Visual Snow Initiative

Growing up, I always thought everyone saw the world the way I did. For as long as I can remember, my vision has been filled with millions of tiny dots, along with lingering afterimages, flashes of light, and shapes that would remain even after I looked away. Whenever I asked people why I saw these things, I was usually told it was because I sat too close to the TV or that it was nothing to worry about. So, I accepted that answer and assumed it was simply normal.

As I got older, though, I started asking more questions. When I was a teenager, I realized that the people around me didn’t experience the world this way at all. That realization was incredibly isolating. I began to wonder if something was seriously wrong with me, and at the time, there was very little information online. It felt like I was the only person in the world seeing life through this constant layer of “static”. Everything changed when I came across the term Visual Snow Syndrome.

For the first time in my life, I found people describing my exact experience—word for word. Every symptom I’d lived with my entire life suddenly had a name. It was one of the most validating moments I’ve ever experienced because I finally understood that I wasn’t imagining it, and more importantly, I wasn’t alone. Not long after, I visited an eye doctor who, thankfully, was familiar with Visual Snow Syndrome. Even though research was still in its early stages, hearing a medical professional acknowledge what I had been experiencing gave me so much hope. Knowing that researchers were beginning to understand the condition made me believe that one day we’ll have better treatments—and maybe even a cure.

Today, Visual Snow is still a part of my life, but it doesn’t define me. I’ve learned to adapt, and it affects me far less than it once did. I continue to hope that ongoing research will lead to better ways to reduce symptoms and, someday, eliminate them altogether.

If you’re reading this and you have Visual Snow Syndrome, I want you to know something I wish someone had told me years ago: you are not alone. There are thousands of people who understand exactly what you’re experiencing.

🧠Hormones do much more than regulate reproductive health. Estrogen and progesterone also interact with brain systems involved in sensory processing, neurotransmission, pain sensitivity, sleep, stress, and neural excitability.

For some people living with Visual Snow Syndrome (VSS), symptoms may feel different during periods of hormonal change, including the menstrual cycle, PMS, PMDD, pregnancy, and menopause.

Some patients report changes in symptoms such as:
❄️ Visual snow
Palinopsia / afterimages
💡 Light sensitivity
⚡ Migraine

However, experiences vary significantly, and many people may notice no hormone-related changes at all.

🔬 The relationship between hormones and VSS remains an important area for future research. Understanding these potential connections may help researchers learn more about why symptoms
fluctuate and how care can become more individualized.

🔗 Read the full article through the following link:
https://www.visualsnowinitiative.org/research/hormonal-changes-and-their-potential-neurological-impact-on-visual-snow-syndrome-exploring-cycles-pms-pmdd-and-pregnancy/

With publication funding provided by the Visual Snow Initiative, a new study from Japan published in Cephalalgia is helping expand our understanding of Visual Snow Syndrome (VSS) and its relationship with migraine. 🇯🇵❄️

The study compared 148 people with VSS and 157 control participants and found that migraine was much more common among those with VSS. Migraine was associated with palinopsia, while migraine aura was associated with both palinopsia and enhanced entoptic phenomena.

Researchers also observed greater anisometropia among people with VSS. Anisometropia refers to a difference in prescription strength between the two eyes. This finding is still considered preliminary and requires further research to understand whether it has any significance in VSS.

Overall, the findings add to the growing evidence that VSS and migraine frequently overlap, while also introducing new questions for future research.

https://www.visualsnowinitiative.org/research/new-research-in-japan-explores-visual-snow-syndrome-and-its-connection-with-migraine/

🪪❄️ The Visual Snow Initiative is excited to share the first Visual Snow Syndrome Medical ID and Travel Card, a resource created specifically to support people living with Visual Snow Syndrome (VSS).

Living with an invisible condition can sometimes make it difficult to explain what you are experiencing, especially when others may not be familiar with VSS. This card was created to help make those conversations easier and give individuals a simple way to communicate important information about the condition.

The Medical ID card can be kept with you and shown to:

👩‍⚕️ Medical professionals
🚑 Emergency personnel
✈️ Airline, airport, and transportation staff
👨‍👩‍👧 Family members and friends
🤝 Others who may not be familiar with Visual Snow Syndrome

Whether you are traveling, seeking medical care, experiencing symptoms in a public setting, or simply need an easier way to communicate that you have VSS, the card can help support greater understanding and self-advocacy.

The idea for this VSS-specific resource came from VSI Founder Emeritus Sierra Domb, inspired by her own experiences navigating life with Visual Snow Syndrome and other invisible illnesses.

💻 Download the card for FREE through the Visual Snow Initiative website.

🪪 A physical Medical ID card is also available to purchase.

🔗 Visit the link below to get your VSS card.

https://www.visualsnowinitiative.org/visual-snow-id-card/

When I would lie in bed at night as a child, I used to see linear brick patterns spawn from the static in my vision, often red or green in colour.

I thought I was magic.

I could summon these patterns by opening my closed palm. The longer I kept my hand closed under the covers, the more extravagant the pattern would be when I opened it. If I was super patient, I would see my favourite pattern: small electric rose bushes. It sounds bizarre in retrospect. I think my vivid childhood imagination wanted to literally connect the dots.

I’m now 31 (female and neurodivergent) and I’ve had visual snow for as long as I can remember. Because it had always been there, I assumed it was simply “the norm”. It wasn’t until I mentioned the “static in the air” to a friend in my 20s that I realised other people weren’t seeing the same thing.
That’s still exactly how I would describe it: colourful, ever-present TV static, or tiny electric dots in the air, accompanied by consistent flashes and drags of larger light.

When I explain it to people, they often ask how I can see well enough to do my work. I’m a graphic designer and artist, so it makes sense that they assume my vision must be impaired, and I suppose in a way it is. But it’s the only vision I’ve ever had, and I perform well on standard optometry tests.
I usually explain that the static is always moving, and moving fast. I can still technically see through and around it.

Now that I understand visual snow as something distinct, I’m much more curious about what sits behind it. I’d love to learn more about how visual snow relates to neurodivergence and other sensory processing differences. I often wonder whether the way I experience visual input is connected to how I process sound, light, movement and other sensory information more broadly, as well as how VSS can contribute to feelings of social anxiety and disassociation, creating a distance or film between mind and reality.

With that in mind, and all negatives aside, I think it’s kind of cool to have experienced the world in such a unique and colourful way.

https://www.visualsnowinitiative.org/warriors-of-the-week/eryn-levey/

📣 Attention community in Mexico 🇲🇽🌎📍

We’ve added new physician listings to the VSI Physician & Specialist Directory in your country!
Awareness, education, and care for VSS continue to expand globally. We are always accepting submissions of doctors and clinics worldwide who are knowledgeable about VSS and equipped to provide proper diagnosis and care.

💡 If you’ve been diagnosed by a physician in your area who understands VSS but is not yet listed in our directory, please email us at [email protected].

🔎 Explore the directory via the following link:
https://www.visualsnowinitiative.org/doctors/

Limited awareness of VSS within the medical community has led to misdiagnosis, dismissal, and delays in care. If you experience this, here are steps you can take using resources from the Visual Snow Initiative (VSI). 💙

1️⃣ Look for a provider familiar with VSS. Visit VSI’s global physician directory to find knowledgeable providers.

2️⃣ Bring the official VSS diagnostic criteria to your appointment.

3️⃣ Share credible information about VSS. If your doctor questions whether the condition is legitimate, point to peer-reviewed research and its formal recognition in the World Health Organization’s ICD-11 classification system. You can also share VSI’s academic articles and medical videos featuring clinicians discussing VSS.

4️⃣ Use visual tools to explain your symptoms. Show your doctor the VSS simulator on VSI’s website, or photos and videos that resemble your experience.

5️⃣ Discuss an individualized care plan. Review the management approaches outlined on VSI’s website with your provider. These have helped some patients, but care should take into account your specific symptoms, their severity, your medical history, and your overall health.

🔗 Access these resources at visualsnowinitiative.org.