William Shatner & Habituation

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An interesting way to look at it.

Here's an alternative view: Everything in life is a compromise. We live in a world of grays, not a world of black & white. If TRT does more harm than good for mankind (which I seriously doubt) then do TRT, get better, and devote the rest of your life to making a difference in the world. That's what I did, anyway.

Well, I started studying molecular biology a year after I got tinnitus. I would really, really like to work with tinnitus research but then after I got my degree I saw that there are very few job openings for molecular biologists around here so now I'm studying computer science at the same time as I'm working for the authorities of public transportation. I am really hungry for working with this but I can't fund a lab by my self.
 
For US-based patients, TRT would be a lot more affordable if it were covered by insurance. From two sources, insurance has not covered TRT because it has been deemed to be experimental at this time.
Well, the majority of my patients are successful in their efforts to get reimbursed for TRT by their carriers. So I cannot speak to that. Maybe it's because I am a physician. I don't know.

So in order to make TRT affordable, at the very least, TRT needs more clinical trials with randomized controlled studies and long-term follow-up evaluation. Which takes me back to my original point about Cochrane Review's assessment of TRT.
Well exact what percentage of funds that are now devoted to research towards a cure would you suggest devoting to TRT studies?

That said, to make TRT more affordable, we need better studies.
I hear you. So again, what percent of funds for research towards a cure would to shift to TRT research? I mean didn't you just tell me that we are devoting too much space here on Tinnitus Talk to TRT and habituation? And that space doesn't cost a single research dollar.

To make TRT more widely available and more standardized ... well, I imagine TRT would become more widely available if there were better studies showing its efficacy. And more standardized, well that seems like something that would be in the jurisdiction of the authorities on TRT: http://www.tinnitus-pjj.com/
Right. And I have discussed it with Dr. Jastreboff many times. But he's just not interested.

stephen nagler
 
Well, I started studying molecular biology a year after I got tinnitus. I would really, really like to work with tinnitus research but then after I got my degree I saw that there are very few job openings for molecular biologists around here so now I'm studying computer science at the same time as I'm working for the authorities of public transportation. I am really hungry for working with this but I can't fund a lab by my self.
That doesn't mean you can't devote yourself to helping mankind. It just means you can't do it with dollars.
 
NONE, if you ask me!
Right. I agree. None. I would not shift a single dollar of research towards a cure to TRT research. So why in the world is @marqualler talking about the need for more TRT research (see quote below) if nobody's going to pay for it!!??

"So in order to make TRT affordable, at the very least, TRT needs more clinical trials with randomized controlled studies and long-term follow-up evaluation."
 
Well exact what percentage of funds that are now devoted to research towards a cure would you suggest devoting to TRT studies?
Right. I agree. None. I would not shift a single dollar of research towards a cure to TRT research. So why in the world talk about the need for more TRT research if nobody's going to pay for it!!??

The point I was making wasn't an "either/or" scenario as you seem to be suggesting -- I simply cited an ongoing study for TRT which might be able to prove efficacy. As a CPA by trade I feel very uncomfortable quoting percentages without financial statements and source material in front of me so I will decline to answer your question quoted above.

And I have discussed it with Dr. Jastreboff many times. But he's just not interested.

Is there a reason why he is not interested in standardizing TRT?
 
The point I was making wasn't an "either/or" scenario as you seem to be suggesting
But it is an "either/or" - the Cochrane Collaboration is simply not going to hang its hat on a single study, no matter how meticulously it is carried out. It's going to take a number of independently conducted controlled studies yielding the same result. One will not do it. Not by a long shot.

@marqualler, the reason some insurance companies don't cover TRT isn't because of the Cochrane Collaboration. It's because they can get away with it. People just give up when they're told "no" instead of going through a lengthy appeals process (which is possibly where my own patients fare a bit better in that battle since I'm an MD.) I mean you don't think insurance companies are going to shell out even one cent in benefits that they do not absolutely have to, do you? And even when they do eventually let loose with those dollars six months or so later, all that time they've been collecting interest on your benefits!!!

Is there a reason why he is not interested in standardizing TRT?
I believe it's a matter of time constraints, but you'll really need to check with him on that. I do not want to speak for the man.
 
Of course you'd do TRT. So maybe while continuing to push for the cure, we should also push for more affordable, more widely available, and more standardized TRT??!!

Perhaps I misunderstood your point above--my initial read was that you were advocating for more affordable, widely available and standardized TRT. I responded in kind as to to how that could be achieved. It appears that based on the quote below:

Right. I agree. None. I would not shift a single dollar of research towards a cure to TRT research. So why in the world is @marqualler talking about the need for more TRT research (see quote below) if nobody's going to pay for it!!??

You were making a facetious point. Clever, I must say. :)

The reason some insurance companies don't cover TRT is because they can get away with it. People just give up when they're told "no" instead of going through a lengthy appeals process. You don't think insurance companies are going to shell out even one cent in benefits that they do not absolutely have to, do you? And even when they do eventually do let loose with the dollars six months or so later, all that time they've been collecting interest on your benefits!!!

That might be true--I am no fan of how and what health insurance companies cover. But like you said, most people would give up rather than going through a lengthy appeal process. If TRT was a "covered" treatment from the get-go, it would make it more affordable, and thus more palatable for the average sufferer.
 
If TRT was a "covered" treatment from the get-go, it would make it more affordable, and thus more palatable for the average sufferer.
Right, but carriers have always been able to get away with this sort of thing. So getting them to cover TRT outright (i.e., without appeal) will take a number of reliable and independently verifiable double-blind randomized prospective studies, which given the nature of TRT (i.e., you sort of know when you are getting it, yes?) is a nearly impossible task that will take a lot of research dollars, research dollars that would better be directed towards finding a cure. Contrast that with, for instance, LLLT, where it would be incredibly easy to set up a series of such studies and where LLLT manufacturers would gladly foot the bill if they were confident enough regarding the efficacy of their product.

(Admins, I'm not getting into an LLLT discussion here - just using it as a point of contrast in talking about controlled studies, etc.)
 
Here is a Cochrane review of CBT with regard to Tinnitus management:

http://www.cochrane.org/CD005233/ENT_cognitive-behavioural-therapy-for-tinnitus

Authors' conclusions:
In six studies we found no evidence of a significant difference in the subjective loudness of tinnitus.

However, we found a significant improvement in depression score (in six studies) and quality of life (decrease of global tinnitus severity) in another five studies, suggesting that CBT has a positive effect on the management of tinnitus.

With that said, here is a treatment methodology that has proven results from Cochrane, is widely available, generally more affordable (my CBT treatment was covered by my insurance company, for example), and is at least relatively standardized.

With that said, if we are concerned with helping the 9s and 10s now, why not recommend CBT, which has ostensibly a stronger current recommendation from Cochrane than TRT currently does?
 
With that said, if we are concerned with helping the 9s and 10s now, why not recommend CBT, which has ostensibly a stronger current recommendation from Cochrane than TRT currently does?
No reason I can think of. I do it all the time. There's even a piece about CBT on my website. And if you go back to my post #30 in this thread, you will read:

"Individuals who grade their tinnitus 9 or 10 get appointments for TRT if they have tried or at least seriously considered other approaches and are still interested in TRT."

Among those other approaches I encourage 9s and 10s to seriously consider is CBT.

The problem is that very few cognitive therapists are truly interested in tinnitus. And those who are typically do not know enough about the auditory system to address the countless questions that typically come up in that regard during the course of therapy, specifically where 9s and 10s are concerned. @Dr. Hubbard in NYC is a refreshing exception ... as are Dr. McKenna in London and Dr. Andersson in Linköping. But past that, you are really sort of stuck.
 
Hello Dr. Nagler
Contacted Dr. Brenner's office today, first app is in July.
Will be having a phone consult soon with the Dr.to discuss the treatment as well as some medical history .Thank you so much for the referral excited to have a plan in place.
I am going to work on CBT while waiting for my appt. It is a challenge to find someone with a tinnitus background. I did see Dr. Hubbard does do webcam and facetime sessions but not sure if my insurance would cover that method. Any good books or websites that you would recommend on CBT?
Thanks so much
 
Hello Dr. Nagler
Hi back atcha.

Contacted Dr. Brenner's office today, first app is in July.
Understandable. I'm booked into July as well. Think about it this way. The very last thing you need at this stage of the game is a TRT clinician who can see you in a week or two. Because if she has that much available time in her schedule, likely there's a reason.

Will be having a phone consult soon with the Dr.to discuss the treatment as well as some medical history.
Excellent. That will give you both a chance to see if there's a fit!

Thank you so much for the referral excited to have a plan in place.
Glad to do it. If you were in my shoes, you'd do the same.

I am going to work on CBT while waiting for my appt.
Good idea. I'm a huge believer in CBT. As a matter of fact, a few years ago on another board a guy accused me of being a CBT shill. Really. Me, a CBT shill! I kid you not. It would be funny if it weren't so sad. Seems that some folks are more fixed on making baseless accusations than on making a real difference. Perhaps its the same guys who didn't want to shower with the rest of the boys in high school after gym. I dunno. But it sure is weird.

It is a challenge to find someone [in CBT] with a tinnitus background.
Yea. I mentioned that problem in the last paragraph of my Post #71 above.

I did see Dr. Hubbard does do webcam and facetime sessions but not sure if my insurance would cover that method.
And what will happen if it does not cover your TRT with Dr. Brenner?

See, here's how I look at it. You have an expensive condition. It is expensive in the dollars it may cost you in your search for meaningful relief. And it is expensive in its cost to your joy of life. So if your joy of life is a priority, you may have to set financial issues aside for the moment.

If I were you, I would check out @Dr. Hubbard's website and make at least one Skype appointment with him to get his spin on the matter - insurance or no insurance. In fact, after chatting with Dr. Hubbard, you may choose to forgo TRT altogether and just stick with CBT. Remember, your goal is habituation. How you get there is largely irrelevant, yes?

Any good books or websites that you would recommend on CBT?
Well, the best CBT book out there is Tinnitus: A Self-Management Guide for the Ringing in Your Ears. Unfortunately it is out-of-print, and whatever copies are available (new or used) are quite expensive (You can currently get a used one for around $120.)

I am attaching below my "Letter to a Tinnitus Sufferer" - which is pure unadulterated CBT. Not a drop of TRT in it. Perhaps that will help and save you the $120!

Thanks so much
You are most welcome.

stephen nagler
 

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See, here's how I look at it. You have an expensive condition. It is expensive in the dollars it may cost you in your search for meaningful relief. And it is expensive in its cost to your joy of life. So if your joy of life is a priority, you may have to set financial issues aside for the moment.
[/QUOTE]
Applause, applause!! You are so right. My joy, sanity Priceless!!!
Thank you for your insight, was missing the forest because of the trees.
Not a wealthy person but blessed that I can cover some sessions with Dr. Hubbard. And I know Dr. Brenner is out of picket too but don't care if I die in debt to Visa to find relief. You also bring up a great point, habituation being the goal, doesn't matter which path.
Glad I was reading the forums this weekend, I am hopefull!!!
 
Back in the late 1990s Dr. Jack Vernon, who at the time was the Director of the Oregon Hearing Research Center, offered the opinion that there would be a true cure for tinnitus within five years.
I must say that I find it hard to believe that the very Dr. Jack Vernon could/would have made such a promise. I am not saying he didn't make it; I am saying that I find it hard to believe, and implicitly therefore, I find it 'unfortunate' if he indeed did do so. To my knowledge, back in the late 1990s, there was not a single treatment in the pipeline aimed specifically at treating tinnitus. Auris Medical was - to my knowledge - the very first pharma established with the aim of developing a drug specifically against tinnitus (and that company was established in 2003).

I wonder how Dr. Vernon could have made such a suggestion without anything tangible to go by. And to my knowledge, there wasn't anything tangible back then (except if Flupirtine had been investigated, which it wasn't). The 'bench-to-bedside' development period for a drug is on average 10 years. And so how could anyone make such a statement i.e. "within five years"? Not also forgetting that Dr. Vernon was suggesting a "true cure" - which from my point-of-view is even more unrealistic due to the fact that tinnitus potentially has several different sub-types (and hence initial drugs/interventions may well be 'treatments' rather than actual 'cures').

As someone with a background in finance, I have reviewed many financial proposals for investments over the years. And whenever I have done that, I have always made sure that the input the calculations are based on are realistic and based on facts (rather than assumptions). I cannot understand the lack of self-criticism I see from some researchers when speaking on topics such as when the cure will be available for conditions such as cancer, hearing loss, multiple sclerosis, etc.

attheedgeofscience
21/APR/2015.
 
I must say that I find it hard to believe that the very Dr. Jack Vernon could/would have made such a promise. I am not saying he didn't make it; I am saying that I find it hard to believe, and implicitly therefore, I find it 'unfortunate' if he indeed did do so. To my knowledge, back in the late 1990s, there was not a single treatment in the pipeline aimed specifically at treating tinnitus. Auris Medical was - to my knowledge - the very first pharma established at developing a drug specifically against tinnitus (and that company was established in 2003).

I wonder how Dr. Vernon could have made such a suggestion without anything tangible to go by. And to my knowledge, there wasn't anything tangible back then (except if Flupirtine had been investigated, which it wasn't). The 'bench-to-bedside' development period for a drug is on average 10 years. And so how could anyone make such a statement i.e. "within five years"? Not also forgetting that Dr. Vernon was suggesting a "true cure" - which from my point-of-view is even more unrealistic due to the fact that tinnitus potentially has several different sub-types (and hence initial drugs/interventions may well be 'treatments' rather than actual 'cures').

As someone with a background in finance, I have reviewed many financial proposals for investments over the years. And whenever I have done that, I have always made sure that the input the calculations are based on are realistic and based on facts (rather than assumptions). I cannot understand the lack of self-criticism I see from some researchers when speaking on topics such as when the cure will be available for conditions such as cancer, hearing loss, multiple sclerosis, etc.

attheedgeofscience
21/APR/2015.

Silly of him to suggest that, as you said there was no treatments in development...Some people can be such attention seekers.
 
Silly of him to suggest that, as you said there was no treatments in development...Some people can be such attention seekers.
Danny Boy, back in the late 1990s the research community and the tinnitus sufferers of the day were just as excited about what they had going on at that time as the research community and the sufferers of today are about what we have going on with potassium channel openers and the like right now. Today in 2015 it is so very easy to say that tinnitus research was in its infancy back then, and it was! We have come so far. But I wonder what we will be thinking fifteen years from now in 2030 if there still is not a cure, which unfortunately is a real possibility. What we will be thinking in 2030 is that tinnitus research was still in its infancy back in 2015. We will be thinking in 2030 that we have come so far since all the excitement in 2015 about potassium channel openers. We will be thinking in 2030 about how naive we were back in 2015. We may still not have that cure in 2030, but we will be confident that we will have one within five years. Just like Dr. Vernon was confident we would have one within five years way back in the late 1990s.

Do I believe that as we speak today a cure is just around the corner? I certainly hope there will be a cure, but honestly I have no idea - because like it or not, tinnitus research is still in its infancy.

And just to set the record straight, Danny Boy, Dr. Vernon was no "attention seeker." On the contrary, he was one of the most humble people ever to walk the planet. And anybody who had the privilege of knowing him will agree with me in that regard. Shame on you for saying such a thing about a man who did so much for others and who asked for so little for himself. I am attaching something In wrote some five years ago when I was working for GHI that you likely will not find to be of interest, but perhaps others will.

stephen nagler
 

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Jack Vernon's walk to silence continues to this day. It is common that most great men never see their goals get achieved. Tinnitus maybe a small blip on the medical radar but I really feel its growing. When we do finally get the cure or whatever it is that stops this unbearable noise, Jack Vernon will be known as one of the major players that got the ball rolling back in 71.
 
Well, whatever worked for Mr. Shatner has worked for the rest of his life. In 2004 he did this album with singer/songwriter Ben Folds that was a big hit when I worked at my college radio station back then:



Proof that tinnitus doesn't need to stop us in our tracks!
 
Hell, if you look at this board most of the people (at least the ones that are active) have had tinnitus for less then 2-3 years. Where are all the millions of people that have had this thing for many, many years!? My guess is, they moved on.

Or rather they committed suicide. But since there's ZERO awareness of debilitating T we do not hear anything about it in the news. Just yet another someone that offed themselves due to 'depression'. Get it? T does NOT even exit for most people. All there is are DEPRESSION. Oh, some mental issues. Too bad.

..but I think that we need more people to suffer and most of all COMPLAINING LOUDLY.

I totally agree! If T was contagious, we would have at least a real treatment or even a cure by now.

..you refuse to do TRT because you feel you need to continue suffering?

I think TRT only works for people that have zero knowledge of basic psychology. Because,

habituation does not treat tinnitus at all. When a 9 or a 10 becomes a 2 or a 3 thanks to a habituation-based protocol, that person's tinnitus is no better.

However, I do agree with you meds ain't the cure either. Well, not in the long run!

Well, whatever worked for Mr. Shatner has worked for the rest of his life.

Proof that tinnitus doesn't need to stop us in our tracks!

There's t and there's T +H. Maybe Shatner has just t.
 
I think TRT only works for people that have zero knowledge of basic psychology.
You are absolutely entitled to your opinions about TRT. Fortunately that does not make those opinions accurate.
There's t and there's T + H. Maybe Shatner has just t.
Shatner had T, and now he has t. Same for me. But our tinnitus has not changed in the least. Shatner and I have changed, but not our tinnitus.

And as far as H is concerned ... if you have H, then for goodness' sakes treat it.

stephen nagler
 
Shatner had T, and now he has t. Same for me. But our tinnitus has not changed in the least. Shatner and I have changed, but not our tinnitus.

That's a paradox then.

If I have toothache my emotional reaction to it won't change a thing about the pain. Thus psychology won't work on intrusive reactive T. You can't talk it way.
 
That's a paradox then.

If I have toothache my emotional reaction to it won't change a thing about the pain. Thus psychology won't work on intrusive reactive T. You can't talk it way.
You can keep on disagreeing with people all you like, but there's nothing factual about anything you're saying here. Meaning, it's an opinion, and others are going to continue disagreeing, because they have a totally different existence and experience.

My experience is that the things I choose to think and believe, affect my life experience pretty overwhelmingly.

Perhaps you should go take ayahausca or something... What do you have to lose at this point?
 
shatner never had bad T, although his reaction was bad. In a interview he held the mic up and said it sounds exActly like this....shhhhhhhhhh. That is NOT bad T. HIS REACTION WAS TERRIBLE, HIS T MANAGABLE.
 
Danny Boy, back in the late 1990s the research community and the tinnitus sufferers of the day were just as excited about what they had going on at that time as the research community and the sufferers of today are about what we have going on with potassium channel openers and the like right now. Today in 2015 it is so very easy to say that tinnitus research was in its infancy back then, and it was! We have come so far. But I wonder what we will be thinking fifteen years from now in 2030 if there still is not a cure, which unfortunately is a real possibility. What we will be thinking in 2030 is that tinnitus research was still in its infancy back in 2015. We will be thinking in 2030 that we have come so far since all the excitement in 2015 about potassium channel openers. We will be thinking in 2030 about how naive we were back in 2015. We may still not have that cure in 2030, but we will be confident that we will have one within five years. Just like Dr. Vernon was confident we would have one within five years way back in the late 1990s.

Do I believe that as we speak today a cure is just around the corner? I certainly hope there will be a cure, but honestly I have no idea - because like it or not, tinnitus research is still in its infancy.

And just to set the record straight, Danny Boy, Dr. Vernon was no "attention seeker." On the contrary, he was one of the most humble people ever to walk the planet. And anybody who had the privilege of knowing him will agree with me in that regard. Shame on you for saying such a thing about a man who did so much for others and who asked for so little for himself. I am attaching something In wrote some five years ago when I was working for GHI that you likely will not find to be of interest, but perhaps others will.

stephen nagler

Yeah, but what treatments were being researched back then? I didn't mean to call him an attention seeker, but you must admit it was foolish saying it back then if there was no active treatments being trialled...I mean Autifony, AM-101 and others are being trialled, so that 5-10 mark is more believable vs back then.
 
shatner never had bad T, although his reaction was bad. In a interview he held the mic up and said it sounds exActly like this....shhhhhhhhhh. That is NOT bad T. HIS REACTION WAS TERRIBLE, HIS T MANAGABLE.

We don't really know how bad his t was..Leonard Nimoy also has t but his was mild...William Shatner said he wore maskers on for 24 hours...So it must've been pretty bad. But none of us will know for sure how bad it is, as we can't hear it.
 
You can keep on disagreeing with people all you like, but there's nothing factual about anything you're saying here.

So you go to the psychiatrist when having toothache. Fascinating.

My experience is that the things I choose to think and believe, affect my life experience pretty overwhelmingly.

Indeed, the power of perception. The right mindset can change a lot. But that won't put a dent into T nor does it make a paraplegic walk.

Perhaps you should go take ayahausca

If you invite me, sure. :)
 
If I have toothache my emotional reaction to it won't change a thing about the pain.
You are right. The principles I have been discussing do not apply to pain and temperature. Those phenomena have unique neurological pathways. But they most definitely apply to those sensations that do not involve pain and temperature.
 
I wished I had at least -ONE- Dr. in the Otology field Pre-Op(before being sicker), who had a bit of patience and empathy to try different approaches for T, I was unaware of. I've learned after the fact, elaborate websites from specialists who claim to be "TOP" experts in the T and H field are misleading. Even if it says "Best Dr. of 2014" - it's often not one chosen by patients but companies! I was never informed of TRT, CBT, habituation or special hearing-aids etc. I would've tried ANY over invasive surgery if I'd known. CIs are not the answer for T. Treatment could've been something simple.

After numerous of calls to FDA (in USA) about drugs/devices, I learned they "only monitor short-term approved funded clinical trials". None of long-term, always ambiguous feedback or redirected to ans. machines. This info. may be a wake up call on how drug companies and FDA work together. Taxpayers & suffering patients deserve transparency!
http://www.anh-usa.org/once-again-the-fda-deliberately-keeps-us-in-the-dark-about-bad-science/

Many YouTube videos are unfort. non-accommodating w/o closed-captioning CC! The Irony - for those who have T /hearing-loss cannot understand them. Oftentimes, the CC are non-sensical or unavailable. It worsens the T!! :arghh:
 
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