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VSS Misconceptions

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>  Visual Snow Syndrome (VSS) Misconceptions

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.

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MISCONCEPTION

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.

MISCONCEPTION

The origin of my VSS is a problem with my eyes.

REALITY: VSS originates within the brain; it is a neurological disorder that affects the visual processing centers of the brain. VSS is not an issue originating from the eyes themselves and is unrelated to the structural integrity of the eyes. This is why optometric and ophthalmological (eye) examinations typically yield “normal” results for patients with VSS. Instead, for those with VSS, their brain processes visual information abnormally, which causes them to experience visual disturbances. This occurrence is considered a neuro-ophthalmological (brain-eye) problem.

MISCONCEPTION

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
MISCONCEPTION

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.

MISCONCEPTION

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
MISCONCEPTION

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
MISCONCEPTION

Visual Snow Syndrome (VSS) and Visual Snow (VS) are the same.

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 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 likened to trying to see in the middle of a snowstorm or through a snow globe that has been shaken up; this is how Visual Snow (VS) got its name.

MISCONCEPTION

VSS and HPPD are the same condition.

REALITY: VSS and Hallucinogen Persisting Perception Disorder (HPPD) share similar symptoms but have different causes. The cause of HPPD is definitively known whereas with VSS, it is not. HPPD occurs after the use of illicit drugs or hallucinogenic substances. It is triggered or exacerbated by substance use. In the case of VSS, someone can experience symptoms of the condition since birth, and VSS can also occur spontaneously without any history of substance use. The origin of VSS is currently unknown. Recognizing the differences is crucial for accurate diagnosis and treatment.

MISCONCEPTION

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.

Understanding VSS
MISCONCEPTION

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.

MYTH

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.

MISCONCEPTION

We know nothing about where VSS originates.

REALITY: The origin of VSS has been linked to hyperactivity in the visual cortex (lingual gyrus) of the brain. Research suggests it is related to changes in the visual processing centers of the brain, as well as alterations in the neural signals between the eyes and the brain. A recent study, supported by the Visual Snow Initiative, has revealed the possible biological basis of VSS, providing new insights into the condition's origins. The study revealed that the patterns of activity in two crucial brain chemical systems, glutamate and serotonin, differ in people with VSS compared to those without the condition. This groundbreaking discovery has identified the first-ever possible biomarkers for the condition. Ongoing research into the causes, pathophysiology, and treatment options for VSS is expanding rapidly, fostering a deeper understanding of this condition day by day.

"Abnormal Glutamatergic and Serotonergic Connectivity in Visual Snow Syndrome"
MISCONCEPTION

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
MISCONCEPTION

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
MISCONCEPTION

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
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Visual Snow Syndrome (VSS) Misconceptions

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: VSS originates within the brain; it is a neurological disorder that affects the visual processing centers of the brain. VSS is not an issue originating from the eyes themselves and is unrelated to the structural integrity of the eyes. This is why optometric and ophthalmological (eye) examinations typically yield “normal” results for patients with VSS. Instead, for those with VSS, their brain processes visual information abnormally, which causes them to experience visual disturbances. This occurrence is considered a neuro-ophthalmological (brain-eye) problem.
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: VSS and Hallucinogen Persisting Perception Disorder (HPPD) share similar symptoms but have different causes. The cause of HPPD is definitively known whereas with VSS, it is not. HPPD occurs after the use of illicit drugs or hallucinogenic substances. It is triggered or exacerbated by substance use. In the case of VSS, someone can experience symptoms of the condition since birth, and VSS can also occur spontaneously without any history of substance use. The origin of VSS is currently unknown. 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.
Understanding 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: Current research suggests that VSS is linked to changes in the visual processing centers of the brain, neural signal alterations between the eyes and the brain, and hyperactivity in the visual cortex. Recent research supported by the Visual Snow Initiative have identified potential biological bases, providing valuable insights into the condition's origins. The study revealed that the patterns of activity in two crucial brain chemical systems, glutamate and serotonin, differ in people with VSS compared to those without the condition. This groundbreaking discovery marks the first-ever possible biological basis of VSS. Ongoing research into the causes, pathophysiology, and treatment options for VSS is expanding rapidly, fostering a deeper understanding of this condition day by day.
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
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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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