Oh Dear — It’s That ‘H’ Word Again...!

@Jazzer

 

Hahaha......Wonderful !!

 

@Jazzer

 

@Jazzer

Dave, all kidding aside, you are a valuable member of this community and everyone here appreciates you and what you believe in. I am not surprised in the least when you take things in stride and walk on the cheerful side.

 

I’m not always as cheerful as I may seem Ema, with this wretched thing, but it ain’t gonna take my sense of humour.
I usually try to thwart disagreements on here by turning them in to ‘banter.’
We are all fighting the same cause really.
We need a cure, a treatment, but we also need coping methods to see us through. x

 

@Jazzer

It's not going to take your sense of humor and it's not going to take my hope that, if there isn't a cure, I can still live a good and gracious life.

Still, it upsets me when I see how another member can treat you with such disrespect, it's not right, not where I am from anyway.

Enough from the peanut gallery....carry on.

 

Okay this ones actually kind of funny.

That first ones more of the habituation/treatment divide in the tinnitus laity and medical communities. If they all agreed on a direction we could peddle into that respective direction well. And that direction should of course be finding a treatment.

 

@threefirefour

To be honest TFF - I’ve never really bought into the Habituation concept as a reality, or a cure.
I am not at all sure of it’s efficacy.
Adopting a degree of acceptance is almost certainly helpful though.

BUT - sometimes you have criticised those of us who tend to suggest therapeutic practices, designed to help us sufferers cope a little easier.
Learning deep relaxation and meditation will not cure people’s Tinnitus, but may well come to help them feel a little more comfortable.

I personally do not see ‘looking for a cure’ and ‘learning coping techniques’ as being mutually exclusive.
Surely, we all desperately want a treatment and a cure; and equally, we all need to cope until then.

The research medics will not be put off raking in millions of dollars, because a handful of snowflakes learn meditation.

Come on old sport?
I know you love being a rebel,
and I must admit, you’re very good at it.
Best we’ve got !!

 

If only that were true. Sure it's not because a couple snowflakes focus on meditation, but it's because these guy think they can have a lockdown on tinnitus sufferers. Why do you think TRT is still a thing after being dead-of-the-line style obsolete since the 1980's? Nevermind the fact that habituation-spending is a HUGE waste of money, because once a treatment is found ALL that money goes down the drain. Really all this wasted money is doing, is delaying the inevitable.

 

You’re right Dave, I’ve never understood why anyone wouldn’t want to learn to cope. It has no bearing on whether we’ll see a treatment or a cure, but allows people to become functional again.

If we want to help aid the progression of treatments, or a cure, then we need to help campaign. We need to help raise money by donating and influencing others to donate as well. That is how you affect change. You don’t affect change by continuing to suffer in silence. So, my belief is that all tinnitus sufferers should find ways of coping, and ultimately beyond. Not just to cope, but to live a fulfilling life despite tinnitus.

 

If a tablet or a procedure were found, the reward would be massive.

An estimated 10% of the population suffer.
I’m not sure you can blame people for clinging to the only therapy there is, even though it may be a placebo.
People need hope, and need comforting.

 

I hear what you’re saying thereforefour, but what if there isn’t a treatment or cure in any of our lifetimes? What then? There’s an old saying that applies here: hope for the best, but prepare for the worst.

Isn’t it better that people find ways of dealing with their tinnitus head-on? To find a solution that can calm their thoughts and refocus their minds. There’s loads of things people can do to help them through the bad days and this can ultimately lead to changing the bad days to whatever one wants their day to be on a permanent basis. To put all ones eggs into one basket is asking for trouble.

Campaign for treatments, but don’t make a conscious effort to do this whilst suffering, if you can find a solution to help you accept your personal situation, then do it. To be so black and white is extremely short sighted.

 

@threefirefour

From my observation, spending on Habituation over here in the U.K. is minimal.
You may be offered a handful of group sessions if you’re lucky, and that’s about it.

But then I have to admit to being completely ignorant of therapy costs over there.
I’m prepared to believe you are right.
Is there any info on those costs?

 

Wow you're lucky AF. This is why I'm a BTA fan. They know what's up. Some sort of TRT/CBT or whatever meme "therapy" there is these days is so easy to find here in the states. Part of it has to do with our vet population, and the fact ATA keeps shilling for this stuff. I don't donate to them because they continue to waste our money on habituation stuff that nobody wants to be spending money researching anyways. BTA all the way!

 

I wasn’t offered anything at all Dave. The cost of TRT is absurd by the way. In fact, all the treatment costs listed on the Tinnitus Clinics’ website (U.K.) are all laughable. I’d never pay for any of them as the clinical evidence is weak at best, so why drop 5 grand on a glorified MP3 player? That is pretty much the price for ACRN last time I checked. When I see these prices it definitely annoys me.

Maybe they cure you because you become depressed about the debt you’re in instead of the tinnitus? Who knows.

 

@Ed209
No - I was offered nothing either Ed.
Which means that any treatments done over here are private, and do not touch the NHS purse at all.
In the words of the resigning judge, in blazing saddles, to the new sheriff of Rock Ridge township:

“Son.......you’re on your own!”

All of which means that @threefirefour has a very good point, particularly given the VETs and the PTSD

 

@threefirefour

I think apologies may be in order to you TFF.
I was ignorant of the parochial differences, in treatment options, and finances old sport.
Better understood now buddy.

All Tinnitus treatment pretty well has to be privately funded!

 

What pisses me off is that these people probably well know you can do it for free. So why charge an absurd price?

 

You can do it for free; Steve put a page together with some relevant info of how to do it. It might not follow the exact protocol but it’s probably close enough.

 

Is that - how to do TRT Ed?
Where would I find that?

 

No Dave, ACRN which is neuromodulation. It has a patented algorithm but I think a few people get the gist of how it works and have created sound files in the same vane.

 

I believe I’ve read that it only really works if the “T” signal is tonal?

Mine is a significant non tonal hiss.

 

Yea you’re right. It’s apparently for tonal T

 

It works for hissing too. It's very effective on me and I have a hissing.

 

@Ed209 @Jazzer can I ask what your tinnitus handicap inventory score is?

 

@threefirefour are you still 88 on the tinnitus handicap inventory score?

 

In short, I’ve never done one. Although it’s not really an objective way to measure how bad your Tinnitus is, it’s a way of measuring how much it affects your life, or how badly you react to it. My score would fluctuate hugely from onset to now.