Is Tinnitus the Only Condition for Which People Blame Themselves?

[Jazzer]

Tell you what can be done? We can take ownership of our situation and turn it around. We have to realise that there's no rule book on life and no rules on how we should feel when certain stimuli comes along. We have no choice but to relearn our reaction to tinnitus and to adapt to it. The conventional routes are via CBT, TRT, meditation, mindfulness, etc. I don't believe TRT is strictly necessary; I think most of us can do this approach naturally ourselves. I've said this many times on here, but I strongly believe we need to break out of our regular routine and start doing new things. On top of this we need to eat better and exercise more. It's a slow process but most people really do habituate, and this site is living testament to that. The majority of people who sign up here leave after 3 months and are never seen again. I've had messages from some members - who at the time were in a real bad way - who say they are enjoying life again.

To overcome it is to reprogram how we interpret the noise until our brain gets bored thinking about it. That's where my brain is now, even after a recent setback with a new tone, it's bored with it all. I just don't pay attention to it in any meaningful way, so it doesn't bother me. The power that our thoughts have over our emotional well-being is astonishing; do not underestimate it.

YOURS IS SUCH AN IMPORTANT POST ED.


From day one, I never believed in Habituation.
I just knew it was a lie.
I wanted to die before Christmas.
My lovely missus refused the Dignitas route so I stopped exercising, and started intentionally over eating.
I was not about to swallow that EFFING "H" word.
Do you seriously think for one minute that I'm that stupid ?!?!?!

Only in desperation, did I take a different tack.
Firstly, I changed my focus.
Gradually, too slowly, if I'm honest, things started to change.
I knew instinctively that all the time I actively 'hated' Tinnitus, it could not get better.
All the time I remained tense, and angry, it could not get better.
All the time I analysed every hiss and every squeak, it could not get better.

I started practicing my relaxation techniques,
which I had previously learnt from a real guru, some years before, at another troubled time.

I started meditating for half an hour every morning. I didn't miss.

I started listening to my wife.
(A bit drastic this one, and I don' necessarily recommend drastic steps, but my missus is a clinical hypnotherapist, and a natural healer.
I am a bit embarrassed to mention this advantage, by the way.)
"Dave.....hear your sounds as your new 'normal' and you will stop obsessing about them."
"Hiss is normal." "Hiss is normal."
"Just tell yourself until it becomes second nature."
Gradually things improved for me.
It took some time, but she was right.
(Quite galling when 'the old lady' turns out to be right after all.)

I still have Tinnitus, but it rarely bothers me now.
I will not say 'never' because there are some times when it does, when I might notice a noisy day, and feel a bit fed-up, but I would put it down as a 90% improvement.
Sorry this is long.
I didn't know how I could shorten it.

 

[Rajin]

The majority of people who sign up here leave after 3 months and are never seen again. I've had messages from some members

Are they free of T or they just accept it and moved on.

 

[Ed209]

Are they free of T or they just accept it and moved on.

Who knows? The general vibe from people I've got in touch with is that they had moved on with their life and that the T no longer really bothered them. That seems to be the common theme.

 

[Ed209]

YOURS IS SUCH AN IMPORTANT POST ED.


From day one, I never believed in Habituation.
I just knew it was a lie.
I wanted to die before Christmas.
My lovely missus refused the Dignitas route so I stopped exercising, and started intentionally over eating.
I was not about to swallow that EFFING "H" word.
Do you seriously think for one minute that I'm that stupid ?!?!?!

Only in desperation, did I take a different tack.
Firstly, I changed my focus.
Gradually, too slowly, if I'm honest, things started to change.
I knew instinctively that all the time I actively 'hated' Tinnitus, it could not get better.
All the time I remained tense, and angry, it could not get better.
All the time I analysed every hiss and every squeak, it could not get better.

I started practicing my relaxation techniques,
which I had previously learnt from a real guru, some years before, at another troubled time.

I started meditating for half an hour every morning. I didn't miss.

I started listening to my wife.
(A bit drastic this one, and I don' necessarily recommend drastic steps, but my missus is a clinical hypnotherapist, and a natural healer.
I am a bit embarrassed to mention this advantage, by the way.)
"Dave.....hear your sounds as your new 'normal' and you will stop obsessing about them."
"Hiss is normal." "Hiss is normal."
"Just tell yourself until it becomes second nature."
Gradually things improved for me.
It took some time, but she was right.
(Quite galling when 'the old lady' turns out to be right after all.)

I still have Tinnitus, but it rarely bothers me now.
I will not say 'never' because there are some times when it does, when I might notice a noisy day, and feel a bit fed-up, but I would put it down as a 90% improvement.
Sorry this is long.
I didn't know how I could shorten it.

I felt exactly the same Dave. I hated the word habituation and was adamant on fixing the noise. It was this sheer singlemindedness that extended the duration of my suffering in my opinion. I spoke to a few other musos who were friends of my drummer at the time, and we got talking about tinnitus (it's posted on here somewhere). He told me that his life was hell for 3 years and that it was a slow period of acceptance, but that once he did, it stopped bothering him. He went on to say that it didn't bother him at all, and at the time for me it was a revelation. I think I was just under a year in or something like that. Around the same time I was openly talking with everyone about it and again (it's posted on here somewhere) one of my friends who was a soldier and had fought in Iraq got tinnitus when an IED went off. His story was almost identical to the musicians. He learned to accept it and moved on (took 3 years as well). From this the numbers went higher and higher. I found out my dad had a severe case, my cousin had it etc etc. It seemed to be everywhere. In fact, just the other day I was talking about it on Facebook and the mom of one of my best friends immediately commented to say her mom had it really bad etc. The moral of the story in all of these cases is that they moved on; sometimes after considerable time, but they all got over it to some degree.

 

[Hazel]

And therein is the crux of the problem. The lack of donations is at the heart of all this, but a lot more could be done by the tinnitus community itself. What have we all done individually? What organisations have we donated to? Has anyone done their own event? Have we all told our friends and family to help raise awareness?

I think if a lot of people look at themselves honestly they'll realise that they haven't done anything at all to help (not everyone of course). We can't always expect others to do the heavy lifting for us; we must affect the change we wish to see and become active participants.

I could not agree more strongly, Ed. Thanks for putting things into perspective once again. People do like to complain on here, but I see very few taking action.

 

[jay777]

I felt exactly the same Dave. I hated the word habituation and was adamant on fixing the noise. It was this sheer singlemindedness that extended the duration of my suffering in my opinion. I spoke to a few other musos who were friends of my drummer at the time, and we got talking about tinnitus (it's posted on here somewhere). He told me that his life was hell for 3 years and that it was a slow period of acceptance, but that once he did, it stopped bothering him. He went on to say that it didn't bother him at all, and at the time for me it was a revelation. I think I was just under a year in or something like that. Around the same time I was openly talking with everyone about it and again (it's posted on here somewhere) one of my friends who was a soldier and had fought in Iraq got tinnitus when an IED went off. His story was almost identical to the musicians. He learned to accept it and moved on (took 3 years as well). From this the numbers went higher and higher. I found out my dad had a severe case, my cousin had it etc etc. It seemed to be everywhere. In fact, just the other day I was talking about it on Facebook and the mom of one of my best friends immediately commented to say her mom had it really bad etc. The moral of the story in all of these cases is that they moved on; sometimes after considerable time, but they all got over it to some degree.

Hi Ed, are you saying I should accept
1. 3 nights sleep a week
2. lack of concentration
3. no motivation
4. no social life
5. hyperacusis that brings me to me knee's
6. suicidal ideation
7. members with mild tinnitus telling me to move on
if I accept this as the new norm I can move on?

 

[SugarMagnolia]

I found out my dad had a severe case, my cousin had it etc etc. It seemed to be everywhere. In fact, just the other day I was talking about it on Facebook and the mom of one of my best friends immediately commented to say her mom had it really bad etc.

I keep reading about how so many people have tinnitus, yet I have never seen a person wearing ear plugs or ear muffs. Do these friends and family that you mention wear ear protection when they go outside and you just never noticed it?

I feel like it's not just a matter of choosing between habituation and obsession. We must all contend with the fact that everywhere there are noises that are harmless to everyone else but harmful to us. We have to navigate this world. How are we habituated if we have to wear ear plugs to walk down the street or buy a loaf of bread in the grocery store? This behavior is hypervigilance, which is part of obsession.

 

[Luman]

Since I've had tinnitus, I've met five people who told me they also have it: Two psychotherapists, my dental hygienist, a lady that has pulsatile T, and an ENT. If I had not brought up the subject, I doubt that they would have ever mentioned it to me, and all said that they are not bothered by it anymore.

 

[Jazzer]

Are they free of T or they just accept it and moved on.

Either way - it doesn't really matter......xx

 

[SugarMagnolia]

Either way - it doesn't really matter......xx

But it does matter. If they are free of T, they can live normal lives and do the things everyone else does. If they're not free of T they have to run away from noises that are safe for normal ears. They have to wear ear plugs or muffs to do things that normal people do. How can we ever forget we're different when we're constantly monitoring our environment for sound levels and plugging our ears?

 

[Tinker Bell]

I keep reading about how so many people have tinnitus, yet I have never seen a person wearing ear plugs or ear muffs. Do these friends and family that you mention wear ear protection when they go outside and you just never noticed it?

I feel like it's not just a matter of choosing between habituation and obsession. We must all contend with the fact that everywhere there are noises that are harmless to everyone else but harmful to us. We have to navigate this world. How are we habituated if we have to wear ear plugs to walk down the street or buy a loaf of bread in the grocery store? This behavior is hypervigilance, which is part of obsession.

I personally know or know through friends many people with tinnitus. They do not wear ear protection for every day sounds, yet their tinnitus has not increased due to noise. People who have been living for 10, 15, 20 or 30 years with tinnitus. Going to work, going to movies, celebrating at weddings, taking vacations, having children and grandchildren . . . living their lives like normal people.

When I realized this, I asked a lot of questions. None had loudness hyperacusis, and I believe that adds a layer of complexity to living with tinnitus.

But I also asked about tinnitus volume and found that everyone always had been able to hear their tinnitus. So, not cases of quiet tinnitus only audible in quiet rooms.

All had confirmed hearing loss, but only one had a hearing aid.

Causes varied. Most were acoustic trauma, but two were viral and one was due to an ear surgery.

But the biggest difference I noticed: no sound anxiety. No one worried that a door slamming would make their tinnitus worse. No one ran from crying children. They simple accepted tinnitus as an annoying aspect of lives that weren't perfect (and never had been) but were worth living.

 

[SugarMagnolia]

@Tinker Bell
This is what I find so confusing. If so many ordinary daily sounds cause tinnitus to be permanently increased, then all these people running around without ear plugs would have tinnitus increases. If they don't, then what's safe for their ears should be safe for mine too.

 

[jay777]

When I realized this, I asked a lot of questions. None had loudness hyperacusis, and I believe that adds a layer of complexity to living with tinnitus.

A bit of an understatement, hyperacusis associated with pain is devastating, then add lound tinnitus, and I mean LOUND tinnitus, it's soul destroying

 

[DimitarIV]

@Tinker Bell
This is what I find so confusing. If so many ordinary daily sounds cause tinnitus to be permanently increased, then all these people running around without ear plugs would have tinnitus increases. If they don't, then what's safe for their ears should be safe for mine too.

Difference: they don't have OCD
This forum is full with OCD sufferers

 

[Tinker Bell]

Difference: they don't have OCD
This forum is full with OCD sufferers

Or severe anxiety.

Some had minor anxiety, but not in regards to their tinnitus.

 

[SugarMagnolia]

Difference: they don't have OCD
This forum is full with OCD sufferers

I have OCD. I've had it since long before my acoustic trauma. It has nothing to do with my T.

 

[NormySan]

I guess It's all different from person to person. I've also heard of other people that have T and does not use any protection. It must be that for some people the noise does not change for some reason.

It might also be related to H like some people say, I've never met another person that also has that with their T so maybe this is a clue as to why some people can just live with it and some cant?

These are all just guesses tough, i really have no clue as to why some people can just live with it without it getting worse for them.

Hopefully we can get some answers in the future!

 

[Tempest]

Exactly Dave, we could say this about many conditions. People who are paralysed from the neck down don't expect to start moving anytime soon

Sometimes I wish I was paralysed because at least then I would know there is no help coming (and I still would have my total silence), rather than being this half zombie, waiting for a cure.

I'm at the 6 month mark and boy, what a ride. In the mornings I feel absolutely horrible and during the day my mood gets better, so every day is a bittersweet rollercoaster and it's mentally tiring, because it's like getting a small taste of that happy normal old life and then it gets ripped away, repeat that every single day.

My heart goes out to anyone who have wrestled with T or depression for over a decade, I could never ever do it. Once life's total is more bad days than good ones, it's time to quit.

 

[Tinker Bell]

I have OCD. I've had it since long before my acoustic trauma. It has nothing to do with my T.

Yes, but having OCD likely complicates how you cope with tinnitus versus someone with tinnitus who does not have OCD.

I have anxiety, always have. I over analyze, catastrophize, panic, obsess, etc. Around the time I lost my hearing, I found out a friend's spouse had too. He also had loud tinnitus. He has never had anxiety in his life. Guess which one of us was back to a normal life almost immediately? Which one never sought help from an online forum? Never panicked or slipped into depression with suicidal thoughts?

If I was not prone to anxiety, I think I would have clawed my way out of the pit of despair much sooner. Maybe not had fallen so far, too.

 

[DimitarIV]

I have OCD. I've had it since long before my acoustic trauma. It has nothing to do with my T.

Pure OCD or typical OCD, they lay both on anxiety, intrusive toughts and all this crap which comes from the amigdala. Flight or flight response kicks in and there you go: fear from sounds! The less you pay attention, the less your stress will punch your T. This is my view of things, not arguing with anyone but look at the "O" in OCD and ask yourself : what is your new O?

 

[Jazzer]

Hi Ed, are you saying I should accept
1. 3 nights sleep a week
2. lack of concentration
3. no motivation
4. no social life
5. hyperacusis that brings me to me knee's
6. suicidal ideation
7. members with mild tinnitus telling me to move on
if I accept this as the new norm I can move on?

I obviously can not answer for Ed, @jay777 - but I can say that my catalogue of problems matched yours, and I had so much noticeable improvement.
Dave.

 

[Tinker Bell]

Regarding the question first asked by the thread, there are actually many health conditions where patients blame themselves. Conditions where they are told that anxiety or stress are contributing.

For example: infertility. Approximately 10 percent of women have infertility, either unable to get pregnant or suffering from multiple miscarriages. They are often told by doctors, family and friends that they'll have a child if they're not anxious about it. And it's true in some cases. The limbic system has a lot of power over our health. But being told that . . . well it's painful. I wanted to strangle the first doctor who said it to me.

Seems like an impossible task, like an annoying cycle you're trapped it. You're anxious because you cannot have what you want, but you have to stop being anxious in order to give yourself a fighting chance to achieve what you want.

 

[jay777]

I obviously can not answer for Ed, @jay777 - but I can say that my catalogue of problems matched yours, and I had so much noticeable noticeable improvement.
Dave.

thx dave, did you have hyperacusis associated with pain?

 

[Jazzer]

Are they free of T or they just accept it and moved on.

I might be a realist, or a fatalist Rajin.
I simply do not believe that a Tinnitus sufferer can actually become Tinnitus Free.
But neither do I believe in Father Christmas, fairy godmothers, or the Almighty.
But I do believe one can become acclimatised to the extent that the stimulus is considerably reduced, and life is good again.

 

[Rajin]

Seems like an impossible task, like an annoying cycle you're trapped it. You're anxious because you cannot have what you want, but you have to stop being anxious in order to give yourself a fighting chance to achieve what you w

I always read your post . Find them very helpful. I have hearing also. You a plain speaker. Find you say it the way you see it. I don't know if I using correct word. But you are very helpful.

 

[SugarMagnolia]

Yes, but having OCD likely complicates how you cope with tinnitus versus someone with tinnitus who does not have OCD.

That it does.

But ironically, it might also be an advantage because I understand how obsession works and I understand how compulsions develop.

I have anxiety, always have. I over analyze, catastrophize, panic, obsess, etc. Around the time I lost my hearing, I found out a friend's spouse had too. He also had loud tinnitus. He has never had anxiety in his life. Guess which one of us was back to a normal life almost immediately? Which one never sought help from an online forum? Never panicked or slipped into depression with suicidal thoughts?

If I was not prone to anxiety, I think I would have clawed my way out of the pit of despair much sooner. Maybe not had fallen so far, too.

May I ask? Do you protect your ears out of anxiety or out of a reasonable belief that a sound is damaging?

What I'm desperately trying to figure out is if my damaged ear is actually more vulnerable than a normal ear.

If my ear is no more vulnerable than a healthy ear, then I will deal with my anxiety. I've had OCD for a big part of my life, so I'm no stranger to the battle with anxiety. I don't want to protect my ear unnecessarily.

But if my ear is more vulnerable than a healthy ear, then I gotta do what I gotta do to protect it.

 

[Jazzer]

thx dave, did you have hyperacusis associated with pain?

Yes.
The blender - the vacuum cleaner - supermarket cages rattling around - loud children.

I still have plugs with me at all times, but rarely actually use them.
(I exit the kitchen for the blender.)
The real difference is in my demeanor.
I don't want to die any more.
I want to live.
When I told myself that my 'hiss' was normal, I obviously came to believe myself.

 

[Tinker Bell]

I always read your post . Find them very helpful. I have hearing also. You a plain speaker. Find you say it the way you see it. I don't know if I using correct word. But you are very helpful.

Thank you, I sincerely appreciate it! Sometimes I post something and then wonder if everyone is thinking I am crazy.

 

[Tinker Bell]

That it does.

But ironically, it might also be an advantage because I understand how obsession works and I understand how compulsions develop.


May I ask? Do you protect your ears out of anxiety or out of a reasonable belief that a sound is damaging?

What I'm desperately trying to figure out is if my damaged ear is actually more vulnerable than a normal ear.

If my ear is no more vulnerable than a healthy ear, then I will deal with my anxiety. I've had OCD for a big part of my life, so I'm no stranger to the battle with anxiety. I don't want to protect my ear unnecessarily.

But if my ear is more vulnerable than a healthy ear, then I gotta do what I gotta do to protect it.

Great questions. These are things I've thought about and discussed with doctors often over the past year. I need to run errands but I wanted to give you the courtesy of letting you know that I saw your reply and will respond later today!

 

[Tinniger]

I wonder if we all demanded a cure and made noise to other people letting them know how awful this condition can be if things would change. Right now it seems a lot more profitable for doctors to treat us all for depression, insomnia, and anxiety and offer us "hearing therapy" rather than actually solve the real problem. I'm just venting but it is something to think about.

I believe that one of the reasons for the lack of progress is that many tinnitus sufferers have completely different causes and also different symptoms.

It is not the same when one tinnitus sufferer complains about a high sinus tone on both sides and another about a chirping in one ear. One had a blast trauma and the other woke up in the morning with symptoms without cause.

When it comes to tinnitus, the simplest anamnesis surveys are often neglected.
There are therapists who do not know whether their patient has one-sided or bilateral complaints!!

And we read here often: "I've had tinnitus for six months now".
And we also know nothing about the causes at the beginning, whether one or both ears, whether beeping or hissing, whether pulse-synchronous pattern or not, whether there is somatic influence or not.

We don't know anything about the symptoms, yet we give advice and discuss.