Why TRT Fails People ...

I had a brief look at the AM101 thread which is nearly 60 pages long at this stage; plenty of info there - here is one member who has pretty much answered your question already:

I sense from a couple of your posts that your real problem in terms making a decision comes from the fear of the medical procedure. So what to do...?

1. Make sure that you are actually eligible for the trial; if you are not French and would like to take part in the French clinical trials, then that could be a potential problem (there are strict protocols as to whom can take part; language is one such criteria). Similarly returning to the UK for the trial may be a problem if you are no longer part of the NHS. So examining eligibility would be the first step...
2. What is the cause of your tinnitus? Again - another eligibility criteria to consider.
3. Decision making. What would be the "risk" of doing the procedure as opposed to not doing it? Not really anything - worst case, you end up with no improvment. What would be the risk of not doing the procedure as opposed to doing it? A lifetime of tinnitus and suffering - or at least for the foreseeable future. With those two scenarios in mind, the decision should be fairly evident.

I am generally irritable with the number of people worrying about things which aren't really an issue - ie. fear of simple medical procedures (chances are you already had eartubes inserted as a child). As a comparison, think about the soldiers on the frontlines of the war in Afghanistan. They get their body parts blown clean off. Some of them will need to have as much as 25 litres of blood pumped through them in order to stay alive - that's five times as much blood as there is in the entire human body of an adult. Now that's what you call a bad day at the office. Something to think about...

No. Severe tinnitus is serious medical condition. It needs to be treated aggressively. Do what it takes to make it happen. If you have a fear of medical procedures, then speak with the doctors about it - perhaps they can help with sedation (but there could be counter indications with the clinical trial protocol; ask them).

I am not a doctor. I can't really help you with questions like that. Certain drugs would require tapering if you have been taking them for a while. I have done about 10 pills of Zolpidem for sleep management in the very beginning of my tinnitus ordeal. On occasion I have (mis)used muscle relaxants for their sleep inducing effect - again about 10-15 tablets in total; so nothing major. For sleep management, I would recommend 6mg of Melatonin, ½ hour before bedtime. I have not done any anti-anxiety medication.

If you believe you have anxiety and would benefit from medication, then speak to your doctor about that. After all, medication is there to be used when really needed. But it's always a balance between "need" and "side-effects".

That's normal with serious tinnitus.

Language can be a problem - agreed. But that is not an excuse for rudeness.

I generally have not have it happen to me - perhaps because I am privately insured with the German healthcare system, but if it did happen, I would just calmly tell the doctor "Do you want your money or not? Because if you do, then learn to speak properly... And no, I don't have a hearing problem - so no need to shout".

No problem.

 

Hi @Rhea -

TRT has two components: sound therapy and TRT counseling. The sound therapy does not necessarily use "white noise generators." The specific protocol for the sound therapy, the delivery system, and how various delivery units are set depend on your TRT Category, of which there are five. TRT counseling is bi-directional. As with sound therapy, the specific protocol for the TRT counseling depends upon your TRT Category. All of the TRT counseling is interactive because each patients has his or her tinnitus-related issues to discuss, but the counseling is done within a framework that is dependent upon the TRT Category. For all but one of the TRT Categories there are a number of TRT counseling sessions spread out over the course of treatment, which typically lasts 8-14 months. During the course of treatment there are invariably concerns that arise with respect to tweaking device settings, hills and valleys in progress, how to handle variations in tinnitus loudness and pitch, confusion about certain elements of the Neurophysiological Model, etc. All of these concerns are addressed during the follow-up counseling sessions. The initial counseling session is done in-person. Some TRT clinicians are set up to do the follow-up sessions via phone or teleconferencing (Skype, VSee, etc.)

The purpose of the counseling is not to "improve your thoughts about tinnitus" as your question suggests, although if that happens, it's fine. TRT counseling and sound therapy function in tandem to facilitate habituation by retraining your brain to classify your tinnitus as a neutral stimulus.

Hope this helps.

Dr. Stephen Nagler

 

Before a wildfire starts to spread here on TT, I would like to point out that the "story" is false. I realize that English is probably not your first language, but I kind of insinuated that the story might not be true (have a close read) - the whole point being that anyone can make up anything they like (and get away with it...). And you proved my point perfectly...! But again - language most likely played a part.

Sorry to create a false hope. I have an appointment with Professor Jeanmonod in Switzerland, early November. And that's no fairy tale. I have documented the authenticity of that appointment with the staff of TT - ask them, or look through the HIFU thread.

Take care.

 

Dr Nagler,
are you aware of TRT being practised in France and if so where please? I have no idea and cant find out but thought that maybe you could help out with your knowledge and contacts...thank you

 

You forgot to add the "payment"
TRT is very expensive treatment.
Not sure if insurance covers it?

 

Hi @amandine -

I do not know about TRT in France. Jacqui Shedrake is in London, just a short swim from you! She is excellent. And although I do not know her personally, Dr. Jastreboff feels that Gabriele Lux-Wellenhof in Frankfort am Main is very good.

Hope this helps.

Dr. Stephen Nagler

 

@ DR NAGLER
Thank you for that Dr Nagler. Information appreciated.
Any ideas on cost? and what to do if there is no money. What does someone do if there is no money....and feeling suicidal. Does the moneyless person just die? or is there a way to arrange to pay for treatment on an ongoing basis? Sorry I know and appreciate that these people have to earn a living but surely there is a way to help people who do not have loads of money. I appreciate that these people are the best but I expect that they are really expensive too.....

Also would like your advice. I have been obsessing over this since it started and the sound has gone up up and up. Do you think that this could be because i am doing nothing but thinking talking doing this all day and night? Stopped with the xanax - do you think that is ok....didnt take it for long...
thank you for all your help and advice....

 

@Dr. Nagler
Do you know any TRT specialist in Chicago area?

 

In terms of tinnitus research I have a serious axe to grind about the ATA, the TRT community, and the hearing aid industry - as well as anyone who promotes "management" therapies while showing no interest in research.

I hold the above entities responsible for their lack of insight at the right time, their lack of lobbyism with the right people, biased views due to specific affiliations, and general lack of interest in research.

I have provided details about my views in the thread on "Chickenpox and tinnitus...", support section.

I actually believe my posts contain factual information every time. I agree that the posts and personal attacks can seem exhausting. Indeed, I was aware of this before making my return and asked the staff of TT if we could settle the discussion offline (re: documentation about financial disclosure). But the staff here have to take a neutral stance on certain issues, and so that left me with no choice but to voice my opinion publicly. But I did offer to do it more discretely!

Agreed. But I am no better - and no worse - than a certain member on this board was in the thread about LLLT.

No. Very early on, I did consider a management/TRT approach at the following places:

http://www.tinnitus-klinik.net/
http://www.charite.de/hno/tinnitus/

The head ENT doctor at the university hospital of Leipzig also suggested that I reconsider TRT - as did my own GP. But that is because they are taught to offer these therapies per standard ie. if you have condition X, then they offer you remedy Y, every time...

The reason I initially rejected TRT is because it is actually quite time consuming at the Berlin hospital - apparently I would have to dedicate a day, each week for quite some time. I also realized that at the end of the treatment, you still have tinnitus in the same way that you did at the beginning. So nothing has changed. The whole concept hinges on the assumption that the patient will view his/her tinnitus as a neutral stimulus. Is that likely? As a counter example, will physical pain that has been experienced for 2 years suddenly become less noticeable? I did try hypnotherapy very early on - just one session (see thread on hypnotherapy), as I had previous experience with that.

Instead, I therefore decided to look into any and all medical advances that there might be for tinnitus treatments. I found Dr. Wilden - a man who has seen more tinnitus patients than any other doctor in the world - and he reinforced my views on psychotherapies. He has had many patients in his office that have tried anything and everything only to find out it did not work. Of course, Dr. Wilden cannot be viewed as impartial in this regard. But he did tell me one very specific thing during my first consultation with him: "Tinnitus is such a specific disorder that no amount of psychotherapy will have any effect". He may be biased, but I trust his judgement. Tinnitus is a neurological pathology and does therefore not belong to the field of psychiatry, but to the fields of ENT/neurology/regenerative-medicine. Any neurological disorder - visible or invisible - will leave a special "footprint" on the body.

 

I couldn't of said it better myself.

My take is the industry which specializes in selling solutions related to hearing in specific, e.g. noise amplification devices (hearing aids) Neuromonics, and cochlear implants are the biggest beneficiaries of our suffering right now.....has anyone priced maskers or decent hearing aids ? Follow the money.

These corporations are playing an active role in inhibiting the progress and advances in the field in an effort to maintain profits. If you don't believe me take a look at where university funding into hearing loss-related research comes from and you will see that much of it comes from the noise amplification companies.

Who does the US Army give a grant to? Take a look. This is just one example. Do you know what an audiologist charges for them?

http://www.prweb.com/releases/2013/7/prweb10970617.htm

I don't see any US Army grants to Autifony Therapeutics, Auris Medical or Otonomy.

Sorry If I come across angry but we should have more options by now when it comes to managing our tinnitus. Its 2014 not 1990 and there are no FDA-approved drugs for treating this debilitating condition.

 

What annoys me is that this useless discussion generated over 100 posts, but when the subject of "what can we do to change things" comes up, it gets tucked away and hardly any contribution is made.

Why do we still discuss things like this, why TRT fails, who really cares?

Isn't it time we put our focus into the future instead of discussing another band aid such as TRT

@attheedgeofscience
I would be interested to hear some of your your ideas on how could we all contribute to making tinnitus getting a proper attention of medical community and hopefully finding a cure

 

An active role inhibiting progress? How? Just because companies like Phonak or Cochlear are putting their profits back into creating more advanced devices does not mean they are actively preventing someone else from putting their money into research in biological areas like hair cell regeneration.

 

I find the idea that entities like hearing aid manufacturers, the American Tinnitus Association, or the big bad "TRT Industry" are somehow playing an active role in inhibiting progress towards a true cure for tinnitus and/or hearing loss to be laughable - that is, if it were not so sad. It is sad because that sort of thinking is the product of a truly wounded population desperately crying out for help and willing to point fingers anywhere hopes that it will make a difference. If you really want to make a difference then you should contact the American Tinnitus Association or the Hearing Health Foundation to find out what you can do to bring the day of a cure that much closer. And if they tell you to make a donation, say, "Fine, I'll do that. But what else can I do? How can I personally get involved in advocacy?"

Dr. Stephen Nagler

 

As I thought then, it is basically sound therapy and counselling..yep that's what I had...TRT

Thanks for the reply

 

Many thatnks for your reply...yes this is what I had

 

Its interesting that even when we go to TRT clinics, we are not getting TRT, according to Dr.Nagler.
We must go to the select handful (less than 5 ?) clinics to get real TRT.

 

Well the cost of TRT is generally set by the clinics that provide the service. So in that sense it can vary. As far as what to do "if there is no money," I know of a number of TRT clinicians who are willing to treat indigent patients on a compassionate basis at no charge, and at least two device manufacturers will provide devices at no charge to clinicians for their indigent patients. My suggestion would be to call a number of TRT clinicians, explain your financial situation to them over the telephone, and see what they can do for you in terms of cost.

There is no question that obsessing about tinnitus will increase loudness as you perceive it (i.e., the loudness rating). Obsessing will not increase the loudness match (as determined by an audiologist in testing). As to what you should do about it, that would depend on your history, your evaluation, and what you have already tried to do about it. In short, I cannot respond responsibly. One thing that likely will not work is actively trying not to obsess, because that just makes you obsess more! You might consider reading through the book Tinnitus - A Self-Management Guide for the Ringing in Your Ears by Jane Henry and Peter Wilson. But you really need to commit yourself to doing all the exercises slowly and meticulously.

Hope this helps.

Dr. Stephen Nagler

 

I have spoken with one or two, but I do not know enough about either to recommend them unconditionally. They might be absolutely wonderful; I just cannot say one way or the other.

Dr. Stephen Nagler

 

Just out of curiosity, what was your TRT category (if you know), what type of devices did you use, how long did you use them, and how many TRT counseling sessions did you have?

Dr. Stephen Nagler

 

No actually Doctor that thinking is not pointing fingers "anywhere" in hope for a change. Its the reality of how big business makes money on our ill health and keeps us there sick and desperate. Damaged hearing is big money......$5.5 billion world market. Instead of me contacting the ATA or The Hearing Health Foundation why don't you contact them and offer to make a public service announcement on your behalf. See what they say you have been on T.V. before you have the credentials why not offer to be a spokesman?

All they want from me is money. And I have given to the ATA, generously and I am disappointed.

So since you feel so sure about your position please answer some simple questions for us here.

Have you ever seen a commercial or public service announcement on the dangers to exposure to loud sounds or music?

Has any of the hearing aid manufacturers paid for commercials explaining the dangers to exposure to loud music or sound?

Has any of the hearing aid manufacturers paid for public school education class or classes on the dangers exposure of loud music to children?

Has any of the hearing aid manufacturers handed out free ear protection at any potential loud music or sporting events?

Do hearing aid manufacturers have pamphlets or brochures readily available at doctors offices that treat our youth on the potential dangers of loud sound exposure.

Has the US government been involved in funding any of these?

There are no FDA-approved drugs for treating this debilitating condition...the money is there...why?

You can surly refuse to answer any or all of these questions because thats what I expect you to do.

You would think that at least ONE of the hearing aid manufacturers would produce a "protect your hearing" commercial or campaign.....nope not one. What does that tell you? It tells you its all about profit not progress.

 

If that were true, it would tell me that they are not producing "protect your hearing" commercials. What does that have to do with taking an active role in inhibiting progress?

And by the way, since a number of hearing aid manufacturers also produce (and promote) devices specifically designed to protect hearing, your premise is bogus.

Dr. Stephen Nagler

 

Not sure of the category but I had various hearing tests then I was explained about how the brain limbic system deal with the t etc, I got given WNG and they therapist set them to a level for me etc etc I went every 8 weeks...for 2 years only stopped recently. I must say the therapist was wonderful though, lovely lady who had t herself and deaf in both ears although she did have some hearing via cochlear implant...she treid her very best to help me x

 

Any chronic condition is a god send milking cow!

 

I am very sorry to hear that it didn't work out for you. Did you undergo any testing (Tinnitus Handicap Inventory, etc.) at the beginning and conclusion of your program to compare scores?

Dr. Stephen Nagler

 

It takes the role of "awareness" which is the first step in progress.

If my premise is "bogus" then why don't the hearing aid manufacturers take some of their handsome profits and fund stem cell research or drugs or therapies that attempt cochlear regeneration for hearing recovery in order to cure or further understand how to prevent hearing loss?

JSS

 

I agree with Dr Nagler that your entire premise is flawed. In what other industry would you apply this to?!

We expect Budweiser to promote drinking responsibly, not the manufacturers of dialysis machines treating liver disease from alcohol abuse! Your expectation of 'protect your hearing' campaigns should be on the people producing loud damaging noises in the first place.

 

Your premise was that they are not producing "protect your hearing" commercials. But they are. Could they do more? Sure. We all could. But that is not the same as taking an active role in inhibiting progress, which is what you unfairly accused them of in your Post #107:

"These corporations are playing an active role in inhibiting the progress and advances in the field in an effort to maintain profits."​

Dr. Stephen Nagler

 

Flawed analogy Budweiser is in the business to promote a potentially dangerous and life threatening habit.

Hearing Aid manufacturers are in the "We care and want to help" business.

 

Not taking some of their massive profits to help fund stem cell research or drugs or therapies that attempt cochlear regeneration for hearing recovery in order to cure hearing loss is "inhibiting" progress in a field where helping people with hearing loss is their main premise for revenue.

 

It's not flawed at all. You could say the same thing about makers of Beats headphones. If their product (like alcohol) is used irresponsibly, it can cause bodily harm. They should be the ones advocating safe use of headphones. Same thing for concert venues--they should make sure people are aware and protect themselves from the highly damaging music coming from the speakers they sit people directly in front of. That's their responsibility and they are failing miserably at it!

Hearing aid manufacturers don't cause the damage. They aren't the ones responsible for your hearing loss or tinnitus. Now if you can prove that they are actively funding things that _do_ cause hearing loss and they are doing it intentionally to drive up device sales, you would have a leg to stand on.