A Valid Reason Why Habituation Should Not Be Glorified

[Starthrower]

@Jazzer

Oh @Starthrower - I am so sorry.
Is it too raw for me to ask you what happened?Of course I understand it could well be.

This happened so long ago the first time. And if I expound on it then it scares people from getting proper dental work done. I try to be as helpful as I can without the horror story with people. I will work on something to post.

Thank goodnesss for your lovely supportive husband.
What intrigues me most is, what treatment could have helped you come to terms with this wretched thing.
I've always felt we have to 'do it' all our selves.

Oh like you I am so lucky to be married to a great man. We got married when I was quite young. His support meant so much to me. And I did have to do so much on my own back then. There was no TT around just a few other support boards that were at war with each other. I ended up connecting with a few of those people back then.
Long story.

What helped was a good general MD and medication for anxiety. I then worked with several therapists with different techniques. Back then no one really knew about the effects of intrusive tinnitus. Oh the ENTs with the deer in the headlights looks who passed you back to the door ASAP. It was awful.

Hypnosis and meditation would follow. I became so good at both.

I also adore my partner, and at bad times, if she asks me, I will say "I'm okay sweetheart."
With all that we have come through I live to make her as happy as I can.

I know. Big hug to you. That is when I decided to fake it till I made it with Bob. He got so encouraged to see me make progress. In some ways this also helped me move forward. His eyes just lit up that first time I said I was doing so much better.

You see that first year was spent house bound. I sat in a dark closet rocking back and forth in pain. All I could hear was screeching metal brakes so loud I couldn't be around any noise.

Contrast that with my once life of privilege and I had just taken the LSAT entry test for law school and was headed for university. My life time dream to practice law. I had been working as an intern with a defense attorney involved in the OJ Simpson case and life was so exciting.

In one single day all that was taken from me.

Ugg...sorry for talking on and on. When I write about it I feel like I need to shake it off like a dog who just got a bath and shakes all the water off?

The best thing now. My life is back with a different perspective and empathy and understanding and my goals have changed. Maybe practicing law wasn't my life path. Most of all I am happy and content.

 

[Turner]

The biggest part of suffering comes from the self-blame and repeating the event in your head rather than the noise itself

This totally describes me right now although the noise isn't helping any either. I'm two months in and am finding it really difficult to put a positive spin on this. I've given up on talking to people, well family at least. Everyone either says "oh I have it too" and looks at me funny or says "don't worry, it'll pass". Not a soul asks how bad is your T? I've been kicking myself since this has happened. I want to live but damn, waiting, hoping I'll get used to this is a lot to ask.

 

[Jazzer]

You see that first year was spent house bound. I sat in a dark closet rocking back and forth in pain.

Oh @Starthrower - so sad - this was also me - I absolutely knew that my life had changed for ever.
I just had to grieve!
I cried noisily - then I wept silently - I looked at my beautiful wife, my children, my grandchildren, I was literally dying of a devastating sadness.
I needed loving arms around me, just to hold me together.
Eventually I decided that I must find a way forward, if one even exists.
I am always a realist - unfortunately we can never put the clock back - we can only ever go on from right now, from where we are.
My lovely Sylvie, a clinical hypnotherapist, would 'put me out' and talk to me - tell me how loved I was - tell me I was a lovely person - tell me I had so much love still to give to those around me, to make sure I had a real reason to go on living....
she recorded one session live for me.
I do my own meditation/self hypnosis each morning, and if I need a little pick me up in the afternoon, then I play my tape.
(Incidentally - I value that tape at over a million dollars!)
But you know all this stuff Star - we have both been there.

With regard to the arguments that rage re: habituation v impossibility - I know the scientists have to look at the facts - permenant neuronal activity etc... I accept that - but the most crucial thing for the sufferer is "how do I go on - can I find a way to make my life liveable again - what practice will help me reestablish peace, regain my life??"

Well, we have both done exactly that haven't we Starfish....hey....I just realised....we are both "STARS!"

I feel so much love for you and your lovely husband, thank you so much for sharing,
and thank goodness for Tinnitus Talk, that enabled us to meet up,
Dave xx

 

[Jazzer]

In the meantime @Starthrower - here are just a handful of reasons to succeed.....

 

[threefirefour]

View attachment 15814 View attachment 15815 View attachment 15816 View attachment 15817 View attachment 15818 View attachment 15819 View attachment 15820 View attachment 15821 View attachment 15822 View attachment 15823 In the meantime @Starthrower - here are just a handful of reasons to succeed.....

How are your cats so cute?

 

[Jazzer]

Hahaha......show @threefirefour a couple of pussycats - and he turns into a "wuss!"
They get into all sorts of capers, and as I'm besotted with them I've always got the iPhone handy.
Best wishes Bud,
Dave x

 

[Contrast]

awesome cat spam

 

[Starthrower]

Jazzer you made my heart smile. I had a busy day and wanted to check in. Your furry kids are so cute. The photos made me laugh. They are sweet.

and thank goodness for Tinnitus Talk, that enabled us to meet up,

I know I feel the same way and connection. Some people are meant to know each other even so far away and on this board. We will have a lot to discuss. It is so strange where I am led. And the people meant to cross paths.

Ask your wife if she knows Norma (Ph.D )And Philip (M.A.,M.E.T.) Barretta. They are apparently world renown for the work she does in the field of what we discussed. They are both in their upper 90s. They mentored me. Philip recently passed away.

More tomorrow...

xx Jen

 

[Jazzer]

@Starthrower - Sylvie studied the Ericksonian method at Kings College, London, in year 2000.
She was able to sustain our daughter Michelle, who was suffering with breast cancer, (Brca 2) until she died in 2008, aged 36.
Sylvia and I were both very impressed with the work of Stephen Parkhill. (Answer Cancer.)

 

[Dij111]

Oh my god those cats @Jazzer

 

[Jazzer]

Oh my god those cats @Jazzer

Hi @Dij111 - I feel I've been very self indulgent posting my cat pictures on here, but as pussycats have been the finest treatment method for my Tinnitus so far.....here are a few more.....

 

[Dij111]

View attachment 15871 View attachment 15872 View attachment 15873 View attachment 15874 View attachment 15875 View attachment 15876 View attachment 15877

Hi @Dij111 - I feel I've been very self indulgent posting my cat pictures on here, but as pussycats have been the finest treatment method for my Tinnitus so far.....here are a few more.....

I think we found the cure to tinnitus .

 

[Jazzer]

@Dij111 - I usually cope okay, but I was a bit tearful the other day - I get like that sometimes - then they come up to me and purr for me - and the World's okay again.....there's nothing like it.
"WOW - pussycats xxx"


* (Right - no more cats - I'll get myself a bad name.
In the park where I live, I'm known as
'that crazy cat guy....!')

 

[BobDigi]

I think it's great people are working on a cure for tinnitus. But I think the reality is we are probably years and years away from a cure. If it's even possible in the first place!
But one thing is for certain. Apart from the few who have tinnitus because of a curable cause, or ear infections, build up of wax or jaw problems etc, then habituation is the only end game available at the moment.
There's a lot of money coming to the person or team that find a cure for tinnitus. That's the only motivation people more clever than me will need to hopefuly find a cure.

 

[Jazzer]

@BobDigi - absolutely right.

 

[Dana]

I am afraid researchers are satisfied with their salaries and want to keep this job for a while ("looking" for a cure, not "finding" a cure.
There should be some kind of method to motivate them to find it, not to look for it, like a prize, or something. And in the meantime normal salaries. Money should be given proportionally with the results obtained, not with the results that are looked for and not obtained (the cures for each T etiology, obviously very different from one another).

 

[Contrast]

How do people live like this without hoping for real treatment?

Tinnitus causes constant electronic noises in their head

Music makes there ears hurt because painful hyperacusis

The brains auditory system is all messed up and some everyday are abnormally loud because of loudness hyperacusis

They can no longer enjoy music or hear birds chip because they are deaf in their upper frequencies and music with high frequencies is usually associated with positivity .

Their Eustachian tube closes and opens constantly in response to loud noise

Their tinnitus is reactive and every auditory experience in life becomes invalidated.

TRT is held to the same standard as a cure by some and it is very disturbing for new comers that are desperate

I know I am using an worse then usual example but this is a cruel reality that needs to be addressed people are suffering

Tinnitus and hyperacusis's and hearing loss have no cure and half ass treatments. Hearing aids will never come close to natural hearing, even with auditory disabilities those suffering are expected to be functioning members of society expecting to compete in a work force filled with non audiotory disabled people. Tinnitus is a permanent depression and damages the mental health of anyone effected by it.

How does Pawel Jastreboff the supposed leading expert on treating tinnitus address these issues? We can only hope the propaganda ministry of TRT does not move on into the 2020's as science advances.

Susan Shores device & Frequency Theraputics PCA cochlear hair cell regeneration should be available in the near future to get people suffering from tinnitus REAL HELP

 

[dpdx]

How do people live like this without hoping for real treatment?

Tinnitus causes constant electronic noises in their head

Music makes there ears hurt because painful hyperacusis

The brains auditory system is all messed up and some everyday are abnormally loud because of loudness hyperacusis

They can no longer enjoy music or hear birds chip because they are deaf in their upper frequencies and music with high frequencies is usually associated with positivity .

Their Eustachian tube closes and opens constantly in response to loud noise

Their tinnitus is reactive and every auditory experience in life becomes invalidated.

TRT is held to the same standard as a cure by some and it is very disturbing for new comers that are desperate

I know I am using an worse then usual example but this is a cruel reality that needs to be addressed people are suffering

Tinnitus and hyperacusis's and hearing loss have no cure and half ass treatments. Hearing aids will never come close to natural hearing, even with auditory disabilities those suffering are expected to be functioning members of society expecting to compete in a work force filled with non audiotory disabled people. Tinnitus is a permanent depression and damages the mental health of anyone effected by it.

How does Pawel Jastreboff the supposed leading expert on treating tinnitus address these issues? We can only hope the propaganda ministry of TRT does not move on into the 2020's as science advances.

Susan Shores device & Frequency Theraputics PCA cochlear hair cell regeneration should be available in the near future to get people suffering from tinnitus REAL HELP

SPOT ON

 

[Luman]

I am afraid researchers are satisfied with their salaries and want to keep this job for a while ("looking" for a cure, not "finding" a cure.
There should be some kind of method to motivate them to find it, not to look for it, like a prize, or something. And in the meantime normal salaries. Money should be given proportionally with the results obtained, not with the results that are looked for and not obtained (the cures for each T etiology, obviously very different from one another).

Those who are actively searching for a cure or another valid scientific treatment for tinnitus, and/or hearing loss, would be highly motivated to strive for success, for any number of reasons. Although financial reward, and recognition, is highly likely for any orginizaion or individual who would discover a cure, the satisfaction of having achieved something, which is going to help countless numbers of people, is the most important factor.

 

[coffee_girl]

Just my opinion, I think the ups and downs and the extremes in between of hope and distress, disappointment and pain. Good days when hope is ignited, then watch it crashing down again in the pits of resentment and hopelessness.

Habituation for me IS the key, I accepted my fate and that was the hardest thing I ever had to do but it was also the last time i ever had to suffer in such an excruciating way. No more googling cures, no more trying to see if it will get quieter, no more worrying. I just bought a ton of ear plugs, some white noise for those tough nights...and then set myself to a habit of looking out for loud places and avoiding them. My life style has changed but for the better, I don't go to bars or clubs any more...theyre replaced by spa days and work out routines. I found solace in little animals and plants, overall I became a healthier person because of T...over the years my T has also lessened without any help from me. I think personally the more you stress and over think over T the worst it gets.

 

[Jazzer]

I live both in heaven......

.........and in hell........

.........being tortured.......

 

[Jazzer]

The young lady that painted this amazing picture was receiving treatment in the Royal Marsden Cancer Hospital in Sutton, which we frequently visit with our charity appeal.
Though not related to Tinnitus, the dilema is identical; longing for peace and happiness, but cruelly mired in distress......

 

[Jazzer]

Just my opinion, I think the ups and downs and the extremes in between of hope and distress, disappointment and pain. Good days when hope is ignited, then watch it crashing down again in the pits of resentment and hopelessness.

Habituation for me IS the key, I accepted my fate and that was the hardest thing I ever had to do but it was also the last time i ever had to suffer in such an excruciating way. No more googling cures, no more trying to see if it will get quieter, no more worrying. I just bought a ton of ear plugs, some white noise for those tough nights...and then set myself to a habit of looking out for loud places and avoiding them. My life style has changed but for the better, I don't go to bars or clubs any more...theyre replaced by spa days and work out routines. I found solace in little animals and plants, overall I became a healthier person because of T...over the years my T has also lessened without any help from me. I think personally the more you stress and over think over T the worst it gets.

Very interesting piece CG.
You sound as if you are doing pretty well.
I suppose we will always wonder what the extent of each other's Tinnitus noise is.
Volume is obviously a factor......x

 

[TuxedoCat]

Habituation is not a substitute for a cure, it is a substitute for no cure.

 

[Ed209]

Habituation is not a substitute for a cure, it is a substitute for no cure.

Exactly this. I'm not sure where all the hate for habituation comes from; what else is there? The body's ability to adapt is real for many people.

However, a treatment or a cure would change everything and I'm on the side of looking at all options simultaneously. I wouldn't advise people to simply sit and suffer whilst we wait for a treatment or a 'cure'. We can do many things to improve our outlook on life and to distract the brain from the noise.

If any of you reading this are pro-cure then please do some advocacy work to actually help the cause. Constantly talking about the need for a treatment without taking any form of action will not help anyone, and it certainly won't advance tinnitus research.

 

[TuxedoCat]

That is not what I want to fund. Call me selfish, but I want a damn cure..

Selfish? I wouldn't call it selfish to desire the quality of life that you had before tinnitus or that those without tinnitus have currently. I don't believe anyone would not want a cure to exist, even those mildly afflicted. There are people on this site who had mild tinnitus for years, functioned well with it and then suffered another acoustic trauma and wound up with intrusive tinnitus. It doesn't hurt to have one in the bank.

I was once told that the concept of Quality of Life was a North American thing. Would like to know from those in other countries if this is the case.

My experience with ENT's is exactly the same as yours, I'm sure. Unless there is a physical, medical reason or known correctable etiology for your tinnitus, there is absolutely no reason to see an ENT. They are clearly NOT trained in tinnitus management or therapies.

If anything, this should be in the neurologist field of expertise. It's a brain disorder, and that is where the cure lies.

Couldn't agree more. In my opinion, the problem is a historical one. Until as late as the 1990s subjective tinnitus was thought to originate in the ear. So naturally patients would go to or be referred to an ENT. Now the ENT couldn't do anything but fortunately didn't have to feel too badly about that because the he/she could refer the patient on to an audiologist.

So the treatment of tinnitus landed with audiologists who don't prescribe drugs and treat the hearing pathway only as far as the cochlea. Therapies like ear-level maskers or table top sound generators fit perfectly with audiologists because they know devices. And, as an added bonus for insurance companies and government healthcare agencies, reimbursement for an audiologist is probably far less than for a specialist physician like an ENT. For patients who are in distress with tinnitus, the psychologist provides another low cost avenue for treatment. If I understand the current situation in the UK, psychological treatment for tinnitus is very cost effective for NHS because it's done in groups of patients.

TC

 

[Jazzer]

As things stand at the moment I do not believe it is possible to reduce the volume of Tinnitus.
Whether it will ever be possible to do that, nobody knows.

However, I do believe it is possible to reduce the degree of suffering.......for some people.
For those that can adopt this method.
This is not achieved by 'trying to ignore it.'

Quite the reverse.

Settle down for a period of meditation.
You will 'hear' your Tinnitus of course.
Do not actively listen to it.
Just accept that it is there.
Immediately start to practice involuntary diaphragmatic breathing.
(As outlined in my thread:
"From Actuve Sufferance to Passive Sufferance.")

Over a short period of time, I believe you will have taught yourself to simply 'hear' your Tinnitus, while at the same time feeling quite relaxed.

There is no advantage for me in suggesting this meditational method.
It will not silence your Tinnitus.
I am not selling anything.
I am not anti research.
I hope that a treatment/cure comes along, obviously.
But in the mean time, this method is helping me to adjust and to live a decent life, without distress.

Best wishes
love
Dave x
Jazzer