In this informative blog article, Visual Snow Syndrome Glasses for Symptom Relief, Jen Ambrose, founder of the Eye on Vision Foundation, shares her personal journey with Visual Snow Syndrome (VSS) and offers valuable advice to others living with the condition. Exploring the challenges of VSS and its impact on daily life, she delves into the power of Visual Snow Syndrome glasses, specifically FL-41 glasses, in managing light sensitivity and reducing visual disturbances. With a message of hope and solidarity, Jen inspires others to embrace their unique journey with VSS and find comfort in knowing they are not alone.

In this heartfelt and personal blog article, Living with Visual Snow Syndrome, I share my journey of living with Visual Snow Syndrome (VSS). I delve into the challenges I faced, including misdiagnosis and the impact on daily life. Through my experiences, I highlight the importance of finding support in online communities and developing coping mechanisms. I emphasize the significance of self-care, building a support network, and seeking empowerment. By sharing my story, I hope to inspire others living with VSS to find hope, strength, and resilience in their own journeys.

Terry Tsang, Charles Shidlofsky, Vanessa Mora

​Barry Tannen, OD, FCOVD, FAAO Jacob Brown, OD Kenneth J. Ciuffreda, OD, PhD, FCOVD, FAAO, FARVO Noah M. Tannen, OD, FCOVD, FAAO

A small excerpt from the article with full PDF attached 

​This is the first paper to demonstrate successful neuro-optometric rehabilitation (NOR) in a clinical population diagnosed with VSS and its wide array of unique visual symptoms. It included the use of: (1) chromatic tints/filters to reduce the perceived intensity and frequency of the VS and many of the other abnormal visual phenomena (e.g., palinopsia)reported in those with VSS; these filters reduce the overall illumination of the visual field, more so in the specific “offensive” spectral band, which typically appears to be in the blue region of the visible spectrum.14 (2) Saccadic tracking to reduce the perceived intensity and frequency of the palinopsia, which has been speculated to occur due to a disinhibition/ hypersensitivity phenomenon related to saccadic suppression;6,7 the training appears to reestablish/reset a more normal level of saccadic suppression, such that its smeared, afterimage perception during a saccade is inhibited once again. In addition, and somewhat serendipitously, this is the first study to detect, diagnose, and treat the multitude of versional oculomotor deficits (i.e., OMD) that appear to be present with a very high frequency of occurrence in our sample (~60%), and likely present more generally.15,16 This is fruitful territory for future investigations (see later Discussion). We have found that common optometric diagnostic tests (DEM, Visagraph, and direct observation of eye movements) combine to allow for the diagnosis of oculomotor dysfunction.

VSS and Stress

Lukas Hose reached out to Eye on Vision Foundation seeking assistance in reaching more members of the Visual Snow community. Please read the following message for more information. 

Dear VSS-Community.

As long as I can remember, I have a colorful veil of flickering dots in my visual field. As I shut my eyes, the flickering itself is accompanied by several other visual symptoms - like a negative image of light sources deforming in front of my inner eye, pulsating and changing colours. At the age of 16 I approached other people about it and - surprise - not everyone perceives the world with a snow-like flickering. This ignited my search for an explanation. Years passed, and as soon as I had the idea to compare the flickering with the snow of an analog TV, I found the term “visual snow”.

With a name for my visual phenomena, I was able to connect with other people affected, and learned that VS is different for everyone. However, a common advice for new members in social media groups said to "avoid stress" and to not concentrate on the symptoms, as this worsens the experience.
This rang a bell. For many, the onset of VSS is a very traumatic experience, making them feel anxious and powerless. I could empathize with them but in my own experience, VSS is nothing to be afraid of and that it is possible to ease the symptoms if you grow with them.

Today, I created a small survey about a possible relation between stress and VSS. Maybe my results can change the outcome for some people. This would mean the world to me. So if you want to help me with my thesis, please participate in my survey. Thank you very much and all the best!

Lukas
https://umfragen.tu-dortmund.de/index.php/921391?newtest=Y&lang=en

Visual snow syndrome is probably not mediated by CGRP: A case series
Stefan Evers, Dagny Holle-Lee, Christoph J Schankin
First Published May 25, 2022
https://doi.org/10.1177/03331024221099220
 
Visual snow syndrome is a phenomenon for which no effective treatment is known. It is highly comorbid with migraine, therefore we performed a retrospective chart review of patients with visual snow syndrome treated with a monoclonal antibody against calcitonin gene related peptide or its receptor.
 
We enrolled 15 patients with visual snow syndrome who received at least once a monoclonal antibody against calcitonin gene related peptide or its receptor. None of the patients reported relief of visual snow syndrome whereas those patients with comorbid migraine reported a very good efficacy of the antibody against the migraine headache but not against the migraine aura.
 
The data suggest that visual snow syndrome is not mediated by calcitonin gene related peptide in a relevant way and that the calcitonin gene related peptide receptor is not involved in the network underlying the visual snow syndrome.

Myrte Strik, Meaghan Clough, Emma J Solly, Rebecca Glarin, Owen B White, Scott C Kolbe, Joanne Fielding 

Brain Communications, Volume 4, Issue 4, 2022, fcac164, https://doi.org/10.1093/braincomms/fcac164

Conclusion

It is clear that visual snow syndrome is a disorder of the central nervous system. However, the underlying pathophysiological mechanisms remains elusive. Here, we reveal no evidence of gross morphometry changes in the visual snow syndrome brain, but widespread changes in the microstructure of the GM, the most notable of these occurring in caudal regions including the occipital cortex. None of these changes are directly associated with the co-occurrence of migraine. While we were unable to determine the specific brain tissue that underlies microstructural changes, they do focus further investigations, contributing significantly to our understanding of visual snow syndrome.

* GM refers to gray matter 

Download and read the full PDF version of the study 

The Psychiatric Symptomatology of Visual Snow Syndrome

Emma J. Solly
Meaghan Clough
Paige Foletta
Owen B. White
Joanne Fielding

Conclusion: Psychiatric symptoms are highly prevalent in patients with VSS and are associated with increased visual symptom severity and reduced quality of life. Importantly, patients with lifelong VSS reported lower levels of distress and milder self-ratings of visual symptoms compared to patients with a later onset, while being equally likely to experience psychiatric symptoms. This suggests that the psychiatric symptoms of VSS are not solely due to distress caused by visual symptoms. While no consistently effective treatments are available for the visual symptomology of VSS, psychiatric symptoms offer an avenue of treatment that is likely to significantly improve patient quality of life and ability to cope with visual symptoms.

Full article: https://www.frontiersin.org/articles/10.3389/fneur.2021.703006/full​