Episode 14: Visual Snow and Tinnitus — Phantom Phenomena

Discussion in 'Podcast' started by Tinnitus Talk, Oct 9, 2020.

    1. tinnitus-talk-podcast-episode-14-visual-snow-tinnitus.png

      Hi everybody!

      We’re doing something a little different this time. In this episode, we’re talking to two pioneers in the field of visual snow.

      The patient experience is often one of being misunderstood, and research is in its infancy. What can be done? 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. Both are invisible illnesses, both are related to sensory perception, both exist on a scale of severity, both are poorly understood and severely underfunded.

      Learn more about visual snow through the highly informative resources offered by the Visual Snow Initiative.



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      Listen on:

      We welcome any discussion, but please keep the following in mind when commenting:
      • Off-topic comments, i.e. not directly responding to the content of the podcast, will be removed. So please do listen before commenting!
      • While we welcome constructive criticism on ideas or policies, we do not tolerate direct attacks on individuals.

      This episode was produced, as usual, by @Markku and @Hazel and @Autumnly. Transcription was done by @Liz Windsor and @Andrea Rings. Do you want to volunteer as well? Let us know!

      We also thank our Patreon supporters for making this podcast possible.

      Don't forget to:
      Sharing Is Caring
      Share the podcast on your social media and with your tinnitus friends!
       
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    2. Kendra

      Kendra Member

      Tinnitus Since:
      08/2017
      Cause of Tinnitus:
      SSNHL/ Acoustic Trauma
      Interesting episode! I have visual snow as well but it isn’t very bad.

      Hopefully a cure will be found for both.

      Thanks for the episode!
       
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    3. Hayls32

      Hayls32 Member

      Location:
      London
      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Pulsatle to begin with. Noise exposure later in life
      Thank you for sharing. I have both visual snow and tinnitus so it is good to know this is being taken seriously, finally.

      Thank you for all the work you do on this forum.

      Hayley x
       
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    4. stev3po

      stev3po Member

      Location:
      Seattle
      Tinnitus Since:
      Dec 19
      Cause of Tinnitus:
      Viral ear infection or neti pot?
      I have both as well. My VS is mostly when it's dark, but sometimes with patterns as well.
       
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    5. gmtfd

      gmtfd Member

      Tinnitus Since:
      11/2020
      Cause of Tinnitus:
      Unknown
      Nearly exactly 20 years ago, at the age of 24, I developed visual snow. Having been an avid reader and someone who enjoyed using computers, I found I could no longer do either comfortably. My future plans were derailed. I was in a very dark place for a long time, but eventually managed to find a new direction. I ended up as a mental health social worker.

      It took years, but over time I became so accustomed to the VS that it stopped bothering me. I learned to accept the limitations it placed on my life and to focus on other things.

      A few weeks back I developed tinnitus. I felt as if I'd been transported back in time to 2000. The same suffocating anxiety, the same black depression. Then I discovered the Tinnitus Talk Podcast. After listening to @Ed209's interview with CJ Wildheart, I felt a weight lift off my shoulders. Here were two sensitive, intelligent, humorous blokes getting on with their lives, despite tinnitus.

      This podcast blew me away too. I had no idea so much work had been done on visual snow, that it had morphed from being a vague idea people talked about on the internet into a somewhat-accepted diagnosis. One thing that really struck me was the extent of the crossover between visual snow and tinnitus. 60% of people with visual snow also have tinnitus. Wow. I just checked the diagnostic criteria for visual snow syndrome, and tinnitus is listed as one of the non-visual symptoms.

      So where am I now? It seems I have a long journey ahead of me, and I'm not looking forward to it, but the despair I was feeling last week has given way to cautious optimism. Thank you so much to everyone involved in putting this podcast together. If there had been resources like this available when I developed visual snow, I might not have had to suffer in the way I did.
       
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    6. weab00
      Gloomy

      weab00 Member Benefactor

      Location:
      Joe Dart's basement
      Tinnitus Since:
      05/2019
      Cause of Tinnitus:
      some good mf music
      I had tinnitus for 1.5 years and then developed hyperacusis and reactive tinnitus. Visual Snow Syndrome came 1 month into the hyperacusis. I find it very interesting. It seems like we have an overactive part of our brains, like the neuronal hyperactivity in the thalamus you hear about. Maybe there's a certain hyperactivity threshold that causes Visual Snow Syndrome once you surpass it.
       
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    7. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      You have a great attitude towards life. I believe this will be very helpful to you along with the fact that you already experienced a reality check 20 years ago. There does seem to be a correlation between visual snow and tinnitus, and there's also a correlation between tinnitus and glaucoma.

      I wish you all the best.
       
      • Like Like x 2
    8. Hazel
      Dreaming

      Hazel Director Staff Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      It's so rewarding to hear that you found some solace in our podcast!

      This is why we do this work, in our spare time. You can support the podcast for as little as 2 dollars a month (sorry to be so forward, completely optional of course!).

      We'd love to hear any other feedback or suggestions you might have :) I wish you all the best on this tough journey!
       
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    9. gmtfd

      gmtfd Member

      Tinnitus Since:
      11/2020
      Cause of Tinnitus:
      Unknown
      Done. Thanks again :)
       
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    10. Frédéric

      Frédéric Member Podcast Patron Benefactor Advocate

      Location:
      Marseille, France
      Tinnitus Since:
      11/19/2012
      Cause of Tinnitus:
      acoustic trauma
    11. Tasty
      Feminine

      Tasty Member Benefactor

      Location:
      Sendai, Japan
      Tinnitus Since:
      2009
      Cause of Tinnitus:
      Visual Snow Syndrome/TMJ & Cervical Spine ?
      Visual snow: Alarming and not uncommon

      Visual Snow Syndrome is affecting 2.2% - 3% of the general population and therefore is not an uncommon disorder like recent research suggests.

      1 in 27 has visual snow and 1 in 40 has the syndrome.
       
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