Why CBT Hurts Our Cause

That terminology is the appropriate one in the context of CBT. It means something very specific. For more info, see https://psychcentral.com/lib/identifying-irrational-thoughts/ - People who do not know much about CBT may be confused about this terminology (and perhaps not like it), but it is what it is. I didn't come up with that name.

I agree. I've only been able to "amplify" the volume of my T if I focus on it. I think it comes from our ability to focus on specific sounds, like when cavemen wanted to focus on that branch creak that could indicate an imminent encounter with a tiger. Conversely, it means that if people are unable to shift focus away from it they would experience a higher volume that they should.

I imagine there's a fraction of T sufferers who are stuck focusing on it (perhaps this is more prevalent immediately after onset). These guys would actually perceive a volume decrease if they managed to focus away from it, so it makes sense to still offer the "don't focus on it" piece of advice to people who struggle, even though it's probably not useful for T veterans.

For me it's not "hearing it louder" actually, but there are variations in my ability to cope based on my stress levels and tiredness levels. Just like a crying child: you can deal with it better when you are fresh after a good night sleep than when you haven't slept in days, even though it's the same annoying stimulus.

 

I understand that some want to detach the connection between mental well being and tinnitus, but there is a connection on some level.

Dr. Rauschecker has shown that our emotions have a great effect on our tinnitus. I know for me personally, if I am extra stressed or anxious, my tinnitus is significantly louder than it already is.

This doesn’t mean that emotions are the only factor at play. Even when I am calm, my tinnitus is loud, but stress and anxiety exacerbate it.

People take this the wrong way and think, “well if tinnitus gets louder if you're stressed that means that people need to relax and it won’t be loud.” This is not how that works because baseline is still baseline and can be loud.

The reason I advocate people to do CBT is because it can try to reduce stress/anxiety which exacerbates tinnitus. It will not lower your baseline tinnitus, but may help reduce the tinnitus caused by stress and anxiousness. CBT can also help take the emotion out of tinnitus, which helps people cope with their tinnitus.

This doesn’t mean that I am having a grand old time and have tinnitus. It means that I am trying to live a calm life with tinnitus being a part of it. That is all I can do at this point without any cures or treatments available to me.

CBT doesn’t cure or treat tinnitus tinnitus, but it helps reduce the anxiety and stress that can exacerbate it. Baseline is still baseline, but it takes the extra controllable tinnitus that we can control off of baseline.

Don’t get me wrong, anyone who says tinnitus is all in your head needs to get a reality slap.

 

I have it like that too. Some days when I am tired, tinnitus annoys me much more than when I am well rested and so on.

It's not just tinnitus that annoys me, I get annoyed by every extra sound when I am tired and so on.

So maybe doctors confuse that with volume? Sometimes I cannot boost the volume of my tinnitus even if I concentrate on it.

 

Who are those people?

"Loudness is not a factor?"
Do you know if anyone here wants to off themselves because of "low volume" tinnitus?

If anyone is extremely distressed at it being low volume, it's probably easier or more possible to habituate to than high volume. Pitch is probably a factor too.

 

Because living well with tinnitus is something we can all just learn.

• "How we perceive tinnitus has the potential to disrupt our connection with life. The quality of our wellbeing determines if we allow it to stimulate stress in us." (it's just a matter perception!)
• "learn about how to increase your capability to live your best quality life, undisrupted by tinnitus"
• "equip people with strategies and technique to recover from the effects of tinnitus"
  
• "You will learn how to identify stress in your system, how to remove it from the body and purify your nervous system of fatigue."
• Fee : £300

 

Dr. Hashir Aazh's new video

• "Other studies show that when tinnitus-related distress and anxiety is minimised, tinnitus loses its significance and it is more likely for it to fade away to the background"
• "Our study showed that the amount that people get annoyed by their tinnitus is the key contributing factor to the perceived loudness of the tinnitus and therapy can help with that."
• "Therapy can help them to explore the mechanisms in which tinnitus produces annoyance and help them to modify that."

They introduce a patient with hyperacusis and he says:

• "I found out that a lot of it has to do with sort of anxiety and stress and stuff."
• "The more worried about sounds [...] sort of the louder the brain made you think they were."

People like Dr Aazh will continue to spread dangerous misconceptions about tinnitus distress and pain-hyperacusis. Saying it's just the patient's emotional reaction that makes these conditions debilitating doesn't reflect the reality of all sufferers and blames people for not getting better. Implying that if people didn't see their tinnitus as annoying, they wouldn't perceive it as loud (or debilitating) also isn't reflective of everyone's experience. The comments under his videos are deactivated.

(CBT and mindfulness have their place in managing tinnitus, but people like Dr Aazh never mention that loudness can matter, that tinnitus can be debilitating in itself, that not everyone can learn to live a normal life with it or that we have a dire need for medical treatments.)

Also, there's a new app for tinnitus called Oto - The Mobile App for Hearing Loss & Tinnitus

• "It is not something that can be cured overnight, but with the right support, intervention and the right mindset, tinnitus can be successfully managed."

 

If a psychologist was in my body, they would burn all of their books and beg for biomedical research.

 

CBT directly hurts our cause. I understand if it helps someone by a modicum, which in turn can help reduce their stress/anxiety surrounding tinnitus. However, for the severe sufferers, that is just not the case. That one person who was lucky enough to have been helped likely had a more mild version of tinnitus. That’s just probability.

With no disrespect or disregard to that person’s experience, they will probably go on to post a success story of how getting their mind right helped them cope and habituate to tinnitus. This happens all too often and the end result is that this experience comes to represent the tinnitus community. People don’t see or hear about the severe cases. If they knew how bad we are suffering and how much we would pay for treatment, our cause would gain more traction.

It’s fortunate that companies are now aiming to capitalize on the massive hearing loss market. Regenerative medicine looks promising, and in my opinion, will help us a great deal. Make no mistake about it: CBT is not our friend. Regenerative medicine and biomedical science is our friend.

 

I'm doing a lot better now but when my noxacusis setback was at its worst, 6 months ago, no amount of 'positive thinking' could magically fix it. It felt like a very real physical 'injury' to the ear almost as if a filter had been removed (a description I have seen others use on this site) and certain sounds were just incredibly piercing and triggered pain symptoms. I credit my recovery to time and rest. Thank goodness for the likes of Pollard, Liberman, and Fuchs who will see us out of these dark ages.

 

I've said this before, but CBT should be something everyone considers trying privately and never talks about. It shouldn't show up in literature. Either this or there should be a different name for severe tinnitus/hyperacusis that CBT can't touch. There's a (surprisingly) large group of people that believe that tinnitus is always an outlook problem. This is really the problem.

 

That is on point of how my ears feel I have also often described it as when you fall and scrape your knee a bit or something like that. That sore, sensitive, vulnerable sensation... that is what my ears feel like, luckily not 24/7, but a lot and seems to be getting more and more often.

 

Doctors who confuse correlation with causation should tell us how often they managed to make an angry dog happy by grabbing its tail and artificially wagging it.

 

No wonder the comments are turned off.

 

The funny thing is I could apply his statement to my visual snow. When I'm stressed, I usually notice my visual snow more. In the beginning, the VS symptoms even scared me but reminding myself that it's "just" visual snow helped me to calm down and made it less distressing. My brain can now even tune it out for several hours.

But that's because my visual snow is mild.

So I can see how this statement could apply to certain people with tinnitus but the issue is that it's being applied to all patients, leaving no room for nuance and ignoring the experience of severe sufferers. It's ironic that many people stress that tinnitus is such a heterogeneous condition but when it comes to tinnitus distress there are no subtypes, it's just your attitude.

Some people will never believe that it's not just your level of emotional acceptance that decides your level of distress. They can always say "if you say you're debilitated that means you must react negatively to it, thus you haven't achieved true acceptance."

 

CBT (while it might be well intentioned), is one of the main reasons why tinnitus is not taken seriously.
This is a very big problem because in order to start searching for a cure, the condition must be taken seriously first.
Sadly, this is obviously not the case with tinnitus.

CBT is basically a Trojan horse of sorts, since it carries the hint of mental illness, from which it spirals into other nasty implications.
The outside world is already confused about tinnitus at the best of times, so this CBT connection with tinnitus is doing the severe sufferers a huge disservice.

The logic is as follows:
If people are able to reduce their tinnitus just by talking to someone, obviously it can't be that bad.
This of course carries another very damaging implication, because if someone is not responding to the CBT therapy, there must be either a problem with their attitude, or they must be just weak.
We of course know this to be an idiotic assumption, nevertheless this is how people think and we must keep that in mind when praising the virtues of this so called "habituation", which is a house of cards to begin with.

This problem is further compounded by all the "tinnitus therapy" clinics, since they create an illusion that tinnitus can somehow be treated.
Big advertising billboards with such content could be seen quite often in bigger towns.

Last (but certainly not least), there are all kinds of habituation Kool aid drinking cult leaders, such as Julian Cowan Hill, whom set our cause backwards every time they open their mouth (and whom also seems to make a pretty good living at doing so).

Tinnitus is a physical problem.
The sound I hear is as real as the chair I'm sitting on, as I'm typing this post.
It is not imaginary and no therapist on this planet can just "talk" me out of it.
Personally, I find that kind of stuff insulting to people's intelligence to begin with.

Yes it can destroy people both mentally and physically, but it starts as a physical problem, most likely something to do with damaged hairs inside the cochlea.

Maybe another unfortunate aspect is the location, as people assume that anything wrong inside the head must therefore equal mental ilness.
I would compare it to someone jamming a screwdriver into their computer.
This computer being our brain of course.

Either way, we are literally pissing against the wind here.

 

I tried it. It did squat for me. Spent $$ and still suffer. Same goes for TRT. Many people have stated these treatments have failed them. I am glad it has helped some. It IS being touted as one of the solutions for tinnitus. It was recommended by my local health authority which is why I got sucked into it.

 

...when tinnitus-related distress and anxiety is minimised...

same old....

 

I'm willing to bet that you got victim shamed more than once for "failing" these so called therapies, which are the modern equivalent of blood-letting.

[SARCASM ON] Now that the blame got shifted back onto you where it belongs, there is no need to be wasting money by searching for a cure, because we all know that "everyone can habituate". [SARCASM OFF]

 

These treatments FAIL to help many of us. Which is prolly why they are not covered by most health authority. We just had a member post how it worse then breast cancer. If I did get cancer I can just let nature run it's course.

 

The thing is... from what I've read, CBT/TRT is meant to treat the direct anxiety that tinnitus induces. See, I never even had that. It never scared me (it did upset me) but it makes me scared for my future, pretty much. No therapy can help me with the fact my future and life are so drastically changed at the age of 23/24.

I've had CBT in the past to deal with mental health issues, and I was doing okay until tinnitus hit me (read: many good days, just tired of the state of the world lol). But I fail to see how it's going to make me feel better knowing my life is changed forever and nobody being willing to understand that because everyone fails to highlight tinnitus is more than just a sound. I don't even have hyperacusis and I feel thankful for that, but intrusive and fluctuating tinnitus definitely change the way you live your life, and it sucks. Therapy won't change that. Only time can help me get over the grief of it.

 

There are many people who have very intrusive tinnitus who have benefited from CBT and TRT. I don’t think that it’s an “either or ” situation. Yes, tinnitus is real and it can be very debilitating for people and for others not so much. I don’t know what the contributing factors are that make it debilitating for some and not for others. When I developed tinnitus, I learned many people I know in my own life have tinnitus and it doesn’t bother them at all. And for some it’s intrusive and they hear it over everything. I know my tinnitus is high-pitched and intrusive. I hear it all the time. And it impacts my sleep and impacts the way I feel about my life and it makes me very sad. And I am very scared that as I age and my hearing gets worse so will my tinnitus. But, if CBT improves my quality of life to any extent, I’m all in. What are my alternatives?

We already know that tinnitus is a very complicated and is a multi factorial condition often rooted in issues with the brain not necessarily the ear, although they start there. Given the complexity of this condition, I’m not banking on a cure in my lifetime, although I do hope for it. I don’t intend to spend the next 30 or 40 years that I may have left (if I am lucky) on this earth living in misery.

I don’t in any way begrudge anyone who doesn’t want to do CBT or TRT. If it’s not for you, don’t do it. But don’t suggest that other people doing it means that they don’t want a cure or that they are somehow taking resources away from a cure. There’s no public funding going to CBT and TRT. You pay for it yourself or insurance is paying for it if you’re lucky.

I am definitely frustrated at the fact that there are some tinnitus experts out there (who have it and are living full lives)who do have treatment programs and they charge an arm and a leg and they don’t take insurance. I have a problem with that! I’ve spent a lot of money paying some of those experts for at least consultations but I couldn’t afford to stay in treatment with them. So I am doing treatment with my own cognitive behavioral therapist, which my insurance pays for, and she’s very knowledgeable about health conditions. The principles of CBT are the same whether you’re applying it to anxiety, panic disorder, chronic pain or anything else that’s causing you distress.

I think a lot of ENTs get a bad rep, given the profound limitations on treating tinnitus or even knowing what the specific cause of it is for any given patient give it is so complex. I certainly understand that many doctors ‘ bedside manner could improve and telling people there’s nothing they can do and you have to learn to live with it is probably not the best messaging, but truth be told it is the reality. At least for now. My ENT is lovely and he feels really badly for me, but there is nothing he can do for me. And I do believe that the majority of tinnitus sufferers are able to go on and live full and happy lives. Therefore, it’s not a condition that people necessarily associate with profound debilitation in relation to the percentage of people who suffer from it. I think that’s the biggest barrier to finding a cure quite frankly. If we were all dying from it they would be focusing on finding a cure. And I want to emphasize that I do hope they find a cure. Or at least some treatment beyond CBT and TRT. And I do firmly believe there needs to be more funding.

However, if you hold on to the thought that nothing but a cure will do, you’re going to be missing a big chunk of your life, if not the rest of it, because I don’t think a cure is around the corner despite very encouraging and recent advancements in research for hearing loss and tinnitus. And I definitely hope that I will be a success story!

 

What makes it debilitating for me is that I'm in my early-mid twenties. I am really young. I did a LOT to protect my ears. Wore earplugs to anything loud, limited headphone use, and kept track of the volume. I knew about the dangers of loud noise so I protected to the best of my ability while still having a somewhat enjoyable time. My life really hasn't been easy whatsoever, so music was one of the few things making it worse.

My tinnitus is intrusive. It fluctuates. I can hear it over music, so that enjoyment has gone down a lot. I also have other (unrelated) health conditions for which silence was the best way to recharge. Can't do that anymore either.

My tinnitus is already bad and I'm terrified of it getting worse. I don't even know what caused mine in the first place or what makes it fluctuate by the hour no matter what I do or don't do.

Plus I have ADHD and related sensory issues, and I've always been incredibly sound focused. I'm hyper aware of any noise and so I cannot tune out my tinnitus ever at all.

I'm happy CBT helps people and I don't discourage people from trying. But it should never be presented as a treatment for tinnitus itself. Related mental problems from tinnitus, yes. But not tinnitus. Because this way, they get to say people were successfully treated which leaves less of a need for a real treatment/cure. This way people can forget about it and go to bed in complete silence at the end of the day, unbothered about the fact many of us are suffering 24/7.

Also, I hate that just because so many people have such a mild form, that's the perspective they have of tinnitus. No way. We should look at this condition from its worst cases. It's only fair.

 

Offering my opinion based on personal experience and research. If something I say offends someone, that's not my intent.

I've had tinnitus for about as long as I can remember. But it was only audible in complete silence. For both of these reasons, it never really bothered me and I thought it was just something normal. Even when I learned that it wasn't, it still didn't freak me out.

Just a couple weeks after I turned 36, though, things took a turn for the worse when the tinnitus, for no reason neither I or my doctors understand, got significantly louder. That high pitched whining sound went from easily being masked to being audible over my television, noises outside, and pretty much everything. It didn't seem to be caused by damage from loud noises, no wax buildup, no ear infection, no tumors, and my stress levels at the time we're just fine. For whatever reason, it just got louder one day.

The next couple of months were pure misery. Every waking moment dominated by that high pitched whine. I saw doctors, I cut sugar, caffeine and salt from my diet, I took steroids and antihistamines prescribed in case my TMJ or an allergy was agitating the tinnitus, I took two different anxiety medicines and a sleeping medicine... I did everything I could to get the tinnitus and my emotions under control. But-nothing-helped. In fact, the combination of meds I was on made the tinnitus louder each day that I took them until it was so bad I just quit taking the meds (except the sleeping meds), and it went back to the volume it was before I took the meds. But it was still so loud. I remained desperate, and felt hopeless.

Then I decided to see a new psychiatrist. The first psychiatrist didn't seem to take my tinnitus seriously. I even made an emergency appointment at one point to tell her the anxiety meds just weren't helping (before I quit taking them) and that I was having suicidal thoughts. She told me that she wasn't concerned with the tinnitus because "even if you could cure the tinnitus the anxiety would still be there." She insisted I keep taking my meds and that only added to the hopelessness and suicidal thoughts.

The new psychiatrist, though, actually listened and decided to put me on a new anxiety medicine (Ativan) and keep me on the sleeping meds. When I took the Ativan, it only took about an hour or so and my tinnitus' volume decline substantially. I was so happy that something finally helped that I even cried about that (but it was a cry of joy).

Ultimately, after my own experience and talking to others who have tinnitus, I think that what helps people varies (as can the causes of tinnitus). CBT seems to help a lot of people but not everyone, Ativan seems to help some but makes tinnitus worse for others, so I guess what I'm saying is that there really is no need to argue over what helps.

Is the suffering of tinnitus purely a result of uncontrolled stress and depression? It seems that also depends. Speaking for myself, tinnitus only affected my emotions when it got uncontrollably loud, but didn't seem to be caused by stress at all. I've even come off the Ativan a couple of times just to test some of these concepts (responsibly tapering), and the stress, even when the tinnitus returned to its previously loud levels, wasn't that bad because I knew I could take a pill and the tinnitus would quiet. Despite overall stress being lower even while off the Ativan, the tinnitus still gets as loud as it was before the medicine. Plus, other anxiety meds like Buspar just had no positive affect on my tinnitus.

I haven't tried CBT (psychiatrists are expensive) but for many people it helps. I don't think it would help me specifically, but if money weren't a factor I'd try it. I also don't believe CBT is doing anything to hurt the search for a cure. Diseases that directly cause death and are easily provable and visible like cancer, AIDS, and others will always take priority over issues like tinnitus, mental illnesses, and chronic pain that can't be seen with a common scan like CAT scan, x-ray, etc.

So, I've been there, I've suffered, I've experienced indifference to my condition even from professionals, my tinnitus doesn't seem to correlate with my mental state... and why Ativan is the only thing that helps is beyond me and every medical professional I've talked to. However I really doubt treatments to deal with tinnitus hold back a cure (and that's assuming there is a single cure for all causes of tinnitus). I do really, really believe this: if most people had to live with tinnitus, we'd have a cure or cures within a matter of a few years, perhaps sooner. It really is something difficult to understand unless you had it. THAT will hold back a cure or cures.

 

CBT through direct therapy is expensive, but it can be learned through books, audio video, etc. It's a good way to enable habituation to develop, faster and more efficiently. Of course there are those sufferers with severe tinnitus, who need a cure ASAP, but until that happens, many of us with mild, moderate, or sometimes severe tinnitus, can benefit from CBT.

 

I saw Miriam Westcott in 2014 and one of my first questions to her (between breakdown moments) was "why am I so distressed?" While she couldn't answer with any certainty she did say it was a common question that patients asked her, so it would seem that this distress is part of the complex that makes up the total disease process. I'll answer it for her now as I think it may be. Hearing, like sight, is a fight/fright/flight sense at its most primitive, and unpleasant, threatening sounds awaken our Adrenergic system, placing us into hyper-vigilance. Tinnitus is an unpleasant, threatening sound and the body goes on FFF alert which reaches a point of saturation where no resolution is possible because the sound isn't leaving. We know what it is, and we can rationalise it intellectually , but our baseline physiology is not as interested in doing that as our logical mind is, as it is largely an autonomous soup of electrolytes and hormones operating in a fairly fixed pattern of responses. We are trapped in a positive feedback cycle of stress which rarely if ever finds relief. This is why sedatives like benzos work for so many of us, and this is also why sound therapy and CBT are proposed as treatments: it is all based on damping down this physiological (not psychological), hormonal reaction and to train the remote control mind to not see the tinnitus sound as a threat (undoing innate conditioning). Whether it works or not depends on many things, one of which I've alluded to before here and that is the grief factor, which is about the recognition of what you lose when you develop tinnitus (as the musos here will attest), so you have a 1-2 punch of an autonomous physiological response driving a saturation of stress hormones, and you have an emotional/grief response on top of that, which feeds further into the autonomous stress response. There will be no pill or surgery in the near or middle future to deal with this problem beyond the luckier outliers with a clear diagnosis, so the theories behind sound therapy and CBT are kind of all we have left to work with. The trouble there is that what I have outlined is really a theory with no research to prove it one way or the other (but it is the best explanation I can come up with...so far). The next problem this raises is that therapy for very real tinnitus distress is so-far still half-arsed and not really driven by a sound theoretical model, hence the almost DIY nature of it all. We have a problem that needs a completely holistic approach to management here and now, and hardly anyone seems able to find this anywhere. That's why I say, "same old". Nothing changes, and we are still not taken seriously outside of our own community. For me tinnitus and hyperacusis were worse by multiples than my bladder cancer diagnosis and chemo/surgery. It is a very difficult area and I see here the brutal arguments with @Michael Leigh about "victim blaming" (which I don't think is really his intention at all) but really its not about that anyway, its really about the quality of understanding among the carers as to what is happening to us, and the quality of therapy on offer, of which there isn't much. You've got to not just want to get into a better situation, you've also got to believe its possible and be shown that its possible, and poor professional care will take you further away from that, as I experienced in my early days here. God, I saw some dickheads.

I'll go back to lurking hibernation now.

 

@PaulBe

Well said Paul and I agree with you. I am sorry to hear about your diagnoses and hope your treatment has been a success. Those that say I victim blame that is definitely not what I'm about. Peruse their posts and all they have to offer is negativity, negativity doom and gloom, morning noon and night. I am not talking about people that are having difficulty coping with tinnitus and visit this forum for help and support. I am referring to seasoned moaners and groaners and they know who they are. They sit at their computers and blame their government and medical professionals for not finding a cure for tinnitus and believe, any treatment other than a complete cure is a waste of time. The same applies to hyperacusis. They will do their best to quash every ounce of positivity if someone says they are having success with a treatment and worse if they dare to recommend one!

Take care
Michael

 

A brilliant description of what this condition is all about.

 

Not really.

Man in severe pain cannot function properly unless physiological needs are met first. For those with severe pain, psychological treatment can not train the mind without physiological care.

Recommended care is often CBT, because with non terminal conditions a treatment plan must be charted for medical accreditation for State and Federal licensing and for government grant funds.

Walk up to a person in severe pain and ask them how are you today. Then ask them again later after a stressful event has happened. Is CBT going to cover one's emotions like a warm cozy blanket 24/7.

Some of us are getting tired of others who are not in severe pain or have severe tinnitus, tell us that CBT and mind games will save our day.

 

But that's what I said Greg. I stressed that the physiological (innate) reaction was what had to be targeted. That's why I bolded physiological. Treatment should start with recognising and removing the sense of physical threat that the autonomic nervous system has determined is there. That is where things should start from. From that the psychology would likely become much easier to manage.

And this is absolutely the truth, and is a major hindrance to getting a decent holistic treatment model up and running. Its the same here with our State-based model of healthcare. Funding models stifle innovation and promote one-size-fits-all care because things have to fit pre-determined definitions for funding/coding purposes (which, if I recall, you worked in an area where this is quite relevant).

 

I just question CBT as a way to dampen down the physiological and by this _____ train the remote control mind to not see the tinnitus sound as a threat. And I question that "treatment should start with recognition and removing the sense of physical threat that the autonomic nervous system has determined."

Any subject matter can be debated, sometimes with motive that's not truthful. Sometimes one view or beliefs can be hurtful to the support system of another - self included.

Can one who's not in serious physical pain and (tinnitus and hyperacusis is physical pain) tell another that CBT will help them? !