Ideas and Suggestions for Future Episodes

[Tinnitus Talk]

Tinnitus Talk is a podcast on all things tinnitus.

We aim to engage and inform you, bringing you fresh insights and updates on research, treatments, personal experiences and public awareness. Our hosts – who all have tinnitus themselves – interview tinnitus researchers, healthcare providers and advocates, and bring you real life stories from tinnitus patients.

We want our podcast to be as interactive as possible and fulfil real needs and interests you might have.

So…. Do you have an idea for a future episode? Let us know about it!

Please comment below with your suggestions for guests to invite or topics/themes to explore, or anything else you'd like to see us feature in the podcast.

We put a lot of time and effort into our podcast!

There's a lot more that goes into creating a podcast than you might think. Check out below an overview of the number of volunteer hours that go into just one episode.

Are you keen to help with our podcast?

Let us know here, or send a PM to @Markku and @Hazel.

Help is needed in areas like: finding and inviting interesting guests, hosting episodes, recording short segments that we can feature in our episodes, audio editing, and social media outreach.

Looking forward to hearing from you guys!

Would you support us financially?

Podcasts are not created out of thin air. Apart from the 100s of volunteer hours that go into this, we spend money on it as well - partly out of our own pockets, since we operate on a very limited budget.

We set up a Patreon page for listeners who would like to directly support the podcast with financial donations. Patreon is a crowdfunding membership platform where creators can run a subscription content service, build relationships and provide exclusive experiences to their subscribers, or "patrons".

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Thank you!​

 

[Contrast]

Try if it is possible to get Hyperacusis Research and their president Bryan Pollard to do a discussion on hyperacusis, noise induced pain and how they may relate to tinnitus in both the sufferers' lives and related pathologies.

https://hyperacusisresearch.org/

Thank you.

 

[Hazel]

Try if it possible to get Hyperacusis Research and their president Bryan Pollard to do a discussion on hyperacusis, noise induced pain and how they may relate to tinnitus in both the sufferers' lives and related pathologies.

https://hyperacusisresearch.org/

Thank you.

Excellent suggestion! We have been in touch with them in the past, so this should be possible, Bryan's schedule permitting of course. Thanks!

 

[jay777]

Professor Dirk De Ridder should be interviewed in an episode of Tinnitus Talk Podcast.

 

[TimmyC]

Hubert Lim or Susan Shore. Although both are very busy, I bet Susan Shore is not as busy as Lim, as he is currently touring the conference circuit.

An expert on bimodal stimulation would make for a very fun podcast guest.

 

[Markku]

Hubert Lim or Susan Shore. Although both are very busy, I bet Susan Shore is not as busy as Lim, as he is currently touring the conference circuit.

An expert on bimodal stimulation would make for a very fun podcast guest.

Great ideas!

Susan Shore has already tentatively agreed to be on the podcast, due for hopefully later this year. She wanted to postpone the interview a bit because of the trial.

Richard Tyler has already been confirmed and interview date set (the podcast will likely be out in April) -- he was just recently appointed to Neuromod's Clinical Advisory Board.

 

[JohnAdams]

A comprehensive analysis of all the methods they are using to attempt to regenerate damaged cochleas.

 

[Markku]

A comprehensive analysis of all the methods they are using to attempt to regenerate damaged cochleas.

Who would be your ideal interviewee for this topic? Give a few names if you will.

 

[lapidus]

Bryan Pollard for sure.

 

[JohnAdams]

Who would be your ideal interviewee for this topic? Give a few names if you will.

Maybe no one. Just a breakdown of what's out there?

 

[JohnAdams]

Interview Contrast about hunting scammers!

 

[Markku]

Interview Contrast about hunting scammers!

I like that idea a lot. An episode on scams and charlatans. Contrast could join in for a segment, Jack could do a bit, someone else could be interviewed as well for a part, etc.

 

[Markku]

Bryan Pollard for sure.

Try if it is possible to get Hyperacusis Research and their president Bryan Pollard to do a discussion on hyperacusis, noise induced pain and how they may relate to tinnitus in both the sufferers' lives and related pathologies.

https://hyperacusisresearch.org/

Thank you.

Fantastic idea - and totally agree, having Bryan Pollard on the podcast would be great.

I have now sent him an invite.

 

[TuxedoCat]

I like that idea a lot. An episode on scams and charlatans. Contrast could join in for a segment, Jack could do a bit, someone else could be interviewed as well for a part, etc.

Is there someone at BTA (doesn't have to be David) or ATA who knows the regulatory aspect of these products and how they can make the claims they do?

 

[OnceUponaTime]

Can it be famous people with tinnitus or political/key people that can push for more funding for tinnitus??
Or even key people that can provide funding for research?? Just thinking outside the box.

Instead of making one 45 minute podcast for each person, maybe we can combine small 15 min interviews with some of these into one podcast?

Love all the work you guys are doing.
Once

 

[Manny]

Who would be your ideal interviewee for this topic? Give a few names if you will.

Don't know if this is realistic and timely, but - Will McLean!

 

[JohnAdams]

Don't know if this is realistic and timely, but - Will McLean!

Wow that nested comment makes me feel like a baby marsupial nested in the pouch of my mommy kangaroo @Markku.

 

[Jack Straw]

A comprehensive analysis of all the methods they are using to attempt to regenerate damaged cochleas.

I have reached out to Frequency Therapeutics a couple of times and haven't really heard back. Will keep trying though.

 

[Hazel]

Is there someone at BTA (doesn't have to be David) or ATA who knows the regulatory aspect of these products and how they can make the claims they do?

I was thinking we should do a dedicated episode on scams. Ideas on who to interview for that are welcome!

 

[Contrast]

I was thinking we should do a dedicated episode on scams. Ideas on who to interview for that are welcome!

I'll think about participating in this episode sometime in the future, likely yes, I just need time.

 

[TuxedoCat]

I was thinking we should do a dedicated episode on scams. Ideas on who to interview for that are welcome!

ATA did a podcast on OTCs, the guest was Dr. Robert DiSogra who is an audiologist. To quote Starthrower it's more blah, blah, blah.

DiSogra says right at the start that "the real story is ... the [US] Food and Drug Administration has not approved any of these products for tinnitus relief. There are over 80 products on the market right now coming from all different parts of the world, mostly here in the US. These are dietary supplements blah, blah, blah, the research is vague. There's loopholes in the law here (US) that allow manufacturers to make these claims for tinnitus relieve... they don't have to prove it. Blah, blah, blah. But as long as you put the disclaimer on the label that says "These statements have not been evaluated by the FDA. The product is not intended to diagnose, treat , cure or prevent any disease."

Tinnitus is not a disease, it's a symptom.

So unless the loopholes are closed these products can be sold legally. Is that a scam?

Why isn't closing the loopholes an ATA objective? It just goes back to the question, what does ATA do all day?

So, as far as a Podcast goes, it would be fun to hear how Contrast chases these guys down and gives them a hard time, but in the long run is anything going to change? These scams may become like a phoenix rising from the ashes.

If there were effective treatments and a cure, there would be no market for this stuff and it would go away or people would take it for what it is, a dietary supplement for health reasons and not for relief and cures.

Just keep that in mind. Maybe @Contrast has more up his sleeve!


TC

 

[MBH]

Could you discuss this on an episode?: How do you get people whose tinnitus is no issue to them to understand the full extent of tinnitus and how debilitating it can get.

We would have more people on our side if the amount of suffering tinnitus can cause was more widely known.

 

[Hazel]

Could you discuss this on an episode?: How do you get people whose tinnitus is no issue to them to understand the full extent of tinnitus and how debilitating it can get.

We would have more people on our side if the amount of suffering tinnitus can cause was more widely known.

I think it's an excellent idea to do an episode on how tinnitus severity is a scale. Not just in terms of loudness variance, presence of hyperacusis and other co-morbidities, but also just how people experience it differently and can be impacted differently. "My tinnitus is not your tinnitus," basically.

I actually think this goes both ways, because I also see severe sufferers on this forum telling others that they shouldn't complain when they struggle with milder tinnitus or with other life issues. That seems very insensitive to me, and I sort of resent this attitude of "my suffering is worse than yours." We can never truly understand what someone else is going through, and therefore we shouldn't try to compare, and certainly not judge. Well, that's my opinion anyway

In any case, yes, let's do an episode on severity!

 

[Markku]

Update on Bryan Pollard (Hyperacusis Research)

He graciously accepted the invite. We're hoping to do the interview this April.

(Thanks @lapidus / @Contrast for the idea.)

 

[MBH]

@Hazel - yes let me know when.

 

[Tanni]

Not sure where this forum is actually based? But someone like Sarah Newton, MP for Disabled People, Health and Work (or a representative from that office) would be pretty cool.

Would be interesting to see what the government's stance on tinnitus actually is.

 

[Hazel]

Not sure where this forum is actually based?

We're not based in any particular place, all in different countries. But the great thing is we don't have to visit people in person to record interviews with them (although that is of course preferable where possible).

someone like Sarah Newton, MP for Disabled People, Health and Work (or a representative from that office) would be pretty cool.

Would be interesting to see what the government's stance on tinnitus actually is.

Really good idea, duly noted. Maybe it could be part of an episode on tinnitus and work, for instance.

 

[Tinniger]

Maybe something about somatic tinnitus.

Is Dr. Robert Aaron Levine still practicing?

 

[Autumnly]

Perhaps a bit controversial but how about Rilana Cima or anyone who's worked on "A multidisciplinary European guideline for tinnitus: diagnostics, assessment, and treatment"?

Maybe we shouldn't give them more exposure but I truly want to know whether they think tinnitus in itself can be debilitating or whether tinnitus is just a 'matter of perception'.

 

[Tanni]

Another idea that I've been thinking about recently...

Maybe you could get hold of a charity marketing expert to talk about how best to fund raise. Someone in the same sort of area as Dan Pallotta, who specialises in fundraising specifically for charities. Tinnitus for sure has a public perception problem, as mentioned recently by David from BTA I believe...