William Shatner & Habituation

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.

 

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.

Well exact what percentage of funds that are now devoted to research towards a cure would you suggest devoting to TRT 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.

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

stephen nagler

 

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."​

 

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.

Is there a reason why he is not interested in standardizing TRT?

 

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!!!

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.

 

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:

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

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.

 

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

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?

 

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

 

Hi back atcha.

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.

Excellent. That will give you both a chance to see if there's a fit!

Glad to do it. If you were in my shoes, you'd do the same.

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.

Yea. I mentioned that problem in the last paragraph of my Post #71 above.

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?

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!

You are most welcome.

stephen nagler

 

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!!!

 

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.

 

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

 

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:

William Shatner - Common People

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

 

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.

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

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

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

There's t and there's T +H. Maybe Shatner has just t.

 

You are absolutely entitled to your opinions about TRT. Fortunately that does not make those opinions accurate.

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

 

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.

 

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.

 

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.

 

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

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.

If you invite me, sure.

 

I just really tired of constant pessimism; I've been dealing with this shit for a looong time, and I know that in my case, wallowing in negativity literally makes my ringing worse. I even understand some of the physical mechanisms that underlie that.

 

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!!