Why Is There Such a Stigma About Cognitive Behavioural Therapy?

Why does it seem like there is a great chasm between the tinnitus research world and the biomedical companies that are actually demonstrating the ability to heal the anatomical structures implicated in the pathogenesis of tinnitus? The tinnitus research community is adamant that they are trying to find a cure but then they aren't following the lead of people like Audion, Hough Ear, Frequency Therapeutics etc, or even really talking about them much if not at all.

Does "trying to find a cure" mean "sitting around and waiting for someone else to do it"?

 

Seems like it. No easy solution to even manage tinnitus for the average person.

 

Ed this is a very well written and informative post. I wish you would join us. Darth Vader turned from the Dark Side, so can you. Look deep inside yourself and find your true autism, the autism of your childhood.

 

I’m going to make this my very last post on this thread because as Fishbone stated, we’re going round in circles.

What I can gather, and I’ve said this before, is that everyone’s frustration is centred around external factors such as the European guidelines and the lack of funding for research. These are separate issues that have somehow become intertwined with CBT in recent times. From a straight-up medical perspective, clinicians know there is no cure or treatment that can objectively lower the volume of one’s tinnitus. Nothing can be done! So what we are left with is looking at ways to learn how to live with it for today. For some, CBT may help, and for others, it will be a complete waste of time. It doesn’t have to cost much, or even anything, as these techniques have been around since the ’60s, so there are various books and internet apps around. There may be some rogue CBT practitioners out there, but the fault lies with them and not the method itself.

I agree that the European guidelines need re-doing as they aren’t clear at all. I can see people doing themselves further damage based on how some of it is worded. It’s not good.

As far as funding research goes, all incurable conditions are in the same boat fighting for the same money. What we need is more activism and awareness-raising from the tinnitus community itself so that governments and large institutions can hear our voice loud and clear. This is where things fall considerably short.

CBT is just a way of coping, nothing more, nothing less. It’s just an option to try, but it seems to have become the primary scapegoat for everyone’s frustrations. The only way to effect meaningful change is to become active and vocal away from this forum.

 

Appreciated, this seems like a fair conclusion to the topic at hand. As individuals we can always disagree on details, but I can quite find myself and my views in your post.

May I add that I consider this topic as a very valuable source of insight? The discussions have been very informative, and I thank you all for sharing your input. It's been a good read, and I'm glad I found this forum for the required support on the intellectual front

 

I think I've made it pretty clear that I have issues with CBT for tinnitus directly.

We'll have to disagree on that one, I don't see how it's just some (talking about therapists offering CBT or mindfulness for tinnitus specifically). Also, like many others on here have said, our main issue is usually how CBT for tinnitus is being promoted and which misconceptions it oftentimes spreads, not CBT itself.

Completely agree.

 

See, there is some common ground after all. I’m talking about CBT itself as a method. How some practitioners promote themselves is out of our hands and I see that as a separate issue that needs addressing.

I’m looking at this completely from the perspective of that it’s something that may help people cope today. New sufferers who arrive here are unlikely to try it based on the stigma it has, which is unfortunate as it could help a certain percentage of them and this is a support forum after all.

Pioneering for change regarding the various points you’ve brought up is another issue in my eyes. I’m pro-cure/treatment and always have been and have done whatever I can to do my bit, but I’m also a realist and know there are people who need ways of coping now whilst we wait for the possibility of treatments.

I prefer to see people supported on here whilst advocating for change away from here. One of the problems I see is that many mix the two up, so you have people essentially preaching to the choir here, but nowhere else, and I think this affects how people are supported.

 

As someone who routinely wears black hoodies while carrying a backpack, sometimes in bad parts of town depending on what I am doing, and works in an industry where "black hoody and packpack" is practically the dress code for a large swath of 6-digit earners, the idea that we're up to no good just tells me you're stereotyping people. Okay, these people happened to rob someone, that doesn't prove anything about people in general wearing black hoodies and backpacks. The rest of your post sounds like confirmation bias.

We had a thing here where someone was concerned about "suspicious people" ringing their doorbell at 3am, and responded by sticking a gun in their face -- it turned out that they were non-white tourists who had gotten lost trying to find their Airbnb in a no-cell-coverage zone, and the gun-toting idiots were more or less shamed into silence.

Of course we all make decisions based on our gut feelings all the time, and this is a necessary survival skill. But, I think when we're looking for "truth" in terms of datasets, statistical analysis, and trying to make mid-to-long-term decisions, if we just put 2 and 2 together ourselves we are as likely to get 3, or 5.

All that said, this has indeed been a long thread, and while I may not agree with you, or with @JohnAdams or a number of others about some things, one thing is very clear to me:

I think everyone else posting in this thread sincerely wants the best for all tinnitus patients and wants to see the fastest path to less suffering for all of us, even if we don't agree how to get there. The vitriol that sometimes flies from my fingers is borne of passion and concern, and I believe that's likely true for most of us.

So, I guess we should be working towards unity. Yesterday, John tried to make a point along those exact lines, which I ignored for the moment, but which has come back to me, and I think is a prescient message going into the new years. Whatever our disagreements with each other, whatever our political or social or cultural backgrounds, we all have this one really shitty thing in common. So, as I take the next month off from social media to try to catch up on the last 12 months of video games and books, I will also try to reflect on that and how I can better learn to shut my yap sometimes when I'm just contributing to cyclical disagreement.

I hope that everyone has a blessed and quiet NYE, with your family/friends if you so desire.

 

I already feel sorta like I'm living the life of the dude from Memento, so anything is possible

Except my secret notes to myself say "your cellphone is in the kitchen on the table" and "don't forget to feed the child and the animals and yourself"

 

We think the best path is increased attention given to biomedical advancements that are repairing damage to the cochlea. There is no fast.

Your words echo the slogan of the BTA, "a world where no one SUFFERS from tinnitus" not "a world where no one has tinnitus".

 

Nah, not at all, I didn't say "no one" anywhere and I'm all for a cure. I spent 10-15K to be a lab rat at UMich, dude, I want to see real cures as much as anyone else.

It makes sense to me to suffer as little as possible in the meantime and use whatever tools are available, but that's just my opinion, and maybe we disagree about what those tools are.

I do, sincerely, wish you a happy new year and continuing improvement. I mean that for real and not in the Michael Leigh backhanded insult way.

 

This was my first post on page 1 :

Yeah, I have an issue with that as well. For example, sometimes people talk about wanting to try out CBT and another user will say "it's a scam" without further explaining why they're coming to that conclusion. Those are unnecessary comments that we don't need here. However, I think most CBT for tinnitus therapists will spread certain misconceptions and I'm left wondering: How much of an effect does this have on how tinnitus is seen in general? How likely are people to engage in activism if they're being told that they should avoid all things tinnitus as much as possible since this would lead to increased awareness?

 

Why did you have to spend so much? Travel?

 

Yes, travel and lodging; they had to see me every week, and the cheapest way to do that was to fly in on a Thurs, Airbnb until the next Tues, then fly home. That would give me 8 days at home or so, then repeat.

I am not the most budget conscious person in the world so I bet someone more willing to take red-eyes and sit in loud seats rear of the wing might have been able to save some money, but it woulda been some thousands any way you slice it.

My motivations were certainly partially selfish interest, but I did really also want to see the science on the ground and contribute in any way I could. Because I was (apparently, they told me after unblinding the data) one of the best responders both in terms of subjective and objective improvement, they asked me about participating in a Phase-II early on, but by that time I was living further from an airport and had a child to care for I did not want to be away from for such long stretches.

If they had been able to use UMass Amherst as a secondary study site, I would likely have been willing to make the commute for that, it would have meant ~8 hrs on the road a day once a week. Unfortunately, that did not happen.

I was the only travel patient in Phase-I and part of me wonders if the logistics with that were one of the reasons they decided they didn't want people doing that in the current trial. If so... sorry, would-be travelers :-/

 

Did it help your tinnitus?

 

Yeah I cant sing worth a dammed either I actually dreamed I was habituated. The I woke up with noise I pick up my Les Paul today.

 

Question for you on this topic - the Lenire folks are saying that their devices sound like bleeps and tones and sad science music. Did the UM device use a similar approach? I ask because there’s a lot of talk about the placement of electrodes and somatic enablement, but not as much discussion about the actual sound component.

 

Yes; I believe I finished the second treatment set sometime in the late spring of 2014, so if you look at the UMich thread from that period of time, you should find some posts about what I had to say right afterwards. However, I will spare you the trouble:

Post with link to actual published results

My short term take: the device was at least as effective as benzos at making me not think about tinnitus, and based on the published data probably actually reduced the volume and nature of my tinnitus. Here are some quotes from me in the following pages:

Post where someone dug up my Reddit writeup without realizing it was mine

That last bolded section is why RCTs are important and illustrates why I don't think my experience means too much to anyone else. Of course, it biased the hell out of me, and the preliminary paper looks good.

Time will tell.

 

Whether we like or dislike CBT, TRT or any other method, one thing is clear all of us want the best for each other and all of us are in this together daily. We are going through a horrible ordeal and all of us are united in our cause to live a better life. @Ed209, @billie48, @Michael Leigh, @Jazzer, @linearb, @Lane, @Greg Sacramento and many more and myself wish you a great new year.

This is one of those forums that truly cares about the people on it and I try help all those that suffer on this site. Please protect your ears tonight and be good to yourself! Life with tinnitus is a challenge. we are working hard together to pull though it.

This forum unites all of us. So do know that you are never alone.That you will always have someone, that cares for you and WILL understand what you are going through

Bless all of you!

PS - A huge thank you also goes to the people behind the scenes @Markku, @Hazel.

 

Why does any of that preclude us organizing and becoming activists towards drugs that could help us? The HIV community did it and it served them well. Why would tinnitus be any different?

 

The UMich device just used a series of broadband (square wave?) tones. They did test my hearing and there was maybe some thought that it was important to have SOME hearing left in the tinnitus ranges. But that's not really known at this time.

It was just beeps, and I was told that they did not need to be loud at all, so long as I could clearly hear them. I had them turn the volume down after the first attempt at calibration to something I was comfortable with even in my insane, heightened state of distress and borderline hyperacusis. (I do not, and have never severely, had hyperacusis -- but when my tinnitus has been at its absolute worst combined with severe anxiety, I have found ordinary sounds intolerable).

 

It does not, in any way shape or form, and I would 100% support such activity. My time is more limited than my wallet these days, and GoFundMe is a thing. Put together a convincing use of money with clear transparency showing that 100% goes to advocacy and exactly how that's happening and I will be glad to contribute. (I'm not kidding; I got my shiny Benefactor thing here after I inadvertently said something sassy to an admin which I felt so bad about that I was immediately compelled to drop $100).

My wife claims she wants to run our finances in 2020 though so work fast! Something about "I'm not sure we actually needed the motorcycle, three computers and thousands of dollars in chemistry equipment you bought last year", weird.

 

Thanks for sharing - I appreciate the detail on the sound component as we are all a bit sensitive to sounds and volumes.

Re: your success - you ran only a 4 week protocol as well as I understand it, so perhaps with more time on the device your results could have improved even further, and some non-responders or lower responders on a longer protocol would have seen more results as well. All very intriguing.

Thanks for the detail in your other post on this thread regarding responders / non-responders. It helps manage the expectations of the community.

Much appreciated!

 

Glad to see we are on the same page. What is more disheartening is one of my health authorities in Lower Mainland BC Canada charged me $100.00 claiming it was some kind of TRT.

It just turned into an info session of mostly what I had found online and YouTube. And links to snake oilists that charged an arm and a leg for TRT and CBT practitioners.

I had reached out to one that was out of province (state for US folks). She was having a weekend session. With the cost airfare and hotels I was looking at over $2000.00.

Then I found the local option I previously mentioned, same with TRT. With all I tried I spent approx $4,000.00, luckily a good portion was covered under my health care plan.

Happy new year everyone.

 

I'm on Twitter, mostly calling out bad advice. I've put my neck out there to try experimental surgical procedures and I am also now in the process of working with a researcher to analyze my blood to understand why I have near silent days and bad spike days. We need volume when it comes to voices. We need to all be on Twitter, researching, working with researchers as much as we can. What we don't need are people in this community fighting tooth and nail to keep us mired in the status quo. There's not much else I really can do. I don't have connections like you and Markku do.

The best thing we can do is usurp the leading voices in the tinnitus research field by pointing out their bad research and force them to join us in daily getting the message out that there are medicines out there that are probably going to treat us, like the Hough Ear pill, and that we need this now.

 

I'd give anything to have a near silent minute, you are so blessed @JohnAdams

 

You need to go to the TRI and place whoopie cushion under Berthold Langguth when he sits down. The sound produced would be a step up from some his other publications.

 

It's the same with mine. It fluctuates. Strange thing is when it's near silent I can still feel quite an annoying reaction all the same. Other times it's like Dr. Hubbard states in his videos it can feel like you are beating it one day following by getting your head ripped off and/or really intrusive the next. Today is a "better" day. I just got back from a workout and it has not altered it much. Spikes a bit during being at the gym but then settles back down.

If I am having a spazz day then it just remains as such. OT My Les Paul is pretty sweet!