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

[tommyd87]

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.

It is a problem regarding tinnitus and using hearing aids when related to no hearing loss on an audiogram.

As a rule I cannot see how tinnitus is completely in the brain as some doctors claim that it is when the evidence doesn't conclusively support this at all.

 

[MBH]

@tommyd87 - my point is doctors would not give me hearing aids with no hearing loss, but there are hearing aids w/ maskers for tinnitus and they would not sell me them either. But I found a doctor that would. I think they could help people with tinnitus. I was not using hearing aids for hearing loss, I only want the masker function.

I don't think tinnitus is solely in the ear. I think it is 70/30 with 70% being in the brain. And when they can pinpoint the location, then they can travel to the ear and fix both. My tinnitus is stress related.

 

[kingsfan]

In layman's terms, because I'm no scientist or medical professional, I think De Ridder is saying that it starts in the ear but certain people lack the ability to turn off the brain's probing for that missing frequency. His research is showing certain areas of the brain lighting up for people with tinnitus vs people without it. There could possibly be many others out there with synapse damage and no tinnitus because their brains are not susceptible to being caught in this infinite loop of constantly filling in those missing frequencies because their brains simply do not care that that information is not missing.

I know I had a definite wow moment when he was describing the type of personality traits of someone susceptible to tinnitus. He described me almost perfectly.

 

[Forever hopeful]

I didn't watch the video but how do we explain the cessation of tinnitus?

I developed tinnitus in 2015 after a loud concert. Two years later it was gone. Three years later I had some mild hearing loss in my left ear and it came back as an seashell like echo. A year later I had additional minor loss in that ear and it changed to an annoying pure tone ring. Most annoying sound from my perspective. Give me back the echo.

The otologist told me I had a damaged left ear, that my hearing would fluctuate and he had no real idea of the cause as had not had any noise trauma. After a 3 week course of steroids my hearing improved on audiogram and my tinnitus resolved. I was tinnitus free in that ear for four months.

Then I noticed this past week that it is creeping back ever so quietly. I suspect I have had another minor shift in my hearing. But all this to say, there are many examples where people have developed tinnitus that has ultimately resolved. Maybe for the long term, maybe not. And not all tinnitus is related to hearing loss. At least not measurable hearing loss. It is obvious that tinnitus is multifactorial. According to my otologist it is very difficult to determine the etiology in absentia of known SNHL b/c over 200 things cause tinnitus.

So maybe it isn't always ingrained in your brain. I would like to think that the brain has a way of learning to ignore it. Otherwise I feel like we're all doomed. Particularly since you lose 1/2% of your hair cells every year you age.

 

[kingsfan]

I didn't watch the video but how do we explain the cessation of tinnitus?

I developed tinnitus in 2015 after a loud concert. Two years later it was gone. Three years later I had some mild hearing loss in my left ear and it came back as an seashell like echo. A year later I had additional minor loss in that ear and it changed to an annoying pure tone ring. Most annoying sound from my perspective. Give me back the echo.

The otologist told me I had a damaged left ear, that my hearing would fluctuate and he had no real idea of the cause as had not had any noise trauma. After a 3 week course of steroids my hearing improved on audiogram and my tinnitus resolved. I was tinnitus free in that ear for four months.

Then I noticed this past week that it is creeping back ever so quietly. I suspect I have had another minor shift in my hearing. But all this to say, there are many examples where people have developed tinnitus that has ultimately resolved. Maybe for the long term, maybe not. And not all tinnitus is related to hearing loss. At least not measurable hearing loss. It is obvious that tinnitus is multifactorial. According to my otologist it is very difficult to determine the etiology in absentia of known SNHL b/c over 200 things cause tinnitus.

So maybe it isn't always ingrained in your brain. I would like to think that the brain has a way of learning to ignore it. Otherwise I feel like we're all doomed. Particularly since you lose 1/2% of your hair cells every year you age.

Dr. De Ridder said something along the lines of, if the brain doesn't care about the missing audio information it won't try and fill it in with what it thinks is missing. So it's possible you stopped worrying about your tinnitus and, therefore, stopped filling in the missing frequencies before it became an ingrained part of your "self."

I hope that wasn't too terrible of an explanation.

 

[Forever hopeful]

I hope that wasn't too terrible of an explanation.

Not at all. Thanks.

 

[SD7]

If the brain would just lose that frequency and ignore it, none of us would be here, or even better, if the hair cells could just heal like every other animal.

What an absolutely dumb malfunction.

 

[Toney]

All this seems to confirm a theory that some wires are crossed and shorted in the brain and that is the cause of tinnitus. I bet that tinnitus could be cured by neuromodulation in addition to one of those drugs that allows the reshuffling of thoughts in the brain, like psychedelics or Ketamine derivatives. I'm surprised a multi-pronged approach isn't being performed yet. Perhaps that is what prevents people from getting success from the neuromodulation, their brain isn't able to reform, or at least they don't have the right amount of neuroplasticity left.

Who knows! Any research is good research.

 

[Hidde]

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.

What do you mean by 'CI'?

 

[Hidde]

I didn't watch the video but how do we explain the cessation of tinnitus?

I developed tinnitus in 2015 after a loud concert. Two years later it was gone. Three years later I had some mild hearing loss in my left ear and it came back as an seashell like echo. A year later I had additional minor loss in that ear and it changed to an annoying pure tone ring. Most annoying sound from my perspective. Give me back the echo.

The otologist told me I had a damaged left ear, that my hearing would fluctuate and he had no real idea of the cause as had not had any noise trauma. After a 3 week course of steroids my hearing improved on audiogram and my tinnitus resolved. I was tinnitus free in that ear for four months.

Then I noticed this past week that it is creeping back ever so quietly. I suspect I have had another minor shift in my hearing. But all this to say, there are many examples where people have developed tinnitus that has ultimately resolved. Maybe for the long term, maybe not. And not all tinnitus is related to hearing loss. At least not measurable hearing loss. It is obvious that tinnitus is multifactorial. According to my otologist it is very difficult to determine the etiology in absentia of known SNHL b/c over 200 things cause tinnitus.

So maybe it isn't always ingrained in your brain. I would like to think that the brain has a way of learning to ignore it. Otherwise I feel like we're all doomed. Particularly since you lose 1/2% of your hair cells every year you age.

Excuse me if I misunderstand, but you developed hearing loss after a concert as well as tinnitus, then had it for two years before it completely disappearef for a while? So after two years of tinnitus all of a sudden you heard silence again? That's absolutely insane, I can't imagine.

 

[tommyd87]

What do you mean by 'CI'?

Cochlear Implants.

 

[Forever hopeful]

Excuse me if I misunderstand, but you developed hearing loss after a concert as well as tinnitus, then had it for two years before it completely disappearef for a while? So after two years of tinnitus all of a sudden you heard silence again? That's absolutely insane, I can't imagine.

You did not misunderstand. Yes, it went away. For about 3 years.

And then I got it again in my left ear only for a year and that went away too. And at that time I had mild hearing loss, which I did not have following the concert.

 

[Gb3]

I've heard numerous examples of people who have been fitted with cochlear implants that have greatly reduced or completely eliminated tinnitus while the device is activated. This probably only works for people whose tinnitus is from hearing loss.

This is a clear example that most likely tinnitus is a reaction of the brain to auditory deprivation and once that sound is restored the tinnitus can fade away and there is no reason for the brain to react that way.

So once again if you treat the underlying cause i.e. hearing loss, you can alleviate the symptom.

 

[Matchbox]

You did not misunderstand. Yes, it went away. For about 3 years.

And then I got it again in my left ear only for a year and that went away too. And at that time I had mild hearing loss, which I did not have following the concert.

I'm assuming your noise induced tinnitus was high pitched ringing or only static (back then)?

 

[Forever hopeful]

I'm assuming your noise induced tinnitus was high pitched ringing or only static (back then)?

It changed a lot. Started out as a pure tone ring. Not particularly high pitched at all. Very easily masked by mid frequency noise as opposed to it being so pitched that you hear it over everything. Then it sort of turned into a light saber noise in my head. Then it was gone.

When I had hearing loss in my left ear in early 2020, it sounded like an echo. Like a seashell. Then 10 months later it turned into a pure tone ring, as I had some additional loss but very mild. It was like a dial tone which was the worst in my experience, but it was mid frequency so I could mask it ok. It went away after about 3 months.

 

[Rb86]

It changed a lot. Started out as a pure tone ring. Not particularly high pitched at all. Very easily masked by mid frequency noise as opposed to it being so pitched that you hear it over everything. Then it sort of turned into a light saber noise in my head. Then it was gone.

When I had hearing loss in my left ear in early 2020, it sounded like an echo. Like a seashell. Then 10 months later it turned into a pure tone ring, as I had some additional loss but very mild. It was like a dial tone which was the worst in my experience, but it was mid frequency so I could mask it ok. It went away after about 3 months.

Echo and seashell sounds a lot like ETD. I think I've read if that's the case it goes away when you lean forward with your head down by your knees, helping it close up?

 

[Forever hopeful]

Echo and seashell sounds a lot like ETD. I think I've read if that's the case it goes away when you lean forward with your head down by your knees, helping it close up?

Nothing changed the sound. I mean it changed on its own after about 10 months or so and then went away three months or so later, but I couldn't do anything to modulate it. And it never spiked or changed volume. Nothing I did impacted it. It was just a steady sound all the time. I wouldn't however, be surprised if there was some ETD involved. I have perpetual allergic rhinitis. I'm always stuffed. My ears are always full. I just re-introduced myself to my friend Flonase.

 

[Hidde]

Echo and seashell sounds a lot like ETD. I think I've read if that's the case it goes away when you lean forward with your head down by your knees, helping it close up?

What is ETD?

 

[Hidde]

Nothing changed the sound. I mean it changed on its own after about 10 months or so and then went away three months or so later, but I couldn't do anything to modulate it. And it never spiked or changed volume. Nothing I did impacted it. It was just a steady sound all the time. I wouldn't however, be surprised if there was some ETD involved. I have perpetual allergic rhinitis. I'm always stuffed. My ears are always full. I just re-introduced myself to my friend Flonase.

I wonder if you have a unique variation somewhere in any of the systems in your body that makes you one of a kind in the way that you can recover from something that almost no one is able to recover from. Maybe you can tell your story to Dirk de Ridder. You can email him. I'm sure he'd be very interested. I sincerely hope you do this. Wish you the best!

 

[Forever hopeful]

I wonder if you have a unique variation somewhere in any of the systems in your body that makes you one of a kind in the way that you can recover from something that almost no one is able to recover from. Maybe you can tell your story to Dirk de Ridder. You can email him. I'm sure he'd be very interested. I sincerely hope you do this. Wish you the best!

Who is Dirk de Ridder? I don't really know anything about him.

I have had both ENT and otologists tell me that it can go away or it doesn't go away.

I would argue that there are definitely people who used to be on the site that probably no longer experience tinnitus or are so habituated that they never even hear it anymore and therefore they're not on the site anymore. I was off the site for over three years. Until I had some hearing loss and the tinnitus came back in the left ear - now resolved.

 

[Greg Sacramento]

I believe that tinnitus is due to ear malfunctions and physical pathways. That parts of the brain are just not happy with this.

 

[Rb86]

What is ETD?

Eustachian Tube Dysfunction.

 

[CDNThailand]

A lot of people have reactive tinnitus and listening to an hour's podcast is not an option. Do you have a text transcript of this?

I mean... I MUST be mistaken here?

Please share the link to text file (I certainly hope there is one!)?

 

[Hazel]

A lot of people have reactive tinnitus and listening to an hour's podcast is not an option. Do you have a text transcript of this?

I mean... I MUST be mistaken here?

Please share the link to text file (I certainly hope there is one!)?

Of course we have thought of this! In fact, we mentioned the transcript twice in our first post:

(incl. timestamps and transcript)

transcript created by @Andrea Rings

We have transcribed every one of our 17 episodes so far. Most of this work was done by @Liz Windsor and @Andrea Rings — in total, we estimate about 300 hours of volunteer work!

It does sadden me a bit that you take this tone with us. You seem to assume that we don't understand the difficulties some people in this community face listening to audio and that we did not bother with a transcript; yet you did not take the time to check properly or even just ask us in a kind manner. Sorry, but I just have to say this, because it's quite upsetting to get such comments when you are spending most of your free time volunteering for the benefit of this community

Anyway, you can find all our transcripts by clicking the "CC" button to the right hand side of the player:

Or scroll down on the podcast page and there's a direct link to the PDF:

I think we've left enough clues, what do you say?

 

[Ed209]

Of course we have thought of this! In fact, we mentioned the transcript twice in our first post:

We have transcribed every one of our 17 episodes so far. Most of this work was done by @Liz Windsor and @Andrea Rings — in total, we estimate about 300 hours of volunteer work!

It does sadden me a bit that you take this tone with us. You seem to assume that we don't understand the difficulties some people in this community face listening to audio and that we did not bother with a transcript; yet you did not take the time to check properly or even just ask us in a kind manner. Sorry, but I just have to say this, because it's quite upsetting to get such comments when you are spending most of your free time volunteering for the benefit of this community

Anyway, you can find all our transcripts by clicking the "CC" button to the right hand side of the player:

View attachment 47729

Or scroll down on the podcast page and there's a direct link to the PDF:

View attachment 47728

I think we've left enough clues, what do you say?

You mean there's a transcript!!? Who knew!

 

[IntotheBlue03]

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, this is my question especially for those of us whose tinnitus started in our brain or centrally. Are we doomed to only treat with the Dr. Schulman protocol?

I'd seen posts like this in the past about this kind of tinnitus being permanent but not any data.

 

[IntotheBlue03]

Gotta say after reading the transcript this is pretty depressing. There goes that 5-10 year tagline completely dependent on massive factors that I don't see realistically coming together like collaboration and massive funding.

Here's to hoping he's wrong about Dr. Shore since it seems he overlapped her work with Lenire quite a bit.

 

[HeavyMantra]

If the brain would just lose that frequency and ignore it, none of us would be here, or even better, if the hair cells could just heal like every other animal.

What an absolutely dumb malfunction.

I don't think any mammals have the ability to regenerate hair cells, but birds and fish do.