Episode 14: Visual Snow and Tinnitus — Phantom Phenomena

[Tinnitus Talk]

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:

• Tinnitus Talk Podcast (incl. timestamps and transcript)
  
• SoundCloud
  
• iTunes
  
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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!

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[Kendra]

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!

 

[Hayls32]

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

 

[stev3po]

I have both as well. My VS is mostly when it's dark, but sometimes with patterns as well.

 

[gmtfd]

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.

 

[weab00]

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.

 

[Ed209]

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.

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.

 

[Hazel]

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.

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!

 

[gmtfd]

You can support the podcast for as little as 2 dollars a month (sorry to be so forward, completely optional of course!).

Done. Thanks again

 

[Frédéric]

Two hundred and forty-eight cases of visual snow: A review of potential inciting events and contributing comorbidities

https://journals.sagepub.com/doi/abs/10.1177/0333102421996355

 

[Tasty]

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.

 

[haha ear go eeee]

I've been doing some pondering lately about Gabapentin and potassium channel openers, and how some of them have the side effects of causing visual snow.

Trobalt acted on all potassium channels I believe, which is why it caused so many unwanted side effects, including visual snow and other eye issues.

Gabapentin, previously thought to involve the sodium channels, has been recently revealed as a potassium channel opener, specifically the Kv7.2, Kv7.3 & Kv7.5. I've also heard reports of it causing visual snow in some people.

XEN1101 is a trial drug and a Kv7.2 and Kv7.3 potassium channel opener, but it hasn't been reported of causing the same eye issues like Trobalt had.

Point I'm making, could opening the Kv7.5 channel be causing these eye side effects?