Here's Why I Associate Tinnitus Dogma with Abuse

I have been having tinnitus counselling with an audiologist. I also completed Hashir Aazh's iCBT program online. Nothing my audiologist says resonates with me or my truth and I always feel like I am being patronised. I felt nothing but anger as I proceeded through Aazh's modules in the iCBT course, but I persisted because I want to get better. At the end though I feel the process of tinnitus counselling and iCBT has been passively abusive.

The general dogma seems to be that it isn't the tinnitus that is bad, just my perception of it and my "distorted thoughts". (The "distorted thoughts" narrative comes up a lot.) It is apparently only severe and intrusive because of my reaction to it. I am being told that I am responsible for the severity of my tinnitus. The iCBT course tells you that instead of thinking that your tinnitus is getting louder and worse (which mine has gradually over the months) you have to change your thinking and instead say to yourself "tinnitus is louder because I am stressed, and quieter when I am calm". This however is not a true statement. He is basically trying to tell me that my lived experience is not real. This is called gaslighting, and gaslighting, in any context, is abusive.

Constantly being bombarded with these kind of messages by people who are suppose to be helping feels like being in an abusive relationship. The audiologist advised to 'get help' for not being able to cope with the horrendous multi-tonal, loud, and relentless noise. Ironically 'getting help' is exactly why I was seeing her!

Why is it assumed you have mental illness because your medical condition is debilitating? What other medical condition is there that sufferer is is told it is all in their head and if they just change the way they think, things will improve. How is this the dogma in 2021?

 

If we can't cure it, it isn't making you bedridden, and I have no proof of it, then learn to live with it.

Because no funding for fringe things we can't accurately predict with reductionism.

They used to think the same thing about rare diseases like prions.

The learn to habituate to it is not a success story, it's these bullies yet again winning and a victim being lucky enough that it is still mild enough to truly hide from or relax with.

You are correct that they are gaslighting you into thinking YOU are the problem.

 

This still goes on with CFS patients even though it’s a medically accepted condition now. Most doctors will gaslight you even when you are bedridden. It’s really sad how our medical system(s) have failed us and fail to accept that diseases are beyond just physical manifestations that can be seen on a lab test. The paradigm really needs to change and ironically in the CFS space, one of Ron Davis’ priorities is to commercialize a test to give give definitive proof of the disease. They have already created it but now they need to develop it as a cheap, deployable product. I guess it’s the same think happening in Australia with tinnitus where they are trying to quantify it. I believe that when doctors (or really anyone for that matter) can read a result that says “this patient is sick” things will really change.

We are like common day lepers of the medical community except that our suffering can’t be visualized. No one is out there advocating for this disability and it’s sad to say but 6 months ago, I wouldn’t have understood it myself…

 

Thank you for this thread, I couldn't agree more! I hate the term "distorted thoughts," and the assertion that the way I "think" about my tinnitus makes it worse.

What is distorted about these thoughts:

1) I went 65 years of my life with nary a problem with my hearing or a hint of tinnitus;

2) one day out of the blue I started hearing a high pitched hissing siren;

3) that sound/sensation was never there before, and it's not supposed to be there;

4) it is change in my sensory perception that is new, weird and scary, and very unpleasant. Being told otherwise by doctors does feel like gaslighting.

These are factual thoughts, and tinnitus is a medical condition, not a psychosomatic condition. I think the analogy with CFS is an excellent one. For decades CFS sufferers were told that it their fatigue and aches and pains were "all in their head," or that it was just anxiety or depression. At least now CFS is a recognized medical condition. Tinnitus seems to be stuck in the dark ages of medical science for the most part. It is very poorly understood, and there are no effective treatments to speak other than habituation; and the best that you will get from medical profession is that you will have to "learn to live with it."

I too have undergone CBT counseling for tinnitus with Dr. Bruce Hubbard, who is excellent.

But the bottom line with any CBT for tinnitus is:

1) acceptance of the fact that you cannot exert much if any control over your tinnitus;

2) it can't really hurt you physically;

3) you can improve how you "feel" about your tinnitus; and

4) you can for the most part regain your pre-tinnitus life.

In the early stages of tinnitus distress, perhaps it's fair to say that many will have thoughts such as "I can't live with this," or "it will make me go deaf." Such thoughts may be classified as unrealistic or "distorted," and can be corrected with counseling. But no counseling can change the fact that you have tinnitus, you may have it forever, it sucks, and the only choice you have is to learn to live with it. That is reality.

 

Do you think the counseling has helped with dealing with your tinnitus or habituation?

 

I thought about this tread a lot today. I wanted to gather my thoughts before providing my input but it didn't really help lol.

Please note I am new so my experience is limited and opinions could be naive or ignorant but they come from a good place.

I also understand whereas if I perceive my tinnitus to be 5/10, that could be a 2/10 intensity for one and 8/10 for another. And if some perceives their tinnitus at 8/10, yes it might be hard for them to get used it to it. I am sure it will be for me at that level.

I glanced through the iCBT course. I downloaded and took snapshots. I read that one should give one's tinnitus 6 months to get better, and treat all other previous issues like anxiety etc before starting CBT. So I am waiting for that time to pass.

I get the gaslighting.

What other option do we have but to stay positive and hope these methods work?

Would it be safe to say these methods only work if your tinnitus intensity/loudness/tone etc is under a certain level?

I get that it will never go away but can you get used to it to the point where you enjoy life close to where it was before?

If there is no cure, what do we expect our doctors to say? Sure, they can be more sympathetic.

The first ENT I went to, he saw me for 5 minutes and said to learn to live with it. That is all you can do. He rushed out of the room like he was late for lunch.

The second ENT, even though he gave me the same info, sat there and listened to me and was sympathetic about it. I appreciated that even though he couldn't do anything.

Maybe it's because I am new but, for now, if I don't look at things positively, then I know I will go crazy.

Sorry for the blabbering.

 

My ENT has tinnitus, and basically said it may or may not go away. Eventually you adapt lol.

 

The answer to your first question is 'no'. Some have succeeded in habituating to very loud tinnitus. A good example is Dr Stephen Nagler who has described his tinnitus as comparable to a cross between a screaming teakettle and a jet turbine, so loud that he could even hear it over the sound of the Niagara Falls when he was in the Maid of Orleans sightseeing boat.

He also regained a quality of life comparable to that which he had before.

Although he did not habituate to his tinnitus through CBT, he is an advocate of it and often recommended the publication by D.J. Henry and Peter Wilson The Psychological Management of Chronic Tinnitus: A Cognitive Behavioral Approach.

This morning, recalling another piece of testimony I once found online, I was quickly able to find it again. This is from a former drummer with severe tinnitus:

I decided to really listen to the insanity going on in my head, something I hadn't really done in a long time.

As I sat & intently listened to it, I heard one low end squeal, along with the old incredibly high frequency shrill as nails high end scream. Then there's an array of really weird, oscillating, reverberating vibrations & circular type electrical patterns just swirling out in every direction. To top it off there's these loud "ping" type things, very high end, bursting in & out.

When my wife spoke to me from the next room, I couldn't make out a word she was saying, because it's so loud. I have to remind her, "honey, I'm sorry but I can't hear you unless you're close to the door".

My point is this, as unbelievably loud, harsh & annoying my tinnitus is, it just can't get a rise out of me anymore. It just can't do it. It can't make me care about it anymore. It can't make me think about it anymore. If I think about it it's because I decided to think about it.

It has no power over me anymore. It's not important to me in the least.

It's so f***ing loud I can't hear my wife speaking twelve feet away from me. It's so foreign sounding & so f***ing weird I could sell the soundtrack to the next Twilight Zone movie.

But...

But nothing. There's nothing there. No real emotion. No fear whatsoever. No importanc.

Remember that's how it works. Remember you'll move past this. Remember they're just new sounds you have to get used to.

Keep the faith & keep pushing yourself. Sure it's hard now, but it won't last.​

Please note that in drawing attention to these examples, I am in no way seeking to use them as a rod to beat anyone who is struggling with very severe tinnitus.

In fact, I am very much in agreement with the OP: CBT and other methods for managing tinnitus psychologically are not going to work for everyone and it wrong to blame the sufferer when they don't.

For example, CBT is essentially cerebral. It focuses on thought. Fair enough. But many sufferers find themselves dealing with profoundly aversive emotions. So for them, the more holistic approach of Mindfulness Based Cognitive Therapy could have more to offer. Or maybe something else. In the absence of a cure, a pragmatic rather than a dogmatic approach to tinnitus is what I would be in favour of.

That's all I have to say.

 

Yesterday I watched 4 videos on YouTube called "A Permanent Cure For Tinnitus" by some guy who is a helicopter pilot. I knew before clicking on it it was a clickbait title but I figured I'd take the bait & see what this guy had to say.

In each video he basically repeats the same basic information which is based on what he learned from reading or watching Dr. Jastreboff & another doctor who passed away years ago, Dr. Claire Weekes, who did pioneering work on anxiety disorders.

He repeats himself a lot using the fear of spiders as an analogy to fear of tinnitus. He persists in saying the cure for tinnitus is to not fear it & it's only our reaction to the tinnitus that's the problem not what caused it or the physiological damage to inner ear. He completely bypasses that & how the brain is the cause of the sounds we hear yet in his last video he is describing habituation without mentioning the word & earlier in a very sloppy way refers to neuroplasticity. It's a lot of rambling & nothing close to anything new or enlightening. It's the title I have an issue with because it's totally misleading & false even though he claims he's making the videos for our benefit. He's also misrepresenting Dr. Jastreboff (whose name he keeps terribly mispronouncing in each of his video's).

TRT is not a cure for tinnitus. Anyone who claims there is a cure for tinnitus is a huckster.

It's true that the Limbic System when triggered by fear or fight & flight response our tinnitus becomes louder & louder. This is major issue with the onset of severe tinnitus & hyperacusis. We need to learn about the vicious circle of anxiety & fear & tinnitus. We have some control over that by trying to change our thoughts & also realizing we don't have an illness in most cases but a troubling condition that is intrusive. But to say as the person who made those videos that we can completely control our Limbic System & therefore cure our tinnitus is completely dishonest & spreading disinformation.

If someone hasn't had chronic tinnitus & I mean permanent tinnitus, not the three day ringing in ears after a loud rock concert that goes away for most people, then they wouldn't be able to relate to what we are experiencing. My audiologist is a nice young guy but really doesn't have a clue how loud & disturbing the sounds are which I hear 24/7. I have reactive tinnitus & hyperacusis to certain degree. The ENTs are only useful for discovering what the cause of the tinnitus is if it's unrelated to an obvious event like exposure to loud sound for long duration, referred to as Noise Induced Hearing Loss. They do not treat tinnitus. They can treat acoustic neuromas or some people with Meniere's disease & there are some questionable surgeries for hyperacusis. But the rest of us, we are still waiting for something that can stop the horrible sounds we perceive.

 

I feel there is an unconscious aspect at play here too. I'm coming up on a year and sometimes it really doesn't matter how much I try to consciously modulate my mood - my neck muscles tighten up and I feel that stress cramping down my back from this damn noise, or I wake up and it's like my brain has already been struggling and hands it over to now awake me. You just feel physically beaten up. I almost wonder if there is, like the tinnitus itself, a genetic component to tolerance that is to an extent, fixed.

 

Another little gem that pops up A LOT is the 1954 study where they put participants in a completely sound proof chamber and after 5 minutes they apparently heard low rumbling tinnitus. The punch line that is supose to make us feel better is 'see, everyone has a little bit of tinnitus'. I don't see how raising that study ad nauseam is helpful as a part of the therapeutic approach. In fact, I don't see how it is relevant to actual chronic tinnitus at all. If 'everyone has a little bit of tinnitus' then I want their type, or my old "tinnitus" back. I don't plan on visiting a anechoic chamber.

Further, you would never say to a cancer patient 'but everyone has a little bit of cancer', and refer them to a million studies that show that Killler T Cells are combating tumor cells in our bodies all day every day.

It's unreal how we are treated.

 

Or as my tinnitus specialist once said, "you can even habituate to tinnitus if it's as loud as a jet engine"

Oh and the classic: "you haven't thought about the way your underwear feels while you've been sitting here, you can do the same with tinnitus"

Like, what does that even mean? She then went on to praise Jastreboff at length which tells you all we need to know. It's inexcusable, I'd rather somebody just commiserate with me and tell it like it is as opposed to giving me that crap.

 

That's not even correct. Some nerves when consistently stimulated will stabilize and cease to fire, such as wearing clothing. Some people have conditions where certain sensations are extremely painful and these nerves don't operate correctly. Think fibromyalgia - tinnitus of pain receptors. Ask someone with that to just think of it like clothing on.

Tinnitus is a constant firing of nerves that our consciousness hears.

It is NOT like wearing clothing, your blind spots, etc. Yes, perhaps everyone has some tinnitus, but obviously there's a spectrum just like everything else. Withdrawal from coffee isn't like withdrawal from heroin analogy.

 

Yep, I've heard that one in a few YouTube clips.

My audiologist threw the refrigerator analogy at me - 'you don't hear the fridge motor running in the room 24/7'. I wanted to say you can't be serious! The fridge isn't INSIDE MY BRAIN, it doesn't follow me around the house, I don't take the fridge to bed, it has never woken me in the night, and if it was making loud intrusive multi-tonal sounds that feel like drilling in my head like my tinnitus, I would either leave the room, turn it off, or buy a new one!

It felt infantilising, and a gross underestimate of my intelligence.

I don't know... maybe the underwear and refrigerator analogies help some people. Mild tinnitus perhaps? (But if you ask my audiologist, there is no such thing as mild tinnitus and severe tinnitus - just our perception of it).

 

I mean, this might even be possible, but the real question to ask here is: what is the price that an average human being has to pay to get to the habituation point? The amount of energy and will to pull through such a thing is insane; the body would simply be crippled, making life maybe not even worth to be lived any longer.

In terms of counseling, I had similar experiences. I went to a guy who claims to have a "tinnitus management clinic". A complete charlatan. Once I told him "my wish is to be cured, to hear silence again" he replied "you mean habituated?" "LMAO, no you stupid fuck, but I understand that people like you are worried about patients getting objectively better... because you would become jobless". I left and never met him again.

 

I don't buy the "you get used to a refrigerator, so you can get used to tinnitus" analogy either.

To explain why, imagine you are sitting on a hard object, and that object could be one of many shapes:



Imagine someone said to you "everyone gets used to sitting on a hemisphere, so you can get used to sitting on a cone." I think you would say that is ridiculous. Sitting on a hemisphere is a completely different experience from sitting on a cone, and adapting to one means very little for adapting to the other.

I think of tinnitus in the same way. Specifically, tinnitus typically presents as a specific tone (or a small number of specific tones), which is completely different from more typical broadband sounds. I'm pretty sure if my tinnitus were a broadband sound, I wouldn't even know I had it unless it was *extremely* loud. Pure tones are simply more annoying than broadband ones, and adapting to a pure tone is nothing like adapting to a broadband tone.

On the other hand, I don't blame doctors and therapists when they encourage us to "get used to it." What else are they supposed to say? "Don't get used to it?"

I do think some compassion from doctors about the difficulty of adapting is helpful however, as a previous poster said.

 

It's not abuse unless you place so much faith in what they're saying that you are hanging on every word. Tinnitus sufferers need to learn as early as possible not to key themselves onto anything the medical establishment says. I never saw an audiologist until a year or so ago after suffering since 1992 because I knew damn well nothing could be done and I didn't want to be given any spin.

I don't feel that avoiding "treatment" all this time made any difference in my condition or coping strategies. If anything, my treatment needs have been more in the psychological realm than physical. We are all on our own. I don't say that out of bitterness or fatalism or anything. It's just how it is.

 

Hey, I’m really sorry you’re struggling so much. I just want to let you know that a few months about, I was 10/10 suicidal, often unable to speak because the tinnitus was so bad and intrusive.

The noises themselves haven’t changed I don’t think, still erratic, still occasionally painful, but I don’t actually care anymore, life is ok again. You won’t always feel this way. I’m sitting here in a quiet room writing this to you and it doesn’t really register to me that I’ve got tinnitus. This may be the hardest thing you’ve ever had to deal with but I promise you, you can do it. If I can do it, you can too. Please hang in there and like someone said to me, if you’ve got no hope left, at least have hope of hope. It won’t always be this way xxx

 

Thank you. When did you start to improve? I feel like I am a lost cause. I need it to actually quieten down, back off a bit to get back any kind of quality of life.

 

I’m not going to lie, it took a good few months for me to even be able to consider living with this.

And the odd thing is, you’ll improve without knowing it because it’ll be so slow sometimes. The quietening down and the backing off seem to happen simultaneously, even if there’s no change in the characteristics of the noise. It’s just you stop caring. I literally can’t focus on my noises anymore, it’s become that irrelevant to my brain. The only time it gets to me is when I think about it, so I don’t think about it.

You’re not a lost cause at all, but I well understand your pain and frustration. It’s like wanting to force something to happen but you can’t. This is probably going to test your patience like nothing before, but hang on with all your might because your life is still there, it’s being drowned out right now. You can do this xxx

 

@Vicki3116, what caused your tinnitus?

 

Hey, absolutely no idea. They general consensus is it’s neurological as my hearing is fine, excellent for my age even, and I get other strange symptoms that appear to be emanating from my nervous system, like bursts of adrenaline down my back and in to my legs and arms. It’s all very odd. I haven’t found anything that makes it better or worse, except completely ignoring it. It’s a game I just don’t want to play anymore so I try to not get involved with it if that makes sense xxx

 

I hear you. Mine is apparently due to Ménière’s disease. I didn’t know anything was really wrong in the beginning. Then things got worse and worse and it was flared up incredibly by the COVID-19 vaccine.

 

This sounds awesome, like Popeye or something. Do you find these "bursts" give you super strength?

 

LOL, yeah, follow him and blast him in the ears with a fog-horn 24/7, then tell him it's not the noise that's the problem, it's his reaction to it.

 

Ha, I wish. It’s more like being tasered for a split second. But what can you do

 

Ah, I see... that's not so awesome.

Still waiting on my tinnitus to give me super audio powers: sonar/echo location maybe?

Why hasn't someone brought a case against MARVEL and DC for false advertising yet?

 

This gave me a chuckle. Good point.

 

I watched that helicopter video on YouTube. I think I am the only person that gave his video a thumbs down. The title is very misleading. 'A permanent cure for tinnitus' aka, habituation... because it isn't the noise that's the problem, it's YOU!!! Oh, and yes... he was a cheerleader for Jastreboff, but kept calling him Jastrebofsky and even said in a later video that he he didn't support listening to in ear masking sounds! One very confused individual that believed in everything he said 100%!

I am 5.5 months in Vicki (starting mid-late December when it returned - not counting the month of tinnitus I had in September 2020 that went away) and am doing far worse than I was at say 2 months. I hope I get to where you are but I fear you were already getting well by the time you were where I am at. It is just too severe to ignore. My tinnitus is all over my brain, pulses with my heart on the left side, and gets even louder when I yawn, chew, turn my head and even blink. Quality of life is poor.

 

Hey, I believe you’ll make it through. I also had the pulsing on the left for a while, I don’t have it now so, I hope that gives you a little hope. I know what you mean about movements making it worse, I still sometimes get what sounds like squealing train brakes when I turn my head/chew.

I can hear how much despair you’re in and I get it, it’s truly awful, made worse by the fact that it’s so claustrophobically inexplicable to anyone who doesn’t understand. The sheer psychological and emotional torment of something you can’t escape is more than most people will ever have to face. The loneliness and exhaustion from dealing with this is immense, but it doesn’t last forever. I don’t really have any advice for you that definitively works because I haven’t done anything about it as such, just given it time. Loads of time. More time than I thought I could bear.

And you say you can’t ignore it... so don’t try to. Just gently try and move your focus to something else. No pressure. You will have to do this thousands, maybe millions of times and it’ll feel like a monumental effort but then it gets easier. It becomes automatic. Work on staying calm and your brain will get it’s priorities back in check.

I really hope I don’t come across as patronising or sanctimonious, that’s not my intention. I know exactly how excruciating this condition is, I just want you to know that I and thousands of other people are on your side. We can, and do, and will improve.

xxx