What Would You Like to Ask a Long-Term Sufferer of Severe Tinnitus?

[Jazzer]

It really wasn't my intention to start such an argument! I honestly just want to create something that might give people a bit of hope, the way similar succes stories gave me hope in the beginning. I owe a lot to those stories!

How likely is it that somebody has screamingly loud Tinnitus, but it no longer bothers them ??
(I wasn't born yesterday - nor the day before.)
For myself - I doubt their original statement.
Broken nerve fibres do not repair.

I know of a few Tinnitus therapists selling books and treatments online, who claim that their Tinnitus levels were so high that they contemplated suicide.
Through some sort of self-administered CBT they have not only cured their own Tinnitus, to the point that it no longer bothers them, but have a nice little treatment package ready to go, that will heal your Tinnitus also.
(at a fancy price of course.)
And should it not work for you, there claim is that when CBT does not work, the answer must be that their client has some prior underlying mental condition that precludes a successful outcome.
————————————————————————
Dr Hubbard joins this discussion between two therapists.

- possibly most of them have some kind of a psychological basis for that problem. I believe that people with bothersome versus non‐bothersome tinnitus have a psychological basis for the difference in the tinnitus effects between them.

Do you agree with that?

Hubbard: Yeah, that's true, and that's been demonstrated in numerous research projects. There are differences in how they think about tinnitus, how they pay attention to tinnitus, and how they behave around their tinnitus.
—————————————————————-
So you see - the 'get out' is that you have some preexisting psychological cause - because, of itself, even severe Tinnitus cannot be debilitating.

These people are talking insulting rubbish.
Without any understanding of how debilitating severe Tinnitus can be, they cannot possibly have any answers.

Call me a skeptic or a cynic.
I am happy with that.
————————————————————-
However I do not want to leave this subject without giving any hope to sufferers.
Learning to practice some meditation will help to keep you calm, and better acclimatise you to the Tinnitus that you cannot avoid.
I do it daily.
It works.

 

[Michael Leigh]

Just don't turn it into a "See, this person has severe tinnitus/hyperacusis and they're living a normal life, everyone can do it!"-story because if someone has severe tinnitus/pain-hyperacusis their life will be different. If it's severe, it's debilitating, however, everyone has their own limits.

Beautifully said @Autumnly and thank you.

Michael

 

[Jazzer]

Because many severe sufferers that are limited in their lives by their tinnitus have been told stories of other people who supposedly have severe tinnitus but are living a completely normal life. And I agree with Jazzer that those stories don't represent what severe tinnitus means. For me, severe tinnitus will have a noticeably negative impact on someone's life.

The only people I've heard who claim to have severe, loud tinnitus while being able to live a completely normal life are the ones that say they can tune it out and this is usually not the type of tinnitus long-term severe sufferers are talking about, they can't tune it out for most of the time.

For me as a severe sufferer, being told yet again that others with the "same condition" are coping better isn't inspiring or motivating, and seeing severe sufferers being used as inspiration for people new to tinnitus doesn't feel good either.

It just makes tinnitus look like a non-issue even if it's "severe".

Autumnly - well said - I would be struggling to make my points without you - I'm serious.
Thank you for your support.

 

[Greg Sacramento]

The only people I've heard who claim to have severe, loud tinnitus while being able to live a completely normal life are the ones that say they can tune it out and this is usually not the type of tinnitus long-term severe sufferers are talking about, they can't tune it out for most of the time.

Agree.

What doctors think:
With very severe tinnitus, constant severe pain, or severe stress a person has no job, never drives, and can't hold their own with conversation. They can't bathe without assist. They can't cook. They must have someone else explaining things to a doctor. Doctors think the problem with measurement is that those that don't have emotional well being have low pain acceptance and think that perfection is needed for quality of life.

What I think:
A truly honest and once stable person with severe tinnitus, knows that it's as loud as a fire alarm.

 

[GregCA]

Well, I will just have to strongly disagree with you on that, speaking only for myself.

Tinnitus is a quality of life hit.

Being in a distress state for any reason is a quality of life hit.

I don't know why you say we're disagreeing. I'm agreeing with the above statements.

I think distress implies impact on quality of life, but impact on quality of life doesn't (necessarily) imply distress.

I gave you an example: me. I have no distress anymore, but my quality of life is degraded. I know a few people who have lost the ability to move some of their limbs. They are not distressed anymore, but their quality of life is quite degraded too.

The combination of both of these things, for me, is very much a 1 + 1 = 3 situation. Since I have no real control over the tinnitus but some significant degree of control over the distress, "3 - 1 = 1". That's why I think distress is ultimately a better indicator.

I don't see the logic by which not having control over something means it's a better indicator.

Like, if someone has a severe anxiety disorder with no comorbid factors, their entire problem is distress. Are you suggesting that such a person has the same quality of life they would if they didn't have a severe anxiety disorder?

No, that's not what I'm suggesting, see above.

 

[linearb]

@GregCA sorry, I think I misinterpreted what you'd said.

 

[rdz]

I'm still kind of new to tinnitus, so my questions will be has it gotten worse over time? How do you manage it?

 

[GregCA]

@GregCA sorry, I think I misinterpreted what you'd said.

No worries!

 

[Tex]

I'm still kind of new to tinnitus, so my questions will be has it gotten worse over time? How do you manage it?

Mine got barely worse not long after the initial "blast" onset around 2008 and then sort of leveled off at just loud. I had had it without even knowing it before that. Meaning I thought everyone barely heard crickets in the quietest of environments just before going to sleep at night.

How do I manage it? I do my best to keep stress levels as low as I can. I try to be as distracted by other low level noise as I can, such as wind noise, water (lake) noise, fan noise for sleep, etc. Serious exercise, though that barely spikes it for a few minutes afterwards, but makes me feel much better overall quickly after the cool down.

And I avoid the "I'm dying from this shit" "I'm going to kill myself" topics on this site. That doesn't help anyone, just makes it worse. I advise you to not read them. When you see the title of the thread just move on. Read something positive.

Whenever I'm on here I am just looking for any different management, distraction, or therapy methods I can find. And if I have anything to add I do.

I still go to a great ENT every year just to monitor my hearing for any further deterioration. Luckily the hearing graphs have about leveled off.

 

[Lynny]

The worries of positive stories devalueing genuinely dibilitating tinnitus have been explained to me on different occasions now. I understand, I really do.

Still, I think there's a greater goal to reach by sharing these stories. Not that I feel it's a 'they or them' situation; but the (in comparison) relatively small number of people with severe and debilitating tinnitus that have given up on life (almost) entirely and are suffering unbearably are not 'worth' (for lack of a better word!!) witholding postive stories from new and/or differently afflicted people.

People who share stories are not responsible for what they get turned into, i.e. 'They're suffering as well but dealing with it so you should too.' type statements.

I will refrain from using terms like 'debilitating' as its literal definition is obviously debatable- to minimize the risk of offending anyone.

I wish you all very well, truthfully.

 

[Jazzer]

What I think:
A truly honest and once stable person with severe tinnitus, knows that it's as loud as a fire alarm.

There are not that many of us on here who have the integrity to speak the truth about severe Tinnitus.
I truly appreciate all of us that do help to keep the picture straight, particularly in the face of 'therapists' and charlatans who speak from a point of self-interest to this disadvantaged group of people, selling bogus 'twaddle' for big bucks.
Save your hard earned money folks, practice some good 'free' meditation, and keep the faith with each other here on Tinnitus Talk, where the camaraderie is genuine.

 

[Jazzer]

And I avoid the "I'm dying from this shit" "I'm going to kill myself" topics on this site. That doesn't help anyone, just makes it worse. I advise you to not read them. When you see the title of the thread just move on. Read something positive.

Absolutely agree.
Find the best practices that work for you and develop good coping methods.

 

[Jazzer]

relatively small number of people with severe and debilitating tinnitus that have given up on life (almost) entirely

My experience on Tinnitus Talk is that even people with severe tinnitus do not usually 'give up on life.'
Most of us soldier on, coping and finding the best ways to come through this 'shit' with our personality and character intact.

 

[Jazzer]

 

[Mattv]

My tinnitus is generally very loud. I've had it over 2 years now. It has not gotten any better and I strongly suspect it won't ever. I just don't left it bother me. I do things that keep me relaxed and calm and it's just not worth it to agonize over something I can't control and is not really hurting me. I've dealt with worse stuff. Pain most people would kill themselves over.

Everyone is so different, but if you can find some way to change the way you look at it, it stops being a curse and just a nuisance. I know it's hard for some folks, but being strong and crazy positive is the only way.

 

[ajc]

The worries of positive stories devalueing genuinely dibilitating tinnitus have been explained to me on different occasions now. I understand, I really do.

Still, I think there's a greater goal to reach by sharing these stories. Not that I feel it's a 'they or them' situation; but the (in comparison) relatively small number of people with severe and debilitating tinnitus that have given up on life (almost) entirely and are suffering unbearably are not 'worth' (for lack of a better word!!) witholding postive stories from new and/or differently afflicted people.

People who share stories are not responsible for what they get turned into, i.e. 'They're suffering as well but dealing with it so you should too.' type statements.

I will refrain from using terms like 'debilitating' as its literal definition is obviously debatable- to minimize the risk of offending anyone.

I wish you all very well, truthfully.

What happened with this Lynny? Are you posting the transcript?

 

[johnsole65]

I realize that, but the difference to him is that he's actually out in the world and not on any forums because he is living his life regardless of tinnitus...

You statements don't really hold any weight because there are so many variable factors in how tinnitus might effect someone's life.

For example.

I personally have Obsessive compulsive disorder, and its severe. I'm also a musician. So hearing loss and tinnitus will probably be more life changing than for your friend. This is just an example.

Also what do you mean "not on any forums", as if this somehow is an indicator of not living your life.

I'm sorry I just get posts like these, they aren't thought out well.

 

[PeteJ]

I think I will commit suicide eventually. I have been told so many opinions from people who mean well to those who are plain mean.

Severe tinnitus to me is currently a noise that sounds like a loud, high pitched power line. Buzzing or ringing, I don't know how to describe it.

My ears are in pain too on top of all that.

I am currently having trouble trying to sleep with this. So, I struggle to escape this with sleep.

I am told to hang on, to try neuromod but I don't want to wait.

If the t won't improve, reduce or stop, I want to stop it by ending my life.

That is severe tinnitus to me.

 

[Mathieulh]

How does he or anybody else know his Tinnitus is "above 80 dB?" I go to one of the top ENT docs in Dallas annually. He made it clear from the start that it is a subjective condition and one's volume cannot be measured. He said Hyperacusis is the same. If you personally are overly sensitive to loud noise, you have Hyperacusis. At least that is what I was told.

Mine was relatively "easy" to measure, I identified the frequency and pitch using my good ear, then listened to it from an external source until my Tinnitus no longer covered the noise.

The worst it got was around 65db and that was excruciating, I can't imagine what 80db would be like.

 

[Ken219]

I'm still kind of new to tinnitus, so my questions will be has it gotten worse over time?

YES!

 

[Lynny]

I think I will commit suicide eventually. I have been told so many opinions from people who mean well to those who are plain mean.

Severe tinnitus to me is currently a noise that sounds like a loud, high pitched power line. Buzzing or ringing, I don't know how to describe it.

My ears are in pain too on top of all that.

I am currently having trouble trying to sleep with this. So, I struggle to escape this with sleep.

I am told to hang on, to try neuromod but I don't want to wait.

If the t won't improve, reduce or stop, I want to stop it by ending my life.

That is severe tinnitus to me.

I'm very sorry this is your situation. I hope and pray things will get better for you. Please do hang on! Neuromod may indeed offer serious hope. I don't think there's anything I can say that holds any weight but I just want to say that the best cure for me and people I talk to is distraction. Anything that can distract you will help you. Good luck and all the best<3

 

[Lynny]

I'm still kind of new to tinnitus, so my questions will be has it gotten worse over time? How do you manage it?

There's no way to tell if it will! For most people it does get better, or they learn to deal with it. Check out doctor Hubbard's story.

 

[BrStan@]

Don't bother asking, 50% here have it bad and long term. You can ask any of us.

 

[OrchestraInHead]

Hello!

I have severe tinnitus in both ears with several different sounds. Annoyingly, I have a recent spike from noise exposure so it's louder than loud. However, I know habituation will happen and eventually (like before) it won't bother me. It'll be background noise...