William Shatner & Habituation

@Dr. Nagler Pardon my ignorance, but what is six week syndrome? Do you mind sharing what the diagnosis was that made the tinnitus worse from sound therapy?

 

When discussions become lengthy, I can imagine he had a talent for summing things up.

 

So the reason that sound therapy is such an essential component of TRT has to do with how we perceive sensory signals, but also has to do largely with neuroplasticity, the ability of neurons to create new synapses and hence the ability of the central nervous system to develop new pathways within itself while not actually increasing the number of neurons. Neuroplasticity occurs as the result of various "insults" (scientifically speaking) to the brain, and among the most common of these insults are environmental. The sound therapy, when tailored to the specific TRT category and various individual needs within those categories, is essentially an environmental insult that serves to promote development of new pathways, some anatomical (structural) and some physiological (functional). Approximately 1/4 to 1/3 of TRT patients who are doing the sound therapy exactly as they have been instructed to by their TRT clinicians will find that at some point between one and two months after starting TRT (hence the name "six-week syndrome,") their tinnitus gets somewhat louder temporarily. This circumstance always reverses itself with a few simple tweaks and is actually felt to be a good overall prognostic sign, indicating that new pathways are already starting to form even at this early stage - they are just developing in the wrong direction initially.

You mean the one time that I made a mistake and my patient was worse off for it? I'd really prefer not to go there. And, in fact, I think it's time for me to leave this thread entirely, having pretty well dominated it for several pages now responding to questions and clarifying various matters of concern.

Here's to silent days ahead for all.

 

He would make a perfect public speaker!
At least medical world would know what we think of currently available "treatment" for tinnitus!

 

Why don't you address a perfectly legitimate question? You are sure eager to join a thread the minute you spot an opening for spewing your TRT pseudo science. So why can you not answer a legitimate question that follows in the slipstream of the questions you yourself are responsible for?

Are we talking about a repeat of the following scenario?

 

Yes, so essentially you could have no T whatsoever, and TRT would still work. Because according to TRT practitioners, it's not about T or how loud it is, but about your 'reaction' to it. If you do not react, nothing can happen, and by that definition you shouldn't suffer.
The next time someone punches you in the face, just smile. And the pain you may sense is just a phenomena in the brain with unique neurological pathways. Nothing to worry about.

I did. It's 'cause all the high frequencies (left) are offline. The auditory cortexes work together simultaneously in stereo. Now when sound enters the right (no hearing loss) ear the neurons in both auditory cortexes react. Unfortunately in the left dwells T and since T (neurons that get no signals from the cochlea) is deaf it can only react in extreme loudness.

Misophonia when having T? That's wishful thinking.

 

@attheedgeofscience I agree. It seemed like a perfectly legitimate question, especially for people who do not respond well to sound therapy. Or for people with reactive tinnitus. May I ask your reasons for not liking TRT? Is it only effective for some and not others? I know that one size does not fit all when it comes to tinnitus. I am trying to glean as much information as possible, knowing there is no fail safe approach. What has been your treatment of choice? I am wondering what would be your advice for people who cannot tolerate sound therapy?

 

To many people's dismay, @Dr. Nagler has a habit of only answering questions and discussing topics that promotes his own interests.

 

Tinnitus is a medical condition; not a psychological one. It therefore belongs to the discipline of medicine and biology (not psychology or psychological principles). A person I hold in high esteem once wrote the following:

I have often heard Dr. Nagler mention phrases with content to the following effect:

The "question" - the practical question - is then: why are people not shouting from the rooftops about TRT? Well, Dr. Nagler has (developed) a standard answer to that inquiry as well:

What amazes me is that Dr. Nagler has frequented the various tinnitus boards for almost two decades (I believe he has +7000 posts on the TSMB website, for instance!)...



...and yet I still have not been able to get hold of a single former patient of his willing to testify to the efficacy of TRT (in public):

Furthermore, Dr. Nagler likes to use phrases such as...

...but I am not exactly sure what that means! Indeed, as one person astutely observed:

Dr. Nagler tends to have standard phrases prepared for the ailment of tinnitus - and here is a "classic":

At a first glance it all seems logical and clear - just like math on a piece of paper - but upon a 2nd read, can anyone seriously explain to me what the hell that means? And can anyone seriously explain to me - in context - how that has any impact and/or relevance to a tinnitus sufferer? After doing TRT your tinnitus loudness will be just the same. Nothing has changed...

I have taken the scientific/medical approach. Essentially I have looked into any and all clinical trials that might be available. None were available to me (due to my country of origin, Denmark, and as a resident of Germany). I have furthermore tried to get hold of drugs like AM-101 and OTO-311 for non-study purposes (but the pharmas declined, despite a formal request from an ENT surgeon licensed to partake in clinical trials). I ended up doing stem cell therapy (x 2) and LLLT. I have also done a brief four rounds of Flupirtine.

I would not recommend the approach I have taken unless you are financially comfortable, because everything I have done comes without any proof of a successful outcome (i.e. you could end up wasting your money). Stem cell therapy is, however, always a welcome treatment (anyhow) as it addresses a number of issues within our bodies as we grow older (and may develop certain age- and/or autoimmune- diseases: in my case relapsing uveitis and eczema).

I should also mention that the causes of tinnitus can vary (so called sub-types) - which is another reason why any future treatment may not be equally effective in all cases.

Since Dr. Nagler has apparently offered you free TRT therapy, I would at least consider how that goes (it's a first on this board despite many requests from my side). And since it is free, what have you got to lose?

attheedgeofscience
29/APR/2015.

 

Carm, I have answered every single question posed to me in this thread promptly, respectfully, and completely to the very best of my ability... save for one. Here is the question I did not answer:

Do you mind sharing what the diagnosis was that made the tinnitus worse from sound therapy?​

But the fact of the matter is that in this particular circumstance I do mind. As I explained earlier, I made a mistake, and my patient suffered the consequences of my error. I mis-categorized a gentleman who had entrusted me with his care, and consequently I used the wrong TRT protocol. He would have been just fine if I had used the right TRT protocol - but I screwed up. It happened fifteen years ago, and it affected me so greatly that even today I recall it as if it were yesterday. So I simply do not like talking about it. If you or anybody else cannot understand ... if you cannot bring yourself to respect that tiny little piece of my privacy ... then there is very little I can say except that it makes me very sad - for you.

 

You expect people not have their own beliefs/logic? And if my own thoughts rule me out of this treatment it is very very clear this is a placebo type treatment. Sure you can help the types that can take a sugar pill and feel better, but what about the rest?

 

To the contrary, I absolutely expect people to have their own beliefs/logic. It is totally normal for people to have their own beliefs/logic. But if a person is going to consider a treatment protocol that might in part run a little contrary to those beliefs/logic, then I expect him or her to be just a tiny bit open-minded about it. You do not have to "believe-in" TRT for it to be effective. But if you are not going to at least be open to the possibility that there might actually be something to the model upon which it is based, then in my opinion you are wasting your time. I suspect that other clinicians will gladly take your money - indeed @svintegrity has had some experience up close and personal with one of them. But I think that for you TRT would likely be a waste of time - because from what I can glean from your post above, you are not at all open to the possibility that there is even the smallest amount of validity to the model upon which it is based. That is not in any way a criticism of you. It is a simple non-judgmental observation. If I am wrong, then I stand corrected. It surely would not be the first time I was wrong about something.

Like I just said, your own thoughts would rule it out only if you are not open to even the slightest possibility that those closely-held beliefs of yours might in some small way be incorrect. Which from what I can gather pretty much describes your situation, my friend. That has nothing to do with placebo. It has to do with common sense.

As I have written before, I only see 9s and 10s (and a very few 8s) in my clinic. I interview every prospective patient by phone for at least 30 minutes ahead of time. There is not a sugar pill in the world that will help the folks who are ultimately offered appointments. What you refer to above as "the rest" ... are the only people I am interested in treating. Moreover that's how I think TRT should be conducted in general. In my opinion too many people are offered TRT ... and they are offered it for the wrong reasons. That's what can happen when there is no standardization or certification.

And far as the fine folks on this board go, given a little time the overwhelming majority of them will do very nicely with just some information and some reassurance, both of which they can get right here on Tinnitus Talk.

 

Stephen, I know. Nevertheless it is still tough.
Sometimes (oftentimes) I have multiple high-pitched tones above 14 or 15 kHz in my head.
Not reacting to them is damn difficult. But I do my very best.

Thanks for being with us here.

 

I realize it's tough. I know it was tough for me. If we wanted "easy," you and I have chosen one hell of an affliction, no? Severe intrusive tinnitus is damn tough!

And who can ask for more than that?

You are very kind to say that, Martin. And you are most welcome. I must admit that it's been particularly difficult for me lately. You'd think that folks could criticize TRT without taking personal swipes at me. There is much about TRT that deserves criticism, but nobody deserves to be treated the way I have been treated here of late. The admins have done a lot of "surgery" on this thread, yet still it continues.

 

I know, I have seen that. I think it is not fair.
But I don't want to jump between two front lines. Bad enough that we have those at all here.
In some way, everyone has suffered or is still suffering. So we should help each other. T is seriously enough.

Personally I can only say that sometimes you made statements which set me back like: "Germany has no real TRT."
Doctors here in Germany really try to help as much as possible. I met really caring people. I cannot say if it was real or unreal TRT.

Maybe you promote TRT too often, I really don't know. I know of some people who made TRT and it worked.
If I would live in the Atlanta area or even many miles away, I would definitely visit you and ask for your guidance. I would not care if it is TRT, CBT, psychological assistance or whatever. But I think that only someone with severe T can understand and support someone with severe T. And this counts.

I am grateful that you are here on the forum. If there is something I do not agree with, I simply do not agree with it. It is an open forum and here are many different opinions.

It is important for such a board having a doctor. In particular someone who understands our suffering.

This is the only statement I make about this. I am not in the shape doing any discussions.
It is just my opinion and I need my energy for overcoming this crazyness in my head.

 

If I may butt in with a general advice, I think that if the body is in a phase of recovory, the first thing to do is to take it very, very easy and see how well it can repair itself on its own. If I had suffered previously from a treatment that were supposed to help me, I'd avoid it like the plauge, no matter what I was told and by whom.

 

@Vincent R I appreciate your sage advice. We are on the same page for sure! Butt in anytime.

 

I remember thinking the exact same thing! LOL..in fact I count my shhhhh t as my good t..

 

Well I think he was describing the sound..I call it " letting air out of a tire" it fills my entire head and I can hear it all the time..

I still don't consider it my bad T. Maybe it was his reaction? ! which is why TRT worked for him..since that is what TRT is about..and personally I was shocked like @Telis when he described it on tv..I thought he would say it's like a siren or something. .not shhhhh..I thought to myself " no wonder he is ok now"

 

Lynn, I did TRT a few months before Shatner did. We both had the same TRT clinician.

And while Shatner may have described his tinnitus as similar to the sound of letting the air out of a tire, my tinnitus is a cross between a screaming teakettle and a roaring jet turbine. But just like Shatner, I am ok now too.

 

He also said he took off the TRT masker becasue he found it to be louder and more annoying than his T. You can read many interviews with him, it seems pretty clear that his T is pretty minor but he had a very hard time with it. I like shatner a lot and I'm very thankful he is bringing awareness to tinnitus but IMO it's sounds like he has a pretty minor case of T, very easy to habituate to.

 

Mmmhmm. So, the widespread and evidence backed school of thinking that has concluded that psychological responses have a significant impact on the way that chronic pain signaling is expressed is... completely incorrect? And people like me who report success with such methods are... Incorrect in our understanding of ourselves?

 

Shatner discontinued wearing TRT devices because they were more annoying than his tinnitus. But the devices are not annoying at all if they are set properly. And that is part of what the TRT clinician does - make sure that they are set so they are not annoying and do not interfere with communication. So Shatner started TRT because his tinnitus was so annoying to him that he was even contemplating suicide. And within six months or so the devices, which are not annoying at all, were more annoying than his tinnitus. That's exactly what is supposed to happen in TRT. And it happens regardless of how loud or pitchy the tinnitus itself might be!

 

Now just a question. Does it matter one bit how loud his T. is or what it sounds like. Because to me it doesn't. What matters is that he has tinnitus, and that it drove him mad enough to consider suicide. Everything else is irrelevant. How we deal with our T. is very personal and for him it's bad. That's enough.

 

This reminds me about the competence of technicians in the audiology field. Some are just not qualified to work with T or hyperacusis etc. This also applies to hearing-aids, that are now "digital", which audiologists tweak/calibrate using their computer. If one has hearing-aids, patients can request to set programs to help mask tinnitus. However, the majority of audiologists do not have this training and instead refer patients to ENTs or Otoneuros. who do not work with hearing-aids or just set the programs to be too loud, which worsens T. Circular cycle.

I strongly advise anyone to see a clinician educated in Tinnitus to reprogram their digital aids to try masking their tinnitus, hyperacusis & hearing-loss. If the audiologist is not qualified or does that *shrug* - Go somewhere else.
I am not sure the difference between these programmed hearing-aids vs. TRT.
Some people have aids just for tinnitus-masking reasons. Only a few clinics provide these services - odd.

 

I think you're probably right in what you're saying. But I think the point @Dr. Nagler was making was that Shatner became so habituated that the thing that once was a relief to him became more annoying than the thing that used to torment him.

One of the first signs I had when I was habituating was one night when I realized I was simply too lazy to turn on external sounds to fill my room. I figured that if I felt like that was becoming a hassle, then my tinnitus wasn't as annoying as it once was.

 

It matters when it comes to TRT and habituation, yes 100 percent. This factor seems to be dismissed for some reason, I guess people are fearful to discuss the condition itself, I don't know, it's strange. There area two factors- your response and the severity of the condition. Yes they ABSOLUTELY BOTH matter.

 

So the condition itself doesn't matter? Loudness or pitch play no part? "It just happens regardless of how loud or pitchy the tinnitus itself might be" This is starting to really sound goofy now! Come on!

 

I have to agree with @Telis that it does matter how loud the tinnitus is. To me saying volume doesn't matter is sort of like saying how "painful" a headache is doesn't matter to how well someone can tolerate it. After all, if volume didn't matter at all, then there would be no such thing as a "spike". I understand that the protocol for habituation might be the same, but I think someone with a quieter tinnitus would habituate faster than someone with super loud tinnitus. That's common sense.

Just as I would habituate a lot faster if I were hearing a sound at the level of a whisper than I could ignore a sound as loud as a blender. I might be able to eventually ignore the blender, but not as fast as I would a whisper.

I think the down playing of volume doesn't serve to help anyone and defies common sense.

 

Back when I developed severe intrusive tinnitus in the mid 1990s, very little was written about TRT. There were a few articles in the literature, but that was about it. There was no Internet to speak of, at least as far as tinnitus boards or discussions about TRT were concerned. Thus, when I went up to Baltimore to see Dr. Jastreboff in abject misery and total frustration (having already tried a bunch of other approaches to no avail), I had no preconceived notions regarding what TRT was about. All I knew was that there was a guy in Baltimore with a relatively new approach to treating tinnitus patients ... and I was desperate.

So my wife and I spent several hours in Dr. Jastreboff's clinic (like we had spent in a number of other clinics), and we listened to what he had to say after he evaluated me. And what he said made absolutely no sense to me at all. What he said was that habituation (a new term to me) was all about reaction - and using his TRT approach, the loudness and pitch of my tinnitus were irrelevant. My thinking was that this guy seems very nice and very sincere, but he really doesn't have a clue about what I am going through ... because my tinnitus is not just loud, it is thunderously loud. My tinnitus is not just high pitched, it is a screaming teakettle. But I figured I was up there already - so what the hell. I went through my first TRT counseling session, got my wearable broadband sound generators, and returned to Atlanta. My wife was at my side during the entire visit, TRT counseling and all, save for when I was in the audiology booth.

Well a day or so after I got home, I told my wife that while Dr. Jastreboff seemed to know a good bit about tinnitus, he could not possibly know a thing about my tinnitus - because first of all he could not hear my tinnitus ... and second of all there was absolutely no way that he was right about loudness and pitch being irrelevant - TRT or no TRT.

So my wife asked me if I was 100% convinced that loudness mattered. And I said that yes, I was 100% convinced that loudness mattered. Moreover I told her that because my tinnitus was so incredibly loud, there was absolutely no possible way that TRT could work for me and that once again we were wasting our time and money. I apologized to her for how I was ruining our lives and burning up our savings, I said that TRT could not possibly work for me, and I collapsed sobbing in her arms. I was done with TRT. It was a pipe dream, and there was no way that it could work for me - not as loud and high pitched as my tinnitus was.

All true.

After I settled down just a little bit, my wife asked me a question that pretty much saved my life. She asked me if there was even the most remote possibility that I was wrong about what I had just said. Or was it really and truly a 100% certainty. I said that I could not see how Jastreboff could possibly be right about the loudness thing - especially given how loud my own tinnitus was - but, yes, I guess there was just the tiniest possibility that I might be wrong about that.

She looked me in the eyes and said, "Then I think we should continue with it."

You know the rest of the story.