Why Is There Such a Stigma About Cognitive Behavioural Therapy?

[Jack Straw]

You're writing:

"By using CBT it reduces stress and reduces the increased tinnitus caused by stress. It also allows the brain to habituate better.

this makes tinnitus less bothersome and less intrusive over time because your brain can, to a certain extend, tune it out. This isn't a cure, but it gives people the ability to live their life on a better level than previously.

You're stating it like a fact. Like it WILL happen. The fact is that for some CBT has zero effect. It is a very good idea to try it and hopefully it helps, but like I said, there are no guarantee.

I'm not sure what you are looking for here. I thought it was a universally accepted and known concept that not all treatments work for everyone. Historically CBT works for treating anxiety and depression even better than SSRIs. Of course it isn't working for 100% of people but to insinuate it doesn't work for a majority is also factually wrong.

 

[JohnAdams]

Idk what either of you are saying at this point.

I'm not sure what you are looking for here.

What do you not understand? I feel like we are being perfectly clear.

 

[BobbyH]

I haven't been here in a while however I just got an email telling me about the TinnitusPlay app so I downloaded it and read the thread about it on here. Just before I closed the thread, I saw this thread. I thought I'd share my story and thoughts on this topic.

I have severe tinnitus and a medical diagnosis of depression secondary to my tinnitus. The depression is severe enough to be debilitating and not a day passes where I think of ending it all. I am being treated by the VA (Veterans Administration) because my tinnitus is the result of acoustical trauma in a combat zone. Thankfully no one promised me a cure and I have been told by all the different clinicians that there is no cure. I remember my ENT telling me there is no cure and that, if he ever learned there was a cure, he would call me first due to the severity of my suffering.

About 2 years ago, I reached the point where I was moving from thinking of ending my life to thinking about a plan. I asked a VA audiologist for help and she worked endlessly and very hard to find me equipment to help me to survive. She never promised a cure but she did promise to help me manage to stay alive. I went to a medical doctor who never promised a cure but he prescribes me medicines that help keep me manage my depression. Finally, I do see a PhD psychologist with the VA who understands my depression and anxiety is the result of the non-stop insane screaming in my head and uses CBT to help me survive. He tells me he is not there to fix my tinnitus; he is there to help me with my depression so that I can manage the desire to end this. Can he cure my depression? Not really, my depression is recurrent because the tinnitus never goes away. When it spikes, he has given me coping skills to stay alive. When the battle overwhelms me, he has given me tools to stay alive.

I have a team of dedicated professionals who empathize with the tinnitus and subsequent depression from the tinnitus. Everyone has told me they wish there was a cure but there isn't so the best they can do is give me tools and skills to make it to tomorrow. I don't think very far into the future; I just try every day to make it to tomorrow.

So, CBT, at least for me, has absolutely nothing to do with my tinnitus and has everything to do with my anxiety and depression that was caused by my tinnitus. CBT has a scientific basis in helping people with mental disorders caused by a myriad of different physical, emotional, or chemical issues. My psychologist is treating my mental issues that happened to be caused by tinnitus. If someone were to ask me why I see a psychologist that practices CBT, I would tell them for my depression. Is there a stigma for learning coping skills for my depression with CBT? Maybe to others but not to me. Unfortunately my depression keeps me from worrying or caring what others think. The only thing in my mind these days is how to survive to tomorrow. My audiologist helps me manage my tinnitus and my psychologist helps me manage my depression. My tinnitus and depression are closely related to each other but are also separate issues.

So, I guess what I'm saying is that CBT has nothing to do with tinnitus but everything to do with the mental and emotional fallout of a tinnitus sufferer. I pray every day someone finds a cure for tinnitus. Until then, I will never experience silence again and my CBT keeps me from prematurely experiencing silence permanently.

Just my thoughts and feelings being shared. Please don't beat me up over them; I won't reply.

Respectfully and with empathy,
Bobby H.

 

[Star64]

I'm not sure what you are looking for here. I thought it was a universally accepted and known concept that not all treatments work for everyone. Historically CBT works for treating anxiety and depression even better than SSRIs. Of course it isn't working for 100% of people but to insinuate it doesn't work for a majority is also factually wrong.

You have made an important point, not all treatments will work for everyone, including medication or CBT. Having worked in mental health previously I would say they both only rate a 50 to 60 percent chance of working. However CBT is less likely to cause you any further issues unlike medication.

That being said most CBT practices require a level of cognitive ability and not all people have that when in a distressed state such as severe tinnitus, especially in the early stages so timing of treatment also comes into play.

CBT when utilized for some mental health conditions such as anxiety and depression can also cause a person to become more destabilized due to confronting some of the issues that are behind their distress.

CBT should not be discounted altogether though, as some do benefit from it.

It's about time we had proper treatment options, I have been waiting 18 years, sadly nothing has changed.

We are still not considered a serious medical problem and until that happens we will only get second rate treatment.

 

[Tybs]

I haven't been here in a while however I just got an email telling me about the TinnitusPlay app so I downloaded it and read the thread about it on here. Just before I closed the thread, I saw this thread. I thought I'd share my story and thoughts on this topic.

I have severe tinnitus and a medical diagnosis of depression secondary to my tinnitus. The depression is severe enough to be debilitating and not a day passes where I think of ending it all. I am being treated by the VA (Veterans Administration) because my tinnitus is the result of acoustical trauma in a combat zone. Thankfully no one promised me a cure and I have been told by all the different clinicians that there is no cure. I remember my ENT telling me there is no cure and that, if he ever learned there was a cure, he would call me first due to the severity of my suffering.

About 2 years ago, I reached the point where I was moving from thinking of ending my life to thinking about a plan. I asked a VA audiologist for help and she worked endlessly and very hard to find me equipment to help me to survive. She never promised a cure but she did promise to help me manage to stay alive. I went to a medical doctor who never promised a cure but he prescribes me medicines that help keep me manage my depression. Finally, I do see a PhD psychologist with the VA who understands my depression and anxiety is the result of the non-stop insane screaming in my head and uses CBT to help me survive. He tells me he is not there to fix my tinnitus; he is there to help me with my depression so that I can manage the desire to end this. Can he cure my depression? Not really, my depression is recurrent because the tinnitus never goes away. When it spikes, he has given me coping skills to stay alive. When the battle overwhelms me, he has given me tools to stay alive.

I have a team of dedicated professionals who empathize with the tinnitus and subsequent depression from the tinnitus. Everyone has told me they wish there was a cure but there isn't so the best they can do is give me tools and skills to make it to tomorrow. I don't think very far into the future; I just try every day to make it to tomorrow.

So, CBT, at least for me, has absolutely nothing to do with my tinnitus and has everything to do with my anxiety and depression that was caused by my tinnitus. CBT has a scientific basis in helping people with mental disorders caused by a myriad of different physical, emotional, or chemical issues. My psychologist is treating my mental issues that happened to be caused by tinnitus. If someone were to ask me why I see a psychologist that practices CBT, I would tell them for my depression. Is there a stigma for learning coping skills for my depression with CBT? Maybe to others but not to me. Unfortunately my depression keeps me from worrying or caring what others think. The only thing in my mind these days is how to survive to tomorrow. My audiologist helps me manage my tinnitus and my psychologist helps me manage my depression. My tinnitus and depression are closely related to each other but are also separate issues.

So, I guess what I'm saying is that CBT has nothing to do with tinnitus but everything to do with the mental and emotional fallout of a tinnitus sufferer. I pray every day someone finds a cure for tinnitus. Until then, I will never experience silence again and my CBT keeps me from prematurely experiencing silence permanently.

Just my thoughts and feelings being shared. Please don't beat me up over them; I won't reply.

Respectfully and with empathy,
Bobby H.

Thank you so much for helping me regain some faith that there are honest professionals who actually know what they are talking about. I guess it's mostly about finding the right ones...

I hope that one of the currently upcoming treatments will actually be a real cure for you.

 

[Tybs]

People are claiming it can lower the volume and that's not true.

I don't believe CBT can lower T in base either. However, I don't think that's what @Jack Straw is saying.

His description seems to match my initial state of T. It started in April, but did not really bother me until my ENT told me to just live with it. That same evening, I got totally stressed out, and my T spiked through the roof. It did not return to its old state before weeks later, when I learned some methods to calm down a bit.

Since my cause is related to the neck, and stress will tense up the muscles even more, it makes sense that the perceived sounds increased as well. I personally don't think stress can literally be the cause of T, but I do acknowledge the possibility of it increasing T in those cases where muscles are involved. This pretty much aligns with what Jack seems to try to point out: in those cases where there is a T increase due to stress, the CBT methods could help to reduce the stress, and therefore help in getting the T back to baseline. If the baseline is already 9/10, then this won't help much, but for those with a baseline of 4/10 it will matter a great deal.

Obviously, whenever the muscles do not contribute in someone's T, then CBT will have no effect on perceived sounds. I can imagine this is mostly the case with sound-induced T. If estimates I read somewhere online are correct (70% of T cases = sound-induced), then CBT won't do much for many of them...

 

[Ed209]

Ok, here's my synopsis so far:

• It's clinically proven to work, meaning it's backed by scientific evidence. This means it can help some people deal with the emotional fallout, but not everybody.

• The methods behind it can be accessed relatively cheaply via books and the internet. However, some may benefit more from the guidance of a therapist as it takes a certain degree of discipline to self-administer these sort of things.

• It does not take funds away from curative research; this is simply not true. Curative research can be funded at any time, by anyone. The money that has gone into doing CBT studies was designated for that purpose only.

• Some practitioners may exaggerate what CBT is actually for and what it can do. However, this is a problem with them and not CBT itself, so really, all anger in this department should be directed towards those who are mis-selling it.

• Creating a stigma around a scientifically proven method seems counterintuitive on a support forum where a certain percentage of members may actually benefit from it. This is merely my opinion.

 

[Tybs]

@Ed209 Agree with most of your post. One small remark though:

• It does not take funds away from curative research; this is simply not true. Curative research can be funded at any time, by anyone. The money that has gone into doing CBT studies was designated for that purpose only.

• Some practitioners may exaggerate what CBT is actually for and what it can do. However, this is a problem with them and not CBT itself, so really, all anger in this department should be directed towards those who are mis-selling it.

In short term, this is definitely true. Funds for CBT go into CBT - the issue concerning representation lies with those practitioners. But on the long term, these things are linked. As I mentioned my concern in an earlier post, once the world incorrectly "experiences" CBT as a cure, research in general could stop focusing on retrieving new insights in tinnitus, which would be a bad development. Therefore, the message of CBT not being a cure should remain clean.

I was delighted by a small part in @Markku earlier post though:

I think Tinnitus Hub, the organization behind Tinnitus Talk, needs to create a new refined mission statement. We don't support more funding going into research on CBT or psychological interventions. This needs to be made clear in our mission statement.

I interpret this like:
"Tinnitus Hub wants to make it clear that CBT is not to be considered as a cure: and since a cure is what we're aiming for, we focus on supporting cure-related fundings."

Of course this is my way of interpretation, please correct me if I'm wrong.

Again, this does not mean that CBT is useless, far from it. As long as the outside world has a clean impression of what it stands for, CBT remains a good support bar for some of us and should be valued as such.

 

[david c]

Some brief points:

Calling CBT a tinnitus "treatment" is itself somewhat misleading as it is really only aimed at "treating" the emotions you may experience with tinnitus. In this regard it may be helpful, though how much will depend on the competence of the individual therapist.

If your CBT therapist starts offering advice about tinnitus "management" issues and issues around noise exposure it may well be worth testing how much they actually know about tinnitus. If you have done some research into tinnitus already, ask them some questions to which you know the answer. It may well demonstrate that they are actually quite ignorant about tinnitus generally.

It helps somewhat if the CBT therapist themselves suffer from tinnitus. Those that don't often have problems understanding a "subjective" health condition. In this regard, the ability to get help and advice from fellow sufferers - including for example on Tinnitus Talk - may well be more useful than any CBT therapy.

Funds for Tinnitus Research are finite not infinite. Clearly then research funds spent on duplicating the many previous research studies on CBT are funds which won't be available for other, more useful curative research.

 

[Ed209]

@Ed209 Agree with most of your post. One small remark though:

In short term, this is definitely true. Funds for CBT go into CBT - the issue concerning representation lies with those practitioners. But on the long term, these things are linked. As I mentioned my concern in an earlier post, once the world incorrectly "experiences" CBT as a cure, research in general could stop focusing on retrieving new insights in tinnitus, which would be a bad development. Therefore, the message of CBT not being a cure should remain clean.

I was delighted by a small part in @Markku earlier post though:

I interpret this like:
"Tinnitus Hub wants to make it clear that CBT is not to be considered as a cure: and since a cure is what we're aiming for, we focus on supporting cure-related fundings."

Of course this is my way of interpretation, please correct me if I'm wrong.

Again, this does not mean that CBT is useless, far from it. As long as the outside world has a clean impression of what it stands for, CBT remains a good support bar for some of us and should be valued as such.

I agree that further research into CBT is pointless and I've said this numerous times. I'm a strong advocate of wanting to see a lot more curative research, so please don't misinterpret my post as meaning I'm happy with the current state of affairs. I'm not. Far from it.

 

[Jack Straw]

What do you not understand? I feel like we are being perfectly clear.

You want CBT to be taken off as a treatment for tinnitus. Your right it doesn't treat tinnitus itself.

It does treat the symptoms of anxiety and depression that come with tinnitus that many people in this thread have stated. Many people also acknowledged that when their tinnitus spiked due to stress CBT helped reduce the spike back to baseline because the stress was relieved.

For some reason you have this hate for CBT when it helps some people. I'm sorry it didn't work for you but it helps others so saying it doesn't have a basis in tinnitus treatment is wrong.

 

[JohnAdams]

For some reason you have this hate for CBT when it helps some people.

I don't hate CBT. I'm just blown away that it is called a treatment for tinnitus, and it surely is called that by the establishment.

Tinnitus is ringing in the ears. CBT doesnt treat that.

What I am saying is painfully, excruciatingly simple.

 

[Ed209]

I don't hate CBT. I'm just blown away that it is called a treatment for tinnitus, and it surely is called that by the establishment.

Tinnitus is ringing in the ears. CBT doesn't treat that.

What I am saying is painfully, excruciatingly simple.

This is largely down to semantics, though. It's only a treatment insofar as helping some people cope with the distress it can cause, and everybody in the medical field knows this (or at least, they should know this).

What we really need is better tinnitus awareness amongst the general public, and a lot more attention paid to curative research. I think there should be at least some education - about the dangers of being exposed to sustained loud noise - in schools. In fact, this is something my wife already does.

Until we make those breakthroughs and conquer new ground, we all have to find a way to cope for today. That could be with the help of meditation, CBT, a sport, a hobby, exercise, etc. We all have to find something or at least try to find something as our lives are ticking away. My point is that we have nothing else other than trying to cope with it.

In order to make meaningful changes and to break the current status quo, the tinnitus community has to be more vocal and demanding. Blaming CBT for the lack of breakthroughs is a red herring.

 

[JohnAdams]

Until we make those breakthroughs and conquer new ground, we all have to find a way to cope for today.

Which is exactly like saying, "Until we find food, we will have to fill our bellies with mud pies to cope for today.". This was my original analogy.

 

[all to gain]

What we really need is better tinnitus awareness amongst the general public... I think there should be at least some education - about the dangers of being exposed to sustained loud noise - in schools. In fact, this is something my wife already does.

I told my step-daughter about the dangers of loud noise and about ototoxic drugs. I told her all about tinnitus and how it affects me. I told her that if she wants to go to concerts or nightclubs that she should wear ear plugs or even better not go to them at all. While I was away she went to a concert without ear plugs. I only just found out. She wants to go to more concerts so I told her I will buy her some good ear plugs. She doesn't want them. I've brought the subject up a few times in the last week, but she won't have any of it. She thinks I'm just being stupid. I told her about youngsters on this site, but she's not interested. I think that she thinks I'm just being all OCD about it. As my wife thinks I'm a hypochondriac, I presume she has talked to her daughter and to ignore my advice. I'm going to give it one or to more goes before the next concert in February, and I will buy her some ear plugs anyway. Just hope she will see the light before it's too late.

When you're own step-daughter won't listen to you, it makes me think the general public will be even more difficult to persuade. Or maybe it's because I'm so close to my daughter that she dismisses my advice out of hand.

The same goes for medication. I've asked my wife to check the side effects of anything before she even considers giving it to our children. She won't have any of it. And I suggested we gets some ear plugs for our children if she wants to take them to see a film. Again, she won't have any of it

However, when I put my ear defenders on at home my two young sons want to put theirs on too. Hopefully they will continue to do so when they get older. At the same time I don't want them to become afraid of noise altogether.

People think it will never happen to them.

 

[Lane]

CBT is just thinking logically about your own emotions. I never understood why people need help doing that.

I find a certain humor in your comment, but it would seem a lot of people aren't able to do that. Especially when confronted with circumstances that are entirely new and challenging. When that happens, we often revert to doing things that have successfully worked for us in the past, and which often don't work.

But new challenges usually require new coping strategies. I'm not familiar with the intracacies of CBT, but it appears to be very effective in teaching people new kinds of coping skills. I've developed my own coping "system" over time that probably has some of the hallmarks of CBT, but primarily incorporates trying to think creatively in discerning what might work for me, and then get to work seeing whether or not it does.

My latest endeavor: -- At least part of my tinnitus is somatic, and I recently starting massaging my face and neck for at least 10 minutes with St. John's Wort Oil before going to bed at night. It's quite calming, and I feel there's reason to be hopeful this may take things down a notch (it already has temporarily). It also seems to be helping me sleep.

my cause is related to the neck

@Tybs, below are two links. The first one is to a post I made on a unique reflexology technique that I do every day that helps me substantially in controlling neck tightness, pain, and spasms. The second link is to another post I made that has some tinnitus testimonials from people who did a unique "atlas repositioning" technique. I've done this technique, but have now learned how to do this at home with good success.

Tinnitus from Neck Spasm?
Atlasprofilax

 

[GregCA]

Tinnitus is ringing in the ears. CBT doesnt treat that.

If a root cause isn't fixable, I don't see anything wrong with anything that can help manage symptoms or comorbidities.

Should people stay away from pain killers simply because they don't actually cure the underlying cause?

That's a stance that I doubt will hold for very long when passing kidney stones in the ER ("no Doc, I don't want the morphine, because it doesn't address the root cause! I have a kidney stone!")
I have first hand experience with it, unfortunately. Anyone with such pain will beg for painkillers.

 

[Ed209]

If a root cause isn't fixable, I don't see anything wrong with anything that can help manage symptoms or comorbidities.

Should people stay away from pain killers simply because they don't actually cure the underlying cause?

That's a stance that I doubt will hold for very long when passing kidney stones in the ER ("no Doc, I don't want the morphine, because it doesn't address the root cause! I have a kidney stone!")
I have first hand experience with it, unfortunately. Anyone with such pain will beg for painkillers.

Snap when it came to my shoulders. I was soon after painkillers as it was excruciating.

 

[Lane]

Just my thoughts and feelings being shared

Thanks much @BobbyH for sharing your remarkable story and insights. I have the utmost respect and admiration for your persistance in trying to make it through your almost unbearable situation. I'm also struck by your grace, and how you seem to be approaching things with kind of a mix of dignity and equinimity. You're a good writer, and have much to offer if you can make it through these trying times. Wishing you the very best.

 

[Ed209]

Thanks much @BobbyH for sharing your remarkable story and insights. I have the utmost respect and admiration for your persistance in trying to make it through your almost unbearable situation. I'm also struck by your grace, and how you seem to be approaching things with kind of a mix of dignity and equinimity. You're a good writer, and have much to offer if you can make it through these trying times. Wishing you the very best.

I agree wholeheartedly, Lane.

 

[bobvann]

Tried it too. Did not do much. I don't mind mindfulness, it can be relaxing all the same. I don't practice it like I did when I was doing the sessions. I was able to do it in a group and my plan kicked in for over half. So it wound up being reasonable. I do use some of the techniques when I am tinnitus spazzing.

 

[PeteJ]

This is largely down to semantics, though. It's only a treatment insofar as helping some people cope with the distress it can cause, and everybody in the medical field knows this (or at least, they should know this).

What we really need is better tinnitus awareness amongst the general public, and a lot more attention paid to curative research. I think there should be at least some education - about the dangers of being exposed to sustained loud noise - in schools. In fact, this is something my wife already does.

Until we make those breakthroughs and conquer new ground, we all have to find a way to cope for today. That could be with the help of meditation, CBT, a sport, a hobby, exercise, etc. We all have to find something or at least try to find something as our lives are ticking away. My point is that we have nothing else other than trying to cope with it.

In order to make meaningful changes and to break the current status quo, the tinnitus community has to be more vocal and demanding. Blaming CBT for the lack of breakthroughs is a red herring.

You can advocate all that and simultaneously concede that CBT is not that helpful for tinnitus.

 

[Ed209]

You can advocate all that and simultaneously concede that CBT is not that helpful for tinnitus.

Why do that if it can help some people?

Everyone is unique and although it may not work for some, it may be very helpful to others.

 

[JohnAdams]

You can advocate all that and simultaneously concede that CBT is not that helpful for tinnitus.

It's not helpful for TINNITUS at all. Tinnitus = ringing in the ears.

 

[bobvann]

I nicknamed it CBT oil...LOL. Same with TRT, Mute Button ect. It may help some and be detrimental to others. I have been on support forums since Aug of 18. What I see overall is folks complaining about their GP's and ENT's telling them there is no magic pill that one has to learn to live with it= habituate.

I think even though it's crappy, they are telling the truth. All that other stuff is for profit. I would be willing to give the MB a go but right now it is only for those with means.

 

[JohnAdams]

Knowing that they use sound torture to soften up terrorists in places like Guantanimo Bay, would having CBT before being captured help a terrorist not to crack?

 

[bobvann]

Knowing that they use sound torture to soften up terrorists in places like Guantanimo Bay, would having CBT before being captured help a terrorist not to crack?

I really wish there was something honest out there that can help. From what I leaned on forums is we have to be able to break the emotional / mental reaction. That tinnitus does not change just how we respond to it which makes it fade due to being irrelevant. Easier said then done so far..

 

[Gman]

Snap when it came to my shoulders. I was soon after painkillers as it was excruciating.

Use CBT instead of painkillers. Extreme pain can actually be endured without them.

 

[JohnAdams]

That tinnitus does not change just how we respond to it which makes it fade due to being irrelevant.

I believe that is 100% bullshit. That's why they purposefully stay ambiguous about whether it is volume or focus as the thing that allegedly "fades".

I have noticed that when I am busy and focused on other stuff that yes, my attention gets drawn away from the ringing. It's just when I'm trying to relax is when it's there and annoying. No amount of CBT is going to help with that.

 

[JohnAdams]

Use CBT instead of painkillers. Extreme pain can actually be endured without them.

God created opium for a reason.