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Sierra Domb and Dr Peter Goadsby discuss “Visual Snow and Tinnitus: Phantom Phenomena” – via Tinnitus Talk [PDF]

https://www.tinnitustalk.com/podcast/wp-content/uploads/2020/10/transcript-tinnitus-talk-podcast-ep-14-visual-snow.pdf

Visual Snow and Tinnitus — Phantom Phenomena

The two conditions are eerily similar: visual snow and tinnitus. The patient experience is often one of being misunderstood, and research is in its infancy. What can be done? Two pioneers in this field, patient advocate Sierra Domb and neurologist Dr Peter Goadsby, talk about their incredible experiences in trying to push the envelope for visual snow sufferers.

Discovery of “behavioral signature” in visual snow syndrome could pave way for targeted treatments…

https://www.monash.edu/medicine/news/latest/2020-articles/visual-snow-causes-being-revealed

First evidence of quantifiable behavioral changes in visual snow syndrome

Behavioral signature of VSS

Visual snow causes being revealed
By JULIA VEITCH 10 September 2020

A/Prof Jo Fielding explains the research. See video
Neuroscientists have recently characterised how visual processing is disrupted in the condition known as Visual Snow Syndrome (VSS).

Senior author A/Prof Fielding said, “The ocular motor network and its processing of visual information is complex, involving a number of distinct steps that allow us to make sense of how we see the world.”

She said that the network includes areas of the brain involved in sending visual information from the eyes to the brain. It then puts together this visual information using cognitive processes to make a cohesive image, resulting in an eye movement.

“Our study provides the first evidence of objective and quantifiable behavioural changes in patients with visual snow syndrome.”

The team discovered that patients with VSS moved their eyes faster than healthy patients towards a suddenly appearing stimulus. In addition, when asked instead to stop that action and move their eyes in the opposite direction, VSS patients were more likely to erroneously move their eyes towards the stimuli.

Interestingly, when the difficulty of each of these tasks increased, therefore requiring increased demands on an individual’s higher order visual processing in the brain, the results were no different. The patients with VSS still responded with faster eye movements and the proportion of erroneous eye movements did not change.

A/Prof Fielding said, “These results suggest that in people with VSS the visual processing changes are not a consequence of disruption to decision-making centres of the brain. Rather, patients with VSS appear to be processing visual stimuli faster than healthy people, leading to hyper-accelerated eye movements.

“This analysis has provided an essential first step into defining a behavioural signature of VSS, and identifying the brain areas and processes affected.

“Once we know what’s causing the issue, that information can be used to develop targeted treatment and better management of this debilitating syndrome.”

Reference: Emma J Solly, Meaghan Clough, Allison M McKendrick, Paige Foletta, Owen B White, Joanne Fielding. Ocular motor measures of visual processing changes in visual snow syndrome. Neurology. First published July 16, 2020, DOI: https://doi.org/10.1212/WNL.0000000000010372

Video: https://youtu.be/mylkdmppdAM

Multiple Events May Trigger Visual Snow

https://journals.lww.com/neurotodayonline/blog/neurologytodayconferencereporteramericanheadachesocietyannualmeeting/pages/post.aspx?PostID=36

Multiple Events May Trigger Visual Snow
AT THE MEETINGS
HEADACHE/FACIAL PAIN
By Ed Susman
June 30, 2020
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Visual snow, a mostly spontaneous phenomenon that may be related to migraine, appears to be triggered by inciting events, systemic illness, or lesions along the visual pathway, researchers reported at the virtual annual scientific meeting of the American Headache Society.

The Visual Snow Initiative releases the Visual Imagery Project (VIP): a 21-day online protocol investigating the use of customized visual imagery to reduce visual snow symptoms

Introducing The Visual Imagery Project

Home

The Visual Snow Initiative is excited to announce the release of the Visual Imagery Project (VIP), a 21-day online protocol designed to reduce visual snow symptoms via custom created visual imagery. Those who would like to participate can register now and begin your 21 day protocol. To begin, click here: visualsnowproject.com.

In order to get the full benefit of the Visual Imagery Project, we encourage you to watch both video tutorials.
Only desktops and laptops can be used for the VIP.

Only Google Chrome and Firefox browsers will work with the VIP.

These browsers are available for download free of charge on the VIP’s homepage.

The VIP’s protocol is 21 days and each session is approximately 30 minutes per day.

Each day, before beginning the viewing session, you will need to complete a Progress Evaluation. The information you provide will be saved daily in order to track your progress.

Due to the size of the visual imagery files used in the VIP, a strong WiFi connection is required. If you experience any technical difficulties with the Visual Imagery Project (VIP), please email us at info@visualsnowinitiative.org

New clinical trial to treat patients with debilitating symptoms of visual snow (VS)

Until recently, a search for “visual snow” on ClinicalTrials.gov would return no results (“No Studies Found”).

There were ZERO clinical trials that focused on treating or managing visual snow syndrome or its symptoms.

But that is no longer the case.

Finally… the First Ever Visual Snow Clinical Trial

There is finally a clinical trial that is designed to “to treat patients with debilitating symptoms of visual snow (VS)” and it will begin recruiting patients soon.

It was added to the official clinical trials database on December 4, 2019.

Here is the link:

https://clinicaltrials.gov/ct2/show/NCT04184726

Here is an excerpt:

For this study, the investigators will assess the use of MBCT-vision in patients with visual snow or associated visual symptoms, migrainous visual aura or photophobia.

Is there a catch?

The only issue, which some people might find discouraging, is the type of treatment being offered in this clinical trial…

Sadly, it is NOT a drug or a procedure or what you might consider a potential cure.

Instead, the treatment is a mindfulness-based intervention called Mindfulness-Based Cognitive Therapy (MCBT).

And although it might not be the miracle you’ve been waiting for, consider the bright side…

This is the first ever interventional clinical trial that specifically addresses visual snow syndrome and its associated symptoms. And that is a HUGE milestone and a step in the right direction. (Think of this first ever VS clinical trial as a stepping stone toward more awareness, more research funding, and hopefully more exciting clinical trials.)

More to follow?

Can we expect more visual snow clinical trials to follow? Time will tell. Check the front page regularly for more updates, or…

For the latest visual snow treatment-related news and information – including clinical trial alerts – subscribe to the newsletter. These once-weekly email updates will begin sending soon.

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