Ideas and Suggestions for Future Episodes

I'll also throw in a vote for Jonathan Kil at Sound Pharmaceuticals.

 

Maybe this has already been done, but I would love to hear from a sound expert about the science behind sound. How much is too much? What types of sounds are damaging to the ears? What is the actual science regarding ear protection? Can you protect too much or not? Many times I will hear a loud sound and it's difficult to differentiate between a loud sound that is amplified because of my hyperacusis and a damaging sound. It may help or alleviate some anxiety for hyperacusis and tinnitus sufferers if we had more information on safety. Just a thought.

 

Very good idea!

 

::Wild applause:: This is a very good get.

 

You guys are great man. The stuff you guys can do is just amazing.

 

Am I the only who would really appreciate a podcast with the likes of Robert Jackler of Stanford or Zheng-Yi Chen of Harvard? Where are we with hearing loss and tinnitus research? What hurdles do we need to overcome to get treatments to patients? What can we realistically expect from future first generation treatments?

 

@Markku, @Hazel, looks like this Neosensory founder David Eagleman is making the podcast rounds as this device is pretty new. Could be interesting to hear from him.

 

I'm really looking forward to the episode with Dirk De Ridder. He is my favorite scientist in the field. Here is the link to his presentation from March if you are interested.

Professor Dirk De Ridder: Understanding...

 

Hey @Hazel, I watched the presentation from Dirk de Ridder, pretty good stuff. However, he says that once tinnitus has been with you for some time, it "becomes part of who you are and becomes more difficult to treat".

Could you please do me a huge favor and ask him how big is this window? How long does it take before, as he says, becomes "part of who you are?" I've had tinnitus for 2 years and 7 months as I write this message, I really don't feel it is part of who I am, as I hate it more than anything and I'm resisting the idea of having this for the rest of my life as much as possible.

 

Along the same lines about how things work -- I would also love to hear researchers answer some of the questions here -- sort of like a Q and A episode? -- for example, explaining spikes (which causes tremendous anxiety for many on this forum), habituation, why volume / quality of tinnitus changes, why hyperacusis generally improves/resolves over time (and is this correlated with an improvement in tinnitus), why tinnitus goes away for some and not others-- what is exactly going on in the brain with all this stuff? (Including Tinnitus 101 type of questions for folks who just recently got theirs).

It could also include a Q & A on effects of meds like benzodiazepines, SSRIs, corticosteroids, supplements, diet, histamines, TMJ, just various topics you see people having lots of questions about, and are seeking straightforward info on how they can affect tinnitus, in layperson's terms. Sometimes these topics do get mentioned in the Tinnitus Talk Podcast, but it would be nice to have something set up more Q & A style. Apologies if this has already been suggested.

Thanks for the Tinnitus Talk Podcast!

 

As someone mentioned before, Shaowen Bao should definitely get the chance to be TinnitusTalked! As Dirk de Ridder said in his video above, you have to approach tinnitus from all different ways, and I feel Shaowen Bao has that new way of approach; neuroinflammation. I think Dirk de Ridder even mentioned it.

 

I'd like to throw in another vote for Susan Shore and Hubert Lim.

I also think it would be very beneficial if we can get an ENT organization/society on the Tinnitus Talk Podcast. I feel like ENTs are very disconnected from the reality of how tinnitus is for a lot of patients and I think getting them on board for the Tinnitus Talk Podcast can really help for visibility and awareness. It might even spark an effort into further research. A lot of the tinnitus organizations don't really seem connected with actual ENTs, so this could be a good start and could potentially go a long way.

https://www.entnet.org/content/about-us

https://www.aboto.org/sponsoring_societies.html

 

Steven Cheung would be interesting to hear. How far has he gotten now 6 years later.

The Brain at War 2015: Session 1 - New...

 

This video was amazing! It didn't give any false hope but explained things thoroughly.

 

I’m wondering if anyone has demonstrated in a video the creation and modification of tinnitus…
-—————————————————-
1. I mean…
1.1 What happens when a loud sound causes temporary tinnitus (e.g. several seconds to several minutes)?
1.2 What happens when a loud sound causes permanent tinnitus?
1.3 What happens when aging causes hearing loss and tinnitus develops?

2. When I ask “what happens” I mean:
2.1 What physical changes are made to axons and dendrites and other brain cells along the pathways to perception? Why?
2.2 What new brain circuits are set up? Why?
2.3 What brain circuits are deleted or changed? Why?

3.1 What are fusiform cells (in the cochlear nucleus) and how do they contribute to tinnitus?
3.2 What is the relationship between somatic pressure and “real” sound? E.g. the tiniest stressing of my jaw can increase the perceived tinnitus by quite a few decibels, yet I don’t feel much in the way of jaw sensation.

4. Why/how does stimulating the vagus nerve or trigeminal nerve contribute to increased brain plasticity?

5.1 What parts of the brain contribute to the perception of tinnitus, i.e. separate from the normal auditory pathway, and in separate networks?
5.2 Why do these networks exist?
—————————————–
Please let me know if you think there would be an audience for the above, or for similar questions.

Thanks!

 

What about Prof. Dr. Berthold Langguth (Germany)? He is chairman of the executive committee of the Tinnitus Research Initiative.

 

I can provide a response to 3.1 - the fusiform cells seem to be a piece of the brain that if they go haywire, are one gate on the path to a brain-wide dysrhythmia which we call tinnitus. If you have tinnitus the fusiform cells are damaged, but when researchers looked at damaged fusiform cells in rats, and attempted to stimulate or destroy them to reduce tinnitus, neither worked. This likely means they are 1 component of tinnitus, but it is distributed across the brain. It must pass through the fusiform cells on a trail of destruction but fixing them alone may not fix tinnitus.

 

Can only researchers be voted for episode candidates?

If not, I would suggest Grimes the musician. She has tinnitus and she is the girlfriend of Elon Musk and they have a child.

Or why not invite the man himself? He has a lot to say about Neuralink as a possible tinnitus/hearing loss eliminating device (besides other neurological problems).

Another suggestion is the family or widow of the recently deceased millionaire Kent Taylor who committed suicide because of tinnitus (he got it as a COVID-19 side effect). I think a video about this could be an eye opener to those who belittle the problem with 'oh it's just a sound'.

I think to get more public attention on the issue more famous people should be invited. I don't think anyone heard of Susan Shore outside of the tinnitus community for example.

All the detailed talk is great but it's a basically a scientific masturbation. Only people who understand what the hell it is about can enjoy it, who is usually a researcher him/herself.

 

Robin raises a very good point.

All I get from podcast interviews with researchers is that they continue researching. Well - big hairy bananas. Not one of them has produced a treatment, let alone a cure. It is not unlikely that there will never be either. Perhaps this predicament is too complex, too delicate to allow for improvement.

But in the meantime, all of us sufferers are condemned to go on living with a pretty devastating condition. All we really have to rely on is our own ingenuity at manipulating our coping techniques.

When we filmed “Dave’s Tinnitus Story,” I was hoping to see other members doing the same, and suggesting ways that they have developed to come to terms with their life situation.

But that did not happen did it.

Currently ‘coping techniques’ are all that we have. Let us interview those genuine sufferers who have found ways to go on leading productive lives.

Just a thought.
Dave xx
Jazzer

‘I’m hungry to know how people cope.
What helps.’

 

Maybe I misinterpreted the objective of the Tinnitus Talk Podcast. I think that these scientific topics are great for the sufferers who are hungry to understand their situation a little better. As I read the forums, I have a feeling that everyone is so understandably invested to get closer to the solution: Even by speaking about it feels maybe a tiny fraction of possible contribution of thought might add a piece to the big puzzle.

But on the other hand, there's the vast amount of people who do not have a single clue that these horrific conditions even exists. I think we have a crusader's mission to let everyone know it is a living nightmare to some and maybe not everyone is susceptible but everyone can get it.

Unfortunately, we live in a world where the only thing that will bring us closer to the solution is money, money and money. And the more people that are aware, the more likely it is for money to start pouring in to accelerate research for a panacea.

 

I think this is a great idea and would be very beneficial to a lot of people, but it would be very controversial.

Although the forum clearly allows for all perspectives and opinions, it's still very contentious to talk about coping methods here, as that invariably includes talk like 'positive mindset' / habituation etc. A quick glance through the comment section of Success Stories shows how angering such talk is for some, and I imagine this is why other members avoid it. Then imagine removing your anonymity to film it, which makes you even more vulnerable (as you know first hand), and receiving the same comments.

Just thought I'd offer a perspective on why people might feel that they can't do it, or that it might not go down very well.

 

Yes removing my anonymity across the entire internet did obviously expose me totally.

I was a very well known jazz musician, club owner, band leader etc… but I have to tell you that I have never once regretted it.

Tinnitus meant that I had to collapse my career, but what better time, or better reason to publicise this vile condition.

It took all of my courage and my faltering composure to do it justice, but somebody has to tell the truth about this condition, and I am still glad that together with Phil Swallow, and his wife Sue, our film crew team, we made it happen.

However, I would not necessarily expect anybody else to do the same.
Dave x

 

Perhaps this has already been suggested, but Liam O'Brien (a voice actor best known for Critical Role and various anime) has hyperacusis in one ear. How he can deal with recording, travel, and conventions while dealing with hyperacusis, I'll never understand.

He'll probably be very hard to get, but it'd be cool to hear from him.

Also, as a topic, I suggest an episode on social isolation caused by these conditions. Many of us have had to give up hobbies out of fear of how they might affect our tinnitus. Many of us have lost friends and even romantic partners because our tinnitus is so severe, or our fear of worsening it is so great, that we barely interact with others at all.

The isolation many in the world had to undergo in the past year is only a small slice of what many of us have lived through.

An episode about this, and tips on to discuss our issues with family and friends, I think would be a big help.

 

Michaël Boedts, a Belgian ENT (and colleague of Dirk De Ridder). He invented Tympanic Patching to treat ear fullness and he's the author of the Tympanic Resonance Hypothesis.

English: https://www.brai3n.com/en/team/michael-boedts/

Dutch: https://www.mariamiddelares.be/nl/artsen/michael-boedts

 

Adding to this: Anthony Ricci. He’s also from the Stanford Initiative to Cure Hearing Loss. He specializes in hearing on the cellular level. Him and Jackler would be a nice combo.

 

Hello, I'm not new to tinnitus but I am new to the Tinnitus Talk podcast and I'm now about halfway through the episodes. If this has not been discussed yet, I'm interested in hearing about any discussions with manufacturers to increase the visibility of hearing loss warnings on products (headphones, smart phones, speakers, etc). I got curious about this earlier so I checked the box and manuals for just about every audio product I purchased within the last few years and can't find a single warning about sound level. I'm not sure who you'd interview for this but I thought I'd throw it out there.

Love the podcast. Thanks.