Who Can't Habituate or Can't Be Helped By TRT?

[snow86]

Look at Beth's post -- hers is so loud that it can't be masked by a shower, can't be masked by dangerously loud environments, can't be masked by anything! And yet she says that she has a high quality of life, and doesn't hear it 95% of the time. And you're basically telling her that she's lying to us... you're projecting your own experience of your life, onto someone else's experience of their life, and telling them "no, you're wrong, you didn't suffer and your tinnitus is not loud." Is it any wonder she told you to fuck off? I would, too!

Im not saying anything. Just wanted to state my opionion in this thread. You won't finde me arguing with people about what does work and what doesn't in other threads. It's pointless and won't help anyone.

 

[dan]

It's a good job I'm too much of a lady to tell you what I really think because if I wasn't I'd say f**k you.

But you just did...

with or without tossers like you. X

A - Tosser
someone who tosses off - another name for a Wanker (one who suffers from chronic masturbation)
You Tosser - (You Wanker)
A Tosser - (A Wanker)

The reason in my opinion you dont have loud tinnitus is because you yourself confirmed what I suspected-
Your reaction amplified your tinnitus, ergo, it is of psychogenic origin.

At first it was very quiet and I reacted really badly and thought it was impossible to live with, so because of my great fear and reaction, it got louder.

 

[Telis]

Dan, no one can hear each other's tinnitus. I have no doubt some are worse than others. I know mine isn't as bad as what a lot of people have. But I wouldn't presume to know whether someone had it loud or not. I can only take their word for it because they are literally the only person in the world who can hear it.

But as I've said before, the type of argumentation you use is circular. Dr. Nagler asked someone something like, "so no matter what, if someone can climb to the top of a mountain then it's not that high?" And the person responded with "yes".

In other words, if someone can habituate to tinnitus, then it's mild. And everything from that point on gets forced to fit that assumption.

That was me, and I wasn't referring to my own tinnitus, I was making a general comment.

Here were my thoughts at the time: I don't believe that our war vets that receive disability for tinnitus are all either faking this or too weak minded, closed minded, negitive, not driving their own bus, bent on suffering Etc etc etc etc. I truely believe that if a soldier is disabled and the government recognizes them as having a disabilty then this is indeed more than just a reaction. No offence to some of the people here but if you have overcome your tinnitus and thousands of hardened war vets can't do what you have done doesn't something click in your mind? Maybe something isn't adding up? Maybe they just have it that bad and you don't? Maybe? Sure would cross my mind and it did, that is the reason I answered that question the way that I did.

 

[Beth]

TRT is basically a form of subterfuge. And just like all subterfuge, it does work on some people but others are not so easily fooled.

Did you not read Dr Nagler's reply? I agree with everything he says as I feel the same. Why can't you accept that for some people TRT, CBT, the passing of time or whatever, gets them to a place where tinnitus is absolutely not a problem. If the therapists I have seen are fraudulent quacks, the books I've read on tinnitus have been written by idiots and everything on TT is all lies then I really do not give a damn. For me it has worked and obviously for many others it has too so why can't you just be happy for those of us that are no longer suffering and just want to help other people. Will it make you feel better if we're all suffering like you? Have you ever heard of compassion for your fellow human beings? Try to develop a bit of it; your life may improve if you do.

 

[Telis]

I'm not sure whether I didn't explain it well enough or whether you're just too thick to understand but I'll have another go. I get headaches several times a year and I can honestly say that they do not bother me or distress me one little bit and I spend no time at all worrying if they will get worse or become more frequent. They do not impact on my life; they are just there. BUT...if someone offered to wave a magic wand so that I no longer had them I guess I may say, 'OK, they're no big deal but now and again they're a bit annoying so although they don't in any way negatively affect my life, I'll let you wave the wand'. That is how I feel about my tinnitus and because I spent years in total distress and misery, I just appreciate life so much more, even more than I did in my pre tinnitus years and because I enjoy life more now, I can actually think that in a way I'm glad it happened because I did so many things to improve my health, lost weight, got fit, joined a yoga and meditation class and did all sorts of things I would never have done. My life is now SO much better but using the headache analogy, I may (or may not, as I do not feel strongly either way) take the choice of getting rid of it.

If you do not understand this, please ask someone else to explain because I have more important things to do. I wish you well but with your attitude you are going to find things very difficult....lighten up and stop trying to pick arguments when most people are only here to help.

Wow, Calling people names, throwing out personal insults and telling members to f--k off. What wonderful way to help!

 

[dan]

That was me, and I wasn't referring to my own tinnitus, I was making a general comment.

Here were my thoughts at the time: I don't believe that our war vets that receive disability for tinnitus are all either faking this or too weak minded, closed minded, negitive, not driving their own bus, bent on suffering Etc etc etc etc. I truely believe that if a soldier is disabled and the government recognizes them as having a disabilty then this is indeed more than just a reaction. No offence to some of the people here but if you have overcome your tinnitus and thousands of hardened war vets can't do what you have done doesn't something click in your mind? Maybe something isn't adding up? Maybe they just have it that bad and you don't? Maybe? Sure would cross my mind and it did, that is the reason I answered that question the way that I did.

Telis, everybody on this forum, would be eligible for the VA 10% tinnitus disability, as long as it was service related. Many vets collect this 10% regardless of how badly it affects them.
This is why the VA cannot make it a 90% disability...They just dont have the equipment or the will to do extensive T matching and qeeg scans.

Most people on this forum under ideal testing would get 10% compensation.
The other few would get the 100%.

 

[Beth]

Wow, Calling people names, throwing out personal insults and telling members to f--k off. What wonderful way to help!

Where in my post is the word 'off'? It was said with tongue in cheek though I do get annoyed with people who tell me that I cannot be OK when I spent many year in total misery and just want to stick around on here to let other people know that life can be good again. tinnitusufferer seems to want to believe that it cannot be done and it is disheartening for newbies to read his negative posts. I know how much I absorbed every hopeful and helpful comment and how all the negative posts frightened me so I do not understand why he insists in proving that people like me and Dr Nagler and not OK or we have been conned or fooled into believing we're OK. If I have been fooled then so be it but I will say yet again that I have very loud tinnitus which I choose not to listen to and I'm not aware of it for most of the time and though I was suicidal I am now very happy with life. I don't care how it happened, I just want new sufferers to know that it CAN happen and that they should have hope. Give me a break.

 

[linearb]

Wow, Calling people names, throwing out personal insults and telling members to f--k off. What wonderful way to help!

You have to understand how offensive some of the posts on here can be. At one point someone who shall remain nameless told me that I hadn't actually suffered and that I wasn't in pain when I spent weeks barely sleeping and tearfully telling my wife that I needed to kill myself.

I am all for compassion and empathy, and I don't think that someone else being inflammatory towards me because they are in too much pain to realize how selfish they are being, is a good reason to be inflammatory back. I also don't think escalation is ever helpful or useful. The thing is, we're all biased by our own experiences. A lot of the thinking that I see on here that I label "toxic" and "unhelpful", is thinking that I myself spent months or years engaging in. I believe that was harmful to me. I believe that clinging on to that thinking as stubbornly as I did for a long time, was counterproductive to my having a good life. So, that's an incredibly emotional and difficult transition to go through, and when I see people who I believe are victims of the same thing, it's very difficult for me to stay composed and keep saying the same things over and over again politely -- especially when I'm not getting a modicum of politeness or concession in return.

 

[Sleaford Mod]

If I was a newbie, I would find Beth's post number 81 in this thread both inspirational and informative.

Several years ago, when I first developed tinnitus, I remember reading a similar post in another, similarly contentious thread in a different forum. There, someone described their tinnitus as 'thunderous' and detectable even in close proximity to the Niagara falls.

The conclusion that I drew from that post was straightforward, namely, that it is possible to habituate loud tinnitus.

I don't want to indulge in a clash of subjectivities, though. Been there and got the t-shirt.

All I want to add is that in my particular case, the tinnitus that I personally still experience as very loud and piercing is something that now troubles me far less.

 

[NiNyu]

@Dr. Nagler psychology for T is as good as any placebo. You know, it's like selling air in bottles.

It's simply impossible to treat a physical ailment that won't give you any breaks. Furthermore, psychology was never meant for that to begin with. Rather it's being misused for many things and T is just one of them. But when there's zero it can certainly be a pot of gold.


Sorry @Beth but you dug your own hole. You stated that, '(about 95%) I have silence because when I'm not thinking about it it's not there.' Moreover, you believe that great fear and reaction makes T louder even though yours is, 'very quiet'. That's all *NOT* killer reactive T. Killer reactive T doesn't give a sh*t about your reaction rather every little sound make it literally explode beyond sanity.

If you are genuinely capable to perceive **silence** then your issue never was T but your mindset like they use to say in psychology. Nevertheless, I'm happy for you. Most of us can't achieve that.

 

[linearb]

@Dr. Nagler psychology for T is as good as any placebo. You know, it's like selling air in bottles.

It's simply impossible to treat a physical ailment that won't give you any breaks. Furthermore, psychology was never meant for that to begin with. Rather it's being misused for many things and T is just one of them. But when there's zero it can certainly be a pot of gold.

Again, and I don't have the patience to say this too many more times, but there is an absolute wealth of neurological imaging studies which support the basic idea that even very, very severe, very, very protracted chronic pain, is deeply entangled with conscious thought, and that the way the brain plasticizes in response to such pain over time, is modulated to some extent by psychological processes.

Sorry @Beth but you dug your own hole. You stated that, '(about 95%) I have silence because when I'm not thinking about it it's not there.' Moreover, you believe that great fear and reaction makes T louder even though yours is, 'very quiet'. That's all *NOT* killer reactive T. Killer reactive T doesn't give a sh*t about your reaction rather every little sound make it literally explode beyond sanity.

Again you're failing to comprehend that some people who have had "killer reactive" T have subsequently come to the conclusion that the difference between "killer reactive" T and T which can be lived with, was based on the response they were having to it.

The thing that is frustrating, I think, is that you are very new to this condition. Your experience of T will change over time whether you want it to or not, and whether or not you do anything to facilitate that process. The brain changes over time. It is not escapable.

If you are genuinely capable to perceive **silence** then your issue never was T but your mindset like they use to say in psychology. Nevertheless, I'm happy for you. Most of us can't achieve that.

You are not comprehending what @Beth meant by "silence". She is not saying that the sound is not there.

I have no idea what's going on with you, you have severe hearing loss, you've experienced a shitton of trauma, and your brain is doing all kinds of nasty things and playing tricks on you, as brains do when subjected to massive trauma. Again, and with compassion, it seems like those of us who have been dealing with this shit for years, look at posts like the one you've made here and think "uh huh, here's someone who's in a ton of pain, who has let their ego become an obstacle to their own path towards less suffering. I have also experienced that, and I hope they are able to find a path out of it".

You can find a way to hear exactly the sounds you're hearing now, and be less bothered by them. And, probably, once you figure out how to do that even a little bit, then a lightbulb will go off and it will become an exponential process. That doesn't mean this will ever "go away". It also doesn't mean that your quality of life will necessarily be the same as it would have been if this had never happened to you, and I am sorry for that, and so is everyone else. Bodies break. It's a fact of life. Finding a way to accept your situation instead of fighting it, is pretty much a requirement for any kind of "healing".

All I am trying to suggest, is that emotions and thoughts are temporary, and the way you feel about your situation will change over time, even if the situation itself does not.

Good luck.

 

[tinnitussufferer]

is TRT just CBT applied to tinnitus? and if you had chronic pain instead of tinnitus would the same method work to provide relief? could there be a level of suffering that cannot be relieved with TRT? Even painkillers become less effective as the level of pain goes up so why should we expect TRT to be a universal solution?

 

[linearb]

is TRT just CBT applied to tinnitus?

No. It's a combination of cognitive practices and specific audio therapies based on a particular neurological model of how some audiologists believe that auditory perception works. The audio is not masking, it is a specific protocol based on this model which is supposed to have a specific physiological effect on the way the brain's auditory system interacts with the limbic system.

and if you had chronic pain instead of tinnitus would the same method work to provide relief?

There is a wealth of imaging data which shows how cognitive practices interact with severe, chronic, painful conditions, in many cases showing both a positive outcome on self-reported distress levels, as well as showing specific structural changes in the brain. I have linked you, personally, to specific research papers about this, on more than one occasion.

could there be a level of suffering that cannot be relieved with TRT? Even painkillers become less effective as the level of pain goes up so why should we expect TRT to be a universal solution?

Painkillers are designed to mask a particular symptom, and like all drugs, create downregulation of the affected ligands over time. What that means is that if you take 10mg of oxycodone right now, it will bind to many opioid receptor sites, and exert a strong action there. If you take that same dose of 10mg oxycodone every day for a period of time, the brain will "switch off" some of those receptor sites. This is what downregulation is, and this is why drugs in general have a diminishing effect over time.

There is really no comparison between the effect of a drug and the effect of a cognitive practice, because the cognitive practice is not trying to directly interact with the symptom on a physical level.

The question of whether the TRT audio protocol might exert a diminishing return over time is interesting; as far as I know, there have not been any imaging studies of TRT with before-and-after, so it's hard to say. It doesn't seem likely to me, especially given that people for whom it seems to work generally report using the audio for a period of time and then "not needing it" anymore... but I'd have to defer to someone like @Dr. Nagler on this, since I'm just an armchair neurologist.

 

[Street Spirit]

Personally, I think reactive tinnitus and hyperacusis can destroy your life far more than normal tinnitus, as that's maskable...But what do you do when white noise generators are useless, when fans are making your tinnitus compete with it? I'm telling you, it's hell. If someone says it's your reaction they can fudge off, my reaction is, if you fat cats got off your asses and sorted this out, we wouldn't be in this mess! Tinnitus isn't that hard to treat! We knew about the role KV3 modulators played in tinnitus for ages! And I mean ages! So you know who's fault it is? The ATA, the BTA and the blooming medical community! The BTA are still going on about the model of tinnitus!? We know it's in the brain and we know the KV3 channels have a role, so spend some dosh and help treat us...Sorry, rant over.

Yep. Hyperacusis and reactive tinnitus is a whole different level of hell that most people on this board have no clue about...and they are never going to get it and therefore it's USELESS arguing about it.

and yes I have been ridiculed or treated unkindly numerous times..what a laugh!

 

[linearb]

Yep. Hyperacusis and reactive tinnitus is a whole different level of hell that most people on this board have no clue about...and they are never going to get it and therefore it's USELESS arguing about it.

I don't really think anyone disagrees that there's a whole spectrum of shittiness, and that some people's shitty ear problems, are more shitty than others.

That said, do you disagree that the way people consciously choose to respond to the shittiness in their life, can have a significant impact on how functional they are and how much joy they are able to find in life?

I think that's the real sticking point here; some people seem unable or unwilling to accept that they have literally any control at all over how their shitty ear problems mess up their life. I strongly believe that engaging in that kind of thinking leads to a state of learned helplessness, which has negative physiological effects on how the limbic system responds to day-to-day perception...

 

[Beth]

@Dr. Nagler psychology for T is as good as any placebo. You know, it's like selling air in bottles.

It's simply impossible to treat a physical ailment that won't give you any breaks. Furthermore, psychology was never meant for that to begin with. Rather it's being misused for many things and T is just one of them. But when there's zero it can certainly be a pot of gold.


Sorry @Beth but you dug your own hole. You stated that, '(about 95%) I have silence because when I'm not thinking about it it's not there.' Moreover, you believe that great fear and reaction makes T louder even though yours is, 'very quiet'. That's all *NOT* killer reactive T. Killer reactive T doesn't give a sh*t about your reaction rather every little sound make it literally explode beyond sanity.

If you are genuinely capable to perceive **silence** then your issue never was T but your mindset like they use to say in psychology. Nevertheless, I'm happy for you. Most of us can't achieve that.

I apologize if I said my tinnitus is very quiet (could you point out where I said that?) because I thought I had been saying all along that apart from the very beginning of my tinnitus journey, it is extremely loud. I reacted very badly at first to what was fairly quiet tinnitus because it absolutely terrified me. I continued to react badly for years and therefore the volume increased. For the last 5 years it has been loud enough to prevent me from being able to hear clearly when using a phone and there have never been any circumstances or situations where I could say that I couldn't hear it. I have been busy in the garden for a couple of hours today and was not aware of the sound at all but if I thought about my tinnitus even for a split second, I would instantly be aware of it at its usual incredibly loud volume. I am aware now because I am typing this but in a while I will be preparing a meal and I know that within less than a minute it will have gone from my awareness again but the volume NEVER changes. I hope I have made it clear because for some reason, certain people seem intent on telling me that I can't have loud tinnitus if I no longer react to it and all I want to do (as I have said many times before) is let people know that there is hope and that they can be OK and live perfectly happy fulfilled lives even though they have loud tinnitus. Can someone please explain this better than I am obviously doing......!? I may have a break from this, it is getting very tedious. All I want to do is to give hope to other people and I feel I have to defend myself all the time.

Again, and I don't have the patience to say this too many more times, but there is an absolute wealth of neurological imaging studies which support the basic idea that even very, very severe, very, very protracted chronic pain, is deeply entangled with conscious thought, and that the way the brain plasticizes in response to such pain over time, is modulated to some extent by psychological processes.



Again you're failing to comprehend that some people who have had "killer reactive" T have subsequently come to the conclusion that the difference between "killer reactive" T and T which can be lived with, was based on the response they were having to it.

The thing that is frustrating, I think, is that you are very new to this condition. Your experience of T will change over time whether you want it to or not, and whether or not you do anything to facilitate that process. The brain changes over time. It is not escapable.


You are not comprehending what @Beth meant by "silence". She is not saying that the sound is not there.

I have no idea what's going on with you, you have severe hearing loss, you've experienced a shitton of trauma, and your brain is doing all kinds of nasty things and playing tricks on you, as brains do when subjected to massive trauma. Again, and with compassion, it seems like those of us who have been dealing with this shit for years, look at posts like the one you've made here and think "uh huh, here's someone who's in a ton of pain, who has let their ego become an obstacle to their own path towards less suffering. I have also experienced that, and I hope they are able to find a path out of it".

You can find a way to hear exactly the sounds you're hearing now, and be less bothered by them. And, probably, once you figure out how to do that even a little bit, then a lightbulb will go off and it will become an exponential process. That doesn't mean this will ever "go away". It also doesn't mean that your quality of life will necessarily be the same as it would have been if this had never happened to you, and I am sorry for that, and so is everyone else. Bodies break. It's a fact of life. Finding a way to accept your situation instead of fighting it, is pretty much a requirement for any kind of "healing".

All I am trying to suggest, is that emotions and thoughts are temporary, and the way you feel about your situation will change over time, even if the situation itself does not.

Good luck.

Couldn't have put it better myself! Will you do my replies please?!!

 

[dan]

I apologize if I said my tinnitus is very quiet (could you point out where I said that?) because I thought I had been saying all along that apart from the very beginning of my tinnitus journey, it is extremely loud. I reacted very badly at first to what was fairly quiet tinnitus because it absolutely terrified me. I continued to react badly for years and therefore the volume increased. For the last 5 years it has been loud enough to prevent me from being able to hear clearly when using a phone and there have never been any circumstances or situations where I could say that I couldn't hear it. I have been busy in the garden for a couple of hours today and was not aware of the sound at all but if I thought about my tinnitus even for a split second, I would instantly be aware of it at its usual incredibly loud volume. I am aware now because I am typing this but in a while I will be preparing a meal and I know that within less than a minute it will have gone from my awareness again but the volume NEVER changes. I hope I have made it clear because for some reason, certain people seem intent on telling me that I can't have loud tinnitus if I no longer react to it and all I want to do (as I have said many times before) is let people know that there is hope and that they can be OK and live perfectly happy fulfilled lives even though they have loud tinnitus. Can someone please explain this better than I am obviously doing......!? I may have a break from this, it is getting very tedious. All I want to do is to give hope to other people and I feel I have to defend myself all the time.

well from what you say, you must be superhuman to be able to tune out an ambulance siren at 50 feet, cause thats what it takes to drown out conversation .. kudos to you.

 

[linearb]

well from what you say, you must be superhuman to be able to tune out an ambulance siren at 50 feet, cause thats what it takes to drown out conversation .. kudos to you.

no, no, no, the whole point is that she's not superhuman, and that thinking she is, is directly counterproductive.

 

[dan]

no, no, no, the whole point is that she's not superhuman, and that thinking she is, is directly counterproductive.

Nah, she's superhuman, cause like if you can tune out a loud noise that even makes hearing difficult, the that is SUPERHUMAN.
Its counterproductive to live a lie.

 

[Street Spirit]

I don't really think anyone disagrees that there's a whole spectrum of shittiness, and that some people's shitty ear problems, are more shitty than others.

That said, do you disagree that the way people consciously choose to respond to the shittiness in their life, can have a significant impact on how functional they are and how much joy they are able to find in life?

I think that's the real sticking point here; some people seem unable or unwilling to accept that they have literally any control at all over how their shitty ear problems mess up their life. I strongly believe that engaging in that kind of thinking leads to a state of learned helplessness, which has negative physiological effects on how the limbic system responds to day-to-day perception...

It's not just shitty ears linearb it's painful, life changing and horrid. My whole family has been affected by my illness and hyperacusis.

Anyways I live with chronic pain PLUS t and h, yes I do feel reaction plays a part, certainly, but I can also tell you the pain wears you down after awhile. .it just does. .and maybe some people just don't have the energy to think positive thoughts or what have you after a while..

I just finished a CBT/ mindfulness course and it was great regarding reaction but I and others in the group with chronic pain felt it was missing something. .I mean I am limited by my condition. .and I don't expect to improve...though I try to make the best of my situation because that is how I am..the mindfulness was more useful than CBT imo..

I don't particularly find that those with just tinnitus are limited like those with H and reactive T are (or severe T) it's absolutely draining..

It's all very individual...like I said, I don't wish to argue this..I am in pain and frankly fed up with my shitty ears!

 

[tinnitussufferer]

I can also tell you the pain wears you down after awhile. .it just does. .and maybe people just don't have the energy to think positive thoughts or what have you after a while...

yes it does wear you down. Tinnitus and pain are not psychological. It has nothing to do with your thinking. we have pain receptors all over our body which are hard wired into our brains. We cannot interfere with that just by thinking. Think of the power that music has on our emotions. you cant achieve that powerful feeling just by thinking. Similarly, horrible noises like tinnitus can also cause a strong emotional response which thinking has no effect on.

 

[Sleaford Mod]

Anyways I live with chronic pain PLUS t and h, yes I do feel reaction plays a part, certainly, but I can also tell you the pain wears you down after awhile. .it just does. .and maybe some people just don't have the energy to think positive thoughts or what have you after a while..

I just finished a CBT/ mindfulness course and it was great regarding reaction but I and others in the group with chronic pain felt it was missing something.

Lynn, this section of your last post made me think of the late Darlene Cohen, and in particular one of her articles. Here's an extract from it:

"I've often heard people who have to live with an extraordinary amount of anguish or physical pain in their life say, "I know it would be better if I could accept my situation, and I keep trying and trying, but I can't! I can't accept it; I hate it!" My own feelings about this is --

I think many of us have a skewed idea of what "accepting" a catastrophic situation actually is. If you have the idea that coping well should look something like the proverbial "grace under fire," then you think you should summon the sheer grit to plaster a big cosmic grin on your face, no matter what horrors are being visited upon you. I dont think this is helpful. Actually, just the notion of "accepting" pain sounds to me too passive to accurately describe the process of successfully dealing with chronic pain or mental anguish that lasts for a long period of time. Because It fails to convey the tremendous amount of energy and courage it takes to accept physical pain as part of your life. Truly accepting pain is not at all like passive resignation. Rather, it is active engagement with life in its most intimate sense. It is meeting, dancing with, raging at, turning toward.."

I don't have hyperacusis. Nor am I dealing with chronic pain. But I found Cohen's writing (she suffered greatly with rheumatoid arthritis) truly down-to-earth and helpful when I was struggling with tinnitus.

Zazen and Mindfulness are pretty much the same thing as far as I can tell. So if her words resonate with you at all, there's more where that came from:

http://www.darlenecohen.net/welcome/skills.html

 

[awbw8]

Whaaaaaaat is the problem here. Come on folks. Is it hurting you if someone says they habituated to something horrible? Is it hurting you if someone says their tinnitus is the worst ever and nothing can help? No. Just let it be and offer support when it is requested, you can't force help on someone. If someone says they're feeling better, don't down-play their achievement. If you don't have something kind to say or can't find a way to discuss something respectfully regarding their success, don't say anything about it. It's a support forum, let's try to be nice and if we can see someone is suffering too horribly to do that right now, I think we can all try to be compassionate towards most of that.

As to suffering:

"Nothing that grieves us can be called little: by the eternal laws of proportion a child's loss of a doll and a king's loss of a crown are events of the same size."
- our friend Mark Twain

There is nothing at all to be gained from comparing one person's suffering with another person's suffering in a hostile manner. It helps no one, it only causes more offense. We just need to be here for one another and be as open and kind as possible.

I hope everyone here finds some measure of comfort soon. Happy news though, it seems like someone had a good experience with autophony (sp?) - 75% reduction while on the trial I'll take a little victory for anyone *cheers!*

 

[MattK]

Hmmm... Sometimes I think the problem is that some people have problems--obstacles--to habituation that have nothing to do with tinnitus.

Based on what I've gathered from people over my time here, just about all of us have tinnitus. But, some people in addition to tinnitus, have other ailments. Some people have different types of ear disorders like hyperacusis, distortion, Eustachian tube dysfunction, etc. and some people seem to be prone to anxiety, depression, etc. some people have other physical ailments... And many have several combinations of these things. I can see why life sucks for many.

I hope I'm not about to sound cold. But this is a tinnitus support board. I realize a lot of the members here need support for a lot more than tinnitus and I hope those who need it get the support.

But I suspect that some of the problem with habituation has to do with some have obstacles other than just tinnitus itself. And if that's the case then maybe habituation truly is impossible until those obstacles are removed... If they can be.

 

[Beth]

well from what you say, you must be superhuman to be able to tune out an ambulance siren at 50 feet, cause thats what it takes to drown out conversation .. kudos to you.

If you were trying to talk to someone just a few feet away and somebody else came up to you and made a loud shusssshing sound in your ear, you would have difficulty in hearing what the other person was saying. It does not take an ambulance siren level of noise to make it difficult to hear phone conversations or someone nearby talking quietly. I am not superhuman. I am a perfectly average human being that unfortunately gets angry (and yes, sometimes rude, so I apologize) because when I am told that I couldn't have loud or annoying tinnitus I remember what my life was like.

I remember years of not wanting to live. I remember trips to the hospital begging for sleeping pills and planning that if they gave me a prescription I'd save them up till I had enough to end my life. I remember thinking that I'd write a letter to everyone in my family and explain how it was living in Hell for years and seeing no way out and hope they'd understand that I'd had enough. So please tell me, what is it you want me to say? That I have very quiet tinnitus and I've made up all my posts? I don't know what you want but I feel very sorry for you because I know what reactive tinnitus is like; I've screamed, 'I could kill you!!' at my poor husband because he was trying to put a plate away very carefully and dropped it. Please explain why you don't believe/understand what I'm saying and hopefully some kind person on this forum will help you because I'm done with this.

I always hoped I'd get to the stage where I was OK and for years did not ever think I would and now that I am OK and can help others just by telling my story and giving a bit of hope, I get people like you who seem bent on proving that loud, reactive permanent tinnitus can not be habituated and newbies to the forum or people that have been suffering for years may read your posts and just feel worse so why are you doing this?

Please do me a favour and leave me alone. I respect your opinion but you can keep it and leave me with mine. You believe what you want and enjoy wallowing in your pain and self pity and the Hell your tinnitus is giving you because with your attitude you will be stuck with it for a very long time. Sit around suffering and finding people to pick a fight with while you wait for the magic pill to be invented that will stop all your internal noises; the only pill that will work will probably have death as a site effect because most of the noises people hear are the perfectly safe, harmless internal noises caused by our nervous system, blood flow, muscle movement etc that are massively amplified by our brains because we are in a very stressful state, so how can any drug stop that? It has to be that we change our attitude because we cannot change anything else. I agree there are cases where something physical is causing the noise and there may be remedies for that but it is rare. So if you do not believe me, that's your right but if my story has helped one person I guess I should be grateful for that as I know how much every success story meant to me when I was suffering. Please leave me alone and find some other outlet for your problems.

 

[Street Spirit]

Lynn, this section of your last post made me think of the late Darlene Cohen, and in particular one of her articles. Here's an extract from it:

"I've often heard people who have to live with an extraordinary amount of anguish or physical pain in their life say, "I know it would be better if I could accept my situation, and I keep trying and trying, but I can't! I can't accept it; I hate it!" My own feelings about this is --

I think many of us have a skewed idea of what "accepting" a catastrophic situation actually is. If you have the idea that coping well should look something like the proverbial "grace under fire," then you think you should summon the sheer grit to plaster a big cosmic grin on your face, no matter what horrors are being visited upon you. I dont think this is helpful. Actually, just the notion of "accepting" pain sounds to me too passive to accurately describe the process of successfully dealing with chronic pain or mental anguish that lasts for a long period of time. Because It fails to convey the tremendous amount of energy and courage it takes to accept physical pain as part of your life. Truly accepting pain is not at all like passive resignation. Rather, it is active engagement with life in its most intimate sense. It is meeting, dancing with, raging at, turning toward.."

I don't have hyperacusis. Nor am I dealing with chronic pain. But I found Cohen's writing (she suffered greatly with rheumatoid arthritis) truly down-to-earth and helpful when I was struggling with tinnitus.

Zazen and Mindfulness are pretty much the same thing as far as I can tell. So if her words resonate with you at all, there's more where that came from:

http://www.darlenecohen.net/welcome/skills.html

Thank you so much! I am indeed intrigued

 

[dan]

If you were trying to talk to someone just a few feet away and somebody else came up to you and made a loud shusssshing sound in your ear, you would have difficulty in hearing what the other person was saying. It does not take an ambulance siren level of noise to make it difficult to hear phone conversations or someone nearby talking quietly. I am not superhuman. I am a perfectly average human being that unfortunately gets angry (and yes, sometimes rude, so I apologize) because when I am told that I couldn't have loud or annoying tinnitus I remember what my life was like.

I remember years of not wanting to live. I remember trips to the hospital begging for sleeping pills and planning that if they gave me a prescription I'd save them up till I had enough to end my life. I remember thinking that I'd write a letter to everyone in my family and explain how it was living in Hell for years and seeing no way out and hope they'd understand that I'd had enough. So please tell me, what is it you want me to say? That I have very quiet tinnitus and I've made up all my posts? I don't know what you want but I feel very sorry for you because I know what reactive tinnitus is like; I've screamed, 'I could kill you!!' at my poor husband because he was trying to put a plate away very carefully and dropped it. Please explain why you don't believe/understand what I'm saying and hopefully some kind person on this forum will help you because I'm done with this.

I always hoped I'd get to the stage where I was OK and for years did not ever think I would and now that I am OK and can help others just by telling my story and giving a bit of hope, I get people like you who seem bent on proving that loud, reactive permanent tinnitus can not be habituated and newbies to the forum or people that have been suffering for years may read your posts and just feel worse so why are you doing this?

Please do me a favour and leave me alone. I respect your opinion but you can keep it and leave me with mine. You believe what you want and enjoy wallowing in your pain and self pity and the Hell your tinnitus is giving you because with your attitude you will be stuck with it for a very long time. Sit around suffering and finding people to pick a fight with while you wait for the magic pill to be invented that will stop all your internal noises; the only pill that will work will probably have death as a site effect because most of the noises people hear are the perfectly safe, harmless internal noises caused by our nervous system, blood flow, muscle movement etc that are massively amplified by our brains because we are in a very stressful state, so how can any drug stop that? It has to be that we change our attitude because we cannot change anything else. I agree there are cases where something physical is causing the noise and there may be remedies for that but it is rare. So if you do not believe me, that's your right but if my story has helped one person I guess I should be grateful for that as I know how much every success story meant to me when I was suffering. Please leave me alone and find some other outlet for your problems.

I wont leave anybody alone if they say that loud T is possible to tune out and not perceive. Nothing personal against you, but I can speak my mind as long as I am not insulting. I dont want scientists to think we who suffer are crazy or mental.
So yes, I think your T was mild but you made it loud.

 

[Markku]

I have to say my own piece after @awbw8's excellent post above... which I wholeheartedly agree with.

I know some (a relatively small group, but we equally appreciate all of our members) of our members who suffer from severe, debilitating tinnitus think that all the positive habituation talk can be detrimental to raising awareness about debilitating tinnitus.

That isn't true at all. Look at what Team Trobalt has done and we will continue that work.

Team Trobalt's work contains, in part, of the following:

1. Liaising with CEOs of otology pharmas
2. Tracking down clinical trial information
3. Asking relevant questions of researchers and presenting it in public
4. Compiling clinical trial data

We also have other Teams, which you can learn more about from here: https://www.tinnitustalk.com/threads/tinnitus-talk-teams-—-awareness-research-tech-trobalt.7694/

I would dare to say that Tinnitus Talk and its Team Trobalt, fully owing to @attheedgeofscience's and other team members' relentless pursuit of our goals, has achieved quite a bit more thus far than your regular support forum (for any condition).

I'm suffering greatly myself. My tinnitus got significantly louder last year. I remain skeptical as far as habituation in my case goes, however I do not come to the forum and play down others. If someone says they have very loud tinnitus and they have habituated, I feel happy for them. I do not question their loudness. I for sure won't go and and claim that it's impossible to habituate to loud tinnitus, hey, you must be lying.

What I sometimes may think in my head and what I actually write down and post are two different things.

Why would I want to make someone feel like crap?

I understand that some of you feel offended when people with any kind of tinnitus say that they think tinnitus loudness is secondary, reaction primary.

But, please, for the sake of our atmosphere, try and understand that 99% of time these people do not mean harm. They want to be of help.

If you remain convinced that habituation won't work for you and you feel the urge to debate it, even accuse some people of not having loud tinnitus if they have habituated, please do not participate in these support threads. Clearly they aren't for you.

However, those who believe habituation is a solution for most, I urge you not to push your views on people you know are not receptive to the idea, or even vehemently disagree with it.

Now this is easier said than done. People have discussions. Topics get derailed, debates are born.

I have to confess that we, the staff of Tinnitus Talk, think we have been too lenient in our moderating lately. The atmosphere in some of these threads have without a doubt turned toxic and uninviting to newbies. We are currently discussing a new policy with which we hope to remove or at least cut down these issues.

Remember, this is a place of support. Some of the negativity I've seen in recent months has been disheartening. This is coming from me, who has been here from day 1, and who thought that the first 3 years or so were more or less disruption free. We had a fabulous atmosphere where anyone and everyone could feel safe.

I want to get us back to there, and I promise the staff will not stop trying.

 

[dan]

Thanks for clearing that up @Markku , I honestly thought that all this postive habituate to any tin itus talk, can be detrimental to raising awareness. That is the only reason I seem combative to these stories of miraculous recoveries.
I will try to be more reserved knowing Team Trobalt is on top of things.

 

[Markku]

Thanks for clearing that up @Markku , I honestly thought that all this postive habituate to any tin itus talk, can be detrimental to raising awareness. That is the only reason I seem combative to these stories of miraculous recoveries.
I will try to be more reserved knowing Team Trobalt is on top of things.

Some people researching the effect tinnitus has on people finds Tinnitus Talk and goes through the Support section. They find positive stories, how people have habituated and how advice is exchanged on how to habituate. Now you may argue that this influences funding or general research decisions.

I believe there is next to zero chance of that negatively affecting future research projects and so on.

It is widely known how common tinnitus is. The percentage of people suffering from debilitating tinnitus is between 0.5% and 1%. Hearing Health Foundation states that 0.5% of people have severe, debilitating tinnitus. A recent British survey indicated that around 1% of people have severe, occasionally debilitating tinnitus.

There is very little need to make it one's mission to let people know how severe tinnitus may, in one's opinion, be impossible to habituate to, much less accuse someone of lying if they say they have habituated to such tinnitus.

If people really want to make a difference and make sure we're all heard, we suggest they join our Team Awareness and start working toward our goals there. Now that is much more likely to have a positive effect than some of those "habituation isn't the be-all and end-all" shouts.

Thanks dan for your understanding & co-operation.