Some good news:
A new clinical trial for visual snow syndrome was added to the clinicaltrials.gov database earlier today.
This is the second ever VS study added to the system. But unlike the first study we covered, this one has nothing to do with mindfulness and cognitive behavioral therapy.
Instead it focuses on giving patients a way to reduce the actual visual snow intensity and prevalence.
The study is titled, “Neurofeedback for Patients With Visual Snow” and it is expected to start in just over a month from now, on July 1, 2021. Currently not yet recruiting, but that status should change soon.
A total of 70 participants will be enrolled.
The study is taking place at the University of Zurich. It is funded by the USZ Foundation.
In a double-blind, randomized and placebo-controlled longitudinal experiment, we will use real-time functional magnetic resonance imaging (rtfMRI) neurofeedback to teach patients to downregulate activity in different regions of the visual cortex
Here is a brief summary, from the study description:
Visual snow (VS) is a distressing, life-impacting condition with unrelenting and persistent disturbing visual phenomena. Disease onset is usually around age 20 and is characterized by continuous perception of innumerable flickering dots (like a ‘broken television’). The disease is often accompanied by comorbidities such as migraine, tinnitus, depression and anxiety.
Neuronally, VS patients show cerebral hypermetabolism, resulting in altered neuronal excitability, as well as increased grey matter volume in parts of the visual cortex.
For this pilot study, we aim to recruit VS patients. In a double-blind, randomized and placebo-controlled longitudinal experiment, we will use real-time functional magnetic resonance imaging (rtfMRI) neurofeedback to teach patients to downregulate activity in different regions of the visual cortex.
We hypothesize that neurofeedback will allow patients to learn to downregulate their abnormal visual cortex activity. Moreover, we predict a stronger downregulation of activity from the lingual gyrus will correlate with a more pronounced decrease in VS symptoms.
Here is a link to the official study record:
That’s all for now.
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In this video, Dr. Charles Shidlofsky answers the question: Is there anything you would like to share with the VSS community?
Breakthrough In Diagnosing VSS
Nov 25, 2020 | Research
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.
Visual Snow Initiative Funding of the MBCT-Vision Study at St. Thomas’ London
University student creates nonprofit to support research on Visual Snow Syndrome
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
New Oct. 2020 Study Announced, Two Physicians Working On Enhanced Protocol to Treat VSS + Potential Conference
New October 2020 Visual Snow Study Announced: Two Physicians Working On Enhanced Protocol to Treat VSS + Potential Conference…
UPDATE: Visual Snow Initiative releases more video interviews with world’s leading visual snow experts…
Multiple Events May Trigger Visual Snow
AT THE MEETINGS
By Ed Susman
June 30, 2020
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.
Introducing The Visual Imagery Project
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 firstname.lastname@example.org
Visual snow requires a thorough ophthalmologic exam to exclude other ocular diseases.
Current Observations on Visual Snow Syndrome by Dr. Owen White
Visual Snow is Real
— Migraine, tinnitus are frequent comorbidities
by Judy George, Senior Staff Writer, MedPage Today January 24, 2020
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:
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.
For Those Waiting for the Visual Snow Initiatives Project (VIP) Launch
Visual Snow Featured On CBS’ The Doctors
Professor Joanne Fielding: “Visual Snow: what we know and don’t know” (Video Presentation)
Melbourne researchers are conducting a world-leading study into the mysterious illness known as ‘visual snow’
VIDEO: End in sight for debilitating eye condition | Nine News Australia
Visual Snow Researchers Seeking Volunteers
A $140,000 donation kicks off research for Visual Snow
Visual Snow Initiative Collaborates with MIT for New Research on Visual Snow Syndrome
Blinded By Snow
First ever Visual Snow Conference will take place on Saturday, May 5, 2018 in Mission Bay Conference Center at UCSF
Visual Snow: seeing the world as if it is a static-filled, analog TV