The Best Advice I Ever Had re: Tinnitus...

[Jazzer]

I've had tinnitus for over 25 years at a moderate level, but 3 years ago it ramped up to unbearable.
I saw several audiologists, all of whom were very supportive, lovely people, wishing me all the best, telling me not to fret too much, that it would get better, would quiet down, would be less intrusive, my brain would stop following the sound...etc....

I read numerous books, articles, watched YouTube, got involved with anything and everything that seemed relevant.

Guess what - they were all wrong.

It all turned out to be "cobblers" as I very much suspected it would.
Early on in my search I read one sentence from a treatment councillor that really troubled me, really upset me, because it relegated all possibility of a cure, to the waste paper bin:

"The best advice I can give you is
'Learn to live your life the very best way you can....' "

I read it and re-read it, time and again.

I hated that sentence....it read like a SENTENCE....a life sentence!

But I've come to accept:
There is no cure.
Take it on board.
Stop searching.
Ironically, the moment you actually accept this truth, you will start feeling some relief from it.
Don't ask me how that works....but it does.

Slight deviation coming up.
My childhood was desperate:
Lonely, isolated, despairing, deep depression,
mentally sick mother etc....
Some years of psychotherapy, which helped,
a search for God, which didn't.
Then Tinnitus!
What a lovely life !!!!!

But I learnt one crucial lesson.

Always confront Reality!
Always confront Reality!
Reality is all we have.

"There is no mum
No mother's love
There is no god
No heaven above
There is no quiet
Only HISS...........
You wonder why I take the piss."

 

[Jazzer]

With acceptance comes some relief......
Maditation - Relaxation - take it easy.....

 

[Jazzer]

With acceptance comes some relief......
Maditation - Relaxation - take it easy.....

Sorry for the Freudian slip / Typo,
Please read 'Maditation' as "Meditation."

 

[Dana]

"Maditation" a Freudian slip?
Very funny
LOL

 

[Angel_Daniel]

Thanks for this

 

[threefirefour]

"""""advice"""""

 

[Krish230]

Don't agree with this fully to be honest. The way you put it seems as if there's absolutely nothing that can be done for your T. Which isn't true. There's maskers, TRT, tinnitus-specific CBT, and a lot more treatment out there.

 

[threefirefour]

Don't agree with this fully to be honest. The way you put it seems as if there's absolutely nothing that can be done for your T. Which isn't true. There's maskers, TRT, tinnitus-specific CBT, and a lot more treatment out there.

I don't really consider any of those legitimate treatments. Maybe maskers but that's about it.

 

[Krish230]

I don't really consider any of those legitimate treatments. Maybe maskers but that's about it.

They're definitely not a cure - agreed! But just thought I'd make aware for people that are in despair with their T that they aren't completely helpless and alone. They can seek treatment even if it's not the cure that we really want.

 

[threefirefour]

They're definitely not a cure - agreed! But just thought I'd make aware for people that are in despair with their T that they aren't completely helpless and alone. They can seek treatment even if it's not the cure that we really want.

They're definitely helpless in most cases. Not alone of course, but helpless. The fact is tinnitus is one of the few ailments where there is absolutely nothing that can treat it. All "treatments" for tinnitus are a misguided attempt at addressing the wrong issue at best, and a blatant scam feeding off of other people's misery at worst.

 

[Philippe79]

I was famously told "There is no cure, but it does get better". I can't think of many/ if any illnesses/diseases where that would apply?! In time, you do get a little more used to it (but it certainly isn't what I would call better)... First, you must go through every single negative emotion possible, whilst feeling helpless and in dispear, whilst also feeling bitter and confused. Once the brain has run this course of turmoil, it may very slowly start to adapt to the condition, because every single negative emotion has been exhausted and the only way is up. You either carry on, or throw in the towel. You do get more used to it over time, (but it's certainly not what I would call better). There's no point putting a positive spin on it. You just have to live your live the best you can.

 

[Jazzer]

Philippe79
I did put Whist on my iPhone by the way, but each time I go to it I can not really match the tone and volume very well.
Reading your post above, you seem to think on similar lines to myself.
You are a realist.
"There is no point putting a positive spin on it."
Live the best way you can....etc...
I have no interest in fiction posing as fact.
(I never found either God or Jesus, by the way.)
There are so many books on "T" dispensing all manner of nonsense, written by the experts on "T." Makes me laugh. The only knowledgable experts are the sufferers.
I've always believed in confronting the reality of any situation in life, however tough.
As an example, I'll just mention that my childhood was a nightmare of isolation.
Psychiatry / psychiatric drugs did nothing whatever to help my desperate state, but psychotherapy was a true answer for me.
It saved my life.
I found the answer.
But the reality of Tinnitus is so bleak - just endless unrelenting noise.
So....realistically, what can we do......?
Any ideas....?

 

[Greg Sacramento]

There's two different worlds of tinnitus.

My first onset of T & H was from a loud ear syringing. It was mostly subjective having a very loud buzzing, but there's was a little somatic element mixed in. This was probably from twisting my neck during the repeated procedure.

My T was severe for 3-3.5 years and then the buzz settled down to a 6-6.5. The somatic element stayed as I had hearing loss mostly in left ear. My levels of T were confirmed often by audiologists.

At 3-3.5 years, I was able to go on with my life. I was able not to think about it and was able to live a complete productive life at a 6-6.5 level.

Here is the difference and one big difference. A world of difference.

Early this year I experienced severe somatic very high pitch tinnitus on top of what I already had. I been told that my somatic T will not lower because of an untreatable neck. It's unbearable as the high pitch is insane.

YES, I was able to go on with my life at severe 6 to 6.5 level confirmed by an audiologist. With my present 10 high pitch somatic squeal - all I can do is placed myself in survival mode.

I had to take several breaks in tying this and it took 30 minutes.

 

[Jazzer]

"""""advice"""""

They're definitely not a cure - agreed! But just thought I'd make aware for people that are in despair with their T that they aren't completely helpless and alone. They can seek treatment even if it's not the cure that we really want.

Hi @Krish230 - you are quite right to pull me up on this.
We should never suggest there is no hope.
My feeling is that there is no actual medical answer to Tinnitus. No cure as such.
Perhaps the best route is to actually confront Tinnitus with a programme of acclimatisation.
I have mentioned in other posts that I direct my concentration to my 'sound' to start my meditation.
With my breathing calm and easy, I listen to it.
After a very few seconds/minutes, I drift off into a feeling of comfort for the rest of the session.
It is really an exercise in acceptance.
I do this in my morning bath, in lovely warm water.
On the mornings when I simply have not had time, I can tell you I feel different for having missed out on it.
Jazzer.

 

[MBH]

What gets me is the disrespect from docs I received their was no acknowledgement whatsoever, they didn't even ask questions. I tried to explain my T to them, but only when I went back due to anxiety then they help me and I had to go to therapy which was a waste. There is a dumb understanding out there that T goes away easy it's no big deal, I had T 5 months and I don't like want ive seen. Docs say it is not dangerous. These people are crazie. And I do believe some T suffer do well with it,but I truly believe alot more T suffer badly. I don't believe more people are moving on, due to docs don't even ask questions. Hence no cure.

 

[MBH]

How do we change T oxymoron? We have to change the perceptions that Yes the sound does not go away more then what they think. That this is Real.

 

[Jazzer]

What gets me is the disrespect from docs I received their was no acknowledgement whatsoever, they didn't even ask questions. I tried to explain my T to them, but only when I went back due to anxiety then they help me and I had to go to therapy which was a waste. There is a dumb understanding out there that T goes away easy it's no big deal, I had T 5 months and I don't like want ive seen. Docs say it is not dangerous. These people are crazie. And I do believe some T suffer do well with it,but I truly believe alot more T suffer badly. I don't believe more people are moving on, due to docs don't even ask questions. Hence no cure.

"T" is hell on Earth, and the loneliest affliction.
Nobody else can experience what we go through, and nobody can truly help us..
We are on our own...apart from the support of other sufferers....which is invaluable.
Love to all. xx
Jazzer

 

[threefirefour]

What gets me is the disrespect from docs I received their was no acknowledgement whatsoever, they didn't even ask questions. I tried to explain my T to them, but only when I went back due to anxiety then they help me and I had to go to therapy which was a waste. There is a dumb understanding out there that T goes away easy it's no big deal, I had T 5 months and I don't like want ive seen. Docs say it is not dangerous. These people are crazie. And I do believe some T suffer do well with it,but I truly believe alot more T suffer badly. I don't believe more people are moving on, due to docs don't even ask questions. Hence no cure.

>I have cancer this really sucks
>no you have ANXIETY from cancer the symptoms don't matter. Just fix the anxiety X^ppppppp

some doctors are a complete meme

 

[Jazzer]

>I have cancer this really sucks
>no you have ANXIETY from cancer the symptoms don't matter. Just fix the anxiety X^ppppppp

some doctors are a complete meme

You are right.
That is exactly the point.
ie - there is no significant help for us.
Even so - as that is the reality, we have to take it on board, and deal with the impact...the anxiety as well as we can.

 

[Philippe79]

I've always praised the NHS in this country (seriously).. But not when it comes to this... 'The name of the game is to get as many people discharged as quickly as possible' - or certainly that's how I was made to feel. I suppose I should be grateful that I was offered a measly 3 minutes of time. The writing was already on the wall anyway, so why waste anyone else's time unnecessarily.. Unless you have a serious underlying medical condition (that is treatable), that will always be the case, until something changes..... My ear was referred to as perfectly healthy - I suppose my MRI scan result was normal, so there you go. Bottom line.. Unless your tinnitus is caused by something that is life threatening the noise itself may only be referred to as 'just one of those things' . If nothing can be done, nothing can be done.. but what I think most people complain about here, is the lack of compassion. There is no excuse for that.

 

[Kste Adams]

I think the lack of compassion comes from the fact that others have no clue what tinnitus is like. We can sympathize with pain because we've all experienced it. We can sympathize with illness because we've all been there. We can sympathize with life-threatening conditions because we all know that our time is coming. But tinnitus isn't just noise. You can walk away from noise if you don't like it. But a noise that you can't fight and can't run away from makes our flight-or-fight response go into a tailspin. We have to undo hundreds of thousands of years of evolution to successfully deal with it. We're warriors going about our daily lives, our own researchers and medical experts, our own counselors and advisors and spiritual guides: I think we're a bunch of heroes because we have to be.

That's my story and I'm stickin' with it.

 

[vermillion]

I think we're a bunch of heroes because we have to be.

I am crying...

 

[DocORock]

They're definitely not a cure - agreed! But just thought I'd make aware for people that are in despair with their T that they aren't completely helpless and alone. They can seek treatment even if it's not the cure that we really want.

I'm going to give this place a shot, it's called Parker Hearing Institute, in Torrance, CA.

Wow, I never knew there wasn't a real cure for Tinnitus, bummer. Although mine's always been pretty (no very) loud - and I mean loud like the day after a heavy metal concert - and I mean like Triumph heavy metal or Megadeath head-banging, not that puny stuff from Beastie Boys - I guess now I'm kind of glad I've had it all my life. I thought it was a natural thing that everybody has. That is, until my late twenties when a friend and I came back from a Ronnie James Dio concert and told me he'd always had ringing in his ears - all his life, not just that night. Ha!

Oh, well. It'll be interesting to see (hear) how this Parker place does.

 

[marc 1974 london]

I've always praised the NHS in this country (seriously).. But not when it comes to this... 'The name of the game is to get as many people discharged as quickly as possible' - or certainly that's how I was made to feel. I suppose I should be grateful that I was offered a measly 3 minutes of time. The writing was already on the wall anyway, so why waste anyone else's time unnecessarily.. Unless you have a serious underlying medical condition (that is treatable), that will always be the case, until something changes..... My ear was referred to as perfectly healthy - I suppose my MRI scan result was normal, so there you go. Bottom line.. Unless your tinnitus is caused by something that is life threatening the noise itself may only be referred to as 'just one of those things' . If nothing can be done, nothing can be done.. but what I think most people complain about here, is the lack of compassion. There is no excuse for that.

I think the best place for advice etc is this website, i've been near hair pulling having a read on here for hours at a time is a great therapy

 

[Philippe79]

I think the best place for advice etc is this website, i've been near hair pulling having a read on here for hours at a time is a great therapy

I apologise for the negativity, I am really not proud of statements like this. I don't think it will do me any good though, but temporary it may make me feel better. Trying to have a positive mindset is crucial, but not easy sometimes and I still feel very bitter at times. I still think about my tinnitus way too much for my liking, my brain kind off zooms in on it and it has become a bad obsession, which really doesn't help. But I stand by what I said, more needs to be done and I don't think tinnitus gets taken seriously sometimes (not from my experience anyway). They don't even seem to try to pretend they care.

 

[fishbone]

I've had tinnitus for over 25 years at a moderate level, but 3 years ago it ramped up to unbearable.
I saw several audiologists, all of whom were very supportive, lovely people, wishing me all the best, telling me not to fret too much, that it would get better, would quiet down, would be less intrusive, my brain would stop following the sound...etc....

I read numerous books, articles, watched YouTube, got involved with anything and everything that seemed relevant.

Guess what - they were all wrong.

It all turned out to be "cobblers" as I very much suspected it would.
Early on in my search I read one sentence from a treatment councillor that really troubled me, really upset me, because it relegated all possibility of a cure, to the waste paper bin:

"The best advice I can give you is
'Learn to live your life the very best way you can....' "

I read it and re-read it, time and again.

I hated that sentence....it read like a SENTENCE....a life sentence!

But I've come to accept:
There is no cure.
Take it on board.
Stop searching.
Ironically, the moment you actually accept this truth, you will start feeling some relief from it.
Don't ask me how that works....but it does.

Slight deviation coming up.
My childhood was desperate:
Lonely, isolated, despairing, deep depression,
mentally sick mother etc....
Some years of psychotherapy, which helped,
a search for God, which didn't.
Then Tinnitus!
What a lovely life !!!!!

But I learnt one crucial lesson.

Always confront Reality!
Always confront Reality!
Reality is all we have.

"There is no mum
No mother's love
There is no god
No heaven above
There is no quiet
Only HISS...........
You wonder why I take the piss."

Confronting/accepting reality is wisdom, that goes a long way. We can still live a life even if reality, is not the reality we wish to have.....

 

[Jazzer]

I think the best place for advice etc is this website, i've been near hair pulling having a read on here for hours at a time is a great therapy

I agree Marc - it is crucial to correspond with people who "Know - Understand - Care."
Trying to explain this dilemma to people, even well-meaning people, who have not experienced this, is both exhausting and futile.
I don't live on here, but it helps me, to visit this site at some point every day.
Friends who suffer, friends who care. xx