Failing TRT ...

Hi Dr. Nagler,
In a recent post, you stated that 15% of people may not respond to TRT.
Would you clarify the reasons this could possibly be?
My tinnitus for example reacts to static frequencies around the same frequency as my tinnitus. So white noise type sounds seem to bring it out more.
Or maybe research shows those 15% as not sticking with the therapy etc?
Thanks, Dr. Nagler. Always love to read your replies. Glad you are here.
Lisa

 

Hi @Lisa88 -

There are a number of factors that supposedly decrease the likelihood of succeeding in TRT. They do not prevent success - far from it. But they ...

You know what? I'm having lunch with Dr. Jastreboff today. Let me run this by him and get back to you.

Dr. Stephen Nagler

 

OK. Back from our Philly cheese steak and beer lunch. A true gourmet delight!

Had a very interesting and wide-ranging discussion with Dr. Jastreboff. We talked about a number of issues, including the question I brought to him from this thread: What are the factors that tend to decrease the chance of success in TRT? He listed four ...

The first is involvement in medical-legal action, including disability claims. It's not a question of malingering or anything like that. It's the fact that folks so involved have to fill out forms every month explaining just how miserable they are and how their tinnitus is adversely affecting their lives. Not a problem in-and-of-itself, but that totally legitimate and necessary process is at complete odds with the goal of TRT, which is basically for tinnitus to no longer be an issue in your life.

The second is in cases where exposure to a loud sound results in significant exacerbation of tinnitus and the exacerbation lasts more than 24 hours. It's a bit more complex than that, but there you have TRT Category 4 in a nutshell.

The third is patients on high doses of benzodiazepines, which he feels inhibit habituation.

And the fourth, which he feels is probably the worst, is flag-waving. I'll explain what flag-waving is in just a moment, but of interest are two factors that Dr. Jastreboff strongly feels do not adversely impact the chance for success in TRT. Those two factors are bipolar disorder and OCD (Obsessive-Compulsive Disorder).

Now for flag-waving. Flag-waving (at least in TRT) is when people derive some form of secondary gain from excessively discussing their tinnitus. It might be in the form of positive strokes from talking about one's tinnitus with friends and family day after day instead of maybe bringing it up once a week. It might be in the good feeling that a tinnitus sufferer gets from reassuring others who are worse off. You get the idea. The operative word here is "excessive" – and Dr. Jastreboff took great pains to point out how tinnitus boards and chat rooms represent extremely fertile ground for that sort of thing. He went so far as to say that when a TRT patient is an active participant in a message board or chat room, that patient is pretty-much doomed to failure. Again, I'm not talking about checking in for a few minutes every couple of weeks. I'm talking about spending an hour or more on the boards being a flag-waver or being in the midst of flag-wavers several times a week. Dr. Jastreboff feels so strongly about the adverse effect of message boards and chat rooms on TRT success rates, that he instructs each and every TRT patient of his to strictly avoid that sort of thing until after TRT is complete. I personally don't feel quite as strongly as he, but I do understand where he's coming from.

As I see it, though, Dr. Jastreboff's list is really only half the story. Of equal importance to the question of why people might fail TRT, indeed very possibly of greater importance, is the question of why TRT might fail people!

So here are some of my own thoughts in that regard ...

• Expectation mis-match. I lay this one squarely at the feet of the TRT clinician, who might encourage a patient to embark upon TRT without first clearly explaining to the patient what TRT can and cannot offer in the way of treatment outcome. If a patient goes into TRT expecting that his or her tinnitus will get softer or possibly even go away, that patient will be sorely disappointed at the conclusion of treatment. It is incumbent upon the TRT clinician to thoroughly evaluate the patient and his or her expectations to make sure that the protocol will meet those expectations.

• Poor communication. Again I lay this one squarely at the feet of the TRT clinician. TRT involves in-depth counseling. You don't just hang a couple of devices on the patient's ears and call it a day. In TRT the counseling protocol is every bit as important as the sound therapy protocol, perhaps even more so. And TRT counseling involves a lot of communication. Some clinicians simply do not have those skills. They might know how to talk, but they do not know how to listen.

• Lousy TRT. By this I mean that many clinicians (and I mean many) claim to be doing TRT, but whatever it is that they are doing ... it isn't TRT. I addressed this issue and the lack of credentialing in another post – so I'll just copy it below:

"With TRT, since the name is not trademarked, what you see is in many cases not what you get. And to my way of thinking, that represents an enormous problem for the tinnitus community. Anybody can call himself or herself a "TRT clinician." Moreover, since there is no credentialing or standardization in TRT, even if a clinician has read Dr. Jastreboff's book and taken his course, there is no assurance that he or she has retained the material or even understood it in the first place."​

And finally, even if everything is perfect – ideal patient, knowledgeable experienced clinician, all the stars in alignment – still the outcome might be disappointing. So clearly there are factors that we do not fully understand.

In my opinion what's important to realize in talking about the 15% who for whatever reason do not do well with TRT is that the other 85% do indeed succeed to their great satisfaction and relief. And then there's my personal favorite TRT statistic: 100% of those who ultimately succeed are pretty well convinced at the outset that with their luck they'll wind up in the 15% who do not do well ... until they start getting better!

Dr. Stephen Nagler