Maartje, at Visual Snow Europe Foundation, works incredibly hard to raise awareness of Visual Snow Syndrome, a neurological disorder that causes visual symptoms. VSS is not well known, but Maartje is hoping to change that. Read below to find out more about the condition.
Visual Snow Syndrome (VSS) is a rather unknown and rare neurological disorder with several visual and non-visual symptoms. It is a syndrome because it involves a collection of jointly occurring symptoms. However, the hallmark symptom of VSS, seeing a kind of continuous snow or television noise throughout the visual field, can also occur alone. If so, it is called Visual Snow (VS) and this is not as rare as VSS.
Patients with VSS have continuous disturbances in the visual field (sometimes even with eyes closed). The most common symptom is seeing a kind of static in the entire visual field which can also be visible with eyes closed.
One may also have other numerous visual symptoms (afterimages, palinopsia, nyctalopia, glare, starbursts, intense sensitivity to light accompanied by pain, pulsating vision, blinking vision, etc.) and non-visual symptoms (tinnitus, vertigo, etc.) which can have a great impact on the patient's quality of life. The most common comorbidity of Visual Snow Syndrome is migraine. According to researchers, Visual Snow Syndrome has a shared pathophysiology with migraine. Ophthalmological examination is usually not abnormal in VSS patients.
In addition to a very wide variety of symptoms, the disorder also has a very wide severity of symptoms. Some patients have the symptoms very mild and barely noticeable and some have it so severe that they are limited in their daily lives. Unfortunately, I, Maartje Van Meijel chairwoman of Visual Snow Europe Foundation, belong to the latter category. For me, VSS feels like I am in a continuous pre-migrainous state and any light source (no matter how mild) effects me much worse and causes intense headaches and often provokes a migraine attack.
Unfortunately, there is a lot of misinformation online about both VS and VSS. For example, stress and anxiety are not the cause and VSS cannot be reduced by mindfulness. Of course, mindfulness can work as a support. There is no cure yet (which is why research and funding is urgently needed). Of course, for the milder variants, there are possibilities to perhaps alleviate the symptoms. Certain color filter glasses (an orange shade is often soothing for neurological symptoms). An optometrist or optician can help you find the right shade. Furthermore, some patients benefit from certain supplements (such as Migravent, a combination of magnesium, riboflavin and coenzyme Q10). Also, according to research, there is a small number of patients who benefit from Lamotrigine (originally an anti-epileptic drug), however, the chances are small.
The exact cause is still unknown. However, research indicates that there is a likely link between hyperactivity in the visual cortex of the brain and the origin of this syndrome. Moreover, it is a neurological (brain-related) disorder, not ophthalmic. Even though the name may suggest otherwise. It involves a brain processing problem that affects a person's vision, but it is independent of the structural integrity of the eyes.
A correct diagnosis of VS or VSS can only be made after a visit to the neurologist and ophthalmologist. According to VSS experts, it is important to rule out other neurological and ophthalmic conditions. My advice is to bring along an article from PubMed on VSS, because chances are the neurologist and ophthalmologist will not know (enough) about VSS.
Abnormalities are hard to find. A simple MRI and EEG are not likely to show an abnormality when it comes to VSS. However, there are scientific indications that a VEP test shows abnormalities. A latency on certain points. Studies have also been published showing that patients with VSS often have hypermetabolism in the brain.
It took me two years to get a correct diagnosis. And was actively looking for it, since these symptoms had a severe impact on my life and career. A doctor of mine advised me at one point not to continue searching. When I finally ended up at a VSS specialist he told me that it was good that I had kept looking. It has had quite an impact on me that there were so many doctors who did not take my symptoms seriously, even though I have an official neurological disorder (rare, however). Due to the lack of knowledge, awareness and research, I had the idea to establish a foundation together with a friend who is also a publisher. Our goal with Visual Snow Europe Foundation is to create more awareness among doctors by actively informing them with the right information. Furthermore we want to offer VSS patients tools to get the right diagnosis from doctors and keep them informed about the most up-to-date information on VSS.
Our website is still in development and due to Covid a little behind on schedule, but we'll be online in May: www.visualsnoweurope.com