AoHL Quoted as "No Drugs Are Currently on Trial to Treat Long-Term Tinnitus"

[Mark662]

According to Tracey Pollard of Action on Hearing Loss there are currently no drugs being trialled with the potential to treat long term tinnitus.

She stated this on BBC Radio 4's You and Yours programme that went out on April 16th 2015

You can listen to it here. 28 minutes onwards.

http://www.bbc.co.uk/programmes/b05qjq6m

I feel it is inaccurate for her to make such a broad-ranging statement without the full facts and results of ongoing trials being known.

 

[preslys]

@Mark662

You mean that we will not benefit from autifony drug ????

 

[Mark662]

@preslys
I think it is more a case of an individual who should know better, making presumptuous statements about outcomes of drug trials and the potential for these drugs to treat all varieties of tinnitus.

Has she categorically been told by the researchers behind Autifony, for example, that their drug will have no use for patients with long term tinnitus?

I doubt it.

In my opinion, it was a stupid and ill-informed remark.

 

[Danny Boy]

@preslys
I think it is more a case of an individual who should know better, making presumptuous statements about outcomes of drug trials and the potential for these drugs to treat all varieties of tinnitus.

Has she categorically been told by the researchers behind Autifony, for example, that their drug will have no use for patients with long term tinnitus?

I doubt it.

In my opinion, it was a stupid and ill-informed remark.

She sounds like she doesn't have a clue what she's talking about. Autifony allows you to join the trial up to 18 months which is longer than the normal acute tinnitus stages.

 

[amandine]

She sounds like she doesn't have a clue what she's talking about. Autifony allows you to join the trial up to 18 months which is longer than the normal acute tinnitus stages.

Is she talking about the AM 101 trials in USA and something she picked up while reading as that in USA is only for first three months

 

[preslys]

In my opinion, it was a stupid and ill-informed remark.

Agree
have tinnitus for 10 years or for 18 months for me it's the same both are chronic.
nills had a mild improvement from trobalt he had tinnitus since 2009. is it true @Danny Boy ?

 

[Danny Boy]

Agree
have tinnitus for 10 years or for 18 months for me it's the same both are chronic.
nills had a mild improvement from trobalt he had tinnitus since 2009. is it true @Danny Boy ?

That's what Nills is saying. I believe Autifony's drug is for chronic tinnitus, if it were for acute stages they would've limited the trial to 3-12 months. In-fact, they don't let you on the trial, till after 6 months, to make sure you have chronic tinnitus.

 

[Geo]

That's what Nills is saying. I believe Autifony's drug is for chronic tinnitus, if it was for acute stages they would've limited the trial to 3-12 months. In-fact, they don't let you on the trial to after 6 months to make sure you have chronic tinnitus.

but you can have mild T for 20 years and not bug you or get permanent increases in volume and maybe autifony can help you and theres are people like me that get a lot of more permanent increases than fingers i have i dont know what is triggering it but severity comes to mind if the drug dont, work not just the acute stage..

 

[erik]

I don't think what she said was that bad. At least there is another news story about T (she even said "T" at one point). The more reporting about T there is the better whether she was 100% accurate or not. At the moment there is nothing to treat long term T (officially). I wouldn't consider 6-18 months necessarily chronic. I've had it for many years now, that is most likely chronic. My dad has had it 30+ years. That is really chronic.

 

[markoana]

The member named Barny or something like, who has been on TT in 2014, talking abt Trobalt, pontassium chanels, r guy is realy expert know so much about T. He is video game programer. U can fin his posts nd explanations all over TT, guy that realy was dedicated to find out all abt mechanism of T.

Point I want to say, one of his conclusions was that if the drug work it is gona work same for a ppl with 3 months of fresh T, same as on T that is present for a years. Drug is gonna block that hiperactive neurons or not. That is a fact!

So this lady from radio BBS was talklng about AM101 or she was talking buls***t (sorry fot the word)

 

[Richard zurowski]

Well that's put a downer on things! Why would she have said that. Must have had some info from someone?

 

[amandine]

Well that's put a downer on things! Why would she have said that. Must have had some info from someone?

No She probably read press releases and then did a bit of googling and agreed some questions before the interview and then she reproduced what is publicly available.
She cant comment publicly on autifony or any other trials that are on going in case it is a success or failure. BBC has to be careful about what is said on air...
As far as we know Autifony are on the right track.......she may have been ignorant also........when I spoke with rep of a well known charity for hearing etc....the rep I spoke with didnt even know what was AM 101!!!

 

[amandine]

and here is another example of how doctors are stopped from helping their patients!! due to drug company financial interests....

same can be said for retigabene trobalt, or many other drugs that ENTs refuse to prescribe.....

http://m.heraldscotland.com/news/13...tients_which_needs_to_be_kept_in_check_quot_/

 

[amandine]

and the response to trying to get doctors to prescribe drugs for other than they are licensed....

http://www.ldnnow.co.uk/42801/index.html

 

[Zechariah]

The member named Barny or something like, who has been on TT in 2014, talking abt Trobalt, pontassium chanels, r guy is realy expert know so much about T. He is video game programer. U can fin his posts nd explanations all over TT, guy that realy was dedicated to find out all abt mechanism of T.

Point I want to say, one of his conclusions was that if the drug work it is gona work same for a ppl with 3 months of fresh T, same as on T that is present for a years. Drug is gonna block that hiperactive neurons or not. That is a fact!

So this lady from radio BBS was talklng about AM101 or she was talking buls***t (sorry fot the word)

So you are stating that a conclusion of an internet forum member is a fact... Why am I getting chills every time when someone presents an opinion/assumption as a fact.

Everyone who has been member of TT longer than a year knows that even the researchers do not know when the T becomes chronic and when "ear T" becomes "head T" and does it even make the transition on every individual. We simply don't know yet for a fact.

PS. I'm wondering if you ment benryu (instead of Barny?)

 

[Nucleo]

According to Tracey Pollard of Action on Hearing Loss there are currently no drugs being trialled with the potential to treat long term tinnitus.

It seems to me they were being careful. AUT00063's trial is for tinnitus between 6 and 18 months. So the statement stands true if we assume long term tinnitus is 18 months+. No drugs are being tested for 18 months+ sufferers. AUT00063 could potentially help but it is not being trialled for that and we won't have any data in the forseeable future.

 

[Nucleo]

Everyone who has been member of TT longer than a year knows that even the researchers do not know when the T becomes chronic and when "ear T" becomes "head T" and does it even make the transition on every individual. We simply don't know yet for a fact.

Yes this is an extremely inelegant hypothesis. There is no way to verify it. How do we discern ''head'' T from ''ear'' T? Why would there be a ''transition''? What exactly would change in the auditory system?

Origins of the ''chronicity'' of T is merely an academic topic at this point. I do not think ''ear T'' and ''head T'' are actual things. T is just T and it might involve the auditory system as a whole, possibly more.

 

[BrStan@]

She sounds like she doesn't have a clue what she's talking about. Autifony allows you to join the trial up to 18 months which is longer than the normal acute tinnitus stages.

I agree with you Danny Boy most of them don't have a clue about the research has been going on.
My previous visit to ENT was a disaster. He told me no research is going on on this. As if he wanted to convince me that it is kind of a accepted from the medical community that cure is completely impossible and never will be. Then he talk about how everyone have it but are able to ignore it. He did not have a clue how loud T could be. I did not want to waste my time with him and just left.

 

[RoadToSilence]

I agree with you Danny Boy most of them don't have a clue about the research has been going on.
My previous visit to ENT was a disaster. He told me no research is going on on this. As if he wanted to convince me that it is kind of a accepted from the medical community that cure is completely impossible and never will be. Then he talk about how everyone have it but are able to ignore it. He did not have a clue how loud T could be. I did not want to waste my time with him and just left.

It is such a shame that for so many new T sufferers, the first piece of advice they get from a medical professional (regardless of whether it is a physician, an audiologist, or an ENT) is that:

There is no cure or treatment for T.

No one is seriously working on a cure or treatment for T.

There will never be a cure or treatment for T.

Get used to it.

PS, can I interest you in a ridiculously overpriced sound generator???


The patient goes on his or her way feeling defeated and hopeless. The ENT gives the same advice to the next person, confident in his position yet completely oblivious to new initiatives and promising research targeting T.

Imagine instead if, upon a visit to an ENT, the new T patient heard this:

"I'm so sorry to hear that you are suffering from this. T is a condition that the medical community is really playing catch-up with. It can have many causes and can progress in many different ways. For those who are fortunate, it can subside over time and even disappear. Others can become habituated so that even though it remains, they no longer notice it or are not bothered by it. Unfortunately, there are some people who still really struggle. But, right now there are promising new treatments being developed specifically for T. In fact, at this very moment there are multiple trials underway around the world (AM-101 and AUT63 just to name two). You may even be eligible to participate in one of the trials…let's look into it. I've been following the trials closely and the early results look promising. If the final outcomes are positive, we could be looking at real treatments within a few years. Don't lose hope. In the meantime, here are a few things you can do which may be helpful…"

Was that really so difficult?

 

[Barbara777]

Interesting article...

http://www.enttoday.org/article/drug-trials-for-hearing-loss-tinnitus-therapies-show-promise/

 

[Zechariah]

Yes this is an extremely inelegant hypothesis. There is no way to verify it. How do we discern ''head'' T from ''ear'' T? Why would there be a ''transition''? What exactly would change in the auditory system?

Origins of the ''chronicity'' of T is merely an academic topic at this point. I do not think ''ear T'' and ''head T'' are actual things. T is just T and it might involve the auditory system as a whole, possibly more.

Thanks for echoing me

 

[Zechariah]

Imagine instead if, upon a visit to an ENT, the new T patient heard this:

"I'm so sorry to hear that you are suffering from this. T is a condition that the medical community is really playing catch-up with. It can have many causes and can progress in many different ways. For those who are fortunate, it can subside over time and even disappear. Others can become habituated so that even though it remains, they no longer notice it or are not bothered by it. Unfortunately, there are some people who still really struggle. But, right now there are promising new treatments being developed specifically for T. In fact, at this very moment there are multiple trials underway around the world (AM-101 and AUT63 just to name two). You may even be eligible to participate in one of the trials…let's look into it. I've been following the trials closely and the early results look promising. If the final outcomes are positive, we could be looking at real treatments within a few years. Don't lose hope. In the meantime, here are a few things you can do which may be helpful…"

Was that really so difficult?

Exactly my thoughts. Well summarized. This kind of response from GP/ENT would give some fact based hope that sufferers don't have to live the rest of their lives with T. That hope is really needed in the first few months after onset.

 

[nills]

I think it is really hard to be into Tinnitus science + have kids, do the washing, bring them to school, walk the dog, do the ironing ... AND keeping up to date on the Tinnitus news out there...

thank God we are n`t waiting around for our doctors to tell us anything ...

 

[markoana]

So you are stating that a conclusion of an internet forum member is a fact... Why am I getting chills every time when someone presents an opinion/assumption as a fact.

Everyone who has been member of TT longer than a year knows that even the researchers do not know when the T becomes chronic and when "ear T" becomes "head T" and does it even make the transition on every individual. We simply don't know yet for a fact.

PS. I'm wondering if you ment benryu (instead of Barny?)

Yes @benryu (sorry), glad that u know who is my reference. If u read what he was writing and explaining to us here for a months u have (i suppose) to agreed that guy is a tinnitus book, knows things better than 99.9 percents o ENTs. Ok, maybe "fact" is not perfect chosen word, but that is something that has more logic than many stupid things we heard from our doctors, ENTs (like @RoadToSilence heard few days ago) etc...
If something block hiperactive neurons, calming them down, it will do it the same after 3 months or 3 years.

That acute Vs Chronic myth or/all time quetion, from my point of view (real acute) is just inside 7 days, max 3 months. When u can do corticosteroid therapy, Hyperbaric oxygen etc to help hair cells... AUT63 do not accept for trials that acute persons. There is reason for that, so statement of that lady from BBC is stupid, or uneducated, or not updated, or she was talking about am101.

Finnaly, if u say AUT63 is just from acute stage, why we are even talking about it here at all? Why u are reading this thread? (just mine question).

My point is not to be unreasonable optimistic that AUT63 is gonna help to most of us here. I am reasonable optimist because it is far more logical than the any opposite opinion.

 

[Zechariah]

Finnaly, if u say AUT63 is just from acute stage, why we are even talking about it here at all? Why u are reading this thread? (just mine question).

Hi, there might be some mechanism we don't know yet. For example if the excess glutamate production continues after hearing damage has occured, it may give a false signal to the brains. So even if AUT00063 calms the brain down it doesn't help because brains are getting "a real signal" from the ear (that is hair cells producing excess glutamate). We may need something to calm down the hair cells aswell (AM-101?). And of course this isn't necessary the case on every individual because situations may vary.

If I recall right, also benruy address this concern aswell...or was it ATEOS. Can't remember right now.

 

[markoana]

Hi, there might be some mechanism we don't know yet. For example if the excess glutamate production continues after hearing damage has occured, it may give a false signal to the brains. So even if AUT00063 calms the brain down it doesn't help because brains are getting "a real signal" from the ear (that is hair cells producing excess glutamate). We may need something to calm down the hair cells aswell (AM-101?). And of course this isn't necessary the case on every individual because situations may vary.

If I recall right, also benruy address this concern aswell...or was it ATEOS. Can't remember right now.

Now we are on half way of understanding. That (evil glutamate as Benruy said-like it) is blocking pontasium chaneles, after hair cells were damaged. that is why there is false signal to the brain and that "phantom" noise made by hiperactive neurons. So trobalt (some of his parts) are opening those pontasium chanels again, lowering the hipearctivity of neurons and calmin down the noise. Refering from Benruy.
If those damaged haircells do not produce glutamte that goes to pontasimum chanels and blocks them u will "just" have hearing demage (noticable or not) but u will not have t.

 

[Nucleo]

Now we are on half way of understanding. That (evil glutamate as Benruy said-like it) is blocking pontasium chaneles, after hair cells were damaged. that is why there is false signal to the brain and that "phantom" noise made by hiperactive neurons. So trobalt (some of his parts) are opening those pontasium chanels again, lowering the hipearctivity of neurons and calmin down the noise. Refering from Benruy.
If those damaged haircells do not produce glutamte that goes to pontasimum chanels and blocks them u will "just" have hearing demage (noticable or not) but u will not have t.

There is also an hypothesis out that states tinnitus does not come from damage to hair cells, but rather to the nerve endings attach to them. This damage occurs when the organism cleans up the excess glutamate produced after acoustic trauma. While clearing glutamate the ''janitor'' cells produce damaging side products, which causes inflammation of inner ear tissue (not good) thus causing more damage in the end. This is the basis behind why corticosteroids are sometimes effective. You need to shut down the immune system so these ''janitor' cells never come into play, minimizing the damage done.

I also think this is why AM-101 works. They claim their compound binds to NMDA receptors (same as glutamate). Apparently if this happens, it stops the whole glutamate excitotoxic cascade of events, also minimizing the damage done.

 

[sideways]

It is such a shame that for so many new T sufferers, the first piece of advice they get from a medical professional (regardless of whether it is a physician, an audiologist, or an ENT) is that:

There is no cure or treatment for T.

No one is seriously working on a cure or treatment for T.

There will never be a cure or treatment for T.

Get used to it.

PS, can I interest you in a ridiculously overpriced sound generator???


The patient goes on his or her way feeling defeated and hopeless. The ENT gives the same advice to the next person, confident in his position yet completely oblivious to new initiatives and promising research targeting T.

Imagine instead if, upon a visit to an ENT, the new T patient heard this:

"I'm so sorry to hear that you are suffering from this. T is a condition that the medical community is really playing catch-up with. It can have many causes and can progress in many different ways. For those who are fortunate, it can subside over time and even disappear. Others can become habituated so that even though it remains, they no longer notice it or are not bothered by it. Unfortunately, there are some people who still really struggle. But, right now there are promising new treatments being developed specifically for T. In fact, at this very moment there are multiple trials underway around the world (AM-101 and AUT63 just to name two). You may even be eligible to participate in one of the trials…let's look into it. I've been following the trials closely and the early results look promising. If the final outcomes are positive, we could be looking at real treatments within a few years. Don't lose hope. In the meantime, here are a few things you can do which may be helpful…"

Was that really so difficult?

It is such a shame that for so many new T sufferers, the first piece of advice they get from a medical professional (regardless of whether it is a physician, an audiologist, or an ENT) is that:

There is no cure or treatment for T.

No one is seriously working on a cure or treatment for T.

There will never be a cure or treatment for T.

Get used to it.

PS, can I interest you in a ridiculously overpriced sound generator???


The patient goes on his or her way feeling defeated and hopeless. The ENT gives the same advice to the next person, confident in his position yet completely oblivious to new initiatives and promising research targeting T.

Imagine instead if, upon a visit to an ENT, the new T patient heard this:

"I'm so sorry to hear that you are suffering from this. T is a condition that the medical community is really playing catch-up with. It can have many causes and can progress in many different ways. For those who are fortunate, it can subside over time and even disappear. Others can become habituated so that even though it remains, they no longer notice it or are not bothered by it. Unfortunately, there are some people who still really struggle. But, right now there are promising new treatments being developed specifically for T. In fact, at this very moment there are multiple trials underway around the world (AM-101 and AUT63 just to name two). You may even be eligible to participate in one of the trials…let's look into it. I've been following the trials closely and the early results look promising. If the final outcomes are positive, we could be looking at real treatments within a few years. Don't lose hope. In the meantime, here are a few things you can do which may be helpful…"

Was that really so difficult?

When I first got tinnitus, I went to my family doctor. He told me that he just prescribes Xanax and tells people to turn up the radio. Then he laughed. I thought he was joking. He wasn't.

 

[Lakadema]

Ìm not even concerned if what this lady say is true, the very fact that Autifony and or AM 101 works (in case they do work) will open a lot of possibilites, not only by encouraging further investigations (more profit) and knowing better how all this stuff works.

Definitely on the good truck, even if now there isnt any, that doesnt mean that in 5 ot 10 years there wont be one.

 

[Lisa88]

Chronic is labelled by t professionals as 12 months or longer. It is just a term, and does not mean it will last forever.
Autifony obviously targets longer. And lots of announcements re various other trials that they are extending to chronic stage.
I think the title of this post should be changed if it is to remain in the research category. It is not accurate. And slightly annoying.