Who Can't Habituate or Can't Be Helped By TRT?

Ok, before I go on, everyone I presume can read and understand the title. This thread is regarding habituation, TRT and anything related. So, for those who are tired of hearing about habituation, or get offended about having habituation "shoved" down their throats, then it's probably better to avoid this as I'm sure it'll attract discussion that will likely make you feel worse. With that said, I have some questions for @Dr. Nagler and anyone who is knowledgeable (or not so knowledgeable) about TRT and habituation.

Dr. Nagler has said before that he doesn't think TRT can help everyone (if I understand him correctly), but that it can help most people. I can't remember the percentage, but if I am remembering right, he said that it can help 85% of people. So I'm just wondering who can't it help? In other words, are there really cases so severe that habituation is simply impossible and nothing can facilitate it, not even TRT?

I'm assuming that the people it can't help are people who:

1. Aren't bothered by their tinnitus or consider their severity a 1-3 on a scale of 1-10. Because I would guess the only way to help people who are generally not bothered by tinnitus is to make it go away completely, and that's not possible with TRT.

2. Simply aren't willing to change their way of thinking. I'm sure this point will offend some (not intentionally), but let's face it, you can't help someone who isn't willing to be helped. Just like Trobalt can't help someone not willing to try it.

3. I'm going to guess it can't help those who are deaf with tinnitus. Because obviously you can't use sound therapy in that case or any type of masking device.

So what I'm getting at is trying to find out who else can't it help? Is there really such a thing as tinnitus that is so loud, so reactive, so fill-in-the-blank, that TRT/habituation simply can't help and the only chance this person has is a cure or effective treatment?

 

The people you describe above would generally fall into TRT Category 0. These people can benefit from a very brief explanation of the Neurophysiological Model of Tinnitus and instruction in the proper use of environmental sound. Some clinicians call that TRT. To me it does not matter what you call it - because as I see it, these folks would probably do equally well with some self-CBT. Indeed most of them would probably do just fine with just a bit of information, reassurance, and tincture of time. What they absolutely do not need to be told is: "Your fucked mate welcome to T," which is exactly what happened just yesterday in another thread on this board. Anyway, when I say that 85% of patients succeed in TRT, I do not include Category 0 patients in that statistic - because since they generally do well no matter what they do, including them in the data just throws everything off.

I think it's tough to rule somebody out because that person is "unwilling to change" his or her thinking. Most people do not want to change their thinking, especially when that thinking comes from a point of strong emotion. In my opinion, the only thing that would be a deal-breaker for TRT in that regard would be your unwillingness to allow for the most remote possibility that your thinking might be wrong.

Not exactly. All you need to have for TRT to succeed in that regard is some degree of useful hearing in one ear. It does not even need to be the tinnitus ear!

There is a 4th group that TRT cannot possibly help. And those would be individuals who lack the mental capacity to understand the principles of the Neurophysiological Model when explained slowly in the most elementary of terms.

TRT can potentially help anybody who does not fall into the four groups I have described above. There are some people for whom the success rate would be less than the expected 85% - people with Lyme Disease, for instance. Or those with winding up and/or kindling phenomena. But these conditions (and a few others) are not deal-breakers like the four above. They do, however, decrease the likelihood of success.

Absolutely unequivocally unconditionally NO.

But that said, once there is indeed a cure, there will be no need for TRT or other habituation-based approaches at all. Which will be absolutely wonderful.

One last thing. If you do not fall into any of the four groups above, decide to do TRT, give it your very best shot, and it still does not work ... it is not your fault. We are people; not machines.

 

Having answered the above excellent question to the best of my ability, I am now going to take three or four days away from the board for personal reasons. Here's to quieter times ahead for all.

 

OK, from my point habituation is not so much about not noticing tinnitus but is more about to not be emotional to it.

I had a period of my life when I was writing my thesis in a loud bar. It was fun, I was busy writing and sipping bear. Fun times. The noise which was really loud didn't bothered me at all.

The problem with T is that it makes you think you are powerless. You cannot escape the noise and it makes you submissive and not in control of the situation. Similar to rape. The more you are trying, the hardest it gets on you. If you accept the T, it gets so much easier. Ask yourself, would you be so depressed if you were born with this condition, or it would be natural to you ?

As for your question:
Who can't habituate ?
I would say that:
- everybody that want to be in total control of their life and are fighting T on the daily basis. ( It drains you out )
- people that suffers with depression and other mental issues in their lives ( T amplifies every other issue a lot and it gives a reason to be angry on everything (spouse, friends, family etc..) -> the depression\not understanding of others to your conditions, resolves in hating T more and resolves in a endless circle..
- people that generally wants to be a victims..
- People that have really, really obtrusive loudness of tinnitus. (those people are really rare and the problem is that majority of T sufferers think that they belong to that group, although they don't and nobody ( except themselves) can convince them that they can habituate.

As for Tinnitus loudnesses I usually ask myself:

If somebody would offered me that my company is acquired by Google for couple of hundreds million, and I would have to live on the island that have volcano that constantly tops 100 db of volume for the next 5 years, would I do it ? I would definitely thinked about. When this kind of ecomomy hits in my head it makes me feel a lot better ( If you can do something for 5 years, you can do it for much more.. )

 

Thanks for answering, Dr. Nagler. What prompted this question was I have been seeing people claim that TRT only works for mild tinnitus, or some people were asking whether there was an "upper limit" for which TRT can be effective. And I was contacted personally by someone personally who feel that there are cases in which habituation is an impossibility. So I wanted to get another view. And I had remembered that you said TRT wasn't always effective, so I wanted to know what those cases were.

That said, as I was reading your answer, I realized that I may have painted a big target on your back. And for that, I must apologize as I did not intend for that at all.

But agree with Dr. Nagler or not, there are certain things in his answer that that I think need to be highlighted regarding his views on TRT. And that is, he has admitted that TRT isn't for everyone. He's also admitted that there are unfortunate times when someone can do everything "right" with TRT, but it still isn't effective (I wonder why).

Of course, I think the part that will get people most riled up is when he said that there is absolutely no such thing as tinnitus that is too loud/reactive/whatever-else for TRT to be effective. So, I'll just say, that for those of you wondering, you now have his view on the matter.

 

I think TRT benefits the doctors more than us. Apart from being profitable it excuses doctors from knowing what to say or do when confronted with a patient with tinnitus. Would a doctor even know what to do if a patient came in with excruciatingly loud tinnitus which wouldn't stop? Tinnitus is one of those illnesses which nobody, much less, the doctors understands. TRT in my view is an inadequate solution to a problem which nobody knows how to cure. It was probably invented by people who have never suffered it.

 

But what would you say to those who claim to have been helped by TRT (or some other habituation protocol)? I do remember there was a regular poster here who was suicidal and was doing Neuromonics (I don't know all the details because I didn't follow her case that closely, so I could be wrong). She ended up habituating and I believe she credited Neuromonics for helping her habituate.

Seems that you can't discount those who claim to have been helped, otherwise you're only looking for results that fit your view.

 

I could say the same about you.

I would say theres not enough evidence to prove or disprove that so its inconclusive. Its all based on self reports which is flawed.

I read that most of us naturally habituate anyway. That is the goal of TRT and most of us do it automatically.
Its still a horrible noise though. Theres no denying that. If you work in a job involving music and critical hearing eg audio engineer or musician, then tinnitus is a terrible loss which cant be compensated.

 

You could, but if you think it's a reversible claim, then you'd have to provide evidence that I throw out results that don't fit my view. An example would be if someone claimed to have done TRT, it didn't work, and I simply dismiss his report. Do you have such an example of that from me? On the other hand, you really are dismissing the testimonies of those who claim TRT has helped.

Sure, but tinnitus is subjective. If a person thinks he has been helped and finds relief from tinnitus from something, then he has. Just as those who take Trobalt report a reduced volume of tinnitus. Is there any way to prove this other than take their word for it? Not that I know of. So should their testimony of Trobalt be questioned?

Yes, even Dr. Nagler has stated that most people habituate naturally. But he has also said before that there are those who do not habituate naturally, so they need help to facilitate it.

And yes, it is a horrible noise, and yes, it does take something away from us. I wouldn't argue that it doesn't.

 

Matt wrote:
1. Aren't bothered by their tinnitus or consider their severity a 1-3 on a scale of 1-10. Because I would guess the only way to help people who are generally not bothered by tinnitus is to make it go away completely, and that's not possible with TRT.

If U R not bothered by it you don't need to habituate.

Definition: Habituation is a decrease in response to a stimulus after repeated presentations. For example, a novel sound in your environment, such as a new ring tone, may initially draw your attention or even become distracting. After you become accustomed to this sound, you pay less attention to the noise and your response to the sound will diminish. This diminished response is habituation.

 

tinnitussufferer wrote:
I read that most of us naturally habituate anyway. That is the goal of TRT and most of us do it automatically.

Taking into account a course of TRT can last up to 18 months it's quite possible that habituation would have occurred regardless.

If I'm totally honest about treatments including TRT, Neuromonics and some other sound based therapies it's the cost. Some people don't have the many $1000's that these people charge so they may be excluded purely on that basis. And recently I posted about the association between some audiologists and hearing aid manufacturers where people with minimal hearing loss are coerced into buying overpriced expensive hearing aids unnecessarily.

It's a case of caveat emptor.

 

when i went to see a ent last year i went because i was getting frequent spikes and my H was getting worse and he wrote me a referral for what i thought was a custom plug maker and no it was for hearing aids not once did i complain to him about my hearing, i do have slight hearing loss but never complained about it, never was a issue. i was like what the heck, i asked why did he sent me here. he said that your doctor said you needed a hearing aids i was like no, i hear just fine. the ent couldnt give two shits about my worsening T and H.

 

That is the very problem I have with it and a few of thousand dollars later!

 

Mild T. Isn't it obvious?

Usually TRT practitioners claim that loudness does not matter. So essentially they say everyone's T is the exact same. If that were even logical, would T really bother us if we had to look for it? Why even bother classifying its severity on a scale from 0 to 10?

Now you could go about and say T is a subjective phenomenon and people imagine the severity of their ailment, but that's tantamount to claiming that all hearing loss is the very same. Or simply put they're crazy. They actually don't know if their T is as bad as they think. They would need to experience it for years to come to give an objective assessment of their agony. What about those that had first mild T and thereafter it got worse? Again, they probably just imagine things?

The thing is this, some T people/patients have it worse (or/and get it worse) than others. Period. Negating the pain of others by stating loudness does not matter, it's your choice to suffer or not, mind over reality, embrace the pain, your emotional reaction causes the misery, T is not your problem but anxiety -- are all blunt ignorant comments.

Matter of fact is, we do not have a choice. If we did, we wouldnt have T or got it resolved. Moreover, I believe those that consider themselves as 'cured, non sufferers' are the first to line up to take a legit treatment if there ever should be one. And no, drugs ain't a legit treatment but a very short term fix.

How can you tell that extreme reactive T is a really rare case, and that most just think that they belong to that group, although -- according to you -- they do not?

 

I understand. But I'm not sure you understood what I was trying to say. Dr. Nagler has said before that TRT has an 85% success rate and that not everyone can be helped by it. I was trying to weed out the obvious cases of people who wouldn't benefit from TRT, such as people who aren't bothered by their tinnitus to begin with. And I wanted to know if that group was in the 15% who apparently don't do well with TRT, which Dr. Nagler said he did not factor into that statistic.

True. But there are people who have had tinnitus for years and still aren't habituated. It'd be interesting if we knew of someone who has had tinnitus for 2+ years or so, never habituated, and then went through TRT or some other habituation-based protocol and then habituated. I don't know of anyone, but then again I haven't exactly tried to research or anything. But if we did have a case like that, then that may be a good example of the efficacy of TRT.

Based on what Rich is saying, it sounds like he has gone through TRT and it is questionable to him. So he'd be a good source for supporting the view that TRT isn't effective or is questionable.

 

Just to be clear, I was speaking of people who are completely deaf. I mean, 100% deaf in both ears, but they hear tinnitus.

 

TRT is not about changing your T. It's about changing your emotional reaction, your mindset about it. So if you're having issues with your mindset then TRT probably works in 85% of cases. However, if you're having issues with extreme reactive killer T it's a completely different constellation.

Those that couldn't hab. after +2 years never will hab., I'd say.

 

Regarding habituation and therapy in order to overcome and/or facilitate habituation, I can share the following piece of literature (as a "counter" example):

There are highly specialized neurology centres in two places that I know of:

1. Switzerland: http://sonimodul.ch
2. Belgium: www.brai2n.com

In Switzerland, patients who request an appointment are in advance asked to have made attempts to treat and/or overcome their tinnitus via therapy before they are "eligible" for an appointment. Typically, in the case of tinnitus, they are also asked to submit an audiogram. In addition to that, they must have had the condition for a year or more. A high resolution EEG scan is then performed at the clinic. Regardless of the exact finding, however, patients will typically be diagnosed with "chronic and resistant tinnitus" as in "chronic and (drug/therapy) resistant tinnitus" (a diagnosis only an expert within the field of neurology would have the competency to make). Patients who request treatment at these clinics typically suffer from severe debilitating tinnitus and/or other conditions. All other options have normally been exhausted.



Source: www.fondation-fondamental.org/upload/pdf/strasbourg_2011_for_fondamental_2.pdf


So yes, sometimes there are patients who cannot be helped via therapeutic approaches.

attheedgeofscience
10/MAY/2015.

 

Just in case it is not entirely clear: "therapy" in the above context most probably means "drug-therapy" (as opposed to counselling-therapy which I suspect some members might think). Therapy in the above context may also include both drug- and counselling-therapy. Regardless of the exact meaning (as per the abstract provided in the quote, above), I can say that in the case of Prof. Jeanmonod, he typically would "insist" on tinnitus-patients having tried at least one drug-therapy to improve their tinnitus and in addition try to overcome their situation with therapeutic counselling/management strategies (e.g. TRT, CBT). Besides that, patients need to have had their condition for a year or more before eligibility can be considered.

As a patient, myself, of Prof. Jeanmonod, I had not fulfilled the 2nd part of the requirement (i.e. therapy-counselling) nor had I done any traditional drug-therapy such as Tegretol (at the time I made the appointment in March, 2014):

www.tinnitustalk.com/threads/hifu-high-intensity-focused-ultrasound-surgery.276/page-7#post-73183

Also back in March 2014 when I spoke with the professor, I was not entirely sure that I needed to see him as I had already improved at that point, but I none-the-less decided to go ahead with the appointment (as there was ½ year waiting list for a diagnosis + ½ year additional waiting list for surgery). So in the interest of not wasting anymore time, I decided to go ahead and make the appointment. At the same time, I was also interested in receiving an objective diagnosis for a subjective condition (something only these specialized neurology centres are capable of). People might wonder why I was given "permission" to by-pass the standard rules i.e. a minimum of one attempt of treatment via drug-therapy and one attempt via counselling-therapy. I don't know the exact reason to be honest, but I suspect it might have been due to the cost I had already incurred at that point: $60.000 for two stem cell treatments + cold laser therapy.

By going to see the professor, I also became the first TT-member ever to report on the findings from the appointment. The results and account of the full day consultation can be seen here:

www.tinnitustalk.com/threads/hifu-high-intensity-focused-ultrasound-surgery.276/page-8#post-75063

attheedgeofscience
10/MAY/2015.

 

For me it's pretty obvious that people on this board have besides Tinnitus also problems with anxiety, depression and fear. I believe that combination of those things amplifies the severity of Tinnitus a lot and I would say that because of those factors a lot of people put themself into "I have extreme tinnitus and could not be helped" group instead of "I can adapt to this" group.

It's obvious that with really obtrusive T, the quality of life suffers. Probably majority of people does not have as obtrusive T as is found on this video:

Tinnitus Nightmare

But even with this type and even louder Tinnitus I firmly believe that person can adept to the point where the life is still fulfilling and worth living. And I don't say that lightly since I also have my T companion which is pretty dam loud. Static hiss accompanied with random whistle effects at the similar loudness than I guess human voice in normal conversation.

I consider myself fairly adapted to my T. Tinnitus does not control my life or is making me miserable, but obviously, when the better treatment will be available I'll go for it right away. Even more, I try to speed up that process already by working really hard. If I get lucky and sell my business for a lot of money, I'll invest a considerable amount of it to people like @attheedgeofscience and others from team Trobolt, who have will, motivation and determination to really speed things up.

I'll be extremely happy when we find the cure for Tinnitus and hearing loss. I believe that science will get us there eventually. Until than I'll take Tinnitus as my companion and I'm not trying to fight it since there is nothing much to be done.

 

theres more urgency to cure cancer and other diseases than tinnitus. And if tinnitus was cured all the companies that market tinnitus cures will no longer be in business.

 

This is it. Couldn't Agree more. Its easy talking with mild T or being an ENT...But when you have several intense (deep rotating) sounds that are louder than a concert then you will really get annoyed by such arrogant quotes like Dr.Naglers signature. TRT is antiquated for severe T but good for returning customers I guess.

 

The same can be said about cancer and the other diseases. Tinnitus, I'd think, isn't nearly as profitable as cancer. And I'm sure the VA is tired of having to pay service members disability.

That said, I suspect at least some causes of tinnitus will be cured once a cure for hearing loss is found. Hearing loss fortunately is pretty high priority, and since at least some tinnitus is caused by that, it may be a "roundabout" treatment/cure. Only real problem is that a cure for hearing loss might not be exactly around the corner.

 

it may not be profitable now, but imagine if they invented a drug to inhibit tinnitus. Millions suffer from tinnitus compared to cancer. It would bring in plenty of profit for the drug companies. so its more profitable to invent a temporary solution than a cure.

Yes the same can be said for cancer and every other disease. Its always a question of more profit rather than finding a permanent cure.

 

If you believe in adaptability, I'm not sure why you defend habituation, because it's completly different things. Adaptability is that you manage to get by somehow, and still find a meaning in life. Habituation is that you stop being bothered by your T at all.

If people are able to adapt for a long time, which in practicality means they're able to manage their lives instead of becoming wrecks, they'll probably become more indifferent to the T-sound in itself, so I guess you could say some degree of habituation kicks in eventually.

If the whole idea with TT is to help each other out, maybe a more realistic approach would be an option. You can't become indifferent to an unpredictable condition of batshit-crazy-ass-looney-bin T just because you set your mind to it. If you start making statements like that, using phrases as "people that generally wants to be a victim" on a tinnitus forum, of course others will get on your case real quick. But if someone is hellbent on trying to survive and make the most of it, he or she will probably make it. The individual must decide for herself if it's worth the trouble. Personally, I think I can try to get by just as well as not, so that's what I do.

There's a lot of meaningfull work getting done here on TT: Some very ambitious members has been keeping close tabs on the scientific development, which to my personal surprise is showing some promise. You can find information on how to protect your hearing against further damage, how to deal with a visit at the dentist, treatments that are scams, and sleeping meds that do the trick. People who are in pieces and need support will get it, and there are people who have got by with loud T for a long time who share their experience. All in all, it's quite impressive for a bloody Internet message board.

I'm a little surprised that there's so much heated debate related to the question if peoples unability to stop being agonized by their T has to do with the challenges these symptoms give rise to, or some psychological issues. The question seems to answer itself even before you've read the sentence to finish.

 

I don't know @Vincent R. Maybe I'm mistaken, but for me habituation and adaptation is more or less the same thing.. If achieved, it can drastically reduces the impact that Tinnitus has on your life. (Even if you have really loud T)
I'm hearing T as I'm writing this and although I can hear it clearly as a day, It does not make me miserableness and a wreck. Adaptation, habituation.. I couldn't care less, to me is just a semantic. The only thing I care about is to not let T drive my life. I'm convinced that majority of people can achieve the same thing..

 

I can 100% agree. In the meantime I don't know if I have a reactive depression to T or if it is a clinical depression. Was never depressed before, but a burnout caused T, depression and anxiety. All I am fighting with. On some days better, on some days worse. I would really like stopping T for some days and see if everything else improves. T is difficult to handle, but depression is a killer. Nevertheless, it is better than in the beginning - when I had anxiety 24/7 non-stop for months.

 

But you also know that anxiety, depression and fear are all the most common symptoms of severe T ?

You see, now imagine T would resolve. Would there be any room left for being depressed or feeling fear?

 

Maybe, but while there is nothing much to be done regarding Tinnitus loudness and pitch, there can a lot be done regarding anxiety, depression and fear.. That is why I believe that saying to yourself that your case of Tinnitus is so severe that cannot be helped is not the right way.

 

You just wrote a paradox.

If there's nothing much to be done regarding T, why should I tell myself it can be helped? Anxiety and fear is not my problem. T is! It interferes with everything. Heck, I can't even wash my hands or type on this keyboard without T exploding. It's insane!

Now the video you posted, if you really believe that his T is obtrusive you should here mine. Yeah, you should..