Tinnitus Research Initiative (TRI) 2019 Conference

[Hazel]

We're on a roll now, here's the next one! Based on one viewer's feedback from the previous video, we reduced the volume of the intro music to make it easier on the ears. Subtitles are there too for those who don't want any sound or can't hear well.

Alain Londero is a very compassionate ENT who really cares about his patients. He's also a great advocate for better tinnitus care in France, trying to educate his fellow physicians on tinnitus and urging them to take tinnitus patients and their distress seriously.

Here he talks mostly about some new research he's involved in regarding the potential use of virtual reality as a tinnitus treatment; making the analogy with phantom limb pain. He also shares his impressions of the TRI conference and thoughts on how to acquire more funding for tinnitus research.

I hope you find it somewhat informative. As always, please give us your feedback!

Cheers,
Hazel

 

[Hazel]

This one is for those with an indepth interest in research. Deborah Hall is perhaps the top expert in assessing outcome measures for tinnitus, i.e. how do we measure whether new tinnitus treatments work. Tinnitus Hub has worked with her on the COMIT'iD study, where patients got to define the key outcome measures for three types of tinnitus interventions: drug therapies, sound therapies, and psychotherapies.

I know this type of content might not appeal to everyone, and we can expect the inevitable "why don't you just find a cure" responses, but... It's easy to lose sight of the fact that when we do find a (partial) cure it will need to be tested before we know whether it really works and for whom. Only then can it become widely available and will patients be assured of what they're spending money and effort on.

Too often in the past, and still today, tinnitus interventions have been studied with small sample sizes, without involving the right experts, without considering placeo or statistical significance, etc. So this topic merits quite some attention, in my humble view

 

[Hazel]

And here is number four! Prof. Dr. Birgit Mazurek is the head of the Charité Tinnitus Center in Berlin, where in addition to treating patients they also conduct research on tinnitus. Her current focus is on the comorbidities of tinnitus, like chronic pain and depression. She and her team are gathering data to find out how these various conditions are interrelated, and which causes which. They are also looking for objective biomarkers of tinnitus and tinnitus-related distress.

 

[ChrisBoyMonkey]

Thank you @Autumnly. I really admire you, and of course @TuxedoCat, @Hazel, and @Markku.

I wish I could do more to help, but ever since I got worse I've been pretty much debilitated

Hopefully I'll get better or over it soon, one way or another...

 

[bobvann]

2020 Vancouver B.C. is not that far from me.

Awesome, I am in the lower mainland! Shitty, my father in law had a bad stroke last year

 

[dj_newark]

It's EXTREMELY disheartening to read that most researchers think that a cure will come in the next few decades. I believe that effective treatments are coming in the next year or so from the University Michigan device or from Lenire.

If I really thought I had to wait decades to be relieved I would end it all now without hesitation.

And it's possible that hearing restoration will be able to cure tinnitus. And it doesn't seem that it will be decades for that to be commercialized.

 

[brokensoul]

It's EXTREMELY disheartening to read that most researchers think that a cure will come in the next few decades. I believe that effective treatments are coming in the next year or so from the University Michigan device or from Lenire.

If I really thought I had to wait decades to be relieved I would end it all now without hesitation.

And it's possible that hearing restoration will be able to cure tinnitus. And it doesn't seem that it will be decades for that to be commercialized.

Where exactly did you read that most researchers think it will still take decades?

Looking at the interviews so far I only found a statement by Dr. Susan Shore at the end of her interview, saying that she thinks that "there are numerous treatments that are coming out of basic science that are going to come to fruition in the coming decade".

Decade.

Not decadeS.

 

[brokensoul]

Hi @Hazel,

Were there supposed to be more interviews released from the TRI 2019 conference?

 

[Hazel]

Ok, we're doing a big push now for Tinnitus Week to get the rest of the TRI 2019 videos out. So to all who were wondering, @brokensoul and others, here's the next one:



Some of you might have heard of Dr. Dirk de Ridder and his work on brain stimulation. He explains the basic concepts of which pathways in the brain they are targeting. He also talks about some major advances in technology that allow for more targeted application of stimuli to the brain.

You can find more information about his Brai3n clinic here.

Curious to hear what you think.

More videos coming out in the next few days... The amazingly talented @Autumnly is doing most of the video editing and graphics, so please join me in thanking her! And @Markku as always has done an amazing job fixing up the sound quality and doing final production.

 

[brokensoul]

Some of you might have heard of Dr. Dirk de Ridder and his work on brain stimulation. He explains the basic concepts of which pathways in the brain they are targeting. He also talks about some major advances in technology that allow for more targeted application of stimuli to the brain.

You can find more information about his Brai3n clinic here.

Curious to hear what you think.

More videos coming out in the next few days... The amazingly talented @Autumnly is doing most of the video editing and graphics, so please join me in thanking her! And @Markku as always has done an amazing job fixing up the sound quality and doing final production.

Always interesting to hear Prof. Dr. De Ridder's input. I wish the interview was longer, he really has extensive knowledge on the brain and tinnitus. He's been involved with tinnitus research for a very long time and has intimate knowledge on how the space has evolved over several decades. I always tried to learn as much as possible during my brief consultations with him, but it's obviously a very challenging subject when you take the neurological perspective on tinnitus.

One thing that was clear from my conversations with him was that he considers chronic tinnitus as a neurological disorder (imbalance in the brain) and lowered my expectations in regards to hearing regeneration being capable of resolving tinnitus. That honestly kinda broke me, but I prefer hearing what he believes to be true, rather than feeding into what could be false hope. He believes the future in tinnitus treatment is in advanced neuromodulation and stressed that the technological field is making very significant advancements which someday could provide the capability to rebalance the brain.

I don't know exactly what system he was talking about, but he said that there was an extremely expensive first of its kind system being built in Europe (Switzerland IIRC) that would be ready in a year that might help patients with chronic tinnitus.

The reward system (network) he is talking about, is explained on the following page:
https://wikipedia.org/wiki/Reward_system

When it comes to neurosurgical tinnitus treatments, I think we all kinda freak out thinking about having some electrical device in our brain. Just thinking about it is enough to make me feel uncomfortable.

However, suppose hearing regeneration doesn't resolve or relieve tinnitus in the coming 5 years or we come to the conclusion it doesn't address chronic long term tinnitus. Don't get me wrong, I really hope it does, but we just don't know (yet). I'm already desperate now to be honest, then what is it going to be like in 5 years if I were able to hold on for that long? If it would be demonstrated that it worked well, what other choice do you have if you're dealing with a life altering tinnitus?

In that sense, bring it on, crack my skull open, split my brain and insert all the electrodes necessary to soothe the network responsible for tinnitus. If I don't wake up after surgery, so be it. Problem solved. If something goes seriously wrong and I wake up completely retarded and disabled, they can euthanise me. I'll make sure to have signed the necessary paper work.

Thanks so much for all the hard work @Markku, @Hazel and @Autumnly!! Your support and dedication to this community is amazing!!

 

[Frédéric]

@Autumnly, @Hazel, @Markku: Thank you so much.

Wow. From the Dr. Dirk de Ridder video at 00:42 "we could only treat about one-third of the patients with normal brain stimulation, and then we could rescue another one-third by changing the stimulation design".

It is quite a large percentage. Now it all depends on the meaning of "we could". And out of curiosity, what about the last one-third of the patients?

And basically (I don't know if it has been already asked), what does he think about bimodal neuromodulation?

Neuromod's Lenire?
Dr. Susan Shore from University of Michigan?
University of Minnesota?

 

[Frédéric]

@brokensoul: hold onto hope, Dr. Dirk de Ridder seems to be confident about a non-invasive procedure.

However, I am little bit confused. Checking their website www.brai3n.com, I wonder if they are a practionnal tinnitus clinic (I mean if they continually invite tinnitus patients to come visit them).

 

[Hazel]

Wow. From the Dr. Dirk de Ridder video at 00:42 "we could only treat about one-third of the patients with normal brain stimulation, and then we could rescue another one-third by changing the stimulation design".

It is quite a large percentage. Now it all depends on the meaning of "we could". And out of curiosity, what about the last one-third of the patients?

I'm also not sure, wish I had asked more at the time. I do believe though that he was referring to an invasive, i.e. surgical procedure, so maybe that's why it's not considered a viable option anymore?

 

[brokensoul]

@Autumnly, @Hazel, @Markku: Thank you so much.

Wow. From the Dr. Dirk de Ridder video at 00:42 "we could only treat about one-third of the patients with normal brain stimulation, and then we could rescue another one-third by changing the stimulation design".

It is quite a large percentage. Now it all depends on the meaning of "we could". And out of curiosity, what about the last one-third of the patients?

And basically (I don't know if it has been already asked), what does he think about bimodal neuromodulation?

Neuromod's Lenire?
Dr. Susan Shore from University of Michigan?
University of Minnesota?

I asked Brai3n about Lenire and they told me that (a few months ago) they were in talks with Neuromod and that the intention was to offer it sometime in 2020.

They didn't want to state anything in terms of efficacy. So I don't know, perhaps they already figured out it doesn't work that well. They are certainly very aware about it.

I didn't ask about Shore and Minnesota.

 

[brokensoul]

@brokensoul: hold onto hope, Dr. Dirk de Ridder seems to be confident about a non-invasive procedure.

However, I am little bit confused. Checking their website www.brai3n.com, I wonder if they are a practionnal tinnitus clinic (I mean if they continually invite tinnitus patients to come visit them).

It's not in a clinic in the traditional sense. It's a seemingly regular house, where they consult people with tinnitus and other neurological conditions and diseases.

First you do a qEEG and questionnaire and then you consult Dr. De Ridder and discuss your situation and potential treatments.

They have a room where you can do neuromodulation treatments, such as tDCS. The neuromodulation is to lower your stress reaction to tinnitus and there are some variations in approach and technique. I tried a few sessions, but it didn't affect me in any way.

The standard prescribed medication seems to be Deanxit and Clonazepam. Deanxit is a combination of an antipsychotic and a TCA.

I tried the Deanxit for 2 weeks, but it contains an antidepressant and I felt it exacerbated all my visual symptoms and I felt weird. It's perhaps helpful for patients with tinnitus, but in my experience not for someone with Visual Snow Syndrome.

I didn't combine it with Clonazepam though and maybe I should have.

 

[HootOwl]

Wow. From the Dr. Dirk de Ridder video at 00:42 "we could only treat about one-third of the patients with normal brain stimulation, and then we could rescue another one-third by changing the stimulation design".

And pardon me if I got this wrong, but wasn't that the scrapped design? So if he was about to get 2/3rd improvement with what he deemed to be an inadequate design then surely he is aiming for nearly 100% of sufferers with his next iteration? That would be extremely heartening if that's the case.

 

[brokensoul]

And pardon me if I got this wrong, but wasn't that the scrapped design? So if he was about to get 2/3rd improvement with what he deemed to be an inadequate design then surely he is aiming for nearly 100% of sufferers with his next iteration? That would be extremely heartening if that's the case.

Yeah that part of the interview was like WTF?! I don't think he meant to say 2/3 were cured, probably more like "helped" in some way. It's vague for sure and it demanded a follow-up question.

 

[Markku]

it demanded a follow-up question.

Nobody should blame @Hazel for not asking any follow-up questions on the spot. If only you knew the time pressure she was under, she had no ability to interact with the interviewee in the sense that you wished.

She did an amazing job and we should be so happy she gives her spare time to this cause. If anyone disagrees, I'd like to see them do better.

I have never seen a better tinnitus advocate than her in my 10 years of having tinnitus. She humbles me.

 

[FGG]

Always interesting to hear Prof. Dr. De Ridder's input. I wish the interview was longer, he really has extensive knowledge on the brain and tinnitus. He's been involved with tinnitus research for a very long time and has intimate knowledge on how the space has evolved over several decades. I always tried to learn as much as possible during my brief consultations with him, but it's obviously a very challenging subject when you take the neurological perspective on tinnitus.

One thing that was clear from my conversations with him was that he considers chronic tinnitus as a neurological disorder (imbalance in the brain) and lowered my expectations in regards to hearing regeneration being capable of resolving tinnitus. That honestly kinda broke me, but I prefer hearing what he believes to be true, rather than feeding into what could be false hope. He believes the future in tinnitus treatment is in advanced neuromodulation and stressed that the technological field is making very significant advancements which someday could provide the capability to rebalance the brain.

I don't know exactly what system he was talking about, but he said that there was an extremely expensive first of its kind system being built in Europe (Switzerland IIRC) that would be ready in a year that might help patients with chronic tinnitus.

The reward system (network) he is talking about, is explained on the following page:
https://wikipedia.org/wiki/Reward_system

When it comes to neurosurgical tinnitus treatments, I think we all kinda freak out thinking about having some electrical device in our brain. Just thinking about it is enough to make me feel uncomfortable.

However, suppose hearing regeneration doesn't resolve or relieve tinnitus in the coming 5 years or we come to the conclusion it doesn't address chronic long term tinnitus. Don't get me wrong, I really hope it does, but we just don't know (yet). I'm already desperate now to be honest, then what is it going to be like in 5 years if I were able to hold on for that long? If it would be demonstrated that it worked well, what other choice do you have if you're dealing with a life altering tinnitus?

In that sense, bring it on, crack my skull open, split my brain and insert all the electrodes necessary to soothe the network responsible for tinnitus. If I don't wake up after surgery, so be it. Problem solved. If something goes seriously wrong and I wake up completely retarded and disabled, they can euthanise me. I'll make sure to have signed the necessary paper work.

Thanks so much for all the hard work @Markku, @Hazel and @Autumnly!! Your support and dedication to this community is amazing!!

So is he saying that neuro plasticity in tinnitus is unique to any other neuroplasticity (e.g. phantom limb, vestibular rehab) in that once it's in the brain, it's stuck? This makes no sense to me. Why would plasticity only work one way specifically for tinnitus? Why would the brain have that preference?

He specifically said restoring hearing wouldn't cause any plasticity to affect tinnitus once it's in the brain?

 

[brokensoul]

Nobody should blame @Hazel for not asking any follow-up questions on the spot. If only you knew the time pressure she was under, she had no ability to interact with the interviewee in the sense that you wished.

She did an amazing job and we should be so happy she gives her spare time to this cause. If anyone disagrees, I'd like to see them do better.

I have never seen a better tinnitus advocate than her in my 10 years of having tinnitus. She humbles me.

@Markku, please, it's a general remark, not a personal one to @Hazel. I'm extremely appreciative for everything you all do and I'm well aware these things are unavoidable. This is just a general reaction that many people will feel watching the interview. In no way is it a critique of @Hazel.

I understand you may have interpreted it in this way. Let me just say that this required further clarification on the part of Dr. De Ridder to understand what he meant by that statement.

In no way does anyone of us expect perfection.

 

[brokensoul]

So is he saying that neuro plasticity in tinnitus is unique to any other neuroplasticity (e.g. phantom limb, vestibular rehab) in that once it's in the brain, it's stuck? This makes no sense to me. Why would plasticity only work one way specifically for tinnitus? Why would the brain have that preference?

He specifically said restoring hearing wouldn't cause any plasticity to affect tinnitus once it's in the brain?

No, I believe he says that there is something actually wrong in the brain. Not a maladaptive neuroplasticity consequence of hearing damage, but an actual malfunctioning. A chemical imbalance. He didn't explain it in detail though. There's not much room for such hypothesis/theoretical questions in a 30 min consultation.

Open questions:

Think about ototoxic medication, why is it considered ototoxic only, couldn't it be neurotoxic and affect brain chemicals or neurotransmitters in ways we don't fully understand today?

Think about SSRIs that cause VSS in some people. They change brain chemistry. This also results in tinnitus. There is likely no ototoxic damage.

What about sound waves, noise induced tinnitus, why would it only affect the inner ear? Isn't it possible that loud sound waves cause some brain damage in ways we don't fully understand today?

I'm not saying it is, but who knows.

 

[FGG]

No, I believe he says that there is something actually wrong in the brain. Not a maladaptive neuroplasticity consequence of hearing damage, but an actual malfunctioning. A chemical imbalance. He didn't explain it in detail though. There's not much room for such hypothesis/theoretical questions in a 30 min consultation.

Why do people have one sided tinnitus then and why does it correspond with audiogram changes then?

Think about ototoxic medication, why is it considered ototoxic only, couldn't it be neurotoxic and affect brain chemicals or neurotransmitters in ways we don't fully understand today?

At least in the case of aminiglycoside antibiotics, they are known to have severe reproducible histological effects on the cochlea without much penetrance in the BBB. I don't think direct brain damage results but tinnitus does due to neuroplastic changes post cochlear damage.

 

[Hazel]

@Markku, please, it's a general remark, not a personal one to @Hazel. I'm extremely appreciative for everything you all do and I'm well aware these things are unavoidable. This is just a general reaction that many people will feel watching the interview. In no way is it a critique of @Hazel.

I understand you may have interpreted it in this way. Let me just say that this required further clarification on the part of Dr. De Ridder to understand what he meant by that statement.

In no way does anyone of us expect perfection.

Thanks, and no harm done!

We often expect perfection of ourselves, but the situation was far from ideal. I remember having tried to catch him for two days, I managed to get him in front of the camera just ten minutes before the cameraman had to leave

That's why this year in Vancouver we hope to be with at least two people and spread the workload a bit.

I was thinking we should probably invite Dirk de Ridder to the Tinnitus Talk Podcast, so he can explain all this in more detail.

 

[Hazel]

The next one in our TRI 2019 video series is this interview with Arnaud Noreña. In a charming French accent, he takes us through an impressive range of projects he is working on.



One line of work concerns seeking new acoustic treatments to suppress tinnitus through residual inhibition. Another line of his work investigates chronic inflammation of the tensor tympani muscle in the inner ear after acoustic trauma, which he hypothesises can cause a cluster of symptoms including tinnitus, ear pain, ear fullness and dizziness.

 

[lcj]

I was thinking we should probably invite Dirk de Ridder to the Tinnitus Talk Podcast, so he can explain all this in more detail.

I think that would be a great idea.

 

[lapidus]

The next one in our TRI 2019 video series is this interview with Arnaud Noreña. In a charming French accent, he takes us through an impressive range of projects he is working on.

One line of work concerns seeking new acoustic treatments to suppress tinnitus through residual inhibition. Another line of his work investigates chronic inflammation of the tensor tympani muscle in the inner ear after acoustic trauma, which he hypothesises can cause a cluster of symptoms including tinnitus, ear pain, ear fullness and dizziness.

Absolute fantastic work, Hazel. Norena and his colleague Damien Ponsot are doing some really groundbreaking research regarding the middle ear, which is such an underresearched area.

Here's a link to the paper that was mentioned in the interview:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6156190/

 

[Hazel]

Good study design is essential to push tinnitus research forward.



Inge Stegeman focuses on translating scientific evidence into clinical practice and what optimal research methodology for tinnitus studies looks like. She also explores how epidemiology, big data and more collaborations are imperative in our common pursuit of finding treatments and cures for tinnitus.

 

[Greg Sacramento]

So is he saying that neuro plasticity in tinnitus is unique to any other neuroplasticity (e.g. phantom limb, vestibular rehab) in that once it's in the brain, it's stuck? This makes no sense to me. Why would plasticity only work one way specifically for tinnitus? Why would the brain have that preference?

He specifically said restoring hearing wouldn't cause any plasticity to affect tinnitus once it's in the brain?

Dr. Dirk de Ridder - plasticity.

The brain processes and responses to everything within our being. For some with permanent stereocilia damage, tinnitus may never completely resolve. However, pulsatile tinnitus sounds will totally disappear if proper treatment of cause can be given. With somatic tinnitus, a reduction in tinnitus severity can happen with proper treatments and therapy.

For lasting improvement with pulsatile or somatic tinnitus depends also on system and biological process influences. Then there's interference influences such as smoking, dehydration, hypertension and postures.

 

[FGG]

Dr. Dirk de Ridder - plasticity.

The brain processes and responses to everything within our being. For some with permanent stereocilia damage, tinnitus may never completely resolve. However, pulsatile tinnitus sounds will totally disappear if proper treatment of cause can be given. With somatic tinnitus, a reduction in tinnitus severity can happen with proper treatments and therapy.

For lasting improvement with pulsatile or somatic tinnitus depends also on system and biological process influences. Then there's interference influences such as smoking, dehydration, hypertension and postures.

So he's saying he agrees tinnitus can be treated by treating underlying cause and isn't "stuck in the brain" then.

 

[Hazel]

So he's saying he agrees tinnitus can be treated by treating underlying cause and isn't "stuck in the brain" then.

I think he's saying that's the case with certain causes, not all of them.