temporal pole and orbitofrontal areas of the brains compared to healthy controls. This reduced connectivity in serotonin networks was also seen in migraine patients with aura suggesting a biological link between VSS and aura. The findings suggest that serotonin activity in VSS patients may be influencing the integration of complex sensory information.” — National Institute for Health and Care Research (NIHR) Maudsley Biomedical Research Centre

Research into the causes of VSS is ongoing and increasing day by day, so it is likely that we will learn more about its causes in the coming years.

The most common symptoms of VSS include visual snow (seeing static), photophobia (sensitivity to light), tinnitus (ringing in the ears), migraines (with or without aura), and visual disturbances, such as enhanced entoptic phenomena, halos, palinopsia, and more.

For a more comprehensive list of VSS’s visual and non-visual symptoms, please see our Diagnostic Criteria.

If you have been recently diagnosed with Visual Snow Syndrome (VSS) or are new to VSS, please review the Visual Snow Initiative’s VSS Patient Guide.

Note: If you suspect you or a loved one may have VSS but have not received a diagnosis, please consult a qualified healthcare professional (such as a neuro-ophthalmologist or other physician within our directory) and show them the VSS Diagnostic Criteria.

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 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, neuro-optometrists, and vision therapists who are trained in the management/treatment of VSS symptoms. 

If you suspect you may have VSS, you can refer your doctor to our Diagnostic Criteria.

It can sometimes be difficult to find medical professionals who understand or specialize in VSS. The VSI has a list of physicians from around the world with knowledge of VSS that can help with diagnosis and treatment options. For more information, please see our Physicians & Specialists Directory.

Neuro-ophthalmologists and neurologists are best equipped to address VSS, including some ophthalmologists, optometrists, neuro-optometrists, and vision therapists who are trained in the management/treatment of VSS symptoms.

The types of physicians involved in VSS include:

  • 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

It can often be difficult to find medical professionals who understand and specialize in VSS. The VSI has a list of physicians from around the world with knowledge of VSS that can help with diagnosis and treatment options. For more information, please see our Physician & Specialists Directory.

The condition, Visual Snow Syndrome (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.

There are normal, benign circumstances that can cause one to see static, or Visual Snow (VS), temporarily across the visual field, including rubbing one’s eyes and switching from bright to dark or dark to bright lighting conditions. If the VS persists for more than three months and is accompanied by the symptoms in our Diagnostic Criteria, then this may be classified Visual Snow Syndrome (VSS). It is always best to consult a qualified medical professional for an official diagnosis.

Visual Snow Syndrome (VSS) is a neurological condition. VSS refers to the syndrome itself, which entails multiple visual and non-visual symptoms, with one of them being Visual Snow (VS). The main symptom of Visual Snow Syndrome (VSS) is Visual Snow (VS), but the condition also typically entails other visual symptoms like palinopsia, enhanced entoptic phenomena, photophobia, and nyctalopia as well as non-visual symptoms like tinnitus, depersonalization, insomnia, anxiety, depression, paresthesia, and other sensory disturbances.

The term, Visual Snow (VS), is not a condition but a symptom that refers to seeing constant static, or dynamic, continuous tiny dots across the entire visual field. If the symptom, Visual Snow (VS), persists for more than three months and is accompanied by some of the symptoms mentioned above, then this may be categorized as Visual Snow Syndrome (VSS), according to the Diagnostic Criteria. However, it is essential to consult a qualified medical professional for an official diagnosis.

HPPD and Visual Snow Syndrome are two separate medical conditions, with a similar symptom profile. The cause of HPPD is definitively known whereas with VSS, it is not. HPPD occurs after the use of illicit drugs or hallucinogenic substances. It is triggered or exacerbated by substance use. In the case of VSS, someone can experience symptoms of the condition since birth, and VSS can also occur spontaneously without any history of substance use. The origin of VSS is currently unknown.

Visual Snow Syndrome (VSS) is not the result of a psychiatric or psychological illness. That is an offensive, illogical, primitive, and scientifically-disproved notion. Since the establishment of clinical criteria for VSS and evidence from funded studies, it has been proven that VSS is a distinct, neurological condition (with both visual and non-visual symptoms) that can affect vision, hearing, sensory processing, cognition, and quality of life. The debilitating nature of VSS symptoms coupled with the medical community’s historic marginalization, misdiagnosis, and mistreatment of VSS patients can have a profoundly negative and devastating impact on their mental health, as does this dangerous and false notion.

Patients have reported that their VSS symptoms worsen during periods of heightened physical or mental stress. These symptoms typically stabilize or decrease in severity once stress levels have been reduced.

VSS can affect anyone from any age group, country, or ethnicity. According to research, it is most commonly reported in young adults with an average age of 29. People can experience VSS symptoms since birth or after sudden onset.

Currently, there is no known cure for VSS. However, many patients have reported improvements in their symptoms with various treatments, coping strategies, and lifestyle changes (please visit our Managing VSS for more information).

(Effectiveness supported by published clinical 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 address 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.

 

To determine what may work best for you based on your specific symptoms and medical history, it is important to consult your doctor or a qualified health provider.

For more information on treatment options and tips to manage VSS symptoms, please visit the following page:

Managing VSS

Neuro-Optometric Rehabilitation Therapy (NORT) is a noninvasive individualized regime used to address visual deficits resulting from various conditions, including neurological disorders like VSS. NORT aims to retrain the neural processes of the brain related to visual function through the use of various specialized lenses, prisms, filters, and eye exercises. These are customized to each patient based on their specific symptoms and medical history. Research studies demonstrate that patients with VSS who did NORT have experienced symptom improvements in several areas. These include general vision, diplopia (double vision), palinopsia, perception of visual snow (VS) and other related visual disturbances, eye movement deficits, mental health, role difficulties, dependency, debilitation, social functioning, and overall quality of life. VSS patients have also reported improvements in their ability to drive, read, work, and effectively perform daily tasks from close-up or farther away.

For more information about NORT, please visit the following page: Managing VSS: NORT

For related clinical research and literature, please review the following links:

Neuro-Optometric Rehabilitation Therapy (NORT), neuro-vision therapy, and the Tsang/Shidlofsky Protocol or Study are all different names that essentially refer to same type of treatment for Visual Snow Syndrome (VSS) symptoms. 
 
Medical professionals and researchers may prefer to use a specific name for academic, clinical, or diagnostic purposes within their studies and in-practice. Patients who have been treated or are being currently treated typically use the same name for the treatment that their physician does. Most recently, when referring to the aforementioned treatment option for VSS symptoms, we primarily use the name, Neuro-Optometric Rehabilitation Therapy (NORT). Neuro-vision therapy is an alternate name for NORT, preferred by some physicians and patients. The Tsang/Shidlofsky Protocol or Study refers to Dr. Terry Tsang and Dr. Charles Shidlofsky’s NORT protocol that has been modified to address VSS symptoms specifically, which they have published research on in collaboration with VSI.

Mindfulness-Based Cognitive Therapy (MBCT) is an evidence-based noninvasive intervention that combines elements of Mindfulness-Based Stress Reduction (MBSR) and Cognitive Behavioral Therapy (CBT). Research has demonstrated that intense mindfulness training can alter brain pathways. MBCT has recently been modified by Dr. Sui Wong to address both the visual and non-visual symptoms of VSS. Studies employing MRI scans and patient reports have revealed that this modified MBCT program, known as MBCT-vision, can modulate dysfunctional visual networks in the brain and improve VSS symptoms. For more information about MBCT/MBCT-vision, please visit the following page: Managing VSS: MBCT

To access Dr. Wong’s research, MBCT/MBCT-vision study information, and associated FAQs, please review the following links:

Answers to questions regarding MBCT for VSS/MBCT-vision study participation, protocol info, the study inclusion criteria, and more can be found here.

You can also contact Dr. Wong and her research team at: [email protected]

Thus far, Visual Snow Syndrome (VSS) researchers reported that pharmacological interventions were relatively ineffective and pose possible risks (either no clear improvement or symptoms got significantly worse). The Visual Snow Initiative has funded studies investigating conclusive treatments (both pharmacological and noninvasive) that are currently ongoing. The details can be found on our website. Our team will continue to share the results of these studies as they come out. On our Managing VSS page, we list current treatment options that are supported by clinical research and scientific evidence, as well as tips to help with VSS symptoms. In their practices, healthcare professionals may make other recommendations based on their personal experience treating VSS patients and the methods they employ that their patients may have had success with. While some VSS patients have stated that certain medications helped reduce their symptoms, at this time, clinical research does not support the effectiveness or safety of any medication as a treatment for VSS. It is important to consult a qualified medical professional, so that they can create a safe individualized treatment plan that is best-suited for you based on your specific VSS symptoms and medical history.

 

Connecting with others who understand your struggles can be both comforting and informative. You can ask questions and learn from the community.

Social media is an excellent way to connect, share experiences, and receive support from others who understand the condition. VSI is active on several social media platforms, including TikTok, Instagram, Facebook, Twitter, YouTube, and LinkedIn.

There are several online support groups for people with VSS. Research reputable sources and connect with others who share similar experiences.

Sharing your story has the power to help and inspire others with VSS who can relate. Sharing your symptoms and experiences also contributes to the medical community’s understanding of VSS, leading to better outcomes in research and patient care.

While VSS is not considered a common condition, it is also not rare. It is estimated that up to 2-3% of the population may experience some form of VSS symptoms. Additionally, many people born with VSS may be unaware that they have a neurological condition, because they assume that others see the world as they do. So the actual number of cases could be higher worldwide.

Yes, VSS can significantly impact a person’s quality of life. Many people with VSS are sensitive to visual and auditory stimuli, making them more prone to “sensory overload”. For some, their VSS symptoms make daily tasks, such as driving or working, very difficult. Others face challenges when it comes to school, social activities, reading, enjoying nature, and technological devices. VSS can also lead to anxiety, depression, and other emotional difficulties.

But not every case of VSS is the same.  For more information regarding how/why VSS affects each person differently, please visit the page, Understanding VSS. While having VSS can affect a person’s life, the degree of impact varies from person-to-person depending on several factors. Some examples include:

  • How long the person has experienced VSS symptoms 
  • Which specific VSS symptoms they experience 
  • The severity of their symptoms
  • Which triggering factors worsen their VSS symptoms
  • Access to a physician or healthcare provider with knowledge of VSS who can help them
  • Lifestyle
  • Accommodations available to them, especially at work or school
  • Degree of support 
  • Personality
  • Medical history

No, research has shown VSS does not cause blindness nor is it degenerative. However, it can cause significant visual disturbances and impact a person’s quality of life.

If there is no physician listed in your location, you can start by speaking with a neuro-ophthalmologist, neurologist, or ophthalmologist in your area regarding your symptoms. It is important to show them our Diagnostic Criteria and provide as much information on VSS as possible, as they may be unaware of this condition.

It is beneficial to reach out to a family member, friend, or loved one you trust for support. However, explaining VSS to others can sometimes be challenging, as it is a complex and often misunderstood condition. We try our best to explain VSS in an understandable way on both our website and social media, which can be helpful resources.

Consider showing them information and other educational content from VSI, including photos of each VSS symptom and how it manifests differently for each personvideosTikToks, and more. You may also want to share personal stories from Visual Snow Warriors that resonate with you.

Describing visual phenomena with words may be difficult, so showing people photos or videos that accurately depict your symptoms can help them better understand and visualize what you are going through.

It helps to remain considerate and patient throughout the process, especially if someone has never heard of VSS before.

While the exact cause of VSS is unknown, there have been some reports of VSS running in families, suggesting a potential genetic component. However, more research is needed to fully understand the hereditary aspects of VSS.

Yes, research is ongoing, and scientists are working to better understand the causes, mechanisms, and management of Visual Snow Syndrome (VSS).

The Visual Snow Initiative has funded research in several countries, exploring various aspects of VSS essential to better understanding the condition and identifying effective treatments.

Please review the listed areas of exploration and methods below, as well as the article, “4 VSI-Funded Research Studies on Visual Snow Syndrome“, for more details.

Current areas of study include for VSI-funded research:

 Identifying biomarkers

 Understanding the pathophysiology

 Identifying potential treatments, which includes both noninvasive and pharmacological interventions

Methods include:

• Brain imaging using the most powerful state-of-the-art neuroimaging techniques, including a 7-Tesla MRI

 Utilizing Mindfulness-Based Cognitive Therapy modified for VSS symptoms (MBCT-vision) to alter the brain’s visual network and neural pathways to alleviate symptoms

 Utilizing visual tests and blood samples

 Electroencephalography (EEG)

 Neuromodulation

 Neuro-Optometric Rehabilitation Therapy (NORT) to strengthen visual function, alleviate symptoms, and improve quality of life

 Transcranial magnetic stimulation (TMS) / Repetitive transcranial magnetic stimulation (rTMS)

All donations to the Visual Snow Initiative (VSI) go directly to Visual Snow Syndrome (VSS) research.

We share which specific studies VSI is funding/has funded via our News & Research page, newsletter, and social media channels. On our News & Research page, you can find articles that contain information on the specifics of each study, such as what is being explored or tested, the methods employed, the principal investigators/institutions involved, and the funding provided. The specific areas of study and methods being employed for VSI-funded research are also outlined on our Donation page and the Ways to Help page, as well as in the FAQ response above (“Is there active research on Visual Snow Syndrome? / What type of research is being done?”). We also share a photograph of each research team holding a check, which states the amount provided to them by VSI that is necessary to support their studies and the purpose for the donation, VSS research. These photographs are documented on the following pages: Home, Acknowledgements, and News & Research.

Thank you for your interest in donating to the Visual Snow Initiative (VSI)! Donating to VSI is easy. You can visit our website and click on the Donate button to make a secure online, tax-deductible donation. We greatly appreciate your support in advancing research for Visual Snow Syndrome.

For more information on clinical trials involving Visual Snow Syndrome, please visit ClinicalTrials.gov or ICH GCP.

In addition to the databases above, we also share study participation opportunities and information on VSI-funded/supported research via our website (in the News & Research section), newsletter, and social media channels.

You can also reach out to VSS researchers if you would like to share information about your case that may be helpful to them. Many VSS researchers and medical professionals can be found in our global Physicians & Specialists Directory.

With VSI-funded/supported studies, participation opportunities will be announced through VSI, as well as any affiliated institutions or universities. Otherwise, researchers will share them via their own website and/or social media.

Note: Oftentimes, due to (privacy/legal) regulations, participants for studies must be recruited via the institution or university that the researchers are affiliated with. Patients seen by physicians and researchers in-practice or in-person are often considered favorable candidates for studies. However, there are exceptions and researchers may notify the VSS community directly when they are seeking participants for studies. They will share the eligibility requirements and which specific facets of VSS they will be exploring in their research.

Our website, specifically, our News & Research page, can be a valuable resource for new information regarding VSS. You can also sign up for our newsletter and follow VSI on social media to stay informed about the latest developments and explore a variety of VSS-related content. Thank you for the support!

Yes, the Visual Snow Initiative encourages individuals to share their personal story and/or projects about VSS. If you would like to share your personal story or project about VSS, please fill out this form. Your journey can inspire others and raise awareness for VSS.

No, the Visual Snow Initiative does not provide any medical advice or a diagnosis. The information on our website is for informational/educational purposes only and is not a substitute for professional medical advice. It is important to consult with a qualified healthcare professional for an accurate diagnosis, symptom management, and/or treatment of VSS.

You can contact the Visual Snow Initiative by visiting our website and clicking on the Contact tab. You can also reach out to us through our social media channels or email us with your inquiries or feedback. We strive to respond in a timely manner.

In our VSS News Video Series and The Cure of Understanding Video Series, VSI’s team of experts provide answers to a wide range of questions related to Visual Snow Syndrome.

For further inquiries, please visit our Contact page.

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Support Visual Snow Syndrome Research

All donations to the Visual Snow Initiative go directly to Visual Snow Syndrome (VSS) research.

Your tax-deductible contribution ensures that global research will continue and makes a positive difference in the lives of people affected by VSS.