Discuss on Tinnitus Talk Forum
Visual snow is a poorly understood condition. 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.
Much of this sounds eerily similar to the tinnitus experience, and we spoke extensively about the analogies between the two conditions. Both are invisible illnesses, both are related to sensory perception, both exist on a scale of severity, both are little recognised and severely underfunded.
Learn more about visual snow through the highly informative resources offered by the Visual Snow Initiative.
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Would you like to read a transcript of the interview?
We have prepared one for you. Click here for the transcript (PDF).
It’s one thing to have a bad problem. It’s a whole other thing to have a bad problem that people tell you doesn’t exist.
It is a continuous, low-level, non-formed signal which has some variation but it’s fundamentally there all the time. […] If I then said I was talking about tinnitus you wouldn’t be entirely surprised.
For a lot of people it’s very emotional so they have a lot of passion sometimes when they speak, but I’ve had to myself learn how to tone down the emotion and be pragmatic and when I speak use my words wisely to reach people, you know?”
Please help me. I have severe visual snow, palinopsia, and ocular migraine. I am willing to join any clinical trials you have. I am struggling with this. Thank you.
Sorry to hear that Lisa.
It would be worth signing up to Visual Snow Initiative’s newsletter at https://www.visualsnowinitiative.org/ and keeping an eye on their Facebook and Instagram group.
This is a very informative podcast and really great to hear a summary of research to date around Visual Snow. Thanks Tinnitus Talk for hosting this! And thank you to Peter and Sierra for spreading awareness of our condition.
Thank you so much for this great podcast. I have both tinnitus and visual snow. It has been great to hear things that validate my experience. I am also willing to be involved in future clinical trials or questionnaires etc. I live in Australia and am a member of the Visual Snow Initiative Facebook page.
My visual snow came on after being given Fluoroquinolone antibiotic Ciprofloxacin with Metoclopramide for 21 days. I developed multiple adverse effects that include tinnitus. My vision became blurred and I developed large floaters and light sensitivity. My body started twitching and spasming.
When were you floxed, and how are your visual symptoms now? Has the visual snow and light sensitivity decreased in severity?
Sierra has described all of my symptoms in the first five minutes of this podcast… visual snow, palinopsia, tinnitus, dissociation, depression, insomnia, anxiety & memory problems.
I’ve been living with these for the last 20 years of my life and I continue to find it all so impossible to cope with. I’ve also been to see a range of doctors and neurologists and had MRI scans, but all to no avail as they were unable to detect anything wrong.
These symptoms all developed after taking a medication for acne when I was 18years old and I feel utterly devastated how it’s affected my life. I have ended up lonely, depressed and severely frustrated that no one can help.
I’m glad to have stumbled upon your podcast, and am very keen to hear any advice or of any research that is being done to help people live with these horrible symptoms.
Hello, is there a forum or group for physical tinnitus as well? I have had tinnitus, visual tinnitus, and what I call physical tinnitus since I was a kid (now in my 40s) and would like to see what others experience.