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Visual Snow Guide

Home > Guides > Visual Snow Guide

01.

Educate Yourself About Visual Snow Syndrome

Recently Diagnosed with Visual Snow Syndrome (VSS)?

Here is what you should know about the condition, symptoms, treatment options, and available resources.

Note: If you suspect that you or a loved one may have the neurological condition, Visual Snow Syndrome (VSS), but have not yet received a diagnosis, we recommend consulting a qualified healthcare professional—such as a neuro-ophthalmologist or another physician listed in our Global Directory—and sharing the official VSS Diagnostic Criteria with them.

Once diagnosed, it is important to understand the condition and its potential impact on your quality of life, which can vary based on factors such as the severity of your symptoms, the time of onset, and your medical history.

The Visual Snow Initiative (VSI) website offers valuable information and resources to help guide you.

On VSI’s site, you can learn about:

 

Additionally, VSI has developed a Visual Snow Syndrome (VSS) Simulator (desktop only), created by Finnian-Charlton Jones. This tool provides a firsthand experience of what living with VSS is like—featuring constant visual static, light flashes, floaters, palinopsia, and more. It can be a useful resource for individuals with VSS to help explain their symptoms to family members, friends, and medical professionals.

Knowledge is power when it comes to understanding your condition and effectively communicating about VSS with physicians, family, and friends.

Continue reading the VSS Patient Guide below for more information to help guide you.↓

Speak with a healthcare professional who is knowledgeable about VSS to address your questions and guide you through potential treatment options.

Note: Before scheduling an in-person appointment, it’s advisable to contact the medical office to inquire about remote or phone consultation services, as well as whether they treat the specific visual or non-visual symptoms you’re experiencing. It’s important to confirm that the physician is familiar with VSS and regularly treats patients with the condition. This can help you determine if they’re the right fit for your needs.

During your appointment, be sure to share your medical history, symptoms, concerns, and the impact VSS has on your daily life.

Neuro-ophthalmologists and neurologists are typically best equipped to manage VSS. Additionally, certain ophthalmologists, optometrists, neuro-optometrists, and vision therapists trained in VSS symptom management may also be helpful.

Managing VSS may require a multidisciplinary approach depending on the individual’s symptoms and medical history. In some cases, specialists in neurology and ophthalmology may work together or independently to address the condition. These specialists can create a comprehensive plan that considers both the neurological and ocular aspects of VSS.

The types of physicians who may be involved in VSS care include:

  • Neuro-ophthalmologist: A doctor specializing in both neurology and ophthalmology, focused on visual issues linked to the nervous system.

  • Neurologist: A doctor who specializes in diagnosing and treating brain, spinal cord, and nervous system disorders.

  • Ophthalmologist: A medical doctor specializing in eye care, diagnosing and treating eye conditions, and performing surgeries.

  • Neuro-optometrist: A vision care professional trained in both neurology and optometry, specializing in vision issues related to neurological conditions.

  • Optometrist: A vision care professional who specializes in vision exams, corrective lenses, and managing common eye conditions.

If you suspect you may have VSS, you can provide your doctor with our Diagnostic Criteria for reference.

If you’re having difficulty finding a medical professional who specializes in VSS, VSI offers a Directory of Physicians & Specialists from around the world who are knowledgeable in VSS diagnosis and treatment. Our directory includes a variety of specialists to help you find an expert who aligns with your location, preferences, medical history, symptoms, and treatment considerations.

Find A Doctor

02.

Consult a Qualified Medical Professional

03.

Explore Management Options for VSS Symptoms

While no definitive cure for Visual Snow Syndrome (VSS) currently exists, various evidence-based treatments and approaches have been shown to help individuals reduce or manage symptoms and improve quality of life. However, treatment outcomes can vary depending on the individual and the specific nature of their symptoms.

Consult with a healthcare professional to explore potential treatment options, including Neuro-Optometric Rehabilitation Therapy, chromatic filters, Mindfulness-Based Cognitive Therapy (MBCT) or MBCT-vision, neuro-visual therapies, nervous system regulation, and brain network modulation. Detailed information on these interventions, practical tips, and potential medication side effects are available on our Treating Visual Snow page.

Studies into the pathophysiology of VSS, both pharmacological and non-invasive treatment options, and more are funded by VSI. For the latest updates, visit our News & Research page. If you are interested in contributing to research, please visit our Get Involved page.

Given the individual nature of VSS, it is essential to work with a healthcare provider to develop a personalized treatment plan tailored to your specific symptoms and medical history. For more information on the diverse experiences of those with VSS, please refer to our Types of Visual Snow page.

Treatment Options for Visual Snow

The Visual Snow Initiative (VSI) has partnered with the AnCan Foundation to offer a virtual, monthly support group for the Visual Snow Syndrome (VSS) community. This peer-moderated space provides an opportunity for face-to-face conversations and emotional connection. For more details or to join, click here.

Note: This group is not intended for medical advice. For medical concerns, please consult a qualified healthcare provider.

Connecting with others who understand VSS can offer comfort and insight.

Sharing your experiences helps increase awareness, educate others, and expand the understanding of VSS, ultimately advancing research and improving patient care.

If you are speaking to family or friends about VSS, consider sharing this information and additional educational materials from the VSI website, including our Visual Snow Syndrome (VSS) Simulator, photo examples of all the different symptoms of VSS, Types of Visual Snow page, videos (via YouTube & social media), and personal stories from others with VSS.

Patience and understanding are important, especially when introducing VSS to those unfamiliar with the condition.

By sharing knowledge and personal experiences, we can foster deeper connections and enhance understanding of VSS.

Share Your Story

04.

Connect to exchange experiences & provide encouragement

05.

Practice Self-care & Prioritize Your Well-being

Managing Visual Snow Syndrome (VSS) can be challenging for some individuals, as both visual and non-visual symptoms often worsen during periods of physical or mental stress, lack of sleep, sensory overload, and other factors. Triggers can vary from person to person, making it essential to identify and manage individual sensitivities. Addressing nervous system health is key for managing these symptoms and minimizing flare-ups.

Prioritize self-care and adopt strategies that support nervous system regulation, reduce stress, and improve overall well-being. By effectively managing these factors, it may be possible to reduce the intensity and frequency of VSS symptoms.

In addition to science-based treatment approaches, here are some more practical clinical strategies to consider incorporating (under the supervision of a medical professional):

  • Ensure adequate rest by aiming for 7-8 hours of sleep each night, as quality sleep is crucial for brain health and nervous system regulation.

  • Take breaks throughout the day to help calm the nervous system, refocus, and reduce stress.

  • Engage in relaxing or enjoyable activities that promote emotional well-being and mental relaxation.

  • Incorporate regular exercise into your routine, which can support both nervous system regulation and overall health.

  • Focus on a balanced, nutritious diet that supports brain function and overall physical health.

  • Maintain a positive yet realistic outlook, which can help you manage VSS symptoms while continuing to engage in daily activities.

  • Use cognitive strategies to retrain your brain to redirect focus away from visual disturbances.

  • Minimize sensory overload by using tools like tinted lenses, earplugs, or noise-canceling headphones.

  • Set personal boundaries and seek support when needed to manage mental and emotional strain.

These practices can support the nervous system, reduce the likelihood of flare-ups, and improve overall quality of life.

Additional Tips for Managing VSS

Become an advocate for VSS awareness by educating others, dispelling misconceptions, and helping those affected by the condition feel recognized.

Raise awareness through social media or by creating content online. You can also create VSS-related works or projects to spread knowledge.

Offline, inform local physicians and healthcare professionals about the condition. This can help generate more interest, credibility, and research, ultimately leading to better healthcare outcomes for VSS patients.

By increasing awareness, we can foster understanding, drive research, expand resources, and improve the lives of those affected by VSS.

Get Involved

06.

Spread VSS Awareness

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