Episode 17: Tinnitus, Ingrained in the Brain? — Prof. Dirk De Ridder

[Tinnitus Talk]

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Hey there!

Prof. Dirk De Ridder is one of the most cited tinnitus researchers, a very eloquent speaker, and a passionate advocate for people with tinnitus. We thoroughly enjoyed this discussion with him about how tinnitus can get stuck in our brains and how this process is analogous to other chronic conditions like pain.

He describes how he works with patients and what he can offer them. Although he does not see Lenire and similar devices as the solution, he does see promising developments in psychedelics-based treatments and suppressing chronic neuroinflammation.

For our Patrons, we also have a video version of this interview. Support our work!



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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 by @Markku and @Hazel, with the support of @Autumnly, and the transcript created by @Andrea Rings. Do you want to volunteer as well? Let us know!

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[Nobody19]

I love his optimism!

 

[Ed209]

I watched this a while back and found it to be highly engaging.

I was surprised when it popped up as a new episode because it seemed like I watched it ages ago, and then I remembered I'm a podcast patron

 

[star-affinity]

Cool!

I will take a listen as soon as I can. I must say "get stuck in our brain" sounds really scary to me. I mean, how would you cure something that's stuck in your brain? But maybe my fear is unwarranted.

Also really curious what happens if you got tinnitus in conjunction with hearing loss – isn't it reasonable to think that curing the hearing loss would cure the tinnitus too? Would be nice if that could be verified somewhat soon...

Addendum:

OK, sorry I've been listening a bit now and I don't really see the logic in that if tinnitus in conjunction with hearing loss is an ear problem then "...the solution is easy – you wear a hearing aid and the tinnitus should improve, which unfortunately is not the case. Only 20% of the people who wear haring aids do get better."

If hearing aids work by increasing the volume on the frequencies where the hearing loss or hearing reduction is, it's one thing that this helps the brain hear those sounds better than without an hearing aid, but there's still some "cords" and/or "receptors" (i.e. synapses and hair cells) in the inner ear that used to be there that are missing or broken and as long as that's the case, is it so strange that the brain keeps "filling in" a phantom sound for those frequencies?

If those "cords" (nerve cells/synapses) and "receptors" (hair cells) are repaired, why shouldn't that also make the brain stop the phantom sound? Or is the theory that the brain (in the long run) starts ignoring that there's missing input that used to be there and creates the phantom sound anyway and therefore it doesn't matter if the synapses and hair cells are repaired or not?

I really wonder how we can make that conclusion before first seeing what happens if we repair the hearing loss, since I don't think hearing aids are a good enough replacement for the synapses and hair cells.

Just let me know if I'm totally clueless in my reasoning here and I'll stop.

 

[star-affinity]

Me again...

I just continued to listen a bit more and then the very good point (which I already knew, but didn't think of in my reasoning above) came up that not all people who have hearing-loss have tinnitus.

But maybe tinnitus only happens when hair cell and/or synapses are damaged – when the connection to the brain is glitching, but not totally "cut off"?

Sure would be good to know why some develop hearing loss without tinnitus while some do. Hmm...

Me just thinking as a lay person again, of course.

 

[star-affinity]

Oh, my... Don't want to be negative, but after having listened to the whole thing – despite him saying a cure could be around within 5-10 years – with all those requirements of "competition", collaboration, finance and artificial intelligence to tackle this this seemingly very complex brain problem it feels like it will end up like this:

But let's stay positive, shall we!

 

[Peter Q]

Interesting interview. It does a service in demystifying tinnitus and in a sense normalizing it.

One of the main points seems to be that the main problem is that the tinnitus becomes incorporated into one's sense of self or identity. Treating tinnitus then becomes a question of finding ways of decoupling this negative enmeshment. Even this understanding and awareness in itself might serve as part of the therapeutic process.

 

[DaveFromChicago]

Thanks ever so much for developing this. It is without question the most thorough and honest assessment of where we are in our efforts to understand this.

I have been turning over in my mind all sorts of reactions to this.

He very convincingly describes how the capacity to habituate varies enormously among the entire spectrum of tinnitus sufferers (and didn't he describe how having "Risk Genes" would hinder this ability?)

So should I try a psychedelic drug to break the brain's repetition system? Or can Ketamine do that? At this point I would try anything.

I recalled that when Whitey Bulger was in Alcatraz in return for a shortened sentence he agreed to participate in an experiment wherein he had 50 injections of pharmaceutical grade LSD over a period of weeks. Although he claimed that this gave him screaming nightmares for the rest of his life (not to mention aggravated sociopathy), would I risk this if it would permanently eliminate tinnitus? Let's hope I wouldn't have to go this far.

Kudos to Dr. De Ridder for describing a very clear demarcation between habituation (or "mindfulness", which is the term he used) and reduction or elimination in tinnitus volume (and for his blunt understanding of the very limited nature of habituation.)

One concern I had was that towards the end he said that he regarded Dr. Shore's device as only associated with habituation/mindfulness (or do I stand corrected on this.)

He was spot on when he said that these reported 10% reductions in THI (Tinnitus Handicap Inventory) were frankly meaningless. In a professional way he described how utterly limited Lenire is.

I freaked when he said that "We will definitely need artificial intelligence" and that "The model becomes even more complicated, which we humans cannot find." He was honest enough to admit that he does not yet have an explanation about why some people with hearing loss have this and others do not.

I suppose that researchers could get that computer that can figure Pi to a trillion places to provide us with all of the definitive answers (and given the complexity of this, this is just what may be required.)

I was really impressed with the way he covered the entire gamut of theories about tinnitus, and how a concentrated global effort will be required to find these answers.

How skeptical should I be about his prediction that a real treatment could be available in as little as 5 years?

I am 67 and I do not have very many more years (let alone decades) left to wait for this.

 

[DaveFromChicago]

One more point: He stated that 60% of rock musicians were not undermined by this because the colossal volume of years of playing produced dissonance that was so similar to their later tinnitus sounds that nearly full habituation resulted.

And what Old-Time Rocker does not have this?

I recall that sound researchers recorded the decibel level of Tchaikovsky's 1812 Overture (which is the loudest classical composition ever produced.) They then went to a Grand Funk concert, and it was (I kid you not) 12 times louder than the Overture.

I am, however, aware of how many rockers are incapacitated by this.

In an interview Jeff Beck described tinnitus as "excruciating."

Huey Lewis and Brian Setzer were crestfallen about having to cancel recent planned concert tours because of this.

Pete Townsend has given various interviews about this (and The Who were known as being the loudest band among the major groups.)

The British News services reported on two rockers who committed suicide because of this.

It just shows that habituation is not achievable for everyone.

 

[Massi91]

I am 67 and I do not have very many more years (let alone decades) left to wait for this.

Be happy, as you don´t have to live with this for another 30 years... People who are 17-18 and got tinnitus have to live with it for 60-70 years.

We don´t even know if there will be a cure, since it is very complex and I personally don´t think there will be a definite cure...

It just shows that habituation is not achievable for everyone.

I think it depends on your ability to cope with it. Habituation is certainly possible for everyone yet it is hard for some and easy for others. Depends on you emotions and if you are OK with it, habituation will get easy.

You have to think about tinnitus as something good, a friend that never leaves your side. I know it sounds stupid but it worked for me.

 

[DaveFromChicago]

To Massi91:
That isn't stupid at all.

I have had to devise various somersault, emergency survival mind games just in an attempt to cordon off the nightmarish intrusiveness of this.

I have even had to pull over and stop the car when I had a spike while driving; I have to hold my mind in an inert stillness (and shut off my chattering ego) to halt the tsunami of rage and panic that a spike induces.

 

[star-affinity]

We don´t even know if there will be a cure, since it is very complex and I personally don´t think there will be a definite cure...

If a person got the tinnitus in conjunction with hearing loss and curing the hearing loss won't remove the tinnitus; then I'm also worried that a cure will be difficult.

But I'm pretty confident we'll manage eventually anyway. If we look at the technical and bio-technical progress humanity has made in relatively short time I think the possibilities in the future are more or less endless.

Also, when involving AI the limits of the human brain is no more a limit.

 

[David S]

But maybe tinnitus only happens when hair cell and/or synapses are damaged – when the connection to the brain is glitching, but not totally "cut off"?

I tend to agree to this. The normal explanation model is
- Hair cells dies over a period of 6 months
- Brain starts to make phantom sounds because of loss of nerve input
- Because of the plasticity of the brain, the sound gets ingrained within 6-12 months

My belief is that tinnitus can stay inner ear -based for much longer. Hair cells keeps dying for a much longer time or only partly die. I think of it like a dense forest where you only cut out 50% of the trees. The trees remaining will be much more exposed to the coming storms...

It might also be that some of us are more likely to have damage in the outer hair cells. Their role is more of amplifying sound than signaling sounds to the brain.

 

[ThomasC]

I'm pretty sure curing hearing loss will help tinnitus just like when we play our tinnitus frequency on our laptop, we get some very short relief because the missing signal has been restored during a small amount of time.

It is just Ridder's own theory, it doesn't mean it is shared by every doctor who is involved in tinnitus research.

 

[star-affinity]

I tend to agree to this. The normal explanation model is
- Hair cells dies over a period of 6 months
- Brain starts to make phantom sounds because of loss of nerve input
- Because of the plasticity of the brain, the sound gets ingrained within 6-12 months

My belief is that tinnitus can stay inner ear -based for much longer. Hair cells keeps dying for a much longer time or only partly die. I think of it like a dense forest where you only cut out 50% of the trees. The trees remaining will be much more exposed to the coming storms...

It might also be that some of us are more likely to have damage in the outer hair cells. Their role is more of amplifying sound than signaling sounds to the brain.

The synapses connected to the hair cells tend to go first it seems:

Hidden Hearing Loss: The Effects of Synaptopathy



Which makes me wonder – if the classic audiogram detects hearing loss, can it be due to synaptopathy only or is the hair cells themselves broken? The synaptopathy otherwise often seem to be mentioned mostly when talking about in hidden hearing loss.

Really I don't like the "ingrained in the brain" thing about tinnitus. How disappointing if we one day – which doesn't seem unlikely when looking at the research and what drugs are in the pipeline – will be able to cure hearing loss, but the associated tinnitus remains.

I sure hope that isn't the case. But maybe we also know more about how tinnitus "works" when that time comes.

By the way, thanks a lot to @Hazel and everyone involved for the work on the interview – well done!

 

[serendipity1996]

The synapses connected to the hair cells tend to go first it seems:

Hidden Hearing Loss: The Effects of Synaptopathy

Which makes me wonder – if the classic audiogram detects hearing loss, can it be due to synaptopathy only or is the hair cells themselves broken? The synaptopathy otherwise often seem to be mentioned mostly when talking about in hidden hearing loss.

Really I don't like the "ingrained in the brain" thing about tinnitus. How disappointing if we one day – which doesn't seem unlikely when looking at the research and what drugs are in the pipeline – will be able to cure hearing loss, but the associated tinnitus remains.

I sure hope that isn't the case. But maybe we also know more about how tinnitus "works" when that time comes.

By the way, thanks a lot to @Hazel and everyone involved for the work on the interview – well done!

I think it's worth noting that last year the Hearing Health Foundation, one of the most prominent organisations in this space, published a post stating that curing noise-induced tinnitus "will first require curing hearing loss".

https://hearinghealthfoundation.org/blogs/tinnitus-and-noise-trauma-to-the-inner-ear

 

[Keith Handy]

Be happy, as you don´t have to live with this for another 30 years... People who are 17-18 and got tinnitus have to live with it for 60-70 years.

I can't believe you got away with writing something so profoundly thoughtless.

 

[kingsfan]

I do think there is something to psychedelics being part of a multi-part approach to curing tinnitus.

 

[MBH]

Some people have thought the problem lies solely in ears, and suggest fixing the ears.

From where I stand, that has not panned out.

My opinion is that we should go with the combination of brain and ears, finding where tinnitus originates in the brain first and then connect that to ears. Once they connect the dots there, then move on to a corrective measure.

 

[Peter Q]

To Massi91:
That isn't stupid at all.

I have had to devise various somersault, emergency survival mind games just in an attempt to cordon off the nightmarish intrusiveness of this.

I have even had to pull over and stop the car when I had a spike while driving; I have to hold my mind in an inert stillness (and shut off my chattering ego) to halt the tsunami of rage and panic that a spike induces.

@DaveFromChicago, I like your insightful descripton of "shut off my chattering ego". Perhaps a lot of tinnitus distress, and indeed mental/emotional distress in general, is a result of a too dominant ego.

 

[Massi91]

To Massi91:
That isn't stupid at all.

I have had to devise various somersault, emergency survival mind games just in an attempt to cordon off the nightmarish intrusiveness of this.

I have even had to pull over and stop the car when I had a spike while driving; I have to hold my mind in an inert stillness (and shut off my chattering ego) to halt the tsunami of rage and panic that a spike induces.

I have been there... the brain adapts over the years. Hopefully we get some kind of medical relief.

 

[Massi91]

If a person got the tinnitus in conjunction with hearing loss and curing the hearing loss won't remove the tinnitus; then I'm also worried that a cure will be difficult.

But I'm pretty confident we'll manage eventually anyway. If we look at the technical and bio-technical progress humanity has made in relatively short time I think the possibilities in the future are more or less endless.

Also, when involving AI the limits of the human brain is no more a limit.

I don´t think AI will be possible in our lifetime, not true AI at least. But that is still ways off... When the first working AI is completed, there will be severe limitations due to fear of governments. Until AI are able to work on these problems they will first work on other problems. As you see, apparently tinnitus is not that "bad" for society... They don´t know what it is like to live with tinnitus.

 

[BarryJ]

The Who were known as being the loudest band

I went to the 40th anniversary concert of Quadrophenia and they were still too loud. I wanted to shout "bloody 'ell Pete turn it down." I took an unnecessary restroom break.

 

[EDDTEKK]

Unbelievable that they still have no clue why tinnitus occurs. No clue about the cause, nor the mechanism in the brain. The theories and models seems to change every decade.

Dirk is honest but he also has no idea how to treat tinnitus. Like he said, no treatment so far has been able to target the loudness! All therapies target the distress or anxiety. But we need silence!

 

[star-affinity]

Unbelievable that they still have no clue why tinnitus occurs. No clue about the cause, nor the mechanism in the brain. The theories and models seems to change every decade.

Dirk is honest but he also has no idea how to treat tinnitus. Like he said, no treatment so far has been able to target the loudness! All therapies target the distress or anxiety. But we need silence!

What is the aim for OTO-313 then?

"No clue" also seems a bit harsh to say I think. It seems to be a complex problem, but that it many times gets triggered in conjunction with hearing loss is pretty certain, isn't it?

In my latest tinnitus case I could actually hear the onset happen in my left ear. From no perceived tinnitus (nor hearing loss) I heard a slow, warped "chirp" for a couple of seconds that immediately transformed into a high-pitched, slightly sizzling and sometimes oscillating hiss. I'm so curious what made that sound just before the tinnitus onset. Was it the synapses and/or hair cells freaking out and "disconnecting"?

I now have some hearing loss in that ear according to an audiogram and high-pitch frequencies in music such as high-hats and cymbals sounds more flat.

It's been said many times before, but I wonder so much what happens to the tinnitus if the hearing loss is cured. Seems like a good start at least, right?

 

[Peter Q]

I do think there is something to psychedelics being part of a multi-part approach to curing tinnitus.

@kingsfan, tinnitus can become a deeply ingrained part of one's psyche, so the use of psychedelics might indeed be useful in deconstructing and reconfiguring a tinnitus conditioned sense of self. Perhaps hypnosis might also be help with this.

 

[tommyd87]

Cool!

I will take a listen as soon as I can. I must say "get stuck in our brain" sounds really scary to me. I mean, how would you cure something that's stuck in your brain? But maybe my fear is unwarranted.

Also really curious what happens if you got tinnitus in conjunction with hearing loss – isn't it reasonable to think that curing the hearing loss would cure the tinnitus too? Would be nice if that could be verified somewhat soon...

Addendum:

OK, sorry I've been listening a bit now and I don't really see the logic in that if tinnitus in conjunction with hearing loss is an ear problem then "...the solution is easy – you wear a hearing aid and the tinnitus should improve, which unfortunately is not the case. Only 20% of the people who wear haring aids do get better."

If hearing aids work by increasing the volume on the frequencies where the hearing loss or hearing reduction is, it's one thing that this helps the brain hear those sounds better than without an hearing aid, but there's still some "cords" and/or "receptors" (i.e. synapses and hair cells) in the inner ear that used to be there that are missing or broken and as long as that's the case, is it so strange that the brain keeps "filling in" a phantom sound for those frequencies?

If those "cords" (nerve cells/synapses) and "receptors" (hair cells) are repaired, why shouldn't that also make the brain stop the phantom sound? Or is the theory that the brain (in the long run) starts ignoring that there's missing input that used to be there and creates the phantom sound anyway and therefore it doesn't matter if the synapses and hair cells are repaired or not?

I really wonder how we can make that conclusion before first seeing what happens if we repair the hearing loss, since I don't think hearing aids are a good enough replacement for the synapses and hair cells.

Just let me know if I'm totally clueless in my reasoning here and I'll stop.

The thing that has not been covered in his analysis relating to hearing aids and tinnitus relates to three key things I believe.

1. I agree with what you say about hearing aids and their effect on tinnitus. There are limitations to the amount of extra noises that can be provided from a hearing aid and as a result, while some people might only obtain a limited benefit from a hearing aid for their tinnitus, there's still the possibility that the tinnitus can be supressed with the use of one.

2. The thing that De Ridder doesn't examine in his research work is the reasons why hearing aids have not necessarily been assistive in helping with tinnitus and/or what assistance/benefit a hearing aid can provide to tinnitus.

The first thing is that a hearing aid can only provide assistance with additional sound and nothing else. Essentially this means that it can provide more stimulation from things like noise or speech around you and that is it. What a hearing aid actually at this stage cannot do is provide assistance with the synapse part of hearing loss. Looking at what the views of others on the causes of tinnitus might be and noting that synapse issues are seen to be one of the primary causes, it is theoretically going to mean that until you deal with synapses that the tinnitus won't get resolved.

Secondly the latest changes in hearing aid designs have had heaps of benefits when it comes to assisting things like tinnitus. The thing is in the past hearing aids have worked predominately to hear speech related sound and actually block out the noises around you. The new types have changed things to focus as much as the sound around and actually resulted in improvement with this and with tinnitus.

3. There was no talk of how people with hearing loss plus tinnitus on one side can have good chances of eliminating tinnitus through the use of a CI for example.

Essentially it seems that the theories he refers to when he claims that tinnitus tends to be stuck in the brain have been demonstrated to be not entirely accurate as a number of recent research realises the benefits of things like providing additional auditory stimulation/treating the hearing loss also.

 

[KMc24]

Cool!

I will take a listen as soon as I can. I must say "get stuck in our brain" sounds really scary to me. I mean, how would you cure something that's stuck in your brain? But maybe my fear is unwarranted.

Also really curious what happens if you got tinnitus in conjunction with hearing loss – isn't it reasonable to think that curing the hearing loss would cure the tinnitus too? Would be nice if that could be verified somewhat soon...

Addendum:

OK, sorry I've been listening a bit now and I don't really see the logic in that if tinnitus in conjunction with hearing loss is an ear problem then "...the solution is easy – you wear a hearing aid and the tinnitus should improve, which unfortunately is not the case. Only 20% of the people who wear haring aids do get better."

If hearing aids work by increasing the volume on the frequencies where the hearing loss or hearing reduction is, it's one thing that this helps the brain hear those sounds better than without an hearing aid, but there's still some "cords" and/or "receptors" (i.e. synapses and hair cells) in the inner ear that used to be there that are missing or broken and as long as that's the case, is it so strange that the brain keeps "filling in" a phantom sound for those frequencies?

If those "cords" (nerve cells/synapses) and "receptors" (hair cells) are repaired, why shouldn't that also make the brain stop the phantom sound? Or is the theory that the brain (in the long run) starts ignoring that there's missing input that used to be there and creates the phantom sound anyway and therefore it doesn't matter if the synapses and hair cells are repaired or not?

I really wonder how we can make that conclusion before first seeing what happens if we repair the hearing loss, since I don't think hearing aids are a good enough replacement for the synapses and hair cells.

Just let me know if I'm totally clueless in my reasoning here and I'll stop.

I wear hearing aids, and I sometimes wonder if they're just too limited in their range to pick up all of the frequencies I'm missing. Hearing aid technology has improved, but maybe as it improves more, it may have more of an impact on tinnitus?

 

[tommyd87]

I wear hearing aids, and I sometimes wonder if they're just too limited in their range to pick up all of the frequencies I'm missing. Hearing aid technology has improved, but maybe as it improves more, it may have more of an impact on tinnitus?

The Oticon More technology is pretty positive when it comes to dealing with tinnitus. It works in a manner which is completely different to other hearing aids.

Another thing is that hearing aids cannot assist with synaptic elements of hearing and if the research is correct that synapses and tinnitus are linked then the only way to fix this would be to repair the synapses.

 

[MBH]

I don't think of hearing aids as the cure, I think of it as a sound enrichment. It helps hearing, but not much with tinnitus.

When I first acquired tinnitus, all I read was suggestions to get hearing aids. So I looked into it and I went to 3 ear doctors and had 3 audiograms. All showed the same thing, no hearing loss. I couldn't get hearing aids and my tinnitus was loud. I really only wanted them for the masker.

So I found an ear doctor who would sell them to me. I was so happy to find him, but they were expensive $5000.00 and I paid it. I had classes to use them but only for the masker. I used them for a while but they simply did not help.

Also, that ear doctor told me tinnitus is in the brain.