MuteButton

[hans799]

In musician circles I think it's considered par for the course.

Just... how. For many of us tinnitus is a curse, the bane of our existence. And there exists a whole profession where people just accept it as a "cost of doing business" and just do their thing, knowing that they'll probably pay with a never-ending bleep in their head? I can't wrap my mind around this.

... Sorry, totally offtopic for MuteButton.

Something a bit more on topic: My gut tells me that we can expect another info drop during Tinnitus Week. At the very least, leaks about the study from the talk that was linked earlier; at best, a product release date, or maybe even the product release itself. Looking forward to it!

 

[Paulmanlike]

In musician circles I think it's considered par for the course.

Liam Gallagher says you're not a proper rock n roll star if you haven't got tinnitus, but I'm not a rock star Liam Gallagher, I'm just a sufferer.

 

[Paulmanlike]

Just... how. For many of us tinnitus is a curse, the bane of our existence. And there exists a whole profession where people just accept it as a "cost of doing business" and just do their thing, knowing that they'll probably pay with a never-ending bleep in their head? I can't wrap my mind around this.

... Sorry, totally offtopic for MuteButton.

Something a bit more on topic: My gut tells me that we can expect another info drop during Tinnitus Week. At the very least, leaks about the study from the talk that was linked earlier; at best, a product release date, or maybe even the product release itself. Looking forward to it!

I hope so @hans799. It's about time tinnitus sufferers got a semi decent treatment after years of neglect by the medical business.

I do wonder though where @Michael Leigh is going to go if it works for the majority, where will he practise the gospel 1980's Jastreboff TRT shite to the newcomers?

 

[Jazzer]

Liam Gallagher says you're not a proper rock n roll star if you haven't got tinnitus, but I'm not a rock star Liam Gallagher, I'm just a sufferer.

This post is irrelevant.
Liam Gallagher is from a sub species.

(Mind you - I've heard it said that he speaks highly of me.....etc....)

 

[linearb]

I don't mean this to sound harsh, but there speaks someone who has NO idea of how unreliable early reports in the medical literature often are.

Oh, I'm not disputing that at all, but I see that as supporting my argument. I guess for me as a layman the hierarchy is something like

* individual case reports from individuals reported anonymously online
* individual case reports about individuals in medical literature
* published studies with few citations, no control group, no randomization
* low-quality RCTs
* higher-quality RCTs
* quality RCTs (large sample) which replicate the findings of earlier RCTs
* quality RCTs which replicate the findings and have longitudinal followup
* meta-analysis of a large number of quality RCTs which include longitudinal followup

I'm happy to cop that the entire top half of this list is varying degrees of garbage, but I'll still give some random weird thing in the American Journal of Audiology more gravity than a random self-report anecdote (and people should absolutely express the same level of cynicism and skepticism about what I've said about my experiences with the Shore device).

 

[Agrajag364]

Oh, I'm not disputing that at all, but I see that as supporting my argument. I guess for me as a layman the hierarchy is something like

* individual case reports from individuals reported anonymously online
* individual case reports about individuals in medical literature
* published studies with few citations, no control group, no randomization
* low-quality RCTs
* higher-quality RCTs
* quality RCTs (large sample) which replicate the findings of earlier RCTs
* quality RCTs which replicate the findings and have longitudinal followup
* meta-analysis of a large number of quality RCTs which include longitudinal followup

I'm happy to cop that the entire top half of this list is varying degrees of garbage, but I'll still give some random weird thing in the American Journal of Audiology more gravity than a random self-report anecdote (and people should absolutely express the same level of cynicism and skepticism about what I've said about my experiences with the Shore device).

I worked in academia. Love science. That's what I thought til I saw the shit in clinical trials up close. An RCT is fabulous in theory til you realise many aren't capturing adverse outcomes, are outcome switching etc.

 

[Agrajag364]

Errr. Let me think... oh yeah the medical industry blaming it all on depression and the BTA and ATA depicting it online as something anyone can overcome with positivity.

If a celebrity admitted they were suicidal and tortured by tinnitus they would be lambasted as pathetic and out of touch with the awful daily struggles of people with more 'serious' problems which in reality are small fry bullshit compared to this daily hell.

But nobody in the real world knows this because the gatekeepers of tinnitus don't admit it. It's like some hellish underground club where you only get to see the true extent of the nightmare when you've passed through the door... and then it's too late to leave. You're locked in forever and while you scream to be let out you've got good old David from the BTA behind the bar and Chris Martin dancing around like a fool and that woman who heads up the ATA snogging William Shatner on the dance floor and all of them are telling you to relax and have a good time and it's not so bad. And all you want to do is headbutt them and fuck off home and go to bed and get some sleep and this nightmare to end.

How do we get you on TV? Man if you had a YouTube channel called tinnitus is a bag of shit it would go viral. You could wear a balaclava or something.

 

[annV]

How do we get you on TV? Man if you had a YouTube channel called tinnitus is a bag of shit it would go viral. You could wear a balaclava or something.

He is sadly too afraid to show his face and talk about it on video. Bam would make headlines if he started YouTube channel!

 

[Ramòn]

Does anyone know the difference between the old MuteButton and the new MuteButton? Both have the headphones and the electrodes on the tongue, so what has changed?

Thanks.

 

[GlennS]

And there exists a whole profession where people just accept it as a "cost of doing business" and just do their thing, knowing that they'll probably pay with a never-ending bleep in their head? I can't wrap my mind around this.

As opposed to... what, exactly? Acceptance isn't the same thing as giving up on life. It's about trying not to consume every waking moment thinking about tinnitus, treating it like this monkey on your back with the fight or flight syndrome raging. That fixation is what sucks your life away. We can't snap our fingers and produce a cure and celebrities can't either.

In the meantime, it requires developing various coping mechanisms to get by.

As much as people here ridicule masking/habituation/CBT type treatments, we all apply them to some degree or another just as a basic survival tactic.

Those who don't are the ones who commit suicide.

 

[PDodge]

I hope we can get some news soon woooyeeee

 

[Gman]

I often wonder how many musicians who have committed suicide do it because of tinnitus, either directly or as a result of killing themselves through taking loads of drugs/booze to self medicate. Think of all those big name ones who were famous before musicians ear plugs were around. I think the number would be pretty high, but it is only rarely that tinnitus is actually said to be the reason. But I bet many big musicians right now would be quietly getting a hold of this device via back channels to ease their suffering.

 

[PDodge]

I often wonder how many musicians who have committed suicide do it because of tinnitus, either directly or as a result of killing themselves through taking loads of drugs/booze to self medicate. Think of all those big name ones who were famous before musicians ear plugs were around. I think the number would be pretty high, but it is only rarely that tinnitus is actually said to be the reason. But I bet many big musicians right now would be quietly getting a hold of this device via back channels to ease their suffering.

Probably a lot. I played loud music for 10 years, now times that by 2 or 3?

 

[hans799]

either directly or as a result of killing themselves through taking loads of drugs/booze to self medicate

The number of high-profile musicians having alcohol/benzo issues suddenly makes a lot more sense. Yes, they party. But could it be also the little fact that alcohol attenuates tinnitus in many people, or at least makes it possible to sleep?...

 

[Agrajag364]

I often wonder how many musicians who have committed suicide do it because of tinnitus, either directly or as a result of killing themselves through taking loads of drugs/booze to self medicate. Think of all those big name ones who were famous before musicians ear plugs were around. I think the number would be pretty high, but it is only rarely that tinnitus is actually said to be the reason. But I bet many big musicians right now would be quietly getting a hold of this device via back channels to ease their suffering.

Totally agree. I believe there was some study that concluded that physical health problems were a much bigger factor in suicides that was thought, like a high percentage of suicides are in people struggling with a physical health problem. Of course physical and mental health feed into each other.

 

[Bam]

I often wonder how many musicians who have committed suicide do it because of tinnitus, either directly or as a result of killing themselves through taking loads of drugs/booze to self medicate. Think of all those big name ones who were famous before musicians ear plugs were around. I think the number would be pretty high, but it is only rarely that tinnitus is actually said to be the reason. But I bet many big musicians right now would be quietly getting a hold of this device via back channels to ease their suffering.

Chris Cornell?? Chester Bennington?? Avicii?? If one of these guys didn't have severe tinnitus that hugely contributed to their ending their lives I would be amazed.

Cover up folks. The governments of the world don't want to even acknowledge this vicious curse and the families of famous rock stars don't want the shame of their hanging themselves due to a 'minor symptom' of fucked ears... Not very rock and roll.

 

[Fabrikat]

Chris Cornell?? Chester Bennington?? Avicii??

Not arguing with you're viewpoint @Bam, but I believe Avicii was struggling with the symptoms of pancreatitis as a result of a predisposition to the effects of heavy alcohol consumption. In its chronic phases a miserable disease which like tinnitus, has no treatment or cure. Nevertheless demonstrating that a physical condition can drive one to seek their ultimate demise.

As for Chris and Chester, who knows, you may be right.

 

[linearb]

I worked in academia. Love science. That's what I thought til I saw the shit in clinical trials up close. An RCT is fabulous in theory til you realise many aren't capturing adverse outcomes, are outcome switching etc.

The fact that a lot of profit-driven orgs are willfully performing bad science doesn't mean that the idea itself is unsound... nor does it suggest any better alternatives at this point in time in 2019 the year of our lord.

Everything is biased, always, and yet progress marches on.

 

[GlennS]

The governments of the world don't want to even acknowledge this vicious curse

Government has nothing to do with any of this. I really think you're wasting a lot of energy on this blame-game kick you're on.

 

[Agrajag364]

The fact that a lot of profit-driven orgs are willfully performing bad science doesn't mean that the idea itself is unsound... nor does it suggest any better alternatives at this point in time in 2019 the year of our lord.

Everything is biased, always, and yet progress marches on.

Of course the idea of science is sound!!! Nowhere did I suggest it was not. I am saying commercially driven bad practice is so widespread than medical studies on AVERAGE have become somewhat unreliable, sometimes even seemingly well designed RCTs with long follow up. Science is all we really have and maybe one day that will change but we are where we are. It's at the point where I, for one, have learnt to place a surprising value on direct patient testimony over the years. I'm not saying I'd try apple cider vinegar or some random drug because a Tinnitus Talk poster said it helped. It's more like-whatever results that TENT-A2 trial publishing, I ain't trying this MuteButton thing til there are multiple positive accounts online from various sources and very few worsenings.

 

[linearb]

Of course the idea of science is sound!!! Nowhere did I suggest it was not. I am saying commercially driven bad practice is so widespread than medical studies on AVERAGE have become somewhat unreliable, sometimes even seemingly well designed RCTs with long follow up. Science is all we really have and maybe one day that will change but we are where we are. It's at the point where I, for one, have learnt to place a surprising value on direct patient testimony over the years. I'm not saying I'd try apple cider vinegar or some random drug because a Tinnitus Talk poster said it helped. It's more like whatever results that TENT-A2 trial publishing, I ain't trying this MuteButton thing til there are multiple positive accounts online from various sources and very few worsenings

Yes, this is true, and fairly depressing. This is why I get so angry when I read stuff like sciencebasedmedicine.org -- they have a lot of good ideas, but they cannot see the elephant in the room which is that the whole model is broken and nothing is really "science based".

 

[GlennS]

Just be careful you don't go too far down that rabbit hole because that's why things like measles are coming back. Society as we know it can't function without a minimum amount of trust in the system.

 

[Bam]

Government has nothing to do with any of this. I really think you're wasting a lot of energy on this blame-game kick you're on.

Yeah I just go off the phone to the NHS boss and he's had a meeting with the health secretary and they've decided to stop pretending tinnitus is a minor annoyance and spend 4 billion quid they don't have on buying MuteButtons for 10% of the population of the U.K. And if that fails they're going to front up another 5 billion for a drug cure....... And then they're gonna wake up and remind themselves it's probably better to just spend fuck all and keep covering up how life destroying it can be.

 

[Bam]

Oh and @GlennS maybe remember that I'm just a decent guy who has never hurt or bothered anyone and simply wants to go back to walking his dog in peace and sleeping soundly at night. I'm not on any kick at all my friend.

 

[Agrajag364]

Yeah I just go off the phone to the NHS boss and he's had a meeting with the health secretary and they've decided to stop pretending tinnitus is a minor annoyance and spend 4 billion quid they don't have on buying MuteButtons for 10% of the population of the U.K. And if that fails they're going to front up another 5 billion for a drug cure....... And then they're gonna wake up and remind themselves it's probably better to just spend fuck all and keep covering up how life destroying it can be.

To be fair @Bam there are literally 100s of horrible medical problems that are lacking adequate treatments and where the patients are treated badly. Don't underestimate how many horrible things are out there.

 

[threefirefour]

Chris Cornell?? Chester Bennington?? Avicii?? If one of these guys didn't have severe tinnitus that hugely contributed to their ending their lives I would be amazed.

Cover up folks. The governments of the world don't want to even acknowledge this vicious curse and the families of famous rock stars don't want the shame of their hanging themselves due to a 'minor symptom' of fucked ears... Not very rock and roll.

In his last days, one of Chris Cornell's family recalled how he was upset that he "couldn't stop the ringing" IIRC.

 

[_Patrick_]

Guys I feel like we're going off topic again, maybe we should go back on track...

 

[Agrajag364]

Just be careful you don't go too far down that rabbit hole because that's why things like measles are coming back. Society as we know it can't function without a minimum amount of trust in the system.

Deleted my reply as too long for thread on MuteButton but whilst you're right don't forget MMR scandal itself resulted from a poor quality paper with an author with financial conflicts of interests. Listen to Ben Goldacre on criticising problems in medical science vs MMR on Radio 4's recent "Trust me, I'm a scientist" programme. He gets it spot on.

 

[Paulmanlike]

Yet again this thread derails onto something completely different.

FYI, Craig Gill, drummer for the band Inspiral Carpets killed himself at 44 years old (I think) due to debilitating tinnitus. If only he knew about Neuromod, these guys need to be careful, tinnitus can be an irritant that somebody learns to live with along to something that somebody kills themselves for. Not that this is helpful, we're all here to support each other and keep up to date with the latest evidence based treatments.

Does anyone know the difference between the old MuteButton and the new MuteButton? Both have the headphones and the electrodes on the tongue, so what has changed?

Thanks.

From what I can understand off it - nothing. The product is exactly the same HOWEVER they are testing different methods to different sub-types of tinnitus. From the Q&A they implied:

- High frequency desynchronization is more effective than low frequency desynchronization, especially towards the end. From how I understand that, the effects of tinnitus suppression or a quieter tinnitus are more effective after treatment has stopped with the higher frequency delivered through the headphones. With the lower frequency tones the effects don't last as long.

- It is more efficacious for those with tinnitus AND hyperacusis (90%) and that sub-group is achieving almost twice as much improvement as those with just tinnitus (super responders).


@hans799, you are optimistic thinking we'll get any more answers for Tinnitus Week, they seem to have been in the stage of wrapping up their latest TENT-A2 results/still gathering info and presenting their data from TENT-A1 at high profile science conferences.

I am thinking their main priority at this point is not engaging with potential customers but rather convincing the scientific community they're onto something; there has in the past been lots of hype leading to constant let downs.

Maybe this time they are right, who knows.

 

[TimmyC]

Update y'all:

https://www.neuromoddevices.com/newsroom/2019/february-and-march-2019-meeting-schedule

EDIT: this is an update on their conference, not price or anything. But I assume all these meetings (in the US by the way) means a lot of good things are in store.