Visual Snow Misconceptions

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Visual Snow Syndrome Misconceptions

Visual Snow Syndrome, or VSS, is a neurological disorder that can affect vision, sensory processing, hearing, cognition, and quality of life. The main symptom of VSS is seeing visual snow, which can be described as seeing static, flickering dots, and flashing lights 24/7 (with your eyes open and closed). VSS also entails a plethora of other visual and non-visual symptoms.

On this page, we aim to shed light on some of the most common misconceptions/myths regarding this condition and provide up-to-date, accurate information about VSS.

VSS Will Cause Me To Go Blind.

REALITY: Contrary to popular belief, research has shown VSS is not degenerative, nor is it linked to blindness.

The Origin Of My VSS Is A Problem With My Eyes.

REALITY: Visual Snow Syndrome (VSS) is a complex network brain disorder that affects multiple brain regions, including the visual networks, which is why vision is significantly impacted. Unlike conditions originating from the eyes, VSS stems from abnormal brain activity, involving hyperactivity in areas like the visual cortex and thalamus and reduced connectivity in regions such as the anterior cingulate cortex. These disruptions in interconnected brain networks cause the brain to process visual information abnormally, resulting in persistent visual disturbances and a variety of visual and non-visual symptoms. Since VSS is unrelated to the structural integrity of the eyes, optometric and ophthalmological examinations typically yield “normal” results. This condition is best understood as a neuro-ophthalmological disorder, highlighting the critical role of brain-eye interactions in its development.

There Is Nothing Available That Can Help Treat Or Manage VSS.

REALITY: Today, there are several treatment options and tips for effective symptom management available for individuals with VSS. (Please see the “Managing VSS” button below to access a list of methods that may help.) Neuro-ophthalmologists and neurologists are best equipped to address VSS, including some ophthalmologists, optometrists, and neuro-vision therapists who are certified in the management/treatment of VSS symptoms. They should take into account various important factors related to your health, including which specific symptoms of VSS (visual and/or non-visual) you experience, as well as your medical history/if you have any other medical conditions besides VSS. Consultation with healthcare professionals specializing in VSS is crucial for tailored guidance. VSS research is still ongoing, so future studies will also likely reveal new data about VSS that can lead to further non-invasive or pharmacological interventions.

Managing VSS

VSS Is Rare.

REALITY: It was once thought that VSS was a rare condition, but modern research has since dispelled this notion. Researchers now estimate that symptoms affect 2-3% of the world’s population. Increased awareness and studies have also shed light on the prevalence of VSS in the general population. People of all ages and backgrounds worldwide are affected by VSS daily.

VSS Research Is Obsolete.

REALITY: Far from being obsolete, there is currently active global research for VSS being funded by the Visual Snow Initiative (VSI). Ongoing studies in several different countries underscore the global commitment to further understanding and addressing this condition. Researchers are currently studying a wide range of areas, including the pathophysiology of VSS and potential treatment effectiveness (noninvasive and pharmacological). The involvement of esteemed institutions and medical professionals demonstrates the progress in acknowledgement, legitimacy, and interest for VSS in the scientific community. Clinical trials are also ongoing, with patients being notified about study participation via VSI and/or medical databases.

4 VSI-Funded Research Studies On Visual Snow Syndrome

Health Organizations Will Never Acknowledge VSS.

REALITY: Contrary to this belief, the World Health Organization (WHO) is actively reviewing an International Classification of Diseases (ICD) code proposal for VSS, which is being led by Sierra Domb (Founder of the Visual Snow Initiative), Dr. Peter Goadsby, and Dr. Owen White. Other renowned medical institutions, such as Mayo Clinic and Cleveland Clinic, have now recognized the clinical and scientific legitimacy of VSS, employing specialists and departments dedicated to its study and treatment.

Sierra Domb Explains The Importance Of Including Visual Snow Syndrome In The International Classification Of Diseases

Visual Snow Syndrome (VSS) And Visual Snow (VS) Are The Same Thing.

REALITY: Visual Snow Syndrome (VSS) is a neurological condition. VSS refers to the syndrome itself, which entails multiple visual and non-visual symptoms, with one of them being Visual Snow (VS). The main symptom of Visual Snow Syndrome (VSS) is Visual Snow (VS), but the condition also typically entails other visual symptoms like palinopsia, enhanced entoptic phenomena, photophobia, and nyctalopia as well as non-visual symptoms like tinnitus, depersonalization, insomnia, anxiety, depression, paresthesia, and other sensory disturbances. The term, Visual Snow (VS), is not a condition but a symptom that refers to seeing constant static, or dynamic, continuous tiny dots across the entire visual field. If the symptom, Visual Snow (VS), persists for more than three months and is accompanied by some of the symptoms mentioned above, then this may be categorized as Visual Snow Syndrome (VSS), according to the Diagnostic Criteria. However, it is essential to consult a qualified medical professional for an official diagnosis. Note: Visual Snow Syndrome (VSS) is actually named after the most common, main symptom of the condition: Visual Snow (VS), which refers to seeing static, flickering dots, and flashing lights across the entire visual field 24/7 (with your eyes open and closed). Trying to see when experiencing VS is often likened to trying to see in the middle of a snowstorm or through a snow globe that has been shaken up; hence, this is how the term, Visual Snow (VS), got its name.

VSS And HPPD Are The Same Condition.

REALITY: Hallucinogen Persisting Perception Disorder (HPPD) and Visual Snow Syndrome (VSS) are distinct medical conditions that share similar visual symptoms but differ significantly in their non-visual symptoms and causes. VSS encompasses a broader range of non-visual symptoms compared to HPPD. Additionally, the cause of HPPD is well-established, whereas the origin of VSS remains unknown. HPPD is specifically linked to the use of illicit drugs or hallucinogenic substances, with symptoms being triggered or exacerbated by substance use. In contrast, VSS can occur spontaneously, without any history of substance use, and symptoms may even be present from birth. For individuals who develop VSS later in life, its onset has been associated with a diverse range of potential triggers across all age groups, further emphasizing its complexity in contrast to the defined cause of HPPD. Recognizing the differences is crucial for accurate diagnosis and treatment.

Everyone’s VSS Is The Same. / Everyone Feels The Same Way About Having VSS.

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

Different Types of Visual Snow Syndrome

If I See Static Temporarily, Then That Means I Have Visual Snow Syndrome.

REALITY: 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.

VSS Is Caused By A Psychiatric Or Psychological Problem/Disease.

REALITY: Absolutely false. 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.

We Know Nothing About Where VSS Originates.

REALITY: Visual Snow Syndrome (VSS) is a complex network brain disorder caused by disruptions in interconnected neural pathways that coordinate sensory, motor, and cognitive processes. It involves both hyperactive regions, like the visual cortex and thalamus, and downregulated areas, such as the anterior cingulate cortex, leading to a wide range of visual and non-visual symptoms, including static, tinnitus, migraines, and sensory overload. Recent research has identified abnormalities in glutamate and serotonin networks as potential biomarkers, with advanced imaging techniques like 7-Tesla MRI and PET scans revealing disrupted connectivity in critical brain regions. Ongoing studies continue to uncover the mechanisms of VSS, offering hope for improved diagnosis and treatments.

No Doctors Know About VSS.

REALITY: As we continue our work to educate more people in the medical community about VSS, a global directory of VSS-aware physicians is available through the Visual Snow Initiative, providing individuals with access to healthcare professionals knowledgeable about the condition. (Please see the “Physicians Directory” button below to access more information.) Awareness within the international medical community has grown in recent years, as are clinical acceptance and scientific legitimacy for the condition. Researchers have shared that former nonbelievers have come around with active interest in VSS research and treatment. They have also expressed that due to this newly-established awareness, education, and research, there is growth for VSS in many domains of neurology and neurosciences.

VSS Physicians & Specialists Directory

There Is No Way To Know If I Have VSS.

REALITY: Individuals suspecting they may have VSS can refer their doctors to VSI’s Diagnostic Criteria, developed with physicians, to facilitate an accurate diagnosis and appropriate management. VSS may also be diagnosed based on a patient’s symptoms and a thorough clinical evaluation, including a comprehensive medical history and a comprehensive eye exam to rule out eye-related conditions. (Optometric and ophthalmological examinations typically yield “normal” results.) In some cases, an MRI or EEG may be ordered to rule out other neurological conditions. Neuro-ophthalmologists and neurologists are best equipped to address VSS, including some ophthalmologists, optometrists, neuro-optometrists, and vision therapists who are trained in the management/treatment of VSS symptoms.

Diagnostic Criteria

I Am Alone.

REALITY: To individuals living with VSS, you are not alone. There are countless people of all ages and backgrounds around the world who are affected by this condition. The number continues to grow daily. As previously mentioned above, VSS affects an estimated 2-3% of the world’s population. To date, our team has heard from people affected by VSS in over 93 countries. The Visual Snow Initiative (VSI), researchers, informed physicians, loved ones, and fellow VSS Warriors all recognize VSS, as well as the potential challenges you may face having the condition. As researchers focus on finding out further information about VSS and developing solutions, together, we can foster support, resources, awareness, and a sense of community for millions of people facing similar challenges.

Visual Snow Warriors

Visual Snow Syndrome (VSS) is a newly-discovered medical condition.

Reality: VSS has always been a real medical condition; it had simply not been accepted by the medical community or gained awareness until more recent times. Due to increased advocacy, education, and research efforts for VSS, the disorder is now being accepted and recognized as a legitimate condition within the medical and scientific communities. However, although awareness for VSS is growing so more people know about it today than ever before, reports of VSS and “snowy/static vision” existed as early as 1944. It is possible that VSS may have even been prevalent before this time, as 1944 marks the first cases that were actually reported. Many cases of VSS have been and still go unreported, misdiagnosed, or undiagnosed. Visual snow/static vision 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 eye examinations. Findings were negative. Carroll surmised that digitalis impaired the central nervous system, stimulating the cerebrum to cause disturbances. Fast forward many years later, and modern research proved that VSS is indeed a neurological condition, not an eye disease or an issue with the structural integrity of the eyes.

Visual disturbances, like blue field entoptic phenomenon and floaters, are always normal occurrences and unrelated to VSS.

REALITY: Enhanced visual disturbances can be linked to Visual Snow Syndrome (VSS). The blue field entoptic phenomenon allows individuals to see their own white blood cells moving in the retinal capillaries, visible throughout the visual field. Floaters are dark spots that seem to float and move with the eyes. Both blue field entoptic phenomenon and floaters can occur with or without VSS. They are common in ophthalmology and optometry, often associated with aging, though some floaters may stem from neurological issues. According to the Diagnostic Criteria for VSS, individuals with VSS not only experience more intense visual disturbances like blue field entoptic phenomenon and floaters but also other enhanced entoptic phenomena. VSS symptoms include visual snow (tiny dynamic dots across the visual field for over three months), excessive blue field entoptic phenomenon (numerous grey/white/black dots or rings over the visual field when looking at bright surfaces), excessive floaters, self-lighting of the eye (colored waves or clouds when eyes are closed in the dark), and spontaneous photopsia (bright flashes of light). These visual disturbances can occur without VSS, but when they are excessive and accompanied by visual snow, they are classified as symptoms of VSS.

Visual Snow Syndrome (VSS) and migraine/migraine aura are the same.

Visual Snow Syndrome (VSS) is a distinct neurological condition with both visual and non-visual symptoms, including migraine/migraine aura. While symptoms of VSS and migraine/migraine aura may overlap, they are classified as separate conditions and possess many differences. Research shows that VSS patients have reduced serotonin connectivity in specific brain regions, similar to findings in migraine/migraine aura patients, suggesting a possible biological or genetic link. However, VSS is not simply a subtype of migraine. Historically, the 1995 study "Persistent Positive Visual Phenomena in Migraine" (Liu et al., Neurology) identified visual symptoms like static or snow in migraine patients, which persisted beyond migraine episodes, ultimately helping to distinguish VSS as its own condition with unique symptoms in the future. Unlike migraines, where visual disturbances are temporary, VSS symptoms are continuous, affecting individuals 24/7. Despite some overlap, VSS and migraines remain distinct in their presentation and course. Advocacy by the Visual Snow Initiative (VSI) and researchers has helped clarify these differences, reducing misdiagnosis. The establishment of VSI’s official Diagnostic Criteria for VSS continues to raise awareness and improve global patient outcomes.

Visual Snow Syndrome (VSS) Only Affects Vision

REALITY: 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.

Diagnostic Criteria

There is only one trigger for the onset of Visual Snow Syndrome (VSS). / Everyone's VSS was caused by the same thing.

REALITY: The onset of Visual Snow Syndrome (VSS) is not caused by a single, universal trigger but varies widely among individuals, highlighting its complexity. Potential triggers reported by patients include certain medications (particularly those with serotonin reuptake inhibiting properties), extreme physical or mental stress, traumatic brain injuries, migraines (including migraine with aura), infectious diseases, and surgical procedures. Some individuals experience VSS symptoms from birth, while others report a sudden onset without a clear cause. As a network brain disorder, VSS involves disruptions in interconnected neural pathways, but its exact mechanisms remain unclear. Researchers believe there may be an underlying common mechanism linking these diverse triggers. Ongoing research continues to investigate how these triggers may converge on shared neurological pathways, providing insights into the condition’s origins and additional viable treatment options.

Different Types of Visual Snow

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Addressing these misconceptions is crucial for fostering understanding, support, and effective management of Visual Snow Syndrome. As research progresses and awareness grows, the hope is that individuals with VSS will receive the recognition and care they deserve.

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Watch Now: Sierra Domb Shares 2024 VSI Updates on Visual Snow Syndrome VSI Website Walkthrough New VSI Video Series with Dr. Peter Goadsby TEDx: What is Visual Snow? Transforming Anguish Into Action

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