Making Tinnitus Your Best Friend

[Marlene]

These threads are what makes TT so great,we've all got our own individual response to tinnitus and how it affects us as individuals,these post prove it day after day.its good when one comes on and encourages another whose having a really bad time,where else would you get that support ,only from another ,who else would know what those days have been like,we should remember we can go backwards as well as forwards.it has happened to some on these threads.

 

[Mpt]

"the greatest obstacle to living with tinnitus so it no longer affects us has less to do with the characteristics of our tinnitus and much more to do with the content of our thinking about tinnitus"
-true to some degree, but that's seriously overly-optimistic, in reality tinnitus is a worse affliction than the conception of it that exists in here2help's head

I know you're are here to help, but its obvious that even when people are doing better, like Kathi is-- their life isn't as good as before, period. If for no other reason that once you have tinnitus you have the sword of damocles always overhead... worsening happens, and it not "rare"... my mom has t that she has never sought help for because it was a gradual onset, and over the past decade it gotten worse, thats what happens when you have tinnitus and you age- the perception gets worse-- so I think it would be helpful to tell people with serious t (not the kind of t that is minor enough that when a person stops monitoring- they might not hear much) that habituation isn't doing a "180" as you say- life isn't going to be as good as before in some respects, and as illustrated by people that come on this board everyday-- its quite common that after a period of habituation, t changes and there is more suffering up ahead before (hopefully) another habituation, but that's not even guaranteed-- thats the truth, its not pretty-- but it is what it is--- there needs to be more focus on finding treatments, actual treatments not psychological treatments for a physiological condition...
my 2 cents-- the medical community needs to know that severe tinnitus isn't just something that people get used to over time and that its no big deal-- my father in law gp with his 30 years of practice had that take on it exactly because the dominant attitude regarding tinnitus is the one you espouse

 

[RaZaH]

@Mpt Agreed.

 

[here2help]

@ampumpkin thank you for the correction. Since reading your post, I have brought my Gender-o-meter to the shop for repair.

@Mpt you write "in reality tinnitus is a worse affliction than the conception of it that exists in here2help's head." I don't have a "conception" of tinnitus; I have tinnitus, same as you. At one time, I was just as upended by tinnitus as you are.

I understand you regard tinnitus as an "affliction" and yourself as afflicted. You write it is "obvious that even when people are doing better … their life isn't as good as before, period. If for no other reason that once you have tinnitus you have the sword of Damocles always overhead …" In a sense, you are illustrating my point. You think of tinnitus as an affliction and yourself in perpetual danger. At one time, I thought of myself as afflicted by tinnitus too, and felt as imperiled as you do. It took me some time to work out how much the content of my thoughts about tinnitus contributed to my feeling overwhelmed by it.

Tinnitus once had an enormous impact on me, but no longer does. My life is every bit as good as before I developed tinnitus, and I'm not unique in that regard. As an added bonus, if I can help a few people who are having a rough time with tinnitus, I consider it an opportunity to convert something that was once very difficult for me into something that may make a positive difference for someone else.

Many people with tinnitus think of tinnitus one way and learn over time to think of it very differently, but not because each has "the kind of t that is minor enough that when a person stops monitoring – they might not hear much." It isn't necessary for tinnitus to be soft and for someone to have minor tinnitus to no longer be aware of it or no longer affected by it when that person becomes aware of it. Time and again, studies have shown the majority of tinnitus sufferers habituate tinnitus regardless of its particular characteristics (i.e., its spectrum, volume, number of sounds, etc.). You say "severe tinnitus isn't just something that people get used to over time". Habituating tinnitus doesn't mean getting "used to" tinnitus. It is more like not caring one way or the other.

You write about the need to find "actual treatments not psychological treatments for a physiological condition…" Actual treatments and very effective management strategies exist.

here2help

 

[Della]

Thanks @RaZaH for your thought-provoking question, which turned up a lot of fruitful discussion. What you did here reminds me of a great quote by (I think) the art historian Roger Keyes: "The best investigative method is to reframe all your assumptions as questions." That can sometimes be uncomfortable, but also valuable.

By the way, I notice you're from Iceland. Back in the spring I discovered the group Arstidir, and wound up contributing to their Kickstarter campaign. I'm finding their album Svefns og vöku skil wonderfully healing in these difficult days, and I'm listening to it over and over.

 

[RaZaH]

Thank you @Della , I felt for a moment that I might be offending some people with the way I presented this "thought", which of course was not my intention. I agree , a lot of good discussion came from this.

Yes , Arstidir is a great band "Svefns og Vöku skil" means " Between wake and sleep".
You might want to check out Olafur Arnalds , if you like some chillout neo-classical stuff.
Or Agent Fresco if you like rock.
Or even RaZaH if you like party music

 

[Mpt]

@ampumpkin thank you for the correction. Since reading your post, I have brought my Gender-o-meter to the shop for repair.

@Mpt you write "in reality tinnitus is a worse affliction than the conception of it that exists in here2help's head." I don't have a "conception" of tinnitus; I have tinnitus, same as you. At one time, I was just as upended by tinnitus as you are.

I understand you regard tinnitus as an "affliction" and yourself as afflicted. You write it is "obvious that even when people are doing better … their life isn't as good as before, period. If for no other reason that once you have tinnitus you have the sword of Damocles always overhead …" In a sense, you are illustrating my point. You think of tinnitus as an affliction and yourself in perpetual danger. At one time, I thought of myself as afflicted by tinnitus too, and felt as imperiled as you do. It took me some time to work out how much the content of my thoughts about tinnitus contributed to my feeling overwhelmed by it.

Tinnitus once had an enormous impact on me, but no longer does. My life is every bit as good as before I developed tinnitus, and I'm not unique in that regard. As an added bonus, if I can help a few people who are having a rough time with tinnitus, I consider it an opportunity to convert something that was once very difficult for me into something that may make a positive difference for someone else.

Many people with tinnitus think of tinnitus one way and learn over time to think of it very differently, but not because each has "the kind of t that is minor enough that when a person stops monitoring – they might not hear much." It isn't necessary for tinnitus to be soft and for someone to have minor tinnitus to no longer be aware of it or no longer affected by it when that person becomes aware of it. Time and again, studies have shown the majority of tinnitus sufferers habituate tinnitus regardless of its particular characteristics (i.e., its spectrum, volume, number of sounds, etc.). You say "severe tinnitus isn't just something that people get used to over time". Habituating tinnitus doesn't mean getting "used to" tinnitus. It is more like not caring one way or the other.

You write about the need to find "actual treatments not psychological treatments for a physiological condition…" Actual treatments and very effective management strategies exist.

here2help

I really know that you mean well, but you do have a "conception" of tinnitus vis-a-vis it being a condition that can be lived with and habituated to, obviously you do... 2nd point regarding sword of damocles, etc... if your (or anyone's) tinnitus increased dramatically overnight, im pretty sure you couldn't carry on life as normal (for awhile at least)-- that effects mental health, relationships, etc-- it basically effects a person's whole life, so if anything that reference proves my point that tinnitus is indeed an "affliction"... look I know that your take on tinnitus not being an "affliction" helps you get on with your life, and that's great, but in reality that belief is sort of like a fairy tell, its helpful to you, but that doesn't mean that it is true (in fact, it isn't)

 

[Mpt]

an example of a useful "fairytale" is trt... the heller and bergman study that the "model" is based upon has been discredited by a couple studies since, but Dr. Nagler claimed that these studies validated the earlier study-- they didn't- he simply didn't want to know the truth, or had no interest in it because he so invested in a "fairy tell" that's not true and has been useful to him... my point being "fairy tells" can be useful and even helpful in an individual context, but when everyone in an afflicted group buys into the same or related fairy tells regarding an "affliction" not being as big of a deal as it is.. thats how the tinnitus community is at the point where its at now: tinnitus organizations like the ata fund trt and magnesium studies, most doctors in a clinical setting don't consider it an affliction-- and who can
blame them when even a previous "sufferer" like yourself holds the same ridiculous belief—getting better shouldn't require a person to check their logic and IQ at the door, and the fact that for some sufferers it seems to indeed require that is another support for my position that tinnitus is most definitely an "affliction"

 

[attheedgeofscience]

People can come up with all the anecdotes about tinnitus they want, but I don't sleep with the enemy.

 

[ampumpkin]

It's ok. At the end, you live the life you want to live, as for me, I want to have a good life and I won't let T rule it.

Fuck T.

 

[Zimichael]

Well, I guess I have to add a few cents in here as in a certain way I agree with just about what everyone has been saying, yet also disagree! Ha, ha....Just like T causality theories , no bloody 'conclusive' conclusions!!!

Anyway, I think what is being missed in comments like this, and others: Tinnitus once had an enormous impact on me, but no longer does. My life is every bit as good as before I developed tinnitus, and I'm not unique in that regard. As an added bonus, if I can help a few people who are having a rough time with tinnitus, I consider it an opportunity to convert something that was once very difficult for me into something that may make a positive difference for someone else....are not the facts for some of us. [like Carol's initial response and what @Mpt have contributed]. P.S. @here2help NOT AT ALL PICKING ON YOU OK...promise! Just your well written 'illustrative'
description.

It's not quite as straightforward as "getting one's life back"...If one did, I too would not see an issue either, and just adopt some sensible precautions (like with loud sound situations) and carry on with a full and rich life. Indeed, the T and even H, could be great learning experiences for more compassion, understanding of suffering, more appreciation of Nature perhaps, and so forth.
Shit happens; one freaks out at first; some things adjust; life goes on; it gets good again.

Now look at my profile in case you don't know where I'm coming from. And that is a very, very, very brief history of "me and my T and H". Lots and lots left out.

OK, read it?! Good.....So now you will see that I have T and even H life experience 'out the yazoo' (sorry, non English speakers as 1st. language - that means I have LOT of experience!). Maybe T for longer than anyone else on this forum, or close to it, and multiple stages of "change" with it.

Now I have adapted, habituated, got my life back three times...and twice as an adult. This fourth time, I am not there yet. Maybe I will, but I need a helluva lot less volume and H before I get close to that!
This...Tinnitus once had an enormous impact on me, but no longer does. My life is every bit as good as before I developed tinnitus,...is just plain not accurate in my case. Yeah, the first point is accurate, for each time I got a new volume level. Unfortunately that "enormous impact"part is still a fact. Those latter two points have not occurred at all...Period. I DO NOT have my life back.

Anyone who thinks this is due to my "attitude" and lack of "acceptance", etc., etc. is also just plain wrong. Sorry, but I can guarantee that I do not fight my T and H, I do not curse it, I ignore it, I know what it is, I know how to manage it, I know that spikes that happen when I have protection in (the screaming kid in supermarket, etc.) go down to baseline afterwards, I know what to avoid, I know what helps me stay sane (the high peaks of the Sierra's) and do those things...Those very few things in the outside world that I was so involved in before!!!
Yeah, I read a lot, watch DVDs a lot, educate myself a lot, try and help people online a lot, etc. But that list of things that @carol kane wrote about not being able to do (weddings, restaurants, etc., etc., etc.)...Those are FACTS!
If anyone thinks all those limitations, and far more, do not affect quality of life, then you just have a God given abundance of serotonin!... And I mean that. People do. People far worse off than me. Lost all their limbs...yet they can somehow accept incredible handicaps and find life and enjoyment in that. I marvel at it. Truly.

However after 64 years of me with me, I damn well know I do not have that genetic 'bio-chemical beneficence'. (Neither did my mother or grandmother, nor my daughter - thanks genes!). Just like my T and H, it's a fact. (And of course, I have tried 25 years of meditation, meds ad infinitum, and so forth - to no real avail.

It is what it is. Very Zen huh!.....But very far from "life is good".

Highly reactive T and H are just not in the same camp as "normal T"...They need to go down and cool down before any semblance of "normality with lots of restrictions even" can resume. If they don't go down, I can tell you, it's not at all easy and adaption is very, very slow. I mean look at my 2006 blast up. It took 6 years to get a decent modicum of my life back. I'm well over 1 1/2 years into stage four and it's glacial....even with all the experience and understanding I have. Just fact!

So I have to strongly agree with @Mpt...for people like me IT'S AN AFFLICTION. A physical/physiological abatement or cure is where it is at for me....or maybe another 6 years wait to get some of my life back. Shit. I will be 70 by then and all kinds of other body parts might be creaking and groaning by then! And I would have read ll the books in the library! "I WANNA DANCE AND TRAVEL AND HAVE DINNER PARTIES WITH MORE THAN ONE PERSON (well reminded not to sneeze, or cough suddenly) NOW!"....Wouldn't you too??!!!
And saying that sentence does not mean I am anguishing over not being able to. Just a plain fact. No more charge on saying that than saying it's cooler today, or whatever.

And my point is: There are some us I believe, where "attitudinal shifts" are all very well and nice to espouse, but they help the "affliction" ZERO! In fact, if I was less sure of myself and my own condition, I would say they could even bum me out and be unhelpful! (As in: "Oh dear, I must be a bad person for not being able to change my attitude. I'm a failure." Or whatever...Ha ha = definitely NOT one of my traits!).

Also, my point is, that not all T is the same T...and that IT CAN GO UP MORE THAN GOING BACK TO BASELINE!!! Be careful of that assumption. I have learned that the hard way. yeah it's an exception, not the rule, but how will you know until afterwards?! = Don't be an idiot with sound levels!!! I can ASSURE YOU that my volume levels have gone UP objectively. Because I can remember the things, noises that would mask it or how quiet it had to be to hear it if I listened...or did not listen for it.

OK enough...Final conclusion for people like me and ???? ....

 

[Zimichael]

gahhh...something happened.It posted!

My final conclusion was going to say: WE NEED A CURE!!!

Best to all. Good thread! Zimichael

 

[Mpt]

my heart just broke a little bit reading that zimichael... my wife had never seen me cry in six years of knowing each other until I got tinnitus, I probably cried on a daily basis for the first 3 months of this, I know people like here2help mean well, hell even Dr Nagler helped me some when I was really suffering, but all this talk about your life can be as good as before intrusive tinnitus hurts the cause I think... i have a friends whose mother got tinnitus after going through chemo... she said a cancer diagnosis and chemo were easier to deal with than the tinnitus- sounds like an "affliction" to me, sounds like a hell of alot more than an "affliction" actually

 

[I who love music]

I'm not going to describe my tinnitus. I don't measure it. I only measure my response to it. This way, it stays 'there' and I stay over 'here.'
Friends with tinnitus? Yes. It's part of me. It's steered me away from damaging noises and warned me to take better care of my hearing since 1976. He got tough with me a few times through the years... I should have listened to him but instead I walked right into noisy situations and he was there to scold me.
If I start to measure my friend, he gets loud. It's weird. But I listen to him when I need to and only measure my response to him. He goes his own way, and I go mine. But sure enough, we meet up from time to time. He's kept my H from getting worse, and the distortion in my left ear is no worse since I was a teenager, thanks to his reminders.