From Misdiagnosis and Mystery… to Legitimacy and Hope

Historically, Visual Snow Syndrome has been one of the most difficult conditions to diagnose. As of 5 years ago, based on the thousands of individuals who had Visual Snow Syndrome around the world and the scientific data collected by VSS researchers, it is estimated that Visual Snow Syndrome was misdiagnosed 85% of the time. And this only included cases that were recorded by physicians and researchers at academic institutions or through the VSI’s database. Thankfully, as of today, that number has declined to roughly 56%.

But a distinction must be made between not having a diagnosis and a misdiagnosis. Of those 85%, half of patients were given a diagnosis of having nothing wrong with them or no diagnosis. The other half were misdiagnosed with another medical condition; the most common were ocular migraine & visual aura without infarction. In actuality, their symptoms persisted and they had Visual Snow Syndrome.

The nature of a syndrome is that it entails a collection of symptoms. And many Visual Snow symptoms can be attributed to other conditions as well. But what eventually made Visual Snow distinct was that patients saw the hallmark symptom, “static”, and they experienced visual disturbances in both eyes 24/7 — whether they were open or closed. That symptom was unique to Visual Snow Syndrome. When physicians hear their patients say they are experiencing this, doctors should immediately think of VSS. Although it shares some symptoms with these conditions, Visual Snow Syndrome should not be confused with HPPD or migraine with aura, which are separate entities with different pathogenesis. It should also be noted that people can be born with Visual Snow or develop it at any point in life. People of all ages can be and are affected.

Before the progression of modern science/technology and VSS advocates intervened, Visual Snow Syndrome patients were almost always not believed. Many were told they were making up their symptoms or “imagining things”. This was not true, of course. Some even likened Visual Snow to a supernatural ability; seeing the “static”, flashing lights, and blinking dots that VSS causes was thought of as a power to see “spirits” or “fairies”. This all created an unnecessary and unfair stigma, confusion, and dismissal surrounding Visual Snow. Furthermore, doctors would assess the eyes of people with VSS only to find that their eye exams were normal. But they were studying the wrong area of the body: Visual Snow Syndrome originates in the brain.

Initially, lack of education and understanding that Visual Snow Syndrome is a neurological disorder (not a structural issue with the eyes) plagued the medical community. VSS patients were typically sent to optometrists or ophthalmologists (eye doctors) when they should have been referred to neurologists or neuro-ophthalmologists (brain or brain-eye doctors). As a result, many patients believed they were going blind, that their symptoms would worsen, or their vision was deteriorating.

Even then, the legitimacy of the condition was still in question. Thankfully, now, that has been rectified. 

Now that the condition’s existence can no longer be questioned, education about VSS and how to properly diagnose patients within the medical community is essential.

However, although significant steps have been made in the right direction, we want to mitigate this further, to the extent that every VSS patient can get the correct diagnosis they deserve. That was and will always remain one of the VSI’s primary goals.

CLICK HERE to view the Visual Snow Diagnostic Criteria (to share with your doctor, etc.), as well a more comprehensive list of visual symptoms.