VSS Patient Guide

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01.

Educate Yourself

If you have recently been diagnosed with Visual Snow Syndrome (VSS), here is what you need to know:

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.

After being diagnosed, take the time to understand what VSS is and how it may impact your quality of life. The information and resources available on the Visual Snow Initiative’s (VSI) website can help.

Learn about the following and view photo examples of:

 

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

Speak to a healthcare professional who is knowledgeable about VSS, so that they can answer your questions and guide you through potential treatment options.

Note: When scheduling your appointment, confirm that the physician sees patients with VSS and understands the condition.

During your appointment, it is important to share your medical history, symptoms, concerns, and any impact VSS is having on your daily life. 

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 vision exams, corrective lenses, and managing common eye 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. 

If you are having difficulty finding a medical professional who understands or specializes in VSS.

VSI has a Directory of Physicians & Specialists from around the world with knowledge of VSS that can help with diagnosis and treatment options.

02.

Consult a Qualified Physician

03.

Explore Management Options

While there is no known cure for VSS, various treatments and approaches have proven to help people with VSS reduce or manage their symptoms and improve their quality of life.

Discuss potential treatment options with your healthcare professional, such as Neuro-Optometric Rehabilitation Therapy, Mindfulness-Based Cognitive Therapy, lifestyle adjustments, and other therapies.

Additional studies into the pathophysiology of VSS and (both pharmacological and non-pharmacological) treatments are being funded by VSI. The latest updates can be found on our News & Research page. If you are interested in getting involved and participating in research, please visit our Get Involved page.

Each person’s experience and journey is unique (to learn more, visit our Understanding VSS page). It is important to find a treatment plan that works best for you based on your specific symptoms and medical history.

Connecting with others who understand your struggles can be both comforting and informative. You can ask questions and learn from the community.

Sharing your story also generates awareness and education for VSS. 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.

Research reputable sources and connect with others who share similar experiences.

Reach out to a family member, friend, or loved one you trust for support. If they do not have VSS, consider sharing the information and other educational content found on the VSI website, including photos of each VSS symptom and how it manifests differently for each person, videos, TikToks, and more. You may also want to share personal stories from Visual Snow Warriors that resonate with you.

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

Together, we can build further support, encouragement, knowledge, and validation for those with VSS.

04.

Connect with a Supportive Community

05.

practice Self-Care & Prioritize your wellbeing

For some, dealing with VSS can be challenging, both physically and emotionally. The associated visual and non-visual symptoms tend to increase during bouts of (physical or mental) stress, so finding a way to reduce stress is essential to effectively managing the condition.

Make self-care a priority. Get sufficient rest, and engage in calming, fun activities. Taking care of yourself can help calm your nervous system, reduce the chance of flare-ups, and improve your overall wellbeing.

Here are some tips: 

  • Make sure to get enough rest. If possible, aim for 7-8 hours of sleep each night. 
  • Take breaks throughout the day to calm your nervous system, recharge, and refocus. 
  • Engage in healthy, fun activities that are relaxing or bring you joy. 
  • Prioritize your physical and mental health through exercise (appropriate for your fitness level) and incorporate nutritious foods into your diet.
  • Consider adopting a positive yet pragmatic perspective that allows you to still enjoy life despite having VSS.
  • Retrain your brain to “tune out” visual disturbances by redirecting your focus.
  • Avoid sensory overload (commonly associated with VSS) using helpful tools, such as tinted lenses, ear plugs, and more.
  • Establish boundaries and seek support when needed.

Become an advocate for VSS awareness. Educate others, help eliminate misconceptions and offer validation to those who are struggling.

Share your experience, make others aware through social media or by creating content online.

You can also spread the word offline within your community. Inform local physicians and healthcare personnel about the condition, which will generate further interest, legitimacy, studies, and better healthcare outcomes for VSS patients.

By increasing awareness, we can foster understanding, support further research, develop more resources, and ultimately improve the lives of those affected by VSS.

06.

Raise Awareness