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.
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!
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
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.
Microstructure in patients with visual snow syndrome: an ultra-high field morphological and quantitative MRI study
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
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
Owen B. White
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
I am absolutely thrilled to announce that with a global effort funds have been raised for VSS research to move forward at Monash University! More details will be coming, but I wanted to let all of our supporters and donors know that we did it! Big changes are ahead in the lives of Visual Snow sufferers!
Patient advocate/consumer Patricia and Associate Professor Joanne Fielding talk about respectively the experience of living with Visual Snow Syndrome, and the challenges of research.
Hello. We have enrolled 9 participants. We have so many terrific volunteers and have over 75 active on the waitlist. We plan to recruit 3 more for the study and have identified those three with preliminary screening. Stay tuned as we evaluate the data – likely in the summer of 2023.
The recruitment is clearly terrific as you can see. Thank you to Eye On Vision for allowing us to keep going with the study that originally started in 2019, even though COVID-19 had hit us hard and made it difficult to keep the study up and running.