Research to Examine the Support for People with Hearing Loss Who Experience Tinnitus

[Nic]

Do you have a hearing loss AND tinnitus?

Would you be able to find a moment to fill in a survey to help us explore the support for people with hearing loss who experience tinnitus?

The British Tinnitus Association (BTA) and The Ear Foundation (TEF) are carrying out research to examine the support for people with hearing loss who experience tinnitus. As part of this, we would really like to hear about your views and experiences. This survey explores how people with hearing loss experience tinnitus, their experiences with services, management, and interventions with regard to tinnitus, and the help they may still need for their tinnitus. Your answers will be anonymous and all responses will be safely stored.

Please find the survey link here: https://www.surveymonkey.com/r/Adults_HearingLoss_Tinnitus

We hope you are able to take part. The questionnaire will be closed on the 22nd of June.

Thanks for your help!

Nic

 

[linearb]

Given that at this point it's pretty well documented that tinnitus is not an inherent result of HL, but is instead the result of problems in several brain structures, which have been understood with more and more specificity over the past two decades based on fMRI studies, I am curious to know why the BTA thinks that this is a useful line of inquiry.

 

[Danny Boy]

Do you have a hearing loss AND tinnitus?

Would you be able to find a moment to fill in a survey to help us explore the support for people with hearing loss who experience tinnitus?

The British Tinnitus Association (BTA) and The Ear Foundation (TEF) are carrying out research to examine the support for people with hearing loss who experience tinnitus. As part of this, we would really like to hear about your views and experiences. This survey explores how people with hearing loss experience tinnitus, their experiences with services, management, and interventions with regard to tinnitus, and the help they may still need for their tinnitus. Your answers will be anonymous and all responses will be safely stored.

Please find the survey link here: https://www.surveymonkey.com/r/Adults_HearingLoss_Tinnitus

We hope you are able to take part. The questionnaire will be closed on the 22nd of June.

Thanks for your help!

Nic

Is the BTA planning to sell more maskers? I joke, I'll fill it in.

 

[Atlantis]

Please find the survey link here: https://www.surveymonkey.com/r/Adults_HearingLoss_Tinnitus

How much money did the BTA give to this survey?

 

[Silvio Sabo]

How much money did the BTA give to this survey?

If they gave more then 1 GBP it's still way too much.

Surveys aren't gonna fix anything.

 

[Atlantis]

If they gave more then 1 GBP it's still way too much.

Surveys aren't gonna fix anything.

I would like to hear from @ Nic why BTA supports this?

 

[Danny Boy]

I would like to hear from @ Nic why BTA supports this?

Personally, I don't like the BTA...I called the hotline once and the lady told me it'll subside...What the? Well, if it wasn't for tinnitus talk and all this database of drugs then I wouldn't be in a great place that I am now. What I want to know is, why aren't the BTA taking note of trobalt or keppra in the treatment of tinnitus or hyperacusis?

 

[NiNyu]

Question, is there anybody with sudden hearing loss and no T ? And I'm not asking about age related degeneration of the hearing sense.

As far as I know, T is caused by damage/dysfunction of the hearing organ. So the connection between cochlea and auditory cortex (Thalamus) isn't working properly.

 

[Danny Boy]

Do you have a hearing loss AND tinnitus?

Would you be able to find a moment to fill in a survey to help us explore the support for people with hearing loss who experience tinnitus?

The British Tinnitus Association (BTA) and The Ear Foundation (TEF) are carrying out research to examine the support for people with hearing loss who experience tinnitus. As part of this, we would really like to hear about your views and experiences. This survey explores how people with hearing loss experience tinnitus, their experiences with services, management, and interventions with regard to tinnitus, and the help they may still need for their tinnitus. Your answers will be anonymous and all responses will be safely stored.

Please find the survey link here: https://www.surveymonkey.com/r/Adults_HearingLoss_Tinnitus

We hope you are able to take part. The questionnaire will be closed on the 22nd of June.

Thanks for your help!

Nic

Also, people can have hidden hearing loss, like I do. My hearing is perfect, yet I have tinnitus.

 

[valeri]

Given that at this point it's pretty well documented that tinnitus is not an inherent result of HL, but is instead the result of problems in several brain structures, which have been understood with more and more specificity over the past two decades based on fMRI studies, I am curious to know why the BTA thinks that this is a useful line of inquiry.

Couldn't agree more!
I guess they have to justify their "existence" by doing stupid irrelevant surveys like this!
What a shame and waste of money

 

[Atlantis]

Couldn't agree more!
I guess they have to justify their "existence" by doing stupid irrelevant surveys like this!
What a shame and waste of money

http://www.tinnitus.org.uk/healthcare-appeal
Not very encouraging research...

 

[Danny Boy]

http://www.tinnitus.org.uk/healthcare-appeal
Not very encouraging research...

Mindfulness...What a waste of money. They should be repurposing trobalt, making a safer trobalt drug.

 

[NiNyu]

Mindfulness Behavioural Cognitive Therapy ...reducing distress for people with tinnitus is now underway.

That's the typical, the problem is not the problem but your attitude towards the problem is the problem statement which is inapplicable for T.

Another good joke,

Assessing effective treatments for deaf tinnitus patients

Like unconsciousness? Coma?

 

[valeri]

I'm just not sure what it will take for ATA and BTA to wake up and realise that we need not another survey but a cure/relief of some sort.

When it comes to tinnitus all those behavioural and mindfulness therapies are simply a load of bull.
How many other physical conditions get treated with psychological therapies?

Maybe we should start treating other neurological disorders in the same way.
Maybe it's time for a patients with progressive Parkinson's or MS to look into their behaviour and attitude towards the problem!
And if they end up in the wheal chair because their condition is not mild but rather severe, we can conclude that they simply didn't meditate enough or had enough of positive attitude.

Those tininitus associations are just a waste of space, money they rise firstly needs to cover their expenses and then the lousy rest is used for little crap projects like the one above!

I'm a firm believer that none of those organisations really want the cure to ever be found as that would ultimately mean the end of them.
And who wants to loose a cushy job!

 

[NiNyu]

I'm a firm believer that none of those organisations really want the cure to ever be found..

Precisely, conflict of interest.

T is a neurological problem so if these organizations were to fund/research **focused ultrasound** that may lead to something helpful. It's been working for tremor patients already! But then again, that would cost money and time.

It's unlike that we'll ever be capable to fix something as tiny as the cochlea but getting rid of some neurons in the brain might actually be doable.

 

[Bart]

That's the typical, the problem is not the problem but your attitude towards the problem is the problem statement which is inapplicable for T.

I am not sure about that, it is known that there are people who have loud T and still are only slightly bothered and/or annoyed by it, is that because their T is less intrusive or is it because they have have changed there attitude towards it ?

Do not get me wrong, having T myself I know it can be very hard to deal with it. However, at onset of my T I was a complete wreck, but now I am doing rather well even though my T is just as loud as it ever was.

But agreed, there is not enough awareness about the dangers of loud loise, especially among the younger generation, and there should be more focus and funds for an actual cure, something the BTA should strive for.

 

[linearb]

Mindfulness...What a waste of money. They should be repurposing trobalt, making a safer trobalt drug.

Studies which show that mindfulness practices cause structural brain changes in parts of the brain known to be involved in tinnitus: At least six of which I am aware

Studies which show that Trobalt is a safe and effective treatment for tinnitus: Zero

 

[linearb]

I am not sure about that, it is known that there are people who have loud T and still are only slightly bothered and/or annoyed by it, is that because their T is less intrusive or is it because they have have changed there attitude towards it ?

Imaging studies point the finger at different brain structure deficiencies as being responsible for tinnitus volume and distress; volume seems to be a result of thalamic gating problems, whereas distress is the result of thin cortical slices in the right anterior insula.

Interestingly, though no one has ever assessed this in tinnitus patients in particular, imaging studies of long-term meditators show thicker cortical slices in the right anterior insula. This is probably why experienced meditators tolerate pain of all kinds better than people without that background.

 

[linearb]

I'm a firm believer that none of those organisations really want the cure to ever be found as that would ultimately mean the end of them.
And who wants to loose a cushy job!

And the large number of people involved in these organizations who claim to have tinnitus themselves are... lying?

 

[Silvio Sabo]

Studies which show that mindfulness practices cause structural brain changes in parts of the brain known to be involved in tinnitus: At least six of which I am aware

Studies which show that Trobalt is a safe and effective treatment for tinnitus: Zero

Yes but those kind of "treatments" generally require a complete change of life style, devotion to the practice and most of all belief in that sort of crap. If you simply don't have that then you're just screwed. Therefore these will not work for everyone.

It is not very helpful to tell people that suffer from T. that it's all in their head (no pun intended). It just pisses people off.

Also the kind of people that are into "mindfulness" are generally not those that put so much emphasis in the scientific method and the procedure that is required to call a study meaningful so I would take all that these studies show with a truck load of salt.

As a trained scientist I have seen a lot of bad science and read bad reports as well as good ones. Depending on what kind of hypothesis you start off with and then even worse, let your own beliefs influence a study, then you might even be able to find evidence that the sky is red.

We're looking for a cure here or something that might bring the volume down. If simply changing our feelings and not feeling bad about our T. was the solution then there are drugs for that too. I bet that if I dosed myself with cocaine I would not have a single issue with my T. because I'd be high and happy all the time. So are daily doses of cocaine a cure for T. then? Probably not. But hopefully you get my point.

 

[Danny Boy]

Studies which show that mindfulness practices cause structural brain changes in parts of the brain known to be involved in tinnitus: At least six of which I am aware

Studies which show that Trobalt is a safe and effective treatment for tinnitus: Zero

Is that so? Well, I guess we can call trobalt an empty cause because you said so. Anyway, you stick to mindfulness and I stick to trobalt.

 

[ruben ruiz]

I agree with Danny Boy. Foundations have a propensity for the mis-use of funds.
I actually get depressed reading about the science or lack of science regarding hearing and its dysfunction.
The more I read the more I ask myself why.

 

[linearb]

Yes but those kind of "treatments" generally require a complete change of life style, devotion to the practice and most of all belief in that sort of crap.

Yes, making serious structural changes to one's life, is difficult, time consuming, and requires a lot of commitment. However, I don't think that deciding that meditation is a worthwhile pursuit requires any "belief" in anything other than empirical, rational science. It's certainly true that the historical contexts for meditation mostly wrap it up in some kind of theology, but in the modern world, the number of atheist mediators are... legion. Meditating at its core is nothing more complex than willfully paying attention to each moment as it occurs. This does not imply a belief in karma or any other dogmatic, woo-woo thing.

It is not very helpful to tell people that suffer from T. that it's all in their head (no pun intended). It just pisses people off.

I agree, which is why I would never say such a thing.

Also the kind of people that are into "mindfulness" are generally not those that put so much emphasis in the scientific method and the procedure that is required to call a study meaningful so I would take all that these studies show with a truck load of salt.

Skepticism is healthy and should be at the core of any scientific inquiry; however, if you don't believe that there are a shitton of skeptical rational people who are fascinated by this research, I would encourage you to look a little deeper, because there are a lot of us out there.

We're looking for a cure here or something that might bring the volume down.

Interestingly, a few studies have specifically assessed the effect of attention-based activities on auditory processing, and have concluded that certain kinds of attention to audio stimulus literally increase the firing rate in the auditory cortex.

I am afraid I don't follow your line of reasoning about drugs; if you haven't noticed, I am deeply, deeply skeptical of pharmacological interventions as the exist in the current context of profit-oriented drug research, and I'd also be shocked if cocaine did anything for tinnitus other than exacerbate it because it decreases the inhibitory mechanisms which are responsible for keeping tinnitus in check.

Is that so? Well, I guess we can call trobalt an empty cause because you said so. Anyway, you stick to mindfulness and I stick to trobalt.

By all means! I think that people should deal with their own problems in whatever way they believe is beneficial.

 

[valeri]

And the large number of people involved in these organizations who claim to have tinnitus themselves are... lying?

When my t started I was referred to a psychologist, an "expert" in tinnitus!
At $300 for initial consult and $250 for a follow up I was deeply disappointed when I found out that his claims of having t are pure lies.
Medical profession hey.....

 

[snow86]

I'm just not sure what it will take for ATA and BTA to wake up and realise that we need not another survey but a cure/relief of some sort.

When it comes to tinnitus all those behavioural and mindfulness therapies are simply a load of bull.
How many other physical conditions get treated with psychological therapies?

Maybe we should start treating other neurological disorders in the same way.
Maybe it's time for a patients with progressive Parkinson's or MS to look into their behaviour and attitude towards the problem!
And if they end up in the wheal chair because their condition is not mild but rather severe, we can conclude that they simply didn't meditate enough or had enough of positive attitude.

Those tininitus associations are just a waste of space, money they rise firstly needs to cover their expenses and then the lousy rest is used for little crap projects like the one above!

I'm a firm believer that none of those organisations really want the cure to ever be found as that would ultimately mean the end of them.
And who wants to loose a cushy job!

Thats exactly how it is. The german "Tinnitus League" (association like ATA and BTA) "works" the same way.
They send a magazine to their members (50€ fee per year for membership) thats full of "advice" i.e. those behavioural stuff you mentioned. They NEVER mention any scientific promising research towards a cure (no VNS, KV3 Drugs, HIFU etc).
They only try to advocate maskers and other stuff. They act like T is something only elderly half-deaf(d?) people have.
Sure, the last thing they want to see is a working therapy because they dont want to lose their sweet jobs.
They receive a boatload of money from the acustic/hearing aid industry.
I attended a seminar and it was so useless (explaining what T is to people who have T since years and that there is nothing you can do. Yet they claim that they help so many people.
Only thing I learnt was that the Ceo arrived in the newest mercedes car.

 

[dan]

Studies which show that mindfulness practices cause structural brain changes in parts of the brain known to be involved in tinnitus: At least six of which I am aware

Studies which show that Trobalt is a safe and effective treatment for tinnitus: Zero

Funny you mention it, because there are NO NO NO studies refuting the effectiveness of Trobalt in the treatment of tinnitus. In fact, the only stutdy EVER done was in rats, and it prevented tinnitus in all of them after acoustic trauma!

So saying that Trobalt wont work for T because there are NO studies proving the effectiveness of Trobalt on Tinnitus, is like saying that aliens dont exist in any galaxy in the unknown Universe.
One big difference here is that we can EASILY test for the effectiveness of Trobalt by doing a proper human trial and this is why people are criticising the BTA and siimilar organizations. Dont tell me the German Tinnitus League, the British T Association and the American T Association, do not have enough combined money to fund such a trial and perhaps as @dannyboy said- repurpose Trobalt to treat tinnitus!

@Nic WHY DOES THE BTA IGNORE POTENTIAL DRUGS FOR TINNITUS?

 

[dan]

Perhaps T sufferers need to run anti-BTA campaigns, anti-ATA campaigns and anti-GTL campaigns in their respective countries and stop these organizations from dictating how long we need to continue to suffer = Eternal suffering.

If I were to organize an ANTI BTA rally outside their UK headquarters, how many T sufferers would join me?

 

[dan]

"Research to Examine the Support for People with Hearing Loss Who Experience Tinnitus"

Can somebody tell me what is wrong with this sentence???

HINT: Research has already found out that everybody with tinnitus has hearing loss, hidden or otherwise.
But wait, even if that statement was Ok, then what, T people without hearing loss dont need support or maybe you have done research that shows T people who hear fine dont suffer as much ???
Either way you spin it, its f#$%d.
WAKE UP BTA.

 

[dan]

@Nic , can you honestly tell me that this research isnt intended to introduce more people with hearing loss to hearing aids?
Please answer this question. Thanks you.

 

[BrStan@]

OK there you go you are asking why BTA are doing this research it is because of this:

http://www.itv.com/news/anglia/update/2015-05-21/tinnitus-charity-awarded-134k-lottery-grant/

The British Tinnitus Association (BTA) has received £134,039 from the fund's Reaching Communities programme to hold one-day information events which will help sufferers cope better with the condition.

Tinnitus is a noise such as a ringing or buzzing that an individual experiences without an external source and can often lead to stress, anxiety or sometimes depression.

The events, which will take place in nine cities including Norwich, aim to reduce stress, confusion, isolation and improve well-being.

"We're delighted to have received this superb award from the Big Lottery Fund.

"Through our regional Tinnitus Information Days, over a thousand people will benefit from increased knowledge of tinnitus and how to manage the condition as well as from improved local support.

"Isolation, depression and anxiety often affect people with tinnitus; these events will help equip people to cope with their tinnitus better and have an improved quality of life thanks to this Big Lottery Fund award and the work of the British Tinnitus Association."

– DAVID STOCKDALE, CHIEF EXECUTIVE OF THE BTA
Last updated Thu 21 May 2015

This money need to be spend somehow why would they be spent on tinnitus research when they can be spend for something useless.
And it is not called British Tinnitus Association but it is British Useless Association.