Why Is There Such a Stigma About Cognitive Behavioural Therapy?

I always suspected that was a big part of it.

 

How many people in the CBT field (e.g. includes psychology, psychiatry, counseling etc.) have a clue what tinnitus is beyond general "ringing in the ears?" I know dentists don't but some try to accommodate clients with breaks. ENTs can't help and they're supposedly experts.

But, we're supposed to believe that CBT is supposed to help? Linearb stated "data shows it" which is bullshit because it doesn't help with severe tinnitus. Only a very low number who claim they have severe tinnitus are helped and based on the numbers that aren't helped, it seems to be more valid as tinnitus is a unique problem that all health professionals can't do anything, at least, for severe tinnitus. Even audiologists struggle to help and most likely can't help. Habituation is the big word here and HOPE - hope it improves on its own.

That's why there are tons of threads urging the health community, governments and tinnitus organizations to push for more to be done, more research, more something that gets everyone closer to a treatment that actually affects the tinnitus, that significantly improves it - physically - not mind games like CBT.

 

If tinnitus is from hearing and/or brain damage, how is "choosing how to think or what to think" going to affect how brain neurons fire?

CBT doesn't even claim that. The idea is to control how one behaves and reacts, to stimuli, but people advocating CBT are not aware of the unique nature of tinnitus, let alone severe tinnitus.

Because some meditating people and some monks swear by CBT, it doesn't mean it will be effective for the invisible condition aka tinnitus - severe tinnitus even moreso. If it helps you, great. But, it doesn't help enough people.

 

Exactly this. During the period when I found out that tinnitus can have other origins than hearing damage, my audiologist refused to even consider any type of x-ray/scan. Why look any further into it? I already managed to calm myself down by TRT-like methods, and "Do you expect a surgery if they find something? They're not going to do that." (his words). One symptom got a first patch and apparently that was enough to close the medical file (my other symptoms were completely ignored, I suppose because he had not encountered those before). I had to initiate my own investigation and pay for physio myself to find out about the issues with my neck. Had I not done this, then I would still walk around with loud sounds 24/7, not to mention the lack of required treatment for my muscles...

It seems like (some?) specialists already refuse further investigation when you are capable of functioning with tinnitus. Of course there are other reasons as well (e.g. not acknowledging other causes for tinnitus than hearing damage, even when you don't have it), but the European guidelines don't make it easier to combat this "medical" stubbornness.

@linearb
Don't get me wrong, you give some clear points: and I for one feel relieved by the Michigan and Lenire research going on. Just like you, I believe this is one of the better (or less worse) time periods to get confronted with tinnitus, and I don't have any issues with having CBT as an option while waiting for a cure.

However, it is attitudes like the ones described above which fuel my concerns about the current guidelines and possible ignorance that they can create, mainly in Europe. I don't have any historical evidence to show, but even though I love the Dutch medical provisioning in many ways, I do see certain cases around me (and in my own recent lifetime) where practitioners seem to turn off their own logical thinking and solely drive by general guidelines. In this situation, even when the guideline itself can stand for something good, it can be horribly misinterpreted and misused... and to be fair, the European guideline itself is already set up badly. @Autumnly already explained this earlier, so I'll keep it at that.

 

Not remotely in my case. Am I frustrated I cannot get there? Hope I will someday sure.

However I am not so selfish that I feel that because I suffer that everyone else has to and truly happy to those who find their way. It is not anyone's fault that I am struggling to habituate.

 

Or you know, you could ask them and listen to their responses. ::shrug:: just a thought.

 

I think that you guys are just very thin-skinned and emotionally frail and think all criticism has an angry voice behind it when you read it. Then instead of actually debating the substance of what the person that disagrees with you has posted, you just accuse them of having some kind of anger complex. It could also be a tactic. Either way, you guys are so scared of addressing your detractor's points. @Autumnly, @bobvann, me @JohnAdams and others have made several points about CBT that none of you, @Ed209, @fishbone, @linearb, @Lane, will dare address.

I triple-dog dare you to address this:
"Simply put, patients should not avoid activities they think may make their tinnitus worse. Patients should not be putting their life on hold. Tinnitus does not have to control their life."

 

Who ever said this? ---->"Simply put, patients should not avoid activities they think may make their tinnitus worse.

If you find a post that I actually said this, do let me know. If you like CBT great, If not that's ok too. I will not say more....

 

You did not say this.

Please see my post on pg 11 with all the pictures and stuff. This is from a guideline from the big dogs my man. The establishment. It's worth the read. We should all be on the same team regarding this crap.

 

Actually fishbone I was given the advice to keep doing things like you don't have tinnitus. I like your posts

Playing drums causes reactions and spikes. I "battled" this for almost a year. So should I say F you! & risk further aggravation beating my chest & ignoring this? I am just curious from others who experienced something like this and have had some success. I would LOVE to be able to keep on playing. Especially since something as simple as playing sounds off of my speaker off my phone can s trigger some slight pulsations at time.

 

Okay, I'm just going to strongly disagree. I still haven't seen any evidence that the existence of CBT is a bar to tinnitus research, and research spending on tinnitus and hearing loss has absolutely exploded over the last 20 years as boomers have aged, so I just can't reconcile that. I guess I understand what you're trying to express and disagree about as vehemently as I can based on lots of personal experience and bias, so we are likely at an impasse, which is fine.

"Most medical professionals" is sort of hard to respond to, but I will say "most MD ENTs and neurologists that I personally have seen, have told me they think tinnitus is a very serious condition without adequate treatment and which can become catastrophic in severity". That's just my personal experience; if we wanted to know what the entire medical establishment actually thinks I guess we'd have to resort to polling of some kind.

Your anecdotes are just as good as mine, of course, but in the past 20 years I have seen probably two dozen MDs of various different stripes for this. I know which ones blew me off or didn't take me seriously, and for me it was some minority, maybe 25%.

This one?

​

 

you just can't address any of my points. you won't even try. weak.

 

Every single thing you've said has been addressed multiple times, by multiple posters. You have a clear inability to express any understanding of even basic concepts that do not align with your world view, and this is, I believe, the first time I have given you a macro image response instead of doing my best to communicate openly, so we're what, four to one on that score? Six to one?

Additionally, I believe that image of Charlie has a few things in common with your "big post on page 11"

 

oooooOOOOOooooo that is not true at all.

 

Tinnitus should be interpreted and treated as a physical problem, not a psychological problem. Doctors tell patients that they should learn to "live with it."

A few posters are saying that the medical community is not addressing the condition seriously and is unsatisfactory in the progress of real treatment. Regardless of the cheerleaders here regarding research, CBT is insufficient if it only helps a really small sample of tinnitus sufferers.

 

Well @JohnAdams, I have to say that all strikes me as pretty funny. I actually didn't know that someone had disagreed with any of the few points I've made. And not knowing I have my detractors and somebody has disagreed with me, how am I supposed to address those supposed disagreements?

Just to clarify, I don't believe--and never said--that "all criticism" has an angry voice behind it. Nor do I recall Fishbone, Linearb, or Ed209 saying anything along those lines. Your assertions as to what we are supposed to have said strike me as a classic strawman argument. I think the points Ed209 and Linearb have made have been well articulated, and why you seem to want to infer all kinds of nefarious things into what they (and me) are saying is pretty mystifying.

 

Finding a cure is not an EASY thing at all. We are dealing with the brain/mind and it's a delicate process. I started my tinnitus journey 32 years ago and I am always thankful for what progress we have made. Not everything will work for everyone. For some meds work, for some they don't. It's all about trying to see what works for YOU.

Back in the days, I'd have shame if I would wear an ear plug in public, I'd think, "Man o man these people are going to look at me in a funny way". Now, I only keep my own BEST interest at heart. My own best interest is to keep the little hearing I have left and to not make my tinnitus louder and more annoying.

Perception of life and elements that surround it is so important. How we may think, can lead to how we MAY act. This thread has reached too many pages and it's going in circles.

Not everyone can benefit from certain things. If I am dealing with a situation and see that someone benefited from a tool/technique, then I may think about trying it. It's all about see how things, can possibly help us move forward in life.

If I can find any glimpse of hope for a situation that I may have, I will take that glimpse of hope. I seek a way to always move forward in life, even when it seems impossible.

Due to the beyond severe tinnitus I have now and beyond horrible hearing, there have been many times that I thought about quitting everything. Frustrations lurk and wants to get me emotional. This is normal folks, we are humans.

It's sad that something like tinnitus can make our lives so hard, I hope you folks FIND something that works for YOU

 

I was trying to get with this gal and I knew she loved music. So I bought a guitar (acoustic) and was trying to learn some sweet classic jams, I gave it a try and wanted to play the guitar badly, but it was not helping me at all. My tinnitus was annoyed badly. So I stopped playing the guitar.

Then I tried to learn how to sing, and actually sang to her a few times, I could not keep a straight face (I was laughing hard and she was turned off ) because I knew I was beyond horrible at singing as well. So, I decided to not try anymore and I feel a lot better

Love makes us do some odd things...

 

@JohnAdams is quoting the general european guidelines, which can be found here. You can find the quote halfway the article, below "Monitoring tinnitus". In all fairness, when reading in context, the paper is referring to "normal activities".

I'm actually positively surprised by the content of the appendices where proper treatment of somatosensory T is mentioned, hadn't seen those before. I guess my audiologist never noticed them either...

 

Full quote from the European guideline for tinnitus:

Monitoring tinnitus
If life is planned around tinnitus it is given much importance, and this prevents the patient adapting to it. Simply put, patients should not avoid activities they think may make their tinnitus worse. Patients should not be putting their life on hold. Tinnitus does not have to control their life. Each time the patient tries to “monitor” their tinnitus they are guiding their attention to it; there is, however, no evidence that this would make tinnitus worse. They should be advised to engage in normal activities when they notice themselves trying to monitor their tinnitus.

They don't explain what they mean by everyday activities and they literally said you shouldn't avoid activities you think could make it worse. Maybe some people think concerts are a normal activity. What about visiting a wedding? They can be pretty loud. The guideline doesn't warn people about potential consequences and they don't even include patients with hyperacusis here. Everyday sounds aren't safe for everyone.

Also, what about people who are unable to work due to tinnitus? Are they just planning their lives around their tinnitus and needlessly putting their lives on hold? There are better ways to word these things that include severe sufferers without causing too much anxiety for people who are new to tinnitus or have less severe versions.

It's not just about what they say but what they don't say and they don't adequately warn people, they use words that downplay the condition, etc.

 

This excerpt you quote is really terrible advice. It is part of the Tinnitus Establishment's many unsubstantiated claims about tinnitus and one of the reasons why we have made so little progress in terms of research. I was able to habituate to tinnitus precisely because I ignored this advice - take great care around events which are likely to have loud noise exposure implications, always have a pair or earplugs to hand and ensure that your exposure to any loud noise event is of as short a duration as possible.

 

I agree that these guidelines might be true for the majority but severe sufferers are left out. It might be on purpose not to induce anxiety. We all know that getting tinnitus, even a mild version, can come with a host of psychological side effects and can send people into a tailspin. It's hard to break the cycle but most people eventually succeed and learn by trial and error what activities they can and can't do. Maybe they just applied statistics and chose whatever treatment proved most successful in the majority of sufferers.

We know that most researchers already think that loudness doesn't matter and it's just our reaction.

Most researchers haven't got tinnitus themselves and thus cannot relate and simply aren't critical towards previous research. Researchers that do have tinnitus might have the milder version and feel that if they've successfully overcome the condition and gone back to work, anyone can...

I had the "pleasure" of meeting such a guru in my quest. A professor who still preaches Jastreboff like it's the 80's.

Not saying all doctors are the same, maybe an experienced ENT might have seen a couple of severe cases in his career and as such he may be aware that the theory doesn't apply to everyone.

Maybe you could suggest a modification to the guidelines? They might even listen, who knows?

 

My audiologist made the claim of tinnitus never becoming loud as well: according to him, 10 dB is the maximum, of which he said it was scientificaly proven (don't ask me how). I don't know how widespread this belief is, but it does live in the medical environment to at least some extent.

 

Imagine getting MS and your doctor refers you to a psychologist for treatment? I am sure they do if you have anxiety about your new diagnosis but no respectable neurologist pretends like this is a treatment for the actual disease. No one pretends positive thinking is a treatment.

Why does this happen with tinnitus? Because until recently there were no treatments in the chronic stage and doctors don't like to tell people they don't have anything for them. I think this will change as more treatments (e.g.. Bimodal stimulation, regenerative medicine) becomes available but there are always doctors who will resist change because it's more work for them and they have to go off autopilot and are often already crunched for time.

 

That number is very surprising!
Although it must probably be said that a filtering might have occurred before the event. As in, researchers having tinnitus and empathizing the most with the community would likely be more drawn towards the TRI conference? This is just me thinking out loud obviously.

I was referring to the perpetuated myth that a person with very loud tinnitus can be unbothered by it, and as such we must tackle the psychological issues to give relief. Where I'm from, this is still the standard of care in hospitals. Granted, I'm not at the forefront of tinnitus research and I don't communicate with the leading researchers. My perspective is that of a patient. While I truly believe that the new school of tinnitus research has been looking at ways to actively suppress the tinnitus signal itself, this ambition hasn't trickled down into the real world. Every day people get told to live with it, told that nothing can be done. The difficult cases get referred left and right to get psychological help.

In my case I can honestly say that there wouldn't be a need for any psychological help if it wasn't for the tinnitus. It's like they try to make you believe it's the other way around. People get told they have underlying psychological issues and when tinnitus comes around for some reason we latch on and we give it credit for making us miserable.

Not trying to generalize and call the entire medical system worthless, but in my own journey the support has been appalling and judging from this forum I'm far from alone.
I believe in the good intentions of the Susan Shore's and Thanos Tzounoupoulos' of this world, but it's such a slow progress when you really bank on a cure.

 

You can thank Edmund Fowler for this:

• Fowler (1942, 1943) noted that although patients described their tinnitus as very loud, he found it could usually be matched at only 5 to 10 db SL. In his opinion, tinnitus, being an “illusion“, tends to be exaggerated. The typical loudness matches of 5 to 10 db SL were “very faint“ and did not correspond to the reported severity. Fowler recommended educating patients regarding this discrepancy to understand that their statements about severity did not correspond to “the facts“. - source

 

Again, I don't think such studies had even been conducted, but absence of evidence does not mean it isn't happening.
In absence of evidence, we need to fall back on our common sense, our knowledge of human nature and our understanding of how the world works.

Not too long ago, I had seen 2 guys in black hoodies and back-packs walking down my street.
While there are no studies (that I'm aware off) to suggest, that people dressed in black hoodies carrying back-packs are more likely to be up to no good, my gut feeling (or maybe call it my street smarts) told me otherwise.

Again, I had absolutely no evidence which would suggest to me, that those two individuals would be up to something, yet I somehow knew that they were.

Later on that day a neighbour 3 houses down caught them trying to break into his garage.

Not everything in life has to be researched and evidence based.
Sometimes we need to put 2 and 2 together ourselves.
Such is the case with CBT removing the urgency to look for a cure.
It only makes sense.

Anyway, as you have said it yourself, we just might have to agree to disagree.
In this regard, we are very much the products of our life experiences and the conclusions we formed from them.

I wish you peace and a happy new year to you and your family.

 

10 dB SL is not the maximum, but anything above 20 dB SL is incredibly rare and almost unheard of. The highest I’ve personally seen reported is 30 dB SL. However, these numbers don’t carry much weight, anyway, in the grand scheme of things.

From my experience, audiologists need far better training when it comes to tinnitus and how they talk to patients regarding it. This is completely anecdotal of course and I know there are some great ones out there, but of the many I have spoken to, they just weren’t very knowledgeable.

Obviously, I wasn’t there when the audiologist was talking to you, Tybs, so I don’t know all the facts of what was said, but they should have explained that measuring tinnitus objectively is just not something we can currently do. At best we can estimate using the sensation level whilst doing a pitch and loudness match, but this cannot be compared to other decibel scale weightings. If this wasn’t explained then I can understand why so many people are insulted when such a seemingly low number is given out. The reason for this is that most people try to compare their tinnitus to outside sounds using the A or C weighted decibel scales, and this will come to a much larger (and meaningless) number. I’ve spoken about this a number of times so I’ll paste my previous message on this issue for further clarification to anyone who’s interested:

There’s no such thing as 70 dB tinnitus. You have to realise that there are many different weightings of the decibel scale and none of them really convert into something that can accurately measure how loud one’s tinnitus is. There is the A-weighted scale which is aligned to the strongest frequencies within the human hearing range which is most notably 500 Hz to 8 kHz. Then there is the C weighted scale which takes in more of the lower and higher frequencies of a broadband sound. The Z rated scale is flat and measures all frequencies evenly.

The closest thing we have to measuring tinnitus is what’s called a pitch and loudness match.

In audiology, you will see terms such as sensation level (SL) and hearing level (HL). Remember that the decibel scale is all relative to the quietest sound that can be heard, so when one has an audiogram and their hearing threshold shows 0 dB HL, this means they can hear the quietest sound that an average human ear can detect (assuming one has normal hearing and one is relatively young). This is where the HL standard is derived. Sensation level, on the other hand, is the measure of the intensity of an auditory stimulus above one’s threshold at a given frequency. During a loudness match, the audiologist will find out at which frequency a person hears their tinnitus - if it’s tonal - and then they will measure the distance between the loudness of that persons tinnitus and the threshold of their hearing. So for example, if a person hears tinnitus at 6 kHz at 40 dB and their hearing threshold at 6 kHz is 30 dB HL, then that person would have a tinnitus match of 10 dB SL.

One of the problems with this method is how accurately people can match their tinnitus to a frequency as there is often an octave error in one’s judgement. This is especially true of people who have no musical training. The other issue with this is that it doesn’t account for the brain’s emotional processing of the sound which is the domain of Psychoacoustics. All sounds are not processed equally, and the volume we “hear” something at is the result of a complex chain of events within the brain. The more threatening a sound is perceived to be (which is based on our life’s experiences) the louder it will be portrayed in our conscious awareness. You also have to factor in tiredness, adrenaline and other hormones, and many other factors. A great example of this is how a movie at the cinema is perceived as loud, but if someone so much as whispers, it can be annoying because it can be heard. The whisper that’s heard in comparison to the volume of the movie is considerably quieter and yet people still hear it and get annoyed by it. Another example is how we can have our car stereo set at a comfortable level, only to find that it’s LOUD the following morning when we are tired, even though nothing has changed. We often have our TV’s on quietly at night, so as not to wake others up, and yet our brain can easily normalise this level of sound to be perceived as being louder. You discover this when you come to watch the following day and it’s WAAY too quiet, so you turn it back up again.

What I’m saying is that our perception of sound is malleable and can change depending on the conditions we are hearing something in. A 20 dB creak in the middle of the night can potentially sound deafening if you are home alone.

From a Psychoacoustics point-of-view, two sounds that are the same on a decibel meter will not necessarily be perceived as being the same loudness, and for this reason, a new unit called the phon was created. A phon is equal to a decibel at 1 kHz, so 40 phons would be the same as 40 dB at 1 kHz. A 90dB sound at 150 Hz, for example, would not be perceived to be as loud as a sound that is 90 dB at 3kHz, so by using phons we can try and keep one’s perception as neutral as possible. Sones are a linear representation of phons; 1 sone is equal to 40 phons and every 10 phons thereafter would represent a doubling in perceived loudness. This means that 50 phons would be equal to 2 sones and 60 phons would be equal to 4 sones, etc. Psychoacoustics is the science of how our brain interprets sound, and it’s interesting to note that phons and sones are the primary units of measurement. This is because it’s particularly difficult to define how loudness is perceived from one individual to another and these are likely the most neutral measurements we currently have.

This is already a long post, so I’ll conclude by saying that most people’s tinnitus is around 10 dB SL when using the pitch matching method. It’s extremely rare to see anyone go above 20 dB SL.

 

TL;DR