Tinnitus and Injustice

[tinnitussufferer]

The thing that angers me is that i feel i was unfairly chosen to get tinnitus. Why me? I avoid drugs and alcohol, (which are probably ototoxic) and never went to discos or even parties. I only used to listen to my music at home. The volume was fairly high but nowhere near party levels. The thing that triggered my tinnitus was a single acoustic event. Again this would have probably been less loud than a disco, but maybe it was like a gunshot which can be brief but very loud. It started off as a fairly high pitched tone. Not very loud. Several years on it has become a much lower tone and louder.

There are many more people out there that regularly go out at night, they eat junk food, have sex, smoke, drink, listen to loud music and even get tinnitus for a night or two. But they dont suffer permanently.
Its not fair.

i know djs that play at clubs regularly. They have been doing it for years yet they get to come home and lay down in silence. They dont suffer like we do.

 

[Dr. Nagler]

The thing that angers me is that i feel i was unfairly chosen to get tinnitus. Why me?

There is absolutely nothing fair about what has happened to you. You did not get tinnitus raping and pillaging. You got it simply because you had bad luck. Just like I did. Total bad luck. Incredible bad luck. Shitty bad luck. The worst bad luck.

The question, then, is not whether or not you deserved it. You didn't. You absolutely didn't. So the question is not whether or not you deserved it. That issue is settled. Rather, the question is what are you going to do about it now that you have it. And in that regard, you must make your own luck!

 

[tinnitussufferer]

the thing that worries me is that im still young and i dont know how this is gonna unfold. Could it get louder in 10 years or more? how much louder could it get? could it become intolerable? could i lose my hearing? TRT is a contradiction. It tells you that the loudness does not affect its effectiveness yet everytime it does get louder, you have to RE habituate. Which means it DOES matter. Which means we are not being told the truth.

Tinnitus is cruel in that it rarely goes away or gets better. We do hear people saying it gets worse though.
We also hear cases of people committing suicide. That is testament to the severity of the torment it causes. Its clearly not just malingerers trying to avoid work.

 

[Mark Beehre]

Could it get louder in 10 years or more?

Could it be cured within 10 years?

 

[tinnitussufferer]

I dont think it can ever be cured. Not every disease can be cured can it?

 

[jimH]

Even if there's never a cure but they develop treatments that significantly reduce the severity of it would bring great relief for most people that suffer fromT.

 

[Dr. Nagler]

Even if there's never a cure but they develop treatments that significantly reduce the severity of it would bring great relief for most people that suffer fromT.

We actually have some of that now. For instance, CBT has been shown to decrease tinnitus severity as confirmed by the Cochrane Collaboratuon.

 

[tinnitussufferer]

first of all i am not a fan of temporary bandaid solutions. i dont want to be on medication for life. ITs not only costly but all medication have horrific side effects some maybe permanent.

secondly can someone tell me how it is that after you have habituated with TRT, you need to REHABITUATE if it gets louder? i thought loudness was irrelevant?

 

[marqualler]

The thing that angers me is that i feel i was unfairly chosen to get tinnitus. Why me? I avoid drugs and alcohol, (which are probably ototoxic) and never went to discos or even parties. I only used to listen to my music at home. The volume was fairly high but nowhere near party levels. The thing that triggered my tinnitus was a single acoustic event. Again this would have probably been less loud than a disco, but maybe it was like a gunshot which can be brief but very loud. It started off as a fairly high pitched tone. Not very loud. Several years on it has become a much lower tone and louder.

There are many more people out there that regularly go out at night, they eat junk food, have sex, smoke, drink, listen to loud music and even get tinnitus for a night or two. But they dont suffer permanently.
Its not fair.

i know djs that play at clubs regularly. They have been doing it for years yet they get to come home and lay down in silence. They dont suffer like we do.

As a proponent of CBT myself (it definitely helped me get through some dark days), these are exactly the kind of thoughts that CBT can address and help you cope with. I actually used @Dr. Nagler's "Letter to a Tinnitus Sufferer" exercise at the end of that document on days that I had severe anxiety and depression related to tinnitus. It was and continues to be a very helpful exercise, both in coping with tinnitus and in other aspects of life (of which I have a newfound appreciation for!)

 

[Dr. Nagler]

first of all i am not a fan of temporary bandaid solutions. i dont want to be on medication for life. ITs not only costly but all medication have horrific side effects some maybe permanent.

CBT is largely free and has no side effects whatsoever. Read @marqualler's post directly above.

secondly can someone tell me how it is that after you have habituated with TRT, you need to REHABITUATE if it gets louder? i thought loudness was irrelevant?

Most folks don't have to re-habituate at all if their tinnitus changes after TRT. I wasn't so lucky. So I made my own luck.

 

[Silvio Sabo]

first of all i am not a fan of temporary bandaid solutions. i dont want to be on medication for life. ITs not only costly but all medication have horrific side effects some maybe permanent.

secondly can someone tell me how it is that after you have habituated with TRT, you need to REHABITUATE if it gets louder? i thought loudness was irrelevant?

Well I personally don't have any problems with medicating against this thing for life if I have to. It's just that there are no such medications yet.

You worry about side-effects. Well, having an annoying sound in your head 24/7 for life is kind of a bad side-effect if you ask me.

 

[LadyDi]

Dear @tinnitussufferer: I hesitate to get involved in posting on this thread, as you seem somewhat disinclined to listen to other viewpoints. But here it goes. This is offered in kindness, not criticism. Because I believe I have something that might your ease your suffering, which I am sure is real...

Change your attitude.
It appears you have had tinnitus since 2004. That is 11 years. And you still are stuck in the loop of "It's not FAAAIIRRR!"

Well, much in life is not fair. In fact, in many cases, "fair" as a concept doesn't even apply to life as a whole, since so much in life is random and uncontrollable. Especially when it comes to disease and illness. I'll just start off with one of the best examples: Young children who die long, lingering deaths from cancer, their parents weeping at their bedsides. I'll leave it there.

Until you learn to let go of your anger and accept the fact that you have tinnitus, possibly for the rest of your life, you are going to stay stuck exactly where you are. Moving into acceptance will give you the power to take control. But you are the one who has to want it.

I personally think CBT would do you a world of good. But that, of course, is just my opinion -- again, offered out of caring, not criticism. You are free to consider it or discard it. No offense taken if you choose the second option.

It's up to you. But wouldn't it be great if you didn't have to label yourself as @tinnitussufferer anymore?

 

[jimH]

If we have an "expectation" that life should be fair, we set ourselves up for disappointments, frustration, bitterness and resentment. That's because life is often not what we would call "fair." Moving into a state of "acceptance" as @LadyDi wrote, frees us to get past those negative emotions and move on to a better place (state).

 

[marqualler]

CBT is largely free and has no side effects whatsoever.

True that tenants of CBT can be free. I would say however that it's worth the financial investment (at least it has been for me) to see a good professional therapist who practices CBT. And at least in the USA, in my experience, CBT therapy is usually covered by insurance. If that therapist has patients with tinnitus, then to me that is a bonus. Someone like the one @kmohoruk is seeing (see his recent post about his recent experience.)

I'm currently trying to find a therapist who practices CBT, has experience treating patients with tinnitus, and uses practices of yoga. (A narrow field nonetheless, and such a person may not actually exist!)

 

[Dr. Nagler]

True that tenants of CBT can be free. I would say however that it's worth the financial investment (at least it has been for me) to see a good professional therapist who practices CBT.

I totally agree with you. My comments about CBT being free were made to differentiate it from approaches like TRT that are comparatively costly because they always involve a clinician whereas CBT can often be done "on your own."

 

[marqualler]

My comments about CBT being free were made to differentiate it from approaches like TRT that are comparatively costly because they always involve a clinician whereas CBT can often be done "on your own."

Ah got it--the limits of the internet forum is context like this, of course.

I would still advocate for paying for a licensed therapist of some type to carry out CBT. But there are a number of different good options in my opinion. My work, for example, offers a computerized CBT course for all employees. It is covered under my Employee Assistance Program, which I believe is a benefit offered by many companies under their existing health insurance package.

 

[NiNyu]

There are many more people out there that regularly go out at night, they eat junk food, have sex, smoke, drink, listen to loud music and even get tinnitus for a night or two. But they dont suffer permanently.

I know djs that play at clubs regularly. They have been doing it for years yet they get to come home and lay down in silence.

I used to wonder about that too. I think, all those people are highly desensitized. You can train your body to endure much more harm when you gradually very slowly expose yourself to whatever. Your body buids up tolerances.
I suppose if I hadn't overprotected all the time, I wouldn't have got killer T now.

Moving into acceptance will give you the power to take control.

The power to take control of what?

 

[Danny Boy]

Could it be cured within 10 years?

It can be done now in all honesty.

 

[engapol]

We've already making huge progress in trying to determine what exactly gives rise to Tinnitus. Try to take comfort in the knowledge that as long as tens of millions of people suffer from this, medical research will continue. I wouldn't be surprised if an effective treatment started trials within the next 10 years.

The world hasn't forgotten us, all the best to the doctors and scientists working towards a cure.

 

[inadmin]

A question you asked and was missed - you won't lose your hearing due to T. You need, however, to protect your ears.

 

[Street Spirit]

" It is your resistance to 'what is' that causes your suffering"

You don't have to suffer.

 

[nills]

The thing that angers me is that i feel i was unfairly chosen to get tinnitus. Why me? I avoid drugs and alcohol, (which are probably ototoxic) and never went to discos or even parties. I only used to listen to my music at home. The volume was fairly high but nowhere near party levels. The thing that triggered my tinnitus was a single acoustic event. Again this would have probably been less loud than a disco, but maybe it was like a gunshot which can be brief but very loud. It started off as a fairly high pitched tone. Not very loud. Several years on it has become a much lower tone and louder.

There are many more people out there that regularly go out at night, they eat junk food, have sex, smoke, drink, listen to loud music and even get tinnitus for a night or two. But they dont suffer permanently.
Its not fair.

i know djs that play at clubs regularly. They have been doing it for years yet they get to come home and lay down in silence. They dont suffer like we do.

You know your T is probably louder when you believe what you just said?

 

[soundmachine]

first of all i am not a fan of temporary bandaid solutions. i dont want to be on medication for life. ITs not only costly but all medication have horrific side effects some maybe permanent.

Your right. These are band-aids at best. Pretty crude ones and a joke. However, keep the faith. They are coming close to a *cure*...let me repeat....a cure (not a band-aid) for hearing loss. And once you fix hearing loss, for SSNHL you fix T. As the brain gets the signal back, the T will go down or away.

Please check out the research section. We already are in clinical trials for gene therapy. They are using a novel approach to inject a gene into the human cochlea that will regrow hair cells and fix hearing loss. It is still early but probably in 10 years...we have a cure. Let me state this again. We are already in clinical trials. Not just the lab...but clinical trials. So don't think you will live with this shit for the rest of your life...you wont.

Keep that in mind and don't think about it getting worse. Just deal with the present and move on with hope...real hope...not this idealized shit of TRT and habitualizing as it gets worse. NO. Just deal with at as it is now. Hope that these clinical trials bring results

 

[tinnitussufferer]

You know your T is probably louder when you believe what you just said?

what?

 

[tinnitussufferer]

Your right. These are band-aids at best. Pretty crude ones and a joke. However, keep the faith. They are coming close to a *cure*...let me repeat....a cure (not a band-aid) for hearing loss. And once you fix hearing loss, for SSNHL you fix T. As the brain gets the signal back, the T will go down or away.

Please check out the research section. We already are in clinical trials for gene therapy. They are using a novel approach to inject a gene into the human cochlea that will regrow hair cells and fix hearing loss. It is still early but probably in 10 years...we have a cure. Let me state this again. We are already in clinical trials. Not just the lab...but clinical trials. So don't think you will live with this shit for the rest of your life...you wont.

Keep that in mind and don't think about it getting worse. Just deal with the present and move on with hope...real hope...not this idealized shit of TRT and habitualizing as it gets worse. NO. Just deal with at as it is now. Hope that these clinical trials bring results

i keep hearing about clinical trials but nothing ever comes of it. There was another trial for a drug to treat tinnitus that was mentioned on here, now its all gone silent.

 

[soundmachine]

i keep hearing about clinical trials but nothing ever comes of it. There was another trial for a drug to treat tinnitus that was mentioned on here, now its all gone silent.

Those are band-aids...like I said. They are pharmaceuticals. Drugs ...like you said before...are just mutilating chemical compounds that have side effects and lose potency over time. Drugs are useless and the result of "modern" medicine mutilating our bodies with either surgery or chemicals with a result that is almost as bad as the disease. Or prosthesis (like hearing aids) that are ridiculous (a modern day wooden peg-leg). Basically, if your body can't heal itself, then you are f*cked.

What I was talking about was gene therapy. The future of medicine will be to regenerate the damaged tissue back to the normal state (a real cure). This is done with either stem cells (preferably iPSC) or genes that turn on receptors or transdifferentiation of cells.

The trial running now is a *very* big step in medicine. It is *not* some lame ass drug. It is a gene that turns on a cell to replace a damaged one. It could fail...yes. But so far it looks way more promising than AM-101 or those other sham "cures" for T. I wouldn't give much of a damn for those.

 

[Xorthian]

i keep hearing about clinical trials but nothing ever comes of it. There was another trial for a drug to treat tinnitus that was mentioned on here, now its all gone silent.

Because it takes time and like I tried to explain today in another thread its not like a lot of members of TT get onto those trials (I was talking about aut063 - there are 3 people in it only from here).
It's good to balance hope for future therapies or drugs to get onto market with accepting reality as it is now.

@soundmachine
I wonder what cost of this could be.

 

[soundmachine]

@soundmachine
I wonder what cost of this could be.

Probably a lot of $$$$$. Only the rich or nice insurance companies will be able to help. So much for the less financially connected I'm afraid.

 

[Xorthian]

Probably a lot of $$$$$. Only the rich or nice insurance companies will be able to help. So much for the less financially connected I'm afraid.

Thats why I hope we will at least get medicine that can supress T sound. If we get also therapy that can permanently cure out of tinnitus or hearing loss that will be beyond amazing. Truly marvelous.

But we need drugs for common masses. Which I belong to as well.


As of topic - dwelling on mistakes or what happens to us only causes further suffering. I do not mean that T can easily be ignored - or at all for some cases, but certainly there is no need for ourselves to beat up over that damn sound in our heads.

 

[soundmachine]

But we need drugs for common masses. Which I belong to as well.

No, you need other countries that have a less monetized system of medicine to step up to bat. Novartis is a big pharm and they will charge brutal prices. And don't think that some of the drugs for the "common masses" will be cheap too. They wont be cheap and you will have to take them for a long time (not just a few days).

So the best and cheapest bet is regenerative medicine but it will require other countries to get involved and not just a few rich pharmaceutical companies (they will gouge).

And on the original topic, it is an injustice. I have had two big diseases in addition to T. I also feel it is unfair but life is not a fair system. So all I can do (or anyone can do) is keep your mind busy with hope. And I do have hope in regenerative medicine. I don't think it is sci fi but coming to a theatre near you soon.