Helping Yourself and Others
Understand Your VSS
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Author: Visual Snow Initiative
Not every case of Visual Snow Syndrome (VSS) is the same.
People with VSS may experience all or only some of the visual and non-visual symptoms. These symptoms can also range in severity from mild to debilitating. Some experience symptoms since birth, while for others, they occur at a later time in life.
(For a list detailing the specific reasons for potential variations in VSS, see bottom section.)
People with VSS often share things in common with one another. They may share the same or similar set of symptoms, experiences, and feelings toward their condition. However, VSS is not “one size fits all”; having this condition impacts everyone differently. Depending on a myriad of factors, such as medical history, lifestyle, and even personality, each person’s experience is technically unique to them, and their corresponding feelings are valid.
Sharing your experience with VSS is not only essential to raise awareness, but it can also help doctors and researchers better understand the condition. Sharing information about your case with the medical and scientific professionals who are looking into VSS has the potential to impact research.
Oftentimes, due to regulations (privacy & legal protection), participants for studies must be recruited via the institution or university that the researchers are affiliated with. Patients seen by physicians & researchers in-practice or in-person are often considered favorable candidates for studies. However, there are exceptions and researchers may notify the Visual Snow community when they are seeking participants for studies. They will inform you what information they need and what specific facets of VSS they are exploring via clinical trial databases, their website, and/or social media. However, you can also reach out to VSS researchers directly if you would like to share information about your case that may be helpful to them, such as the details listed below. The names of many VSS researchers and physicians can be found on our website.
For more information on clinical trials involving Visual Snow, please visit ClinicalTrials.gov or ICH GCP.
Moreover, to ensure clinical accuracy and effective physician-patient communication, patients may want to speak with their doctor or healthcare provider about the factors listed below.
All of the following are factors that account for case-by-case differences in patients with VSS.
Timeline of Your VSS
Considerations:
- How long have you had VSS?
- Were you born experiencing symptoms of VSS, or did you experience onset later in life?
- If you were NOT born with VSS, did you experience the spontaneous onset of VSS? (Did you get VSS out of nowhere?)
- Or were there any signs or symptoms before the onset of VSS?
- Opinion: Do you have a personal theory about what caused your VSS/how you got it?
Personal Impact of VSS
Considerations:
- Does having VSS impact your life to a minimal, moderate, or severe degree?
- Have you made any lifestyle adjustments to adapt to your VSS? (For example, wearing tinted lenses, avoiding fluorescent lights, etc.)
- Differences in perspective and personality
- Personal theories or beliefs
- If the patient has a support system (family/friends or medical)
- Lifestyle (stress levels, physical activity, etc.)
- Have people you know or your school/job made any accommodations for your VSS?
Your VSS Symptoms
Considerations:
- Which symptoms of VSS do you experience?
- Have you always experienced the same symptoms?
- Have new symptoms appeared over time?
Any VSS Triggers or Improvements
Note: Triggers may vary person-to-person, with some common ones being stress (physical, mental, or emotional duress), bright light (can be sunlight, fluorescent lighting, or flashing/strobing light effects), strenuous physical activity, and sleep.
Considerations:
- Have your VSS symptoms gotten better, worse, or remained the same?
- What, if anything, makes your VSS worse?
- What, if anything, helps your VSS improve?
Different Types of VSS
Note: Visual Snow, or VS, refers to seeing static, flashing lights or flickering dots, 24/7 (whether your eyes are open or closed). Seeing VS/static is the hallmark symptom of Visual Snow Syndrome, VSS.
Considerations:
- Is your VS static achromatic (black, grey, or white), transparent, or chromatic (colorful)?
- If chromatic, which specific colors (blue, red, etc.)?
- Is the density of your VS static mild, moderate, or severe?
- Is the speed of your VS static fixed, slow, moderately fast, or rapid?
- Are your VS static particles tiny/pixelated, medium, or large?
- When are your VS static and/or accompanying symptoms most noticeable? (For example, when you first get up in the morning, trying to sleep at night, against white surfaces, etc.)
Your Medical History
Note: Anything that you believe is relevant should be a topic of discussion with your physician.
Considerations:
- Has a medical professional diagnosed you?
- Do any members of your family also have VSS?
- Do you have any other medical conditions besides VSS?
