frequently asked questions

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. VSS patients have attributed to onset of their symptoms to a wide variety of potential causes, including medications, episodes of extreme physical or mental stress, concussion/TBI, migraine, infectious disease, surgery, and more. Although researchers have not identified a singular mechanism responsible for onset in all VSS cases, they have acquired valuable insights into its origins.

The origin of VSS has been linked to hyperactivity in the visual cortex (lingual gyrus) of the brain, abnormalities in the visual processing centers of the brain, and alterations in the neural signals between the eyes and brain. The brains of those with VSS have increased metabolic activity, especially in areas involved in visual perception and processing. Research has also demonstrated cortical hyper-reactivity in visual brain areas, indicating a network disorder rather than a focal pathology. Imaging studies (7-Tesla MRI and FDG-PET/MRI) have also shown microstructural and functional connectivity differences in cortical and thalamic regions. Additionally, possible biomarkers of VSS have been discovered: abnormalities in glutamatergic and serotoninergic neurotransmission.

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

Using a novel 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.

— National Institute for Health and Care Research (NIHR) Maudsley Biomedical Research Centre, King’s College London, and the Visual Snow Initiative

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. In addition to meeting the Diagnostic Criteria, VSS typically entails a diagnosis of exclusion.

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.

Based on the patient’s specific symptoms and medical history, managing VSS may require a multidisciplinary approach. Depending on which (visual and non-visual) symptoms they experience, doctors with expertise in the brain and/or eyes who treat associated symptoms may work independently or together. They can develop a safe and comprehensive plan that best addresses their patient’s needs, taking into account both the neurological and ocular aspects of VSS.

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 Visual Snow Syndrome (VSS). The Visual Snow Initiative 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.

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 can be beneficial to share the Visual Snow Initiative website with them, so they can access the latest information regarding Visual Snow Syndrome and resources, such as Diagnostic Criteria, VSS Brochure, Understanding VSS page, Managing VSS page, News & Research page, photo references of VSS symptoms and more. This can help inform/update more professionals within the medical community about Visual Snow Syndrome, improve patient care, foster better physician-patient communication, and lead to an accurate, timely diagnosis, as well as effective symptom management tailored to the patient’s needs and medical history.

Visual Snow Syndrome (VSS) is a neurological disorder that impacts sensory processing, especially visual perception and the pathway between the brain and eyes; it involves complex interactions between the brain and the visual system. The condition may entail both visual and non-visual symptoms, many of which are associated with other medical conditions as well. Doctors with expertise in the brain and eyes can help patients with many of these symptoms, as they may already have experiencing treating them within their practice. They are also able perform various assessments and diagnostic tests relevant to VSS. For example, a neurologist might conduct exams and imaging studies to evaluate brain function, while an ophthalmologist might perform eye exams and tests to assess visual function and eye health. Comprehensive eye exams rule out eye-related conditions whereas an MRI or EEG may rule out other neurological conditions. Combining these assessments with communication and collaboration between the physicians involved, can lead to an accurate diagnosis and effective plan for managing symptoms, taking into account both the neurological and ocular aspects of VSS.

Given that many primary symptoms of VSS manifest visually, it is crucial for optometrists and ophthalmologists to be well-informed about the condition. While neuro-ophthalmologists and neurologists possess expertise in understanding the structure, function, and abnormalities of the brain’s visual pathways, ophthalmologists and other eye specialists comprehend the intricate anatomy, physiology, and neural connections of the eye. Moreover, certain VSS symptoms overlap with those of other neuro-ophthalmological and eye-related conditions, which many doctors actively manage. In addition to potentially aiding patients in managing their VSS based on individual symptoms and medical histories, eye practitioners knowledgeable about VSS can also appropriately refer patients reporting such symptoms to neurologists or neuro-ophthalmologists for further assessment and potential diagnosis. Collaborative efforts between brain and eye specialists facilitate a thorough evaluation and treatment strategy, encompassing both neurological and ocular aspects of VSS. Furthermore, raising awareness about VSS within the medical community, particularly among disciplines closely related to VSS symptoms like neurology and ophthalmology, can enhance global education, diminish the occurrence of marginalization and misdiagnosis among VSS patients, foster research and data collection for advancing treatments, elevate the quality of care and healthcare outcomes for individuals with VSS, and foster optimal physician-patient communication.

Visual snow/static was first reported in the Transactions of the American Ophthalmological Society in 1944. Frank D. Carroll published descriptions of 6 patients experiencing visual disturbances induced by digitalis, a medication for heart ailments. These included “snowy vision, flashing and flickering lights, flowerlike figures, green and yellow vision, and colored floaters”. All 6 patients underwent ophthalmic (eye) examinations, and findings were negative. Carroll surmised that digitalis impaired the central nervous system, stimulating the cerebrum to cause disturbances.

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 same as migraine aura. VSS is its own distinct condition with visual and non-visual symptoms, one of which is migraine aura.

Research has shown that VSS patients have 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 has also been seen in patients with migraine aura. Although VSS and migraine aura are classified as separate entities, there may be a possible biological or genetic link between them.

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.

VSS can affect anyone from any age group, country, or ethnicity. VSS researchers have recently reported that the most common times of sudden onset are adolescent teenage years and young adulthood. A previous study also suggested that VSS is most commonly reported in young adults with an average age of 29.

While the exact cause of VSS is unknown, a genetic component is possible. There have been some reports of VSS running in families, including cases of VSS in monozygotic twins. However, more research is needed to fully understand the hereditary aspects of VSS. The Visual Snow Initiative team is highly interested in exploring this further. Advancing our understanding of VSS is imperative, including genetic components/hereditary factors.

Many 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. In general, stress can cause flare-ups and worsen symptoms associated with variety of medical conditions; the same is true for VSS. However, due to its neurological origin, VSS is related to the human body’s overall nervous system. The nervous system of those with VSS is typically more sensitive, making them susceptible to sensory stimuli and other stressors. It is possible for anything that impacts the overall nervous system and initiates neurotransmitter alterations within the brain, such as physical or mental stress, to affect VSS. However, everyone’s case of VSS is different based on their specific symptoms, personal triggers, and medical history; therefore, everyone may not have the same experience. The above rationale is likely why therapeutic interventions and lifestyle changes that calm the autonomic nervous system have been reported to have positive effects for many VSS patients, reducing or stabilizing symptoms.

Many women and teenage girls with Visual Snow Syndrome (VSS) report their symptoms worsen during menstruation and/or post-ovulation, during the luteal phase leading up to menstruation. The primary observation has been that visual snow/static can become more intense, but many other visual and non-visual symptoms can as well. Premenstrual Syndrome (PMS) and Premenstrual Dysphoric Disorder (PMDD) can exacerbate VSS. Some patients also report the onset of VSS occurred for them during pregnancy while other women who already had VSS shared that it worsened their preexisting symptoms. However, this is not the case for everyone with VSS, some of whom observed no difference in their symptoms during pregnancy. In all these cases, it was reported that symptoms returned to baseline once PMS, PMDD, pregnancy, and the associated hormonal fluctuations subsided.

PMS, PMDD, and pregnancy can also aggravate various medical conditions due to hormonal fluctuations and changes in the body’s physiology. However, a critical and unique consideration for neurological disorders, such as VSS, is that PMS, PMDD, and pregnancy can exacerbate changes in neurotransmitter activity/imbalances, especially during the menstrual cycle. 

In terms of hormones, they have widespread effects on the brain, including neurotransmitter regulation, neuronal function, and neuroplasticity. Changes in hormone levels can influence the symptoms of neurological disorders that are sensitive to hormonal fluctuations. PMS and PMDD are also associated with alterations in neurotransmitter activity, particularly serotonin. Serotonin plays a key role in mood regulation, and disruptions in serotonin levels during PMS or PMDD can exacerbate non-visual symptoms of VSS such as depression, anxiety, and derealization. Nausea and dizziness, common symptoms of VSS, PMS, PMDD, and pregnancy, may also get worse. Additionally, some women experience heightened sensitivity to pain during PMS or PMDD, which can worsen VSS symptoms like migraines, headaches, sensory disturbances/“brain zaps”, and paresthesia. Moreover, PMS and PMDD are associated with increased inflammation in the body and insomnia, a common symptom of VSS. Lastly, PMS and PMDD can increase stress levels. The correlation between stress levels and the worsening of VSS has been thoroughly documented.

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

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.

No, research has shown VSS does not cause blindness nor is it degenerative. Currently, there is no scientific evidence indicating that VSS gets worse with age. However, it can cause significant visual disturbances and impact a person’s quality of life.

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). The Visual Snow Initiative’s ultimate goal is to find a cure for VSS and help people with the condition along the way. We fund and support studies exploring various aspects of VSS, including the biology, pathophysiology, and underlying network mechanisms. With the knowledge these studies produce, researchers get closer to identifying possible pharmacological interventions, noninvasive treatments, and ultimately, a cure for VSS.

For information on treatment options and tips for managing VSS symptoms, please visit the following page: Managing VSS

On this page, we can only share treatment/management options for VSS that are supported by scientific evidence, clinical research, or VSS patient reports and are not sponsored. If there is a published scientific study regarding VSS with helpful methods that you would like us to share, please feel free to contact our team. Thank you.

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 and list of NORT-VSS practitioners, please visit the following page:

Managing VSS: NORT

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

• The Efficacy of Neuro-Optometric Visual Rehabilitation Therapy in Patients with Visual Snow Syndrome
• Remediation of Visual Snow (VS) and Related Phenomena in a Neuro-Optometric Practice: A Retrospective Analysis
• Neuro-Optometric Treatment for Visual Snow Syndrome: Recent Advances
• Pediatric Visual Snow Syndrome (VSS): A Case Series
• Visual Snow Syndrome: Evolving Neuro-Optometric Considerations in Concussion/Mild Traumatic Brain Injury
• Visual Snow Syndrome (VSS): An Evolving Neuro-Optometric Clinical Perspective
• New Treatment for Visual Snow Syndrome Being Presented at ACBO Conference
• Visual Snow Syndrome / Find An Optometrist
• Visual Snow Syndrome: Visual Consequences, Diagnosis, And Treatment
• Update On NORT Protocol: Progress From 2023 And Plans For 2024

• NORA: Visiting a Neuro-Optometric Rehabilitation Optometrist

Research shows that Mindfulness-Based Cognitive Therapy (MBCT), when properly modified for Visual Snow Syndrome (VSS) patients, can effectively improve symptoms by targeting and modulating dysfunctional visual networks in the brain, impacting neurotransmitters, and inducing neuroplasticity. MBCT promotes the growth of new neural connections and regulates neurotransmitters like serotonin, dopamine, and endorphins. It also reduces stress hormone levels, such as cortisol, associated with cognitive decline. Additionally, MBCT may regulate the limbic system and activate the body’s endogenous opioid system, aiding sensory processing. Dr. Sui Wong has modified MBCT for VSS, termed MBCT-vision, which can help improve the non-visual and visual symptoms, such as visual snow/static, photophobia, trailing phenomenon, and visual aura, by modulating functional connectivity dysregulation of visual networks, according to MRI scans of the brain and patient reports.

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:

• Visual Snow Syndrome Improves With Modulation of Resting-State Functional MRI Connectivity After Mindfulness-Based Cognitive Therapy: An Open-Label Feasibility Study
• MBCT-vision Website
• MBCT-vision: FAQs

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]

Global VSS researchers unanimously maintain that research investigating the pathophysiology of VSS, further understanding of its biomarkers, and underlying mechanisms as a network disorder, are necessary first in order to identify possible pharmacological treatments. These pharmacological interventions must not only be effective at treating symptoms, but also targeted, safe, and approved for the VSS patient population.

Thus far, VSS researchers have unanimously reported that tested pharmacological interventions were relatively ineffective and pose possible risks (either no clear improvement or symptoms got significantly worse). In addition, most caused harmful side effects, posing risks to patients’ overall health and often worsening their VSS symptoms. Moreover, for the small group of patients who have reported slight improvements using medications, these same medications have also been linked to initiating the onset of VSS for others who have reported it caused their VSS. Additionally, the first documented cases of patients developing visual snow/static vision were linked to a medication called digitalis by Frank D. Carroll, who published his report in the Transactions of the American Ophthalmological Society in 1994.

Experimentation with medications when we do not fully understand the condition can be dangerous, particularly in the case of medicines that can affect the entire nervous system. This underscores the need to be careful and understand the VSS to a greater degree before introducing pharmacological interventions.

Conducting studies to explore treatments for VSS requires researchers equipped with funding, access to testable interventions (pharmacological or noninvasive), and expertise in the condition. Not all medical professionals, healthcare entities, or pharmaceutical organizations possess these requisites. Despite the recent scientific validation and increased awareness, education, resources, and studies for VSS, only a handful of global researchers specialize in the condition. We support the multifaceted and comprehensive work of researchers with expertise in VSS. They are considerate of the complexities of VSS, as well how any tested treatment modalities can potentially impact study participant’s health and interact with the underlying mechanisms of VSS.

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 (i.e. the News & Research and Ways to Help pages). 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 patients have stated that certain medications either caused their VSS, made their symptoms worse, or helped reduce them, 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.

Today, within the medical community, there are various types of physicians and specialists that see patients with Visual Snow Syndrome (VSS), including neuro-ophthalmologists, neurologists, ophthalmologists, neuro-optometrists, and vision therapists who are trained in the management/treatment of VSS symptoms. 

An important consideration is that physicians were never taught about VSS in medical school. Until recently, the validity of the condition was met with doubt, speculation, and marginalization. Today, thanks to establishment of clinical criteria, global awareness, education, and research, VSS is now scientficially-recognized as a legitimate, distinct neurological disorder (with both visual and non-visual symptoms). 

There are some physicians who believe there are no viable treatment options for VSS. This is due to various factors. They may simply be unaware that viable treatment options exist. They may also not be aware of the current body of clinical evidence, which supports the existence of effective treatments for VSS symptoms. 

Oftentimes, a doctor from one field of medicine may question another type of doctor’s methods because of their different approach and training. Within medicine, a hierarchy bias can exist in which some doctors only subscribe to ideologies related to their specific field of study. It is also possible that physicians are informed but unable to practice specific methods because it falls outside their area.

A significant factor to consider is the physician’s philosophy and approach to medicine. Within the medical community, physicians may have different perspectives and methods for treating patients. There are various types of treatments, including curative treatments (which cure the condition) and palliative treatments (which relieve symptoms of the condition). Some physicians believe a treatment for a condition, like VSS, only exists when this treatment cures the condition altogether. Many other physicians regard methods that offer symptom relief as a form of treatment. Additionally, some physicians solely support treatments that are pharmacological interventions whereas others support and practice various types of brain-eye therapies to treat patients. Some doctors support conventional medicine whereas others support alternative medicine. It ultimately depends on the physician’s outlook and the services they offer.

Since they have been developed by the Visual Snow Initiative in recent years, other physicians may also be uninformed that diagnostic tools, studies, and treatment options (supported by clinical research) are now available to help them and their VSS patients. It can be beneficial to share the Visual Snow Initiative website with them, so they can access the latest information regarding Visual Snow Syndrome and resources, such as Diagnostic Criteria, VSS Brochure, Understanding VSS page, Managing VSS page, News & Research page, photo references of VSS symptoms and more. This can help inform/update more professionals within the medical community about Visual Snow Syndrome, improve patient care, foster better physician-patient communication, and lead to an accurate, timely diagnosis, as well as effective symptom management tailored to the patient’s needs and medical history.

Today, there are many doctors who know that there are viable treatments for VSS and use them regularly in their respective practices. The Visual Snow Initiative receives daily testimonials, emails/messages, and calls from patients and family members who have had significant, positive results with the variety of treatments supported by clinical research that are detailed on our website.

To date, no one-size-fits-all, universal treatment for VSS has been developed. Treatment options are available that have reduced visual and non-visual symptoms for many VSS patients and restored or significantly improved their quality of life. But every case of VSS is not the same. On the Understanding VSS page of our website, we explain all the reasons for case-by-case differences (with photo references). An individual with VSS may not have success with a particular treatment option, but it has and may help others. What works for one patient may not work for the other patient based on many factors, including their specific symptoms and medical history. Patients with similar cases, symptom profiles, and medical histories are more likely to experience success using the same methods, but it can vary. If one treatment is not helpful for the individual, then there are other different treatments and tips for managing VSS symptoms they can try. These are outlined on our Managing VSS page.

This is why in addition to developing viable treatment options, we fund VSS research as well. By studying VSS, we gain more knowledge about the condition, which allows more varieties of treatments to be developed and treatments that are currently available to be tailored for maximum efficacy. Physicians and researchers may have various approaches and outlooks on VSS. However, different perspectives can often be beneficial because it expands the scope of research and potential treatments for VSS. We fund a variety of VSS research studies that explore different areas to maximize our efforts and chances of finding solutions. Research studies can be found throughout the VSI website.

Several years ago, there were a handful of people in the medical community who knew that Visual Snow Syndrome was a real condition. Everyone else was uniformed and denied its existence. Just as the medical community has grown to accept VSS, it may take some time for the medical community to realize that valid treatment options exist today, which is to be expected.

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 and is currently funding 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, methods, principal investigators, and links below, as well as the article, “4 VSI-Funded Research Studies on Visual Snow Syndrome“, for more details.

Current areas of study for VSI-funded research include:

• Identifying biomarkers and further understanding those which have recently been identified (i.e. abnormalities in serotoninergic and glutamatergic neurotransmission)

• Understanding the pathophysiology and underlying mechanisms of VSS as a network disorder

• Using this data to identify potential safe, targeted, and effective treatments for VSS; this includes both pharmacological and additional noninvasive interventions

Methods include:

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

• ​Positron emission tomography (PET) imaging to test the distribution of different chemical receptors in the brain

• ​Receptor-Enriched Analysis of Functional Connectivity by Targets (REACT) approach

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

• ​Blood samples

• Electroencephalography (EEG)

• Neuromodulation

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

• Visual tests​

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

Principal investigators include:

• Dr. Francesca Puledda in association with Dr. Peter Goadsby, King’s College London

• Dr. Sui Wong, Guy’s and St Thomas’ NHS Foundation

• Dr. Christoph Schankin and Antonia Klein, Bern University Hospital

• Dr. Victoria Pelak, University of Colorado (Funded by VSI in 2019 and delayed due to the pandemic, Dr. Pelak has stated that her study on rTMS for VSS study is still ongoing.)

The experience of Visual Snow Syndrome (VSS), as well as its associated symptoms, varies greatly among individuals, leading to different perceptions of its impact on quality of life. Some attribute the onset of VSS to medications, especially those targeting the neurological system. Consequently, preferences for pharmacological versus noninvasive treatments emerge.

People may favor medications due to past positive experiences or belief in their efficacy. Conversely, others want to avoid medications, especially those who experienced the onset of VSS after taking them, fearing side effects and worsening symptoms. Concerns about dependency or tolerance can also influence this preference. Noninvasive treatments appeal to some because they address physical, emotional, and social aspects of health, with fewer risks and dependencies. Cost and accessibility also play significant roles, with variations in healthcare systems and regulations across countries affecting treatment availability.

Conducting studies to explore treatments for VSS requires researchers equipped with funding, access to testable interventions (pharmacological or noninvasive), and expertise in the condition. Not all medical professionals, healthcare entities, or pharmaceutical organizations possess these requisites. Despite the recent scientific validation and increased awareness, education, resources, and studies for VSS, only a handful of global researchers specialize in the condition. We support the multifaceted and comprehensive work of researchers with expertise in VSS. They are considerate of the complexities of VSS, as well how any tested treatment modalities can potentially impact the health of study participants and interact with the underlying mechanisms of VSS.

The expansion of available, diverse, and viable treatment options for VSS enhances our ability to effectively accommodate the various needs, symptoms, and preferences of the global VSS population. Visual Snow Initiative research efforts are led by experienced, diligent, and passionate VSS researchers who conduct comprehensive studies exploring various aspects of the condition. A broad focus across multiple areas is maintained to optimize global research and ensure accessibility to potential treatments, both pharmacological and noninvasive. Throughout these endeavors, it is important to remain vigilant about the range of symptoms and prioritize the safety and wellbeing of individuals with VSS.

While we work towards a cure, advocating for access to various types of treatment options is crucial so that patients, who have reported VSS is negatively impacting them, can experience relief from symptoms and/or improved quality of life in the interim. Individuals can make informed decisions regarding their health by choosing treatments aligning with their symptoms, comfort, and needs until a definitive cure for VSS is found.

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.

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 person, videos, TikToks, and more. You may also want to share personal stories from Visual Snow Warriors that resonate with you.

Additionally, we created the video, What Is Visual Snow Syndrome?, so people can use it as a helpful resource to easily explain VSS to others.

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.

Making analogies and using familiar points of reference for people (both terms and visualizations) can be beneficial as well. For example, someone may not be familiar with “visual snow”, but you can compare it to any of the following: trying to see through analog TV-static, a swarm of mosquitoes, heavy rain, or a dense snowstorm — all of which people are likely familiar with.

Instead of “phosphenes”, you may want to use the description “constant strobe lights”.

For “palinopsia”, you can compare it to “when someone takes a photo of you while the flash is on, and it is very bright, so you continue to see the flash in your vision even after the photo is taken”.

However, you can use any words, visualizations, and other reference points that are most relevant and comfortable for you.

You may also want to remind people that although the condition is called Visual Snow Syndrome and named after a unique visual symptom of the condition called Visual Snow, there are numerous other visual and non-visual symptoms as well. This way, they have a better understanding of how multifaceted the condition is and how it can impact you in a variety of ways.

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

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.

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.

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!

Absolutely, 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.