"That Buzzing That Never Goes Away" — Article in The Times

[Ed209]

It could be a really good awareness video - I don't talk about my tinnitus because...

The problem here, Steve, is the very fact that people don't like to talk about it as you already pointed out. We would likely end up with a blank screen.

I don't like to talk about my tinnitus because... that's why I'm not in this video.

 

[JohnAdams]

A good video would include mention of regenerative technology and how it could lead to other cures for diseases.

 

[GregCA]

The thing about the shock value is that it makes an initial impact but it doesn't stick. I think you either have to have it or have experienced tinnitus to really get it.

I think there is variability in the results - see https://www.brandpoint.com/blog/what-is-shock-advertising/

You mentioned remembering the AIDS campaigns of the 80s. I remember too! The ones I remember were scary, and I do remember it having an impact on teens (since I was part of that social group at the time) in spite of being a group that doesn't generally "drink the cool aid" from grown up warnings.

Seems like it did stick with both of us!

 

[Starthrower]

It is so weird @Steve. After being in survivors of murder/suicide real time support groups I came to realize the similarity of suicide survivors and tinnitus sufferers. There is this element of shame, blame and guilt to both groups. And like you mentioned unless you have "experienced" either situation it is almost impossible to really "get" it.

I used to sort of look the other way when someone talked about losing someone to suicide. That was - until I experienced the loss up close and personal. "Normal" people going about their own lives... I used to be one of them so I get it.

The same with tinnitus sufferers.

So that shame, blame and guilt gets buried inside and with severe tinnitus... the person slowly backs out of normal day life things. They stop talking.

So better awareness may be a really good idea for such an awareness video.

 

[TuxedoCat]

This is false. Precisely because the mechanisms by which the brain uses to tune out tinnitus is the mechanism that research is trying to decipher. As long as there is a market for it, people will pay. As long as people are willing to pay, money for research will go there.

I'd like to explore this with you. Are you not talking about two different mechanisms here? Not everyone that experiences hearing loss has tinnitus. In that case, it's not because it's being tuned out, but because the brain has a gating mechanism for blocking transmission of the tinnitus signal to the portion of the brain where it is recognized as tinnitus. While it's true that the brain has a mechanism for ignoring distractions such as tinnitus, its not the same mechanism as the gating system. If it were, then everyone with hearing loss would also have tinnitus.

In your opinion, which of these mechanisms is the research trying to decipher? -TC

 

[kelpiemsp]

I'd like to explore this with you. Are you not talking about two different mechanisms here? Not everyone that experiences hearing loss has tinnitus. In that case, it's not because it's being tuned out, but because the brain has a gating mechanism for blocking transmission of the tinnitus signal to the portion of the brain where it is recognized as tinnitus. While it's true that the brain has a mechanism for ignoring distractions such as tinnitus, its not the same mechanism as the gating system. If it were, then everyone with hearing loss would also have tinnitus.

In your opinion, which of these mechanisms is the research trying to decipher? -TC

Hi @TuxedoCat thanks! Awesome question, maybe you can help me work it out. This is how I see it, but I'd love input:

I am talking about two different mechanisms. Because there is 1) a generation mechanism which I feel has two categories a) the maladaptive neuroplastic response and b) central gain (via immediate deprivation of normal stimulus) either of which can lead to tinnitus or hypersynchrony in the neurons and then you have a 2) gating mechanism which can a) do nothing b) dampen or c) stop the sound. I think this gating mechanism is probably the same pathway used by chronic pain, FWIW.

Signal timing as it has been explained to me works on that first mechanism and reduces the neuronal synchrony.

I think two mechanisms have to exist to deal with the paradox you stated.

Thoughts?

 

[Jazzer]

When I collapsed my jazz career I announced it on Facebook to several thousand people.

I described 'hell on earth' - continuous loud head noise, and completely wrecked hearing.

I pulled no punches.

 

[valeri]

Valeri my heart goes out to you. I know you suffer hugely but to carry this enormous weight for so long without relief, shows an incredible survival instinct.

I can only glimpse your frustration at nothing changing in a decade of intense suffering.

Thank you Bam!

Yes nearly a decade on and we haven't even moved away from "it's not the loudness but emotional reaction" crap let alone found treatment or god forbid cure!

I'm afraid we will be having the very same debate in 2028 if we are alive that is!

 

[Bam]

Thank you Bam!

Yes nearly a decade on and we haven't even moved away from "it's not the loudness but emotional reaction" crap let alone found treatment or god forbid cure!

I'm afraid we will be having the very same debate in 2028 if we are alive that is!

My chances of making it to 2028 are absolutely nil right now. Like a lot of us I got this 20 years too soon. If you have a family there's something to fight for, a reason to bury your head in the sand and pretend 'it could always be worse.'

This is only my personal opinion but for someone like me - and many others - there is nothing worse. Nothing.

As an experiment if you mention screaming chronic tinnitus someone without saying you have it, the reaction is always 'oh my God I would kill myself.' ... That says it all I'm afraid.

 

[PDodge]

My chances of making it to 2028 are absolutely nil right now. Like a lot of us I got this 20 years too soon. If you have a family there's something to fight for, a reason to bury your head in the sand and pretend 'it could always be worse.'

This is only my personal opinion but for someone like me - and many others - there is nothing worse. Nothing.

As an experiment if you mention screaming chronic tinnitus someone without saying you have it, the reaction is always 'oh my God I would kill myself.' ... That says it all I'm afraid.

I'm barely making it through tonight

 

[Bam]

I'm barely making it through tonight

Ditto. But the harsh reality is that we are beneath livestock in terms of humane treatment.

 

[uae96]

Lol, whatever awareness you guys try to raise, I bet you anything it's not gonna work with 90% of people, especially young adults.

Many of my family and friends have seen the suffering I go through with tinnitus and hyperacusis and they still go to weddings and parties without protection.

That's only for the noise, many people get tinnitus without noise trauma such as infections, jaw problems, out of the blue tinnitus, benzos withdrawal.

How will awareness affect these people? Stop wasting your time and money with tinnitus awareness and focus on yourself to get better.

 

[glynis]

I love the video @Markku did for Mental Health Awareness Week 2017.

I love the part about there being awareness for -
Don't text and drive
Use contraception
While there's no awareness about protecting our ears.

Please can you add it here @Markku?
The video is amazing, thank you for your brilliant talent putting it together.

love glynis

 

[Steve]

Lol, whatever awareness you guys try to raise, I bet you anything it's not gonna work with 90% of people, especially young adults.

Many of my family and friends have seen the suffering I go through with tinnitus and hyperacusis and they still go to weddings and parties without protection.

That's only for the noise, many people get tinnitus without noise trauma such as infections, jaw problems, out of the blue tinnitus, benzos withdrawal.

How will awareness affect these people? Stop wasting your time and money with tinnitus awareness and focus on yourself to get better.

And herein lies the absolute centre of the debate.

How do we best spend our time and (limited) resources? That's we as people with tinnitus, we as an organisation and patient advocacy platform, we as influencers to the policies of the representative charities.

We need to understand what is behind others with tinnitus and why the majority do not share. Speaking for myself I will freely talk about it to people but I wouldn't share things on social media (although I have withdrawn from social media in general because I got bored with the whole thing).

So that shame, blame and guilt gets buried inside and with severe tinnitus... the person slowly backs out of normal day life things. They stop talking.

So better awareness may be a really good idea for such an awareness video.

We're having the theme of isolation for the Tinnitus Week in February. This really fits into that.

We had some interesting findings from our survey around isolation but I think that we can also be harder hitting with the message when it comes to awareness. With this topic it's about finding the balance and not coating it with "get out more, you'll feel better".

Personal stories I feel are good at getting the message over.

 

[Steve]

Like a lot of us I got this 20 years too soon.

You should try having it when the only things you find in your searches are TRT and Neuromonics... There is an awful lot going on now, the problem is that it takes such a long time to see results and bring treatments to market.

 

[Bam]

You should try having it when the only things you find in your searches are TRT and Neuromonics... There is an awful lot going on now, the problem is that it takes such a long time to see results and bring treatments to market.

...especially when the jury is still out on what the hell is going on in our brains. I genuinely fear we're going to be like all the people who have gone before desperately hoping a cure is 2-3 years away and finding the goalposts keep moving further and further away. You need strong resolve to keep hoping while you're suffering with this.

 

[Greg Sacramento]

I would actually like to learn more about why people don't talk about their tinnitus.

Not sure myself, but maybe because most have mild or occasional tinnitus.

After my first onset of tinnitus & hyperacusis from ear syringing, I continued working for about 10 days until the truth of denial told me that I couldn't be in a loud place anymore.

During those last days of employment I told many that I developed tinnitus. Several said I have tinnitus too. Some of them said hold on, let me see if I can hear it. After a few seconds they would say there it is - a very low hum. Others would say once in a while at the end of a 13 shift I can hear a temporary low hum.

 

[david c]

My chances of making it to 2028 are absolutely nil right now. Like a lot of us I got this 20 years too soon. If you have a family there's something to fight for, a reason to bury your head in the sand and pretend 'it could always be worse.'

This is only my personal opinion but for someone like me - and many others - there is nothing worse. Nothing.

As an experiment if you mention screaming chronic tinnitus someone without saying you have it, the reaction is always 'oh my God I would kill myself.' ... That says it all I'm afraid.

I can certainly empathise with how you are feeling - I felt exactly the same a year after the first onset of tinnitus. What I would say is that habituation does slowly come of its own accord and although it doesn't stop being unpleasant the impact it has on your day to day life does normally reduce.

Sadly this route is all we have at the moment as I fear that a cure is very far off. Far too many people make far too much money out of tinnitus at the moment for them to allow real research funding for a cure to take place.

 

[Bam]

I can certainly empathise with how you are feeling - I felt exactly the same a year after the first onset of tinnitus. What I would say is that habituation does slowly come of its own accord and although it doesn't stop being unpleasant the impact it has on your day to day life does normally reduce.

Sadly this route is all we have at the moment as I fear that a cure is very far off. Far too many people make far too much money out of tinnitus at the moment for them to allow real research funding for a cure to take place.

Thanks David. Maybe I will adapt but unfortunately my life has unravelled too much. This was like a total KO for me mentally, spiritually, physically. Some of us are not equipped for the additional weight of tinnitus. Like people who live hand to mouth and if the fridge goes kaput they're financially done.

I know people saying 'help others' etc are trying to be constructive but everyone is different and I really feel deeply traumatised in a way that I just don't see being reflected in the literature.

I've said it before but if you're a solitary introspective person who previously enjoyed their own company this is an absolute curse.

 

[GregCA]

I would actually like to learn more about why people don't talk about their tinnitus.

I can think of a few of reasons:

1. You don't want to appear "broken" (you can be worried about the impact it can have on your life - professionally for example).
2. It hardly ever results in anything useful: a likely response is a list of things that you should be trying "have you tried meditation? what about a pill? oh I heard that some people can manage it with some devices you put in the ears..." - it can lead to frustration. In my case, some family members thought I just didn't want to get treated: it just seems too incredible that there would be nothing that can be done anywhere in the world by anyone.
3. Many people get uncomfortable once they realize there is nothing that can be done and that you are screwed: the conversation then just stops awkwardly.
4. You get the occasional "oh yeah I've had this for years, it's no big deal! you'll see you get used to it!" - I've run into people telling me that, and I then asked them "do you hear it right now?" after which they had to pause to "search for it". If they need to search for it to find it, they don't have what I have, so their recommendations - while coming from a good place - feels patronizing.
5. You are told not to talk about it to get better, sometimes by professionals, sometimes by non-accredited yet well meaning internet folks:

1- STOP talking about tinnitus, measuring it, comparing it, describing it, and thinking about it.

These are a few reasons that come to mind. I'm sure there are more.

 

[valeri]

My chances of making it to 2028 are absolutely nil right now. Like a lot of us I got this 20 years too soon. If you have a family there's something to fight for, a reason to bury your head in the sand and pretend 'it could always be worse.'

This is only my personal opinion but for someone like me - and many others - there is nothing worse. Nothing.

As an experiment if you mention screaming chronic tinnitus someone without saying you have it, the reaction is always 'oh my God I would kill myself.' ... That says it all I'm afraid.

I hear you Bam and agree with you!

Most days I'm in a complete disbelief that something like this is even possible!
It never ever stops! It never gets tired or worn out!
How can this be?
I dread every day because I know it's just another f....g day filled with noise.

I'm 45 years old and my life has gone from "before" to "after" much like Florida before and after hurricane!
And I'm stuck in "after" just because of my family but I can tell you that the life I once knew and had is gone. For my family too!

I'm not one of those people who will fall for self imposed convince that things can get worse (I've lost everything that ment something to me on a deeper more personal level so not sure worse is possible) but I find some peace in knowing that I'm not alone.

I think of many Tinnitus Talk people my age or younger and I know that their lives are not the same either, I know they lost much to this crap and had to make adjustments!

Some may live for family, some for a dog or cat.... whatever floats their boat but they keep me going.

So yes, my life sucks big time and I agree that for me too there's nothing worse! NOTHING... but we are still here and talking to each other which, for the time being, is our new EVERYTHING!

 

[TuxedoCat]

Because there is 1) a generation mechanism which I feel has two categories a) the maladaptive neuroplastic response and b) central gain (via immediate deprivation of normal stimulus) either of which can lead to tinnitus or hypersynchrony in the neurons and then you have a 2) gating mechanism which can a) do nothing b) dampen or c) stop the sound.
Signal timing as it has been explained to me works on that first mechanism and reduces the neuronal synchrony.

Hi @kelpiemsp

I think we are close to being on the same page. I listened to Prof Rauschecker's TED talk and note his model of tinnitus below. It's very similar to what you have laid out, but a little more detailed in terms of location in the brain where the mechanisms are taking place. The only thing is that Rauschecker does not address the role of the dorsal cochlear nucleus and I believe that is the target area of Susan Shore's work, MuteButton and also the site of action of benzodiazepines.

According to Rauschecker, the phantom sound of tinnitus depends on 3 factors-

1) A Peripheral Auditory Lesion- Damaged hair cells lead to deafferentation or loss of information about corresponding sound frequencies flowing into the auditory cortex of the brain. This results in gaps in the tonographic map of the auditory cortex.

2) Central Auditory Reorganization- Lesion induced plasticity occurs in the auditory cortex. The brain fills in the gaps in the tonographic map with neurons that normally generate the frequencies to the left or right of the gap. In tinnitus patients fMRI shows hyperactivity (hypersynchrony) in the auditory cortex compared to controls.

3) A Non-Auditory Gating system that is located in the Limbic System within the brain- The Nucleus Accumbens (NAc) and the ventromedial Prefrontal Cortex (vmPFC) together form an internal noise cancellation or gating system. If the gating system is working, there will be no perception of tinnitus. The NAc is a small center in the brain that regulates emotions, it is very hyperactive in fMRI of tinnitus patients. The vmPFC regulates volume or gain in the system. The NAc tells vmPFC to turn gain up or down. The MRIs of tinnitus patients show a decrease in volume in the vmPFC compared to controls.

Rauschecker is now wanting to investigate the utility of a non-human primate model for tinnitus with particular emphasis on vmPFC.

Also, the suggestion has been made that things like CBT and Mindfulness induce neural plasticity. It's really difficult for me to imagine that you can think your way to undoing lesion induced plasticity in the auditory cortex associated with tinnitus. -TC

 

[cspc]

Desperation? The same way people never do the exercises their physio therapist gives them

It's not desperation. Tinnitus and Posture change day by day.

You do the exercises and the mindfulness, it works well for some weeks if you do them everyday and you are careful to maintain a good posture as it is to maintain an environment with as less loud noise as possible.

You cross your legs for more than five minutes in a day. you hunch over your pc for 5 minutes, you hear a loud noise for 5 minutes.

And all those without being fully aware of what happened and then you get worse in posture and in tinnitus.

It is just a correlation example, I don't imply that tinnitus comes from posture issues but you can drop the tinnitus volume by half with physio exercises, correct posture and chiro posture adjustments.

 

[kelpiemsp]

Also, the suggestion has been made that things like CBT and Mindfulness induce neural plasticity. It's really difficult for me to imagine that you can think your way to undoing lesion induced plasticity in the auditory cortex associated with tinnitus. -TC

@TuxedoCat This is what is so exciting about neural plasticity! We are learning this is absolutely the case. Check out the work of Michael Merzenich if you'd like to learn more.

 

[TuxedoCat]

@TuxedoCat This is what is so exciting about neural plasticity! We are learning this is absolutely the case. Check out the work of Michael Merzenich if you'd like to learn more.

Googled Michael Merzenich, and am reading what turned up and will also listen to his TED talk. He also has a paper on tinnitus which I'll try to obtain through the university library near me. Working on it! Thanks, TC

 

[annV]

He also has a paper on tinnitus which I'll try to obtain through the university library near me.

I got the paper from my sources.

 

[kelpiemsp]

Googled Michael Merzenich, and am reading what turned up and will also listen to his TED talk. He also has a paper on tinnitus which I'll try to obtain through the university library near me. Working on it! Thanks, TC

Awesome! I am just digesting this work myself. I am not 100% confident in my interpretation. I have a few friends that are neuroscientists and they gave me a very classified "yes...but... there is more to it." And "let's talk when you have read everything." So, I'm aware I have a significant blind spot. But hopefully we can glean some insight for the tinnitus community.