Visual Snow FAQ

Visual Snow Syndrome (VSS) is a neurological condition that affects vision, hearing, cognition, sensory processing, and overall quality of life. It is characterized by persistent visual disturbances, such as constant “visual snow” or static, flickering dots, and flashing lights visible 24/7 with eyes open and closed. Beyond its hallmark symptom, VSS includes a range of non-visual issues as well. Originating in the brain, VSS is classified as a network brain disorder, meaning it impacts multiple interconnected brain regions, including those responsible for vision. This dysfunction, marked by hyperactivity in some areas and reduced connectivity in others, disrupts sensory information processing and contributes to its wide array of symptoms. The impact of VSS on quality of life varies from mild to debilitating and affects an estimated 2-3% of the global population. The condition can be present from birth or develop at any stage of life.

VSS is a processing condition that originates in the brain, not the eyes. VSS is a network brain disorder, not a structural issue with 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.

Visual Snow Syndrome (VSS) is a network brain disorder, meaning it results from disruptions in the interconnected neural networks of the brain rather than being confined to a single area. These networks are responsible for coordinating sensory, motor, and cognitive processes, and when they become dysregulated, it can lead to the wide range of symptoms observed in VSS.

Network Dysfunction and Complexity

Research shows that VSS involves both hyperactive and downregulated areas in the brain. For example, the visual cortex (particularly the lingual gyrus) and thalamus, which play key roles in processing and filtering sensory input, are often hyperexcitable. At the same time, other brain regions show reduced activity or connectivity. This combination explains why VSS symptoms are so varied and why the condition affects individuals differently. These disruptions in neural networks create persistent visual disturbances, such as static, and can extend to non-visual symptoms, including tinnitus, migraines, and sensory overload.

Potential Triggers and Onset

The exact cause of VSS remains undetermined, though numerous potential triggers for symptom onset have been identified. These include:

• Certain medications, particularly those with serotonin reuptake inhibiting properties, as highlighted by clinical studies

• Extreme physical or mental stress

• Concussions or traumatic brain injuries (TBI)

• Migraines, especially migraine with aura

• Infectious diseases

• Surgical procedures

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

Potential Biological Markers

Research, funded by the Visual Snow Initiative, has led to the identification of potential biomarkers for VSS, focusing on abnormalities in the glutamate and serotonin neurotransmitter systems. These findings emphasize the role of both hyperexcitable and downregulated brain regions in the diverse and complex symptoms of VSS. Advanced imaging techniques have shown distinct patterns of activity in these systems in individuals with VSS compared to healthy controls:

• Glutamate Networks: Research indicates reduced functional connectivity in the anterior cingulate cortex (ACC), a key region for integrating and filtering sensory information, suggesting a disruption in the processing of visual input.

• Serotonin Networks: Reduced connectivity in areas such as the visual cortex, insula, temporal pole, and orbitofrontal cortex may impair the integration of complex sensory information.

Emerging findings indicate that GABAergic mechanisms and 5-HT2A receptor activity may also be implicated in the pathophysiology of VSS.

Advanced Imaging Insights

Studies utilizing 7-Tesla MRI and FDG-PET/MRI have also revealed microstructural and functional connectivity differences in cortical and thalamic regions in individuals with VSS. By combining PET imaging with functional MRI through a technique called Receptor-Enriched Analysis of Functional Connectivity by Targets (REACT), researchers have created detailed maps of brain chemical activity, offering new insights into the biological basis of VSS.

Ongoing Research and Progress

Research into the causes and mechanisms of VSS is advancing rapidly. While significant progress has been made in identifying the underlying brain network disruptions, potential triggers, and biomarkers, the exact origins of VSS remain unknown. Efforts to better understand its pathophysiology continue to grow, providing hope for additional targeted treatments in the future.

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.

Despite its namesake, Visual Snow Syndrome (VSS) is not solely a condition that affects vision. While its hallmark feature is the perception of “visual snow” or static across the visual field, VSS also encompasses a range of non-visual symptoms, including tinnitus, migraines, dizziness, sensory overload, cognitive difficulties, and depersonalization. These diverse symptoms underscore that VSS is a network brain disorder, involving widespread dysfunction across interconnected areas such as the visual cortex, thalamus, and anterior cingulate cortex. This dysregulation includes hyperactivity in some regions and reduced connectivity in others, disrupting how the brain processes and integrates sensory information. This complexity explains why VSS symptoms vary widely among individuals and extend beyond vision to impact sensory and cognitive functions.

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 doctors from around the world with knowledge of VSS that can help with diagnosis and treatment options.

For more information, please access our Global VSS Physicians & Specialists Directory

Note: Prior to scheduling an in-person appointment, it is advisable to contact the medical professional’s office to inquire about their remote or phone consultation services and whether they address the specific visual or non-visual VSS symptoms you are experiencing. Our directory includes various specialists to assist you in finding a local expert that aligns with your location, preferences, medical history, symptoms, and any treatment options you are considering. By reaching out prior to scheduling an in-person visit, you can obtain further information and determine if the specialist is the right fit for you.

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 experience treating them within their practice. They are also able to 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.

Why Reducing Visual Strain Matters in Visual Snow Syndrome

In individuals with Visual Snow Syndrome (VSS), reducing strain on the visual system is essential for lowering cortical hyperexcitability and easing the brain’s overall neurological load. VSS involves increased activity in the visual cortex which can intensify visual disturbances and contribute to sensory overload. Reducing this strain helps the brain process visual input more efficiently and adapt to sensory stimuli more effectively.

Minimizing unnecessary or conflicting visual input decreases perceptual demand and eases sensory strain. This reduction in visual overload supports neuroplastic adaptation, the brain’s natural ability to reorganize and adjust to sensory changes. These adaptive processes may improve visual stability and reduce the frequency or severity of additional visual symptoms.

When the visual system is under less stress, the brain requires less effort to interpret visual information. This can lead to increased comfort, less cognitive fatigue, reduced sensory overload, and a more manageable visual experience for those living with VSS.

Information on managing Visual Snow Syndrome and treatment options focused on reducing stress on the visual system is available on our Treating Visual Snow page.

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. For more information, check out the Visual Snow Timeline.

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; 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.

In order to fit the diagnosis of Visual Snow Syndrome (VSS), you must experience visual snow/static throughout your visual field (with your eyes open and closed) for longer than three months. It may also be accompanied by other symptoms found in the VSS Diagnostic Criteria.

The visual and non-visual symptoms of VSS can be associated with other conditions as well, especially those which are neuro-ophthalmological. However, the symptom, visual snow, or seeing static throughout your visual field 24/7, is the hallmark symptom of the condition Visual Snow Syndrome. In fact, the medical condition, Visual Snow Syndrome, is named after its primary symptom, visual snow.

It is always best to consult a qualified medical professional who can accurately identify, diagnose, and address your symptoms. Showing your doctor the VSS Diagnostic Criteria can be helpful during this process.

Visual Snow Syndrome (VSS) is a distinct neurological condition marked by a range of persistent visual and non-visual symptoms.

The core symptom of VSS is visual snow (VS): the constant perception of tiny, flickering dots or static across the entire visual field, resembling the “snow” or static on an untuned television screen. These dots can be black and white, colored, or transparent, and may appear to move or shimmer.

While visual snow is the hallmark symptom, VSS typically includes other visual disturbances such as palinopsia (afterimages), enhanced entoptic phenomena, photophobia (light sensitivity), and nyctalopia (night vision difficulties). Non-visual symptoms may also occur, including tinnitus, depersonalization, insomnia, anxiety, depression, paresthesia, and other sensory disruptions. In individuals with VSS, visual snow is present 24/7 regardless of lighting conditions or whether the eyes are open or closed; their “static” is constant and does not go away. 

In contrast, visual snow experienced by others without VSS is usually temporary and linked to specific triggers. Visual snow can occur in various contexts: as a symptom of VSS, or temporarily due to conditions such as migraines (especially with aura), use of hallucinogenic or psychoactive drugs, concussion or head trauma, extreme stress, anxiety, or sleep deprivation.

According to the official Diagnostic Criteria, if visual snow persists for more than three months and is accompanied by the specific additional symptoms outlined, it may be classified as Visual Snow Syndrome. However, an official diagnosis should always be made by a qualified medical professional.

Visual Snow Syndrome (VSS) and visual snow (VS) also have different ICD-11 classifications.

Although Visual Snow Syndrome (VSS) and Hallucinogen Persisting Perception Disorder (HPPD) share some overlapping symptoms and may involve similar neurobiological pathways, current scientific evidence indicates that they are distinct disorders with different causes, clinical presentations, diagnostic criteria, and underlying mechanisms. However, this partial overlap can potentially offer meaningful insights for collaborative research, potentially helping to advance the understanding and management of both conditions, as well as other related disorders such as migraine.

VSS is a neurological condition that may arise spontaneously, be present since birth, or develop following various triggers such as migraines, infections, concussions, or extreme physical or psychological stress. Many individuals with VSS report no history of drug use, and some have experienced symptoms since early childhood. In contrast, HPPD is a substance-induced perceptual disorder that only occurs after the use of hallucinogens such as LSD, psilocybin, or MDMA.

One of the most defining differences is the nature of visual snow itself. In VSS, all individuals experience constant, unchanging visual snow (static-like dots that persist across the visual field 24/7). In HPPD, visual snow may occur alongside other symptoms but is not always present or consistent.

Both conditions can include visual symptoms such as palinopsia, which are afterimages or trailing, photophobia or light sensitivity, enhanced entoptic phenomena like floaters or the blue field entoptic effect, and nyctalopia, meaning difficulty seeing at night. They may also involve non-visual symptoms including paresthesia or tingling sensations throughout the body, tinnitus, and depersonalization or derealization. However, HPPD is more likely to involve hallucinatory and distorted perceptual experiences that are not commonly associated with VSS. These include macropsia or micropsia, where objects appear unusually large or small, geometric hallucinations, intensified colors, and flashbacks. While both disorders can involve migraine and tinnitus, more than half of individuals with VSS report migraines and migraine aura, often as a common trigger or comorbidity supported by scientific evidence. These features are less frequently observed in HPPD.

Neurologically, VSS has been associated with hypermetabolism in the lingual gyrus, disruptions in thalamocortical rhythms, and hyperexcitability in the visual cortex. Research on HPPD is more limited but suggests disruptions in sensory gating and altered serotonin signaling, particularly involving 5-HT2A receptors, following hallucinogen use. While both conditions involve cortical hyperexcitability and neurotransmitter dysregulation, particularly in serotonergic pathways, these overlaps do not imply equivalence. Similar neurotransmitter abnormalities are also seen in unrelated conditions like depression, OCD, and anxiety disorders, which remain clinically and mechanistically distinct from both VSS and HPPD. Likewise, other disorders involving disruptions in neurotransmitters such as serotonin, GABA, or glutamate do not produce the same symptom profiles as VSS or HPPD. The same scientific principle applies here: shared mechanisms do not necessarily mean the disorders are the same.

VSS is recognized within the fields of neurology and ophthalmology, supported by official diagnostic criteria and its inclusion in the ICD-11. In contrast, HPPD is classified by the medical community as a substance-related disorder and is listed in the DSM-5.

Their clinical courses also differ. VSS tends to be chronic and lifelong, though some individuals may find symptom relief or improved quality of life through targeted interventions. HPPD symptoms are more likely to fluctuate, and some individuals may experience improvement or resolution over time, particularly with abstinence from hallucinogens.

Although VSS and HPPD share some symptoms and may involve similar neurochemical pathways, they differ in their origins, symptoms, progression, and diagnostic criteria. Still, this partial overlap can offer valuable opportunities for joint scientific study, which could help advance research and treatment options for both conditions, as well as related conditions like migraine.

Visual Snow Syndrome (VSS) is not the same as migraine/migraine aura. VSS is its own distinct condition with visual and non-visual symptoms, one of which is migraine/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/migraine aura. Although VSS and migraine/migraine aura are classified as separate entities, there may be a possible biological or genetic link between them.

Further Historical Background:

“Persistent Positive Visual Phenomena in Migraine” (Liu et al., 1995, Neurology) explored visual symptoms like static or snow across the entire visual field in 10 migraine patients. Despite normal neurological and ophthalmological results, these symptoms persisted for months or even years.

This study was critical in our future understanding Visual Snow Syndrome (VSS). Initially thought to be related solely to migraine aura, the symptoms described did not fully align with traditional migraines. Instead, they matched VSS, which was not recognized at the time. It was one of the first modern studies to explore the overlap and differences between VSS and migraine, ultimately helping solidify VSS as a distinct neurological condition with continuous visual disturbances, both with and without migraines.

Though some patients report the onset of VSS symptoms after a migraine, many VSS cases are independent of migraines. Unlike migraines, where visual symptoms resolve, VSS symptoms are constant, affecting individuals 24/7. Advocacy efforts by the Visual Snow Initiative (VSI) alongside VSS researchers have clarified the relationship between VSS and migraine, helping reduce misdiagnosis. With VSI’s official Diagnostic Criteria for VSS established, helping efforts by continuing to raising awareness of these differences is essential for improving patient outcomes globally and furthering education about VSS within the medical community.

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, with 40% reporting that they have experienced symptoms since childhood or for as long as they could remember. Cases of VSS patients as young as 12 years-old have been investigated in clinical research.

While the exact cause of Visual Snow Syndrome is unknown, a genetic component is possible. There have been some reports of VSS running in families, including cases of VSS in monozygotic twins. In clinical research involving patients diagnosed with VSS, 21% reported a family history of similar visual disturbances. 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 a 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.

Visual Snow Syndrome (VSS) involves abnormal processing of visual information in areas of the brain such as the visual cortex, thalamus, and salience networks. These regions remain active during sleep, but the brain’s sensory regulation changes significantly throughout sleep cycles and especially during the transition from sleep to wakefulness. Upon waking, your brain shifts from a resting state to full alertness, which often leads to increased excitability of neurons in the visual cortex. At the same time, the brain’s normal filtering of “neural noise” is not fully active yet. For individuals with VSS, this neural noise (which is already elevated) can feel more intense, manifesting as stronger visual static.

Additionally, the thalamus, which acts as a sensory filter, may temporarily communicate less efficiently with the cortex during waking transitions. This can allow more unfiltered, irregular signals to reach visual processing areas, further intensifying the perception of static. Your eyes are also adapting from dark to light conditions, even in dim environments, and this shift can be challenging for those with VSS, especially if they experience heightened light sensitivity or difficulty adjusting to contrast.

Changes in the autonomic nervous system during waking cause rapid fluctuations in blood flow to the brain and eyes, which can temporarily impact how visual signals are processed. Finally, immediately after waking, there is often less cognitive distraction, so your brain may become more focused on internal sensory information like visual static, making symptoms feel more noticeable.

In essence, your brain is “booting up” after sleep, and sensory filtering systems are not yet fully engaged. This leads to a temporary increase in visual noise perception. This does not mean your VSS is worsening long-term; rather, it reflects the natural adjustment of the brain’s sensory processing as it transitions from sleep to full wakefulness.

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.

An enhanced, or intensified, version of these visual disturbances can be associated with Visual Snow Syndrome (VSS).

Blue field entoptic phenomenon refers to when individuals can observe their own leukocytes, also known as white blood cells, flowing in their macular retinal capillaries. These white blood cells can be observed throughout the entire visual field. Floaters are dark spots that appear to float in front of one’s eyes and follow their movements.

Blue field entoptic phenomenon and floaters can both occur with or without the presence of VSS. They are commonly-reported symptoms and typically related to medical domains of ophthalmology and optometry, especially vitreous floaters, which are often associated with the body’s natural aging process. Nonetheless, in rarer case, some floaters can be the byproduct of a neurological issue.

However, individuals with VSS are not only more likely to experience visual disturbances like blue field entoptic phenomenon and floaters, but they are typically more intense for them as well. Enhanced entoptic phenomena is one of the visual symptoms of VSS. In addition to seeing visual snow, the hallmark symptom of VSS that is defined as seeing dynamic, continuous tiny dots across the entire visual field (persisting for more than three months), individuals with VSS also commonly experience various types of visual disturbances, or enhanced entoptic phenomena. According to the Diagnostic Criteria for VSS, this includes excessive blue field entoptic phenomenon (uncountable little grey/white/black dots or rings shooting over the visual field of both eyes when looking at homogeneous bright surfaces such as the blue sky), excessive floaters in both eyes, self-lighting of the eye (colored waves or clouds perceived when closing the eyes in the dark), and/or spontaneous photopsia (bright flashes of light).

These visual disturbances can be present without VSS; however, it is when they are enhanced or excessive and accompanied by visual snow/static that they are classified as symptoms of VSS.

While scientific research indicates that Visual Snow Syndrome (VSS) is not degenerative and does not lead to permanent blindness, the condition can severely affect a person’s quality of life due to persistent visual and sensory disturbances. 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.

Not every case of Visual Snow Syndrome (VSS) is the same. VSS exists on a spectrum, ranging from mild to severe, and its impact can vary widely depending on individual factors. 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.

Scientific research has shown that Visual Snow Syndrome (VSS) is not a degenerative condition and is not associated with permanent blindness.

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.

Visual Snow Initiative, along with researchers such as Damiano Perri and Samantha Montoya, has investigated the potential of continual exposure to visual stimuli, including “visual noise,” virtual reality (VR), and other visual snow simulations, to alleviate symptoms of Visual Snow Syndrome. (For more details about our past work in this area and study outcomes, please click here.)

We remain committed to exploring diverse, science-based approaches to Visual Snow Syndrome. Whenever researchers express interest in visual stimuli, virtual reality, or visual snow simulations, we gladly share our resources to support and advance their efforts. This is still an evolving area, and while promising, further research is needed to fully understand its potential.

It is beneficial to reach out to a family member, friend, or loved one you trust for support. However, explaining Visual Snow Syndrome (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 the information about VSS throughout our website. Additional educational content is accessible via VSI’s platforms, including photos of each VSS symptom and how the condition can look/manifest differently for each person, videos, TikToks, and more. You may also want to share personal stories from Visual Snow Warriors that resonate with you.

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

Additionally, VSI has launched a Visual Snow Syndrome (VSS) Simulator (desktop only). Created by Finnian-Charlton Jones, this powerful tool that demonstrates what living with VSS is like—constant static vision, light flashes, floaters, palinopsia, and more—can be used to help individuals with VSS explain their symptoms to friends, family, and medical professionals.

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.

If your child is experiencing symptoms of Visual Snow Syndrome (VSS), VSI 4 Kids provides a range of helpful resources designed for children and youth with VSS. A dedicated branch of the Visual Snow Initiative (VSI), VSI 4 Kids includes:

• A “Draw Your Symptoms” section

• A “Share Your Story” feature

• An interactive VSS Alphabet

• An AI chatbot for children to express their feelings

• Clear explanations and visual guides to assist children and youth in understanding VSS

• Tips on how to talk about VSS with friends, teachers, and family

VSI 4 Kids also provides parents with resources to gain a better understanding of VSS and how it affects their children. Fostering open conversations at home, school, and in social settings can create a supportive atmosphere for your child.

Learn more at: https://vsikids.org/

Disclaimer: For pediatric care and medical guidance regarding Visual Snow Syndrome (VSS), it is always best to consult a qualified medical professional familiar with the condition. A list of physicians who specialize in VSS, including pediatric neuro-ophthalmologists, is available on the Visual Snow Initiative (VSI) website. You can find the list of VSI global physicians here: VSI Doctor Directory

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 various treatment options and tips for managing VSS symptoms, please visit the following page: Treating Visual Snow Syndrome

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.

For comprehensive information regarding medications and Visual Snow Syndrome, visit our Treating Visual Snow: Medications for Visual Snow Syndrome page.

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 (for example, some with reuptake inhibiting properties as demonstrated in clinical research).

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.

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, related studies, published literature, and a list of NORT-VSS practitioners, please visit the following page: Managing VSS: NORT

A full list of vision therapy exercises and methods commonly used in Neuro-Optometric Rehabilitation Therapy (NORT) can be found on our Treating Visual Snow: NORT page.

List of Exercises and Methods Commonly Used in Neuro-Optometric Rehabilitation Therapy (NORT):

Vision Therapy Exercises

• Tracking Exercises: Focus on improving the ability to track moving objects smoothly, helping with eye coordination and reducing symptoms like double vision or difficulty focusing.

• Saccadic Eye Movements: Designed to enhance the speed and accuracy of eye movements when shifting gaze between points, improving reading ability and visual processing speed.

• Convergence Exercises: Strengthen the ability of both eyes to focus on a single point, addressing issues like eye strain and blurred vision.

Prism Lenses

• Prism Glasses: Special lenses designed to help with alignment and eye coordination, reducing symptoms like double vision, dizziness, or discomfort caused by visual processing issues. Prisms help the brain align visual input from both eyes.

Flippers

• Flipper Lenses: Special lenses used in vision therapy exercises to improve the flexibility and strength of the eyes. These exercises help with rapid alternation between near and far vision, training the eyes to adjust to changing focal distances. This can help with symptoms like blur and difficulty focusing, as well as improve convergence, accommodation (focusing ability), and overall visual clarity.

Patching

• Patching: Used to treat double vision by covering one eye or part of the visual field of one eye to eliminate the conflicting image reaching the brain. This helps the brain process a single, clear image, providing temporary relief and reducing visual confusion.

Visual Perception Training

• Visual Integration: Techniques to help the brain integrate visual information with other sensory inputs like spatial awareness and depth perception.

• Pattern Recognition: Exercises to enhance the ability to recognize and process complex visual patterns, reducing confusion and improving clarity in visual tasks.

Eye-Hand Coordination Training

• Coordination Exercises: Activities that combine visual tracking and hand movements to improve coordination and the ability to process visual stimuli in dynamic environments. These may include tasks like ball catching, drawing, or using tools.

Balance and Posture Training

• Visual Integration: Techniques that help integrate visual information with other sensory inputs like spatial awareness and depth perception.

• Pattern Recognition: Exercises to improve recognition and processing of complex visual patterns, reducing confusion and improving clarity in tasks.

Neurofeedback

• Biofeedback Techniques: Training the brain to improve functions, such as reducing overactive brain activity. This can help alleviate symptoms like light sensitivity or brain fog, and may also improve relaxation and focus.

Light Sensitivity Management

• Tinted Lenses: Lenses with specific tints (e.g., FL-41, grey, or rose-colored) to reduce sensitivity to light, a common symptom of Visual Snow Syndrome (VSS).

• Light Desensitization: Gradual exposure to light in controlled environments to help the brain become less sensitive over time.

Visual Field Training

• Peripheral Vision Exercises: Exercises to improve the awareness and use of peripheral vision, particularly for individuals with difficulty detecting objects outside their direct line of sight.

• Scotoma Training: Exercises for individuals with visual field deficits, helping the brain compensate for blind spots and improve overall visual perception.

And More

These methods, when combined, can help individuals with NORT improve visual and cognitive functions, alleviate symptoms of Visual Snow Syndrome, and enhance overall quality of life. The specifics of treatment may vary based on individual needs, symptoms, and medical history.

Comprehensive information about Neuro-Optometric Rehabilitation Therapy (NORT), including research articles, exercises, common methods used (which may vary based on an individual’s symptoms and medical history), and a directory of doctors experienced in NORT and Visual Snow Syndrome (VSS), is available on our website under the “Treating Visual Snow: NORT” page. For additional resources, we also provide informative videos about NORT for VSS on our YouTube channel.

Supported by objective fMRI scans of the brain and patient reports, research has demonstrated that Mindfulness-Based Cognitive Therapy (MBCT) for Visual Snow Syndrome (VSS) can effectively improve symptoms by targeting and modulating dysfunctional visual networks in the brain, impacting neurotransmitters, inducing neuroplasticity, and more. Research indicates that MBCT is capable of improving both non-visual and visual symptoms, such as visual snow/static, afterimages, photophobia, trailing phenomenon, and visual aura, by modulating functional connectivity dysregulation of visual networks. MBCT promotes the growth of new neural connections and regulates neurotransmitters like serotonin, a crucial brain chemical associated with the biological basis of VSS. It can calm the nervous system and reduce the activation of the body’s stress response system, helping to address hyperexcitability and stress hormones that have been implicated in neurodegenerative processes and cognitive decline. MBCT may also help regulate the functioning of the limbic system and have an effect on the activation of the body’s endogenous opioid system, allowing individuals to process sensations without becoming overwhelmed by them.

For more information about MBCT, 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

Advanced neuroimaging studies, including functional MRI (fMRI), provide objective evidence that Mindfulness-Based Cognitive Therapy (MBCT)—initially developed for psychological conditions—shows promise in addressing Visual Snow Syndrome (VSS) by targeting dysfunctions in key brain networks. These include the visual network, which processes sensory input and is disrupted in VSS, leading to symptoms such as visual snow/static, afterimages, photophobia, trailing phenomenon, and visual aura; the attentional network, responsible for focus and filtering stimuli, often dysregulated in VSS; and the salience network, which determines the importance of sensory input and is similarly affected. MBCT focuses on modulating these networks to potentially address visual symptoms such as visual snow/static, afterimages, photophobia, trailing phenomenon, and visual aura, as well as non-visual symptoms like sensory overload and emotional distress.

fMRI studies reveal measurable improvements in functional connectivity within these networks following MBCT, demonstrating its ability to reduce hyperexcitability, modulate maladaptive pathways, and promote neuroplasticity. By addressing this dysregulation, MBCT helps restore functional balance in brain connectivity, alleviating both visual and non-visual symptoms, such as sensory overload and emotional distress. This evidence supports MBCT’s potential as a noninvasive method to reduce the impact of VSS and improve daily life.

fMRI scans conducted before and after MBCT interventions show measurable changes in brain activity, providing objective evidence of its impact. These changes reflect MBCT’s ability to induce neuroplasticity, promoting the growth of new neural connections and rewiring maladaptive pathways involved in sensory processing, emotional regulation, and attention. By modulating functional connectivity and regulating neurotransmitters like serotonin, a key chemical linked to VSS, MBCT can help restore balance to the brain’s visual and extravisual networks.

MBCT also calms the nervous system, reducing hyperexcitability and stress hormones such as cortisol, which are implicated in neurodegenerative processes and cognitive decline. Additionally, MBCT may improve limbic system function and activate the body’s endogenous opioid system, enabling individuals to process overwhelming sensations more effectively.

This combination of neuroplasticity, neurotransmitter regulation, and stress reduction makes MBCT particularly relevant for neurological disorders that affect sensory processing, such as VSS. By encouraging functional changes in the brain, MBCT addresses the maladaptive neural pathways that contribute to these disorders, offering a noninvasive and systematic approach to symptom management.

Dr. Wong’s MBCT protocol, the first adaptation specifically for VSS, has been supported by both systematic studies and neuroimaging, providing a foundation for understanding how MBCT can target the neurological dysfunctions underlying sensory-processing conditions.

Although VSS currently has no cure, MBCT is a scientifically supported approach, substantiated by modern research and neuroimaging, that shows potential as a noninvasive method to assist in managing symptoms and enhancing quality of life for individuals with neurological conditions affecting sensory processing, such as VSS.

VSS patients have diverse preferences, symptoms, and medical histories. We share this information to help you make an informed decision about what may benefit you and determine the best approach for managing your symptoms.

For more information, please visit this page.

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!

The Visual Snow Initiative (VSI) and AnCan Foundation have partnered together to provide face-to-face support and interpersonal connection for the Visual Snow Syndrome (VSS) community by hosting a virtual, monthly support group. This is a peer-moderated space for friendly face-to-face conversations and emotional support. You can access further details and join our VSS virtual support group by clicking here.

(Please note: this group is not for medical advice. For medical questions, please consult a qualified healthcare provider.)

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.

Visual Snow Syndrome Virtual Support Group: What to Expect

The Visual Snow Initiative (VSI) and the AnCan Foundation have partnered together to create the first video chat support group for individuals affected by Visual Snow Syndrome (VSS). This peer-moderated group offers a welcoming safe space where people with VSS and their loved ones can connect face-to-face, share experiences, and support each other in a casual, friendly virtual environment.

The support group is designed to help individuals with VSS feel understood and less isolated by connecting them with others who share similar experiences. The group also aims to foster connections, providing participants with the opportunity to build friendships and share encouragement in navigating the challenges of VSS.

Whether you are a VSS patient or a loved one seeking understanding, advice, or simply someone who can relate, this space offers an opportunity to engage in open dialogue about life with VSS, learn from others on similar journeys, and receive or offer emotional support.

Key Features:

1. Peer Moderation: The group is moderated by individuals with VSS, offering a relatable and compassionate atmosphere. While they are not healthcare professionals, they are here to help foster meaningful connections, provide encouragement, and offer emotional support to group members.

2. Casual, Friendly Conversations:The focus is on informal discussions where participants can share personal experiences, provide mutual support, and offer encouragement to one another.

3. Face-to-Face Connection: Whether through video chat or call-in, participants can engage in real-time conversations with others who truly understand their experiences. This group is a great place to meet people, make friends, and feel less isolated.

4. Open to All: Whether you’re a patient or a loved one, everyone affected by VSS is welcome to join. This is a non-judgmental, supportive space where all are encouraged to participate and build relationships, or listen if they prefer.

The virtual VSS support group meets monthly, providing a consistent opportunity to connect with a global community of individuals on similar journeys. It is designed to be a safe space for learning, relatability, building friendships, and finding solidarity, while also offering encouragement and mutual support in coping with VSS.

Support Group Format

At the start of each session, moderators will ask if anyone would like time to speak. If you wish to share, please let the moderators know, and they will ensure everyone has a chance to participate in an orderly manner. Each participant will be called upon one-by-one, so we kindly ask that you wait for your turn.

If you join after the session has begun, the moderators will ask if you would like to speak and will incorporate you into the speaking order. Please be patient, as we give priority to those who arrived earlier.

We appreciate everyone’s cooperation in maintaining a respectful and supportive environment.

Group Disclaimers & Clarification of Purpose

The Visual Snow Initiative and AnCan’s Virtual Support Group is not a substitute for professional medical advice, diagnosis, or treatment. It is not intended for health-related inquiries or medical guidance, which should be directed to a licensed healthcare provider. Moderated by individuals with Visual Snow Syndrome (VSS), this group is intended as a space for casual discussions, personal sharing, and mutual support. The primary focus is on relatability and shared experiences among peers, rather than offering professional medical solutions.

Members are encouraged to connect, make friends, and share their personal stories. This is a supportive space for engaging in conversations about the daily challenges, coping strategies, and emotional aspects of living with VSS. We believe that offering and receiving support, encouragement, and understanding from others can be vital in coping with this condition. However, please note that these discussions are informal and should not replace individualized medical care.

If you have specific medical questions or need professional guidance, we recommend consulting with a licensed healthcare provider. For additional information about VSS and VSI, feel free to contact us or access the resources on our website, such as the FAQ page and more.

Group Guidelines

We ask all group members to maintain a respectful and considerate environment. Personal feelings, experiences, and opinions may vary due to the diverse nature of VSS, and differences of opinion are welcome. However, these should always be expressed in a manner that is respectful and constructive, without disparaging or causing harm to others.

The following behaviors are strictly prohibited:

1. Bullying, harassment, suggestive, aggressive, or any other inappropriate behavior towards others

2. Use of disparaging, harmful, or threatening language of any kind

3. Any form of disrespect or intolerance towards another member’s personal experience

Note: If you call in without video, please display your first name in the room, so we know who is speaking and can address you properly.

Moderators reserve the right to remove anyone who violates these guidelines. Thank you for helping us maintain a supportive, respectful space for everyone.

Where and Where:

Group sessions are held in AnCan’s Schmier Room on the first Monday of every month at 8:00 PM (EST): https://www.gotomeet.me/ancanschmier.

Kindly note: To foster a safe and welcoming space where participants can share comfortably and openly, our support groups are typically not recorded. For special events, recording may be considered based on the preferences of the guest speaker, attendees, and/or AnCan. We sincerely appreciate your understanding and hope you can join us for a live session.

We hope to see you there!

For more information and to join the group, please visit AnCan’s website.

Statistics and demographic information about Visual Snow Syndrome (VSS) can be found here.

Today, within the medical community, various types of physicians and specialists see patients with Visual Snow Syndrome (VSS), including neuro-ophthalmologists, neurologists, ophthalmologists, neuro-optometrists, and vision therapists trained in managing and treating 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. Thanks to the establishment of clinical criteria, global awareness, education, and research, VSS is now scientifically recognized as a legitimate, distinct neurological disorder with both visual and non-visual symptoms.

Some physicians believe there are no viable treatment options for VSS. This may be because they are unaware that such options exist or because they are not familiar with the current clinical evidence supporting effective treatments for VSS symptoms.

Oftentimes, doctors from one medical specialty may question the methods used by those in another due to differences in training and approach. Within medicine, a hierarchy bias can exist where some doctors primarily adhere to ideologies rooted in their own field of study. Additionally, some physicians may be informed about certain treatments but unable to practice them because they fall outside their specialty.

Doctors often approach medical conditions through the lens of their own specialties, shaped by their training, clinical experience, and the frameworks common in their fields. Some physicians focus primarily on the knowledge and approaches most relevant to their area of expertise. Others adopt a broader, multidisciplinary perspective, actively engaging with the latest research across multiple fields and collaborating with colleagues to develop a more comprehensive understanding of complex conditions.

Because of these differences, some doctors may be more aware of and receptive to newer diagnoses and treatments, such as those for Visual Snow Syndrome, while others may continue to rely on approaches they have been accustomed to for some time. Both perspectives come from a commitment to patient care, though openness to evolving scientific knowledge can vary depending on each physician’s experience and approach to ongoing learning in medicine.

A significant factor to consider is the physician’s philosophy and approach to medicine. Physicians may have differing views on treatments, including curative therapies, which aim to cure a condition, and palliative therapies, which focus on symptom relief. Some physicians believe a treatment only qualifies if it cures the condition entirely, while many others recognize symptom management as a valuable form of treatment. Additionally, some physicians support pharmacological interventions exclusively, whereas others incorporate brain-eye therapies and various other modalities. Some favor conventional medicine, while others may support alternative approaches. Ultimately, treatment choices depend on the physician’s outlook and the services they provide.

In recent years, the Visual Snow Initiative (VSI) has collaborated with global researchers and medical professionals to help develop diagnostic tools, studies, supportive resources, and various treatment approaches for VSS. In the years prior, VSS was poorly understood, with limited recognition and no widely accepted diagnostic tools or treatment options available. Since then, progress has been made through growing research efforts and increased awareness, including the development of resources to help better identify and manage the condition. Since these advancements are relatively new, and not all physicians have the time or opportunity to stay current with emerging developments outside their specialty, some may still be unaware of the latest information and that these resources exist to assist both their clinical practice and their patients.

Sharing the Visual Snow Initiative website can be helpful, as it offers up-to-date information about VSS, including diagnostic criteria, brochures, educational pages, research news, photo references of symptoms, and more. This can improve physician knowledge, patient care, communication, timely diagnosis, and symptom management tailored to each patient’s needs and history.

Today, many doctors are aware of viable treatments for VSS and use them regularly in their practices. The Visual Snow Initiative receives daily testimonials, emails, and calls from patients and family members reporting significant, positive results from the treatments supported by clinical research and detailed on our website.

To date, no universal treatment for VSS exists. Available treatment options have reduced symptoms and improved quality of life for many patients, but every case is unique. On our Understanding VSS page, we explain why treatment responses differ case-by-case, supported by photo references. What works for one individual may not work for another, based on symptoms and medical history. Patients with similar profiles are more likely to benefit from the same approaches, but variability remains. If one treatment is ineffective, other options and symptom management strategies can be explored, as outlined on our Managing VSS page.

This is why, alongside developing treatments, we fund VSS research. Studying VSS increases knowledge of the condition, enabling the development of more treatment options and optimization of existing therapies. Physicians and researchers may have different approaches and perspectives on VSS, and this diversity often broadens the scope of research and potential treatments. We support a variety of research studies exploring multiple areas to maximize our efforts and chances of finding solutions. These studies are featured throughout the VSI website.

Several years ago, only a handful of medical professionals recognized Visual Snow Syndrome as a real condition; many others were uninformed or dismissive. As acceptance has grown, it is expected that it may take time for the broader medical community to fully acknowledge the valid, scientific, and evidence-based treatment options available today.

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 (VSI) has funded and continues to fund research across multiple countries, investigating key aspects of Visual Snow Syndrome (VSS) to improve understanding of the condition and identify safe, effective treatments, with the ultimate goal of discovering a cure.

All donations to the Visual Snow Initiative (VSI) directly fund research focused on Visual Snow Syndrome.

Further information is available on the following pages:

Research with VSI

Donations & Funding

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.

All donations to the Visual Snow Initiative (VSI) directly fund research focused on Visual Snow Syndrome (VSS).

You can learn more about our mission and how donations to VSI directly support Visual Snow Syndrome research on our Donations & Funding page.

Additionally, our Research with VSI page details the areas of focus, research methodologies, and funding amounts allocated to Visual Snow Syndrome studies supported by the Visual Snow Initiative (VSI). This page also includes photographs of each research team receiving a check for the awarded amount, as documentation of the funding provided to in order to support their work.

VSI supports a wide range of scientific research projects aimed at advancing the understanding, diagnosis, and treatment of VSS, with the ultimate goal of discovering a cure. Our Global Research Team collaborates with leading VSS experts to evaluate and select the most promising proposals. Due to the high volume of submissions, we prioritize those with the greatest potential for meaningful impact in consultation with researchers.

Each research project we fund contributes valuable insights, helping doctors, patients, and scientists better understand the condition and explore ways to manage symptoms, ultimately improving quality of life. These findings are also used to guide the development of safe, effective treatments. Our funded research spans both pharmacological and non-invasive approaches, and we continue to work closely with specialists to drive innovation.

We also provide regular updates on our News & Research page, through our newsletter, and across our social media channels. These updates include in-depth articles outlining each study’s objectives, methodology, participating institutions and investigators, and the funding provided.

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.

The Visual Snow Initiative (VSI) funds a diverse range of scientific research aimed at understanding and addressing Visual Snow Syndrome (VSS), with the ultimate goal of discovering a cure.

Our Research with VSI page outlines the specific areas of focus, research methodologies, and funding amounts allocated to each VSI-supported VSS study.These initiatives aim to uncover the underlying causes of VSS, develop effective treatments, and improve the quality of life for those affected, with the ultimate goal of finding a cure.

Global Collaboration through VSI

VSI works with academic institutions and medical organizations worldwide. Institutions like Johns Hopkins University and others use VSI’s platform to recruit participants for studies, even those not directly funded by VSI.

For more information about VSI’s Global Research Team and who we work with, visit our Meet the VSI Team page.

VSI also connects experts from around the globe through regular virtual meetings with researchers and clinicians from:

• The University of California, Los Angeles (UCLA, United States)
• The Massachusetts Institute of Technology (MIT, United States)
• The University of Oxford (United Kingdom)
• Monash University (Australia)
• The University of Bern (Switzerland)
• King’s College London (United Kingdom)
• The University of Colorado Denver (UC Denver, United States)
• And more

VSI’s Global Research Team discussions focus on identifying and funding the most promising research proposals, guided by recommendations from leading experts. With the high volume of proposals received, VSI prioritizes projects with the greatest potential for impactful results.

You can learn more about our mission and how donations to VSI directly support Visual Snow Syndrome research on our Donations & Funding page.

Acknowledgments and Resources

Testimonials and a list of collaborators are available on the Acknowledgments page on our website.

News and Research

For access to VSI’s studies and the latest updates on our efforts to research, raise awareness, educate, and develop solutions for Visual Snow Syndrome, visit our News & Research page.

Contact Information

If you are a doctor, scientific researcher, or represent a medical institution with a VSS research project for consideration, please contact us using the form or email address on our website.

You can also submit your research proposal here.

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 (VSI) 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.

Some individuals may prefer noninvasive options with minimal risk of harmful side effects, which can be particularly important for those with a history of misdiagnosis or mistreatment. Others may opt for pharmacological interventions or explore alternative approaches that work best for them. While the effectiveness of interventions can vary, increased scientific research and advocacy, supported by the Visual Snow Initiative (VSI), continue to make new options available, many of which were previously inaccessible. VSI does not advocate for any specific intervention. Rather, VSI provides comprehensive, evidence-based information to give individuals the opportunity to explore various treatment options and, with the guidance of their healthcare provider, determine what may be beneficial. By improving access to scientific treatment options, VSI aims to empower individuals to make informed decisions regarding their care.

Research for Visual Snow Syndrome (VSS) is time-intensive and costly. (Details regarding why can be found on the FAQ page of our website under the question: “Why does VSS research take so long and cost so much?“) Upon completion and publication of all the studies VSI has funded, we share the information via our website, newsletter, and social media channels. In the interim, we also share research updates on an ongoing basis as they are reported to us by VSS researchers, particularly on our News & Research page.

VSI has funded and is currently funding research in several countries, exploring various aspects of VSS essential to better understanding the condition and researching both pharmacological as well as noninvasive treatments. Listed areas of exploration, methods, principal investigators, and more details can be found throughout our website, including the article, “Active-VSI Funded Visual Snow Syndrome Studies“.

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!

Research for Visual Snow Syndrome (VSS) is both time-intensive and costly. This is the case for many other medical conditions, especially those which are also complex, neurological/neuro-ophthalmological, or have a history of being misunderstood by the medical community. VSS research is essential for advancing our understanding and treatment of VSS, with the ultimate goal of finding a cure.

Scientific research for VSS requires advanced technology. Securing access, approval, and funds for the use of this technology is time consuming and involves significant costs.

Effective VSS research also commonly entails collaboration across multiple disciplines, including neurologists, ophthalmologists, optometrists, radiologists, technicians, and more. Coordinating these efforts, ensuring communication and integration of data across various specialties, adds layers of complexity and cost.

Regulatory and ethics approvals are also an important consideration. They may vary depending on location and any affiliated medical/scientific organizations or academic institutions involved. Given the potential risks involved in studying the human brain and eyes, obtaining regulatory and ethical approvals can sometimes move at a glacial pace. Ensuring compliance with international standards for medical research also adds to the duration and cost of studies.

Moreover, some studies must be longitudinal, or performed over time, in order to thoroughly and safely evaluate VSS, as well as any associated research outcomes. After recruitment and retention of participants for studies, monitoring and follow up is essential for collecting reliable data. Thereafter, researchers must analyze and interpret data. The data derived from neurological/neuro-ophthalmological research is often vast and complex, requiring statistical analyses and expert interpretation. This necessitates investment in skilled medical professionals with an understanding of VSS and its intricacies. Sharing research findings can also involve costs associated with publishing in scientific journals.

As with research for conditions like VSS, which have been historically-marginalized by mainstream medicine, funding can be a challenge, especially for studies that may not have immediate commercial applications. This can influence the scope and pace of research projects. 

The ability to conduct this research is dependent upon various factors. These include (but are not limited to) funding (primarily), lengthy approval processes from the medical, scientific, or academic institutions/organizations involved, and the timeline necessary for investigators to fully conduct their research and then analyze and publish the data.

Research is critical to learning more about VSS, enabling us to further understand the condition and find solutions for everyone affected. 

Through the Visual Snow Initiative (VSI), you can support VSS research. All donations to VSI go directly to VSS research. 

VSI has funded and is currently funding research in several countries, exploring various aspects of VSS essential to better understanding the condition and identifying effective pharmacological and non-invasive treatments. Details regarding the VSS studies funded by VSI can be found on our website, specifically the article titled: “Active VSI-Funded Visual Snow Syndrome Studies” and the article, “4VSI-Funded Research Studies on Visual Snow Syndrome”.

Our team will continue sharing any new information about VSS or study updates when they are reported to us by researchers. 

In the interim, additional information on studies can also be found via our News & Research page.

We do not know the exact date of when there will be a cure for VSS because the rate at which a cure, new treatments, and knowledge about VSS can be discovered is dependent upon research. Moreover, the ability to conduct this research is dependent upon various factors. These include (but are not limited to) funding (primarily), lengthy approval processes from the medical, scientific, or academic institutions/organizations involved, and the timeline necessary for investigators to fully conduct their research and then analyze and publish the data. Research for VSS is both time-intensive and costly.

However, through our ongoing collaboration with global VSS researchers, we are making active, diligent efforts to find a cure, as this is the core mission of our nonprofit organization. Research is critical to learning more about VSS, enabling us to further understand the condition and find solutions for everyone affected. Through the Visual Snow Initiative, you can support Visual Snow Syndrome research so that it remains ongoing. Our team will continue sharing any new information about VSS or study updates when they are reported to us by researchers.

In the interim, there are various available treatment methods that have been shown to help VSS patients with their symptoms through objective fMRI brain scans and scientific research. They can be found on the Managing VSS page of our website. Studies can also be found via the News & Research page.

The timeline of progress for Visual Snow Syndrome (VSS) and the Visual Snow Initiative (VSI) can be found here.

Thank you for your interest in volunteering with the Visual Snow Initiative. We deeply appreciate your support and invite you to join our efforts to improve the lives of those affected by Visual Snow Syndrome. Please contact us with your areas of interest to explore current volunteer opportunities.

Thank you for your interest in volunteering for the Visual Snow Initiative and helping our cause. We greatly appreciate your support, and would love to have you join our team’s efforts to make the world a better place for individuals affected by Visual Snow Syndrome. Please   contact us with your areas of interest to see if there are available volunteer opportunities at this time.

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.

When our team posts study participation opportunities, for everyone interested in signing up, we provide the contact information (email address, etc.) of the researchers involved in the study. This information can be found via VSI’s website, specifically in the News & Research articles about the specific study and our global VSS Physicians Directory, as well as our social media posts and newsletter. If you do not receive a reply from them, researchers have likely reached the maximum # of participants for their study. We share study participation opportunities on an ongoing basis as they are reported to us by Visual Snow Syndrome researchers. You can also access study participation opportunities via the following databases: ClinicalTrials.gov and Ichgcp.net.

If a researcher has not responded to your inquiry about a specific study, there could be several reasons:

• Enrollment may be full – Many studies have a limited number of participants they can accept. Once this limit is reached, researchers may no longer screen or reply to new inquiries.
• Academic, medical, and funding commitments – Researchers often balance multiple responsibilities, including academic teaching, clinical work, securing funding, and managing other research projects, which can delay responses.
• Screening is managed by researchers – Participant screening and communication are handled solely by the research team and often involve recruiting through their affiliated institution or patients seen in practice, as required by certain regulations.

The Visual Snow Initiative shares information about studies related to Visual Snow Syndrome, including those we fund or support. However, we do not oversee participant enrollment, communication, or the management of these studies. For studies we support, we will share any participation opportunities provided by researchers with our community. We appreciate your understanding as researchers navigate strict protocols, academic and medical responsibilities, and funding challenges to advance the study of Visual Snow Syndrome.

(The Visual Snow Initiative does not manage the enrollment or communication processes for studies. All study-related inquiries should be directed to the research team responsible for the specific study.)

The support and collaboration of the medical, scientific, and academic communities are essential to driving global progress in understanding and treating Visual Snow Syndrome (VSS). Your expertise and involvement have the potential to make a profound and lasting difference for those affected by this condition.

For doctors and medical professionals:

If you are a doctor or qualified medical professional currently seeing/treating patients with Visual Snow Syndrome, we encourage you to join our Global VSS Physicians Directory. This directory connects patients with a global network of healthcare professionals who are knowledgeable about VSS. Your participation ensures that VSS patients can find doctors who understand their unique needs, helping them access informed care and navigate their condition more effectively. 

Developed by VSI in collaboration with physicians and researchers, our VSS Diagnostic Criteria, VSS Brochure (available in multiple languages), VSS Patient Guide (for patients), and the additional resources on our website, are helpful tools that can be utilized within healthcare facilities, offices, and practices.

For researchers, professors, and students:

If you are a researcher, professor, or student conducting academic or scientific studies on Visual Snow Syndrome, we welcome your involvement. The Visual Snow Initiative (VSI) can assist your efforts through study recruitment, collaborative support, and amplifying your research to ensure it reaches a wider audience. Together, we can expand the knowledge base and bring greater awareness to this condition.

Thank you for your commitment to making a positive impact by facilitating awareness, education, research, and patient care. Your participation is essential in shaping a future where VSS is better recognized, understood, and properly treated.

If interested, please contact the Visual Snow Initiative or complete the form on our Submit Research Proposals page.

For comprehensive information on ICD Codes for Visual Snow Syndrome and Visual Snow, including official classifications, descriptions, and benefits for patients, doctors, and researchers, please visit the following page: ICD Codes for Visual Snow Syndrome (VSS) and Visual Snow: Detailed Classifications, Descriptions, & More