The Problem: Tinnitus or Reaction?

Elsewhere @R. David posted [in part]:

And i cannot stress this enough. My tinnitus was never the problem. My problem was my reaction to the tinnitus.

............

I happen to agree with R. David wholeheartedly, but the concept can be confusing to newbies (and to some not-so-newbies!) so I thought I’d take a few minutes to explore it.

Is the problem tinnitus, or is the problem the reaction?

In my opinion the difficulty lies not only in that there are good arguments on both sides of the coin, but also in the fact that both positions can actually be proven!

Those who feel that the problem is tinnitus have a very easy proof. They will say that without tinnitus there would be nothing to react to! And they’d be 100% correct. The real world challenge for those folks lies in finding a way to eliminate or at least mitigate their tinnitus. And that is a mighty challenge indeed. Others may have a different experience, but to the best of my knowledge, there has yet to be found a way to predictably lessen or eliminate tinnitus. I know I certainly can’t do a thing about mine!

Those who feel that the problem is reaction also have an easy proof. They can point to the fact that the reason folks with tinnitus seek help is that their ears are ringing and in some way or another it makes them feel bad. “Feeling bad” can run the entire gamut - from being mildly curious and concerned about its significance to being totally incapacitated by it. Well, if people did not react to their tinnitus, they wouldn’t feel bad. In fact they couldn’t possibly feel bad – because feeling bad is a reaction! Indeed, I personally know of a number of folks with very soft tinnitus who can barely function (i.e., they have a huge problem) and a number of folks with very loud tinnitus who are not bothered by it in the least (i.e., they have no problem at all.) The challenge for those in the “reaction” camp lies in the fact that you cannot simply will yourself not to react to your tinnitus. It requires time, and it requires strategy.

So who’s right – those who claim that the problem is tinnitus, or those who claim the problem is reaction? Since both positions can be proven, I do not see this as an issue of who is right and who is wrong. Rather, it is a question of what you believe and what you can do about it.

Here's to finding lasting meaningful relief - whatever path you take!

Dr. Stephen Nagler

 

Hello Dr. Nagler,
I am happy that you are back. For me you were an invaluable help during my suffering.
Things are a little bit better in the meantime, although still difficult (on a scale 0-10, anxiety and depression went down from a 10 to a 5-6). Still a way to go for me.

I totally agree it is much about reaction. I live my life as I would without T (only have to to some adjustments regarding work). I need pushing myself for the one or other thing, but I always do it.

As you went through the same suffering long time ago, you can imagine how difficult it is especially in the morning when waking up with this ugly sound and you need to challenge another day Or when my somatic T buzzes when I am chewing. Not easy not reacting to it and wishing T to hell.

I try not masking (only high-pitched cricket sounds help), but cannot go a complete day without any masking.
I keep busy (but avoiding stress as good as possible) with work, hobbies etc.

Although loudness should not be an issue, last week I had two days with lower T (first time after months). It was much easier to ignore (although I could hear it all the time). But it didn't annoy me that much. But my baseline T is not ignorable. So I continue living my life (this is my strategy) and hope for time as a healer.

Thanks again for being back helping us.
Greetings from Germany.
Martin

 

Thank you for the kind words, Martin.

As I recall a number of folks here reached out to you to try to help. I am glad to have been a part of that effort.

Dr. Stephen Nagler

 

I agree with Martin, glad you are back. Your posts have helped calm me down and re-think my coping skills.
I often go back and read the older posts to stay on track.
Thank you,

 

Welcome back, Dr. Nagler. You have been a great help to a lot of tinnitus sufferers including myself. I wouldn't be where I am now without your tremendous knowledge about tinnitus which you share so generously to us newbies back then. Your presence will be much welcomed by the many current members as well as new tinnitus sufferers to come.

 

Welcome back Dr. Nagler. I'm new to these parts but I found a lot of your archived posts to be extremely helpful. I look forward to reading more of what you have to say.

I just started TRT recently and I'm working on changing the negative mindset associated with tinnitus. As much as I dislike it I still feel like I'd be moderately unhappy even if the tinnitus was gone. I think a lot of people around here would say the same thing.

That said, I feel I've made lots of progress with the TRT to the point where even when my tinnitus screams at me I don't react to it as negatively as I used to. I'm not quite all the way there yet but even when it doesn't bother me to hear it I find myself thinking "man, I really wish this wasn't here."

 

Welcome back, Sir. Glad to see you back on TT. I have always appreciated your uplifting and quick responses to our queries. Your support in my initial dark days has helped me tremendously to cope with this..your knowledge and experience has benefitted to us newbies and many others and we thank you for that Sir.

 

Dr. Nagler, so happy to see you back. Belive time is a quite important factor to point out here. For the first 6-12 month i the "working on the reaction" path was just an imagine to me. The only thing that i could think of was to get rid of the alien some how. As time passed and my limbic system started to cool down. My focus slowly turned from try to solve the problem to try to live with the problem. I am not there yet but for every day that goes I am more convinced that i can handle this by not reacting to it. As you all know this is not an easy path but as i see it there is no real alternatives for the moment....

 

......and again, welcome back Dr Nagler.

 

@Dr. Nagler - Thanks for the words of encouragement. You mentioned that learning to manage ones reaction to tinnitus takes time and a "strategy." I've also read in some of your previous posts that you think it's important recognize when a strategy isn't working and to change it. I am wondering if you have any general guidelines to help your patients realize when their strategies aren't working, and how to select a new strategy.

In my own situation, I've had T for over 5 months now and have been employing, what I like to call, the "do nothing" or "fake it till you make it" strategy. I've simply tried to move on with my life as if nothing is wrong. I go to work, keep busy, exercise, go out with friends, etc. etc. etc. Most people probably don't realize that anything is bothering me. The problem is that I feel like I've plateaued. Although I have good days were the T doesn't bother me too much, I still have plenty of days that I am deeply upset by it. Even on the good days, I think about it all the time. I've been in this same state for a few months now. I just can't seem to accept the T as part of my life.

I've been starting to wonder if I need to change strategies. Or maybe I just need to give it more time. I'm not sure.

I realize this question is vague - but maybe you have some ideas to help those, like myself, who aren't sure if we should make a change and try TRT, or CBT, or maybe some other acronym.

Thanks for all you do. You posts have helped me through difficult days.

 

FWIW I don't think I could ever accept tinnitus as part of my life - so you are not alone in that regard. Others may disagree, but I see accepting tinnitus as part of one's life as an element of coping. And I have absolutely no interest in coping with my tinnitus. Rather, I don't want to be aware of it. Think about it for a minute: there is no reason to cope with something of which you are not aware, right? Some may say it's semantics - but to me it's a very crucial concept. Don't get me wrong. I'm not "anti-coping" - it's just not for me.

That's a highly individualized issue. Perhaps you should speak with an experienced TRT clinician or an experienced CBT clinician or an experienced "some other acronym" clinician, review your particular case with that clinician, and see what he or she suggests (and why!!!) Talk to two or three different clinicians to get a feel for it.

You are welcome. I am glad to be of some small assistance. We're all in this together, no?

Dr. Stephen Nagler

 

My Tinnitus is also 5 months old. Came about 2 days after I suffered a severe fall from 10-14 feet and is only in my right ear. All hearing tests reflect "normal hearing" except i think we obtained evidence of some sort of inner ear damage with absence of otoacoustic emissions in the right ear.

it is very difficult for me to deal with this because Tinnitus is tied to a traumatic event. It's also difficult because all ENT's seem to believe it will quote "heal" and it has not. Therefore I'm in a horrible situation expecting it to pass instead of accepting it as an invisible scar.

I wonder if how one obtains Tinnitus changes the way we react to it? I'm pretty sure this is the case.

 

You may be right, but my understanding is that reaction is related to how one's brain classifies his or her tinnitus and is independent of the etiology of the tinnitus.

Dr. Stephen Nagler

 

For some people Tinnitus does not bother them one bit, however most are mild cases, while others severe with different tones/frequencies.

On a positive note next year we will likely see significant investment in hearing loss/tinnitus space. Much of which has been underfunded for far too long yet becoming a massive burden exceeding nearly 2.3B in annual disability payments for Tinnitus alone.

Although there is no cure now it is believed the scientific community is VERY close to launching clinical trials for regeneration of sensory hair cells, which might bring relief for some.

 

Dr. Nagler, in all of the years of being in the tinnitus field, and the numerous conferences you have been to etc.
Is there one theory that stands out among others regarding why T can be perceived as very low for 5-7 days, then high for 5-7 days, almost like a cycle. This is how my brain reacts to T

Then there is what I call the sleep phenomenon, when I awake in the morning, if T is high it will stay that way all day, and not go into a low cycle until I awake the next morning. Mine never gets lower once I awake. However, if I am having a low day and nod off for thirty minutes I wake up with it being very high, this has happened four time now, so no naps for me on a low day. Has this even been brought up to you before.

 

@Dr. Nagler. Thanks for the advice, much appreciated.

 

Dr. Nagler
I just want to thank you whole heartedly for your words. They help me through hard times. Especially I liked your "open letter" I found on another board. The story about the man on the train and his three different reactions is something I think about often. You are a remarkable figure in our field and we are so lucky to have you here.

 

Gary, please allow me to make a slight clarification before giving you an answer that will surely frustrate you. The clarification is that you are not describing how your brain reacts to tinnitus, but rather how your brain perceives tinnitus. As far as the answer to your question goes, I'm afraid that the answer is no - there is not any one theory that stands out among the others. That doesn't stop folks from wondering, though. For me, after wondering throughout the first year or so of my own tinnitus odyssey, I gave up trying to figure it out and came to the conclusion that the only predictable thing about tinnitus is its unpredictability. That goes for the types of patterns you describe as well. It is quite rare that the patterns persist longer than six months or so. They just seems to change over time - sometimes gradually and sometimes abruptly. That's one of the reasons I eventually came to the conclusion that reaction is far more important than perception in the search for relief.

Lots of theoretical and speculative possibilities here, Gary. Dr. Jastreboff feels that the issue is one of neurotransmittors being somewhat dependent on the amount sleep - especially REM sleep. I am partial to another view that focuses on the role of the reticular formation in increase of tinnitus perception after a nap. The reticular formation is a primitive structure in the brain stem. It is, if you will, a vital sign monitor. When you wake from a nap or from sleep, the RF checks to see whether or not you are alive. It looks for heartbeat, respiration, blood pressure, temperature - basic bodily signs. It does not care whether or not these signs are good or bad, just that they are present. In a person suffering from intrusive tinnitus, the RF views the tinnitus as part of "normal" body function - so upon waking, the RF checks to see whether or not tinnitus is present. If it doesn't immediately find the tinnitus, the RF seeks it with a vengeance - - especially in the post-nap state, when there has been inadequate REM sleep and when, therefore, the RF is already on "high alert" that something might not be quite right. Theoretically - very theoretically - this RF hyperactivity in seeking tinnitus after napping results markedly augmented tinnitus perception.

Going back to this reaction/perception clarification to which I referred earlier, perhaps you can now see why I focus on reaction so much - because if you do not react to your tinnitus, what difference does it make how loud it might be at any point in time ... or why!!

Hope this helps more than confuses.

Dr. Stephen Nagler

 

This is interesting. Each and every one is telling me that I should accept T and after a while it is going into the background. This always drives me crazy because I did not find the key yet saying to myself: "Hey, why do you not accept a dog whistle in your head and once you have done, you will have relief?". And people then tell me: "Hey you have a mental problem. Why do you not simply accept it? After 11 months, you must have accepted it. It is your own fault." In my opinion, there is only one way to go (please correct me if you found other ways to cope):
No reaction -> Getting used to it -> Maybe the pill will come which lowers volume (Autifony)
The "No reaction" part is so difficult, since my subconscious still reacts automatically with tension and body symptoms. And what scares me most: I suffer (like most here with intrusive T). If I do not get used to it in the one way or other, I don't know if I want to live with this until the rest of my life.

And there is one thing where I maybe have an exclusive opinion: But loudness and frequency matters. When I have one of those very, very seldom days where my T is lower, it is much easier to manage. I cannot say if it is not possible getting used to loud, intrusive T. I am not there yet. But I am sure if my T would more bearable, things would become much easier.

 

Yup, like getting used to a broken leg, makes no sense. NO one would even say that IF there was some sort of cure or relief available.

 

Martin, I guess I see it differently. Like I said, I cannot imagine "accepting" the incessant screaming noise inside my head. And I long ago gave up trying.

Needless to say - just because I see it differently, that doesn't necessarily mean I'm right. But if you were hearing what I am hearing, I doubt very much that you could "accept" it either. I have successfully habituated my tinnitus, but I could never accept it.

Dr. Stephen Nagler

 

Thanks Stephen. This is good to know in a way that accepting is no prerequisite for habituating - as I had the impression. So if I won't find any way to accept it (although I of course would like to), there is still a chance getting used to it.

 

Martin, I do not want to beat a dead horse here - but I don't see how I could ever "get used to" my tinnitus, and I long ago stopped trying.

We just see things differently, but my understanding of habituation has nothing to do with accepting tinnitus and nothing to do with getting used to tinnitus. It's a totally different phenomenon, in my opinion anyway.

Accepting something and getting used to something are active processes. Habituation is a passive process.

Dr. Stephen Nagler

 

Ah ok. I thought habituation is the same as getting used to it.
Now I am curious: So what is habituation for you with a severe, intrusive T? Can you describe it please for me - although habituation was already discussed here many times.
I hope I can at least reach a stage Stoyan describes on the other board: Anxiety and depression is down to 0, sometimes 1-2. He is unaware of T half of his waking hours, the other half he doesn't care.

I fear a little bit, T remains a survival game forever.

 

First, let me join the many others in welcoming you back. Your knowledge and support have comforted and benefited many here, myself included.

So to the original topic of your thread; Tinnitus or Reaction? I am glad you raised this point, as juggling this question is exactly where I am at, 15 months down the road from sudden onset tinnitus due to barotrauma. My tinnitus then triggered horrible panic attacks and anxiety, as it does for many.

OK, so here I am today: Much better. Had lots of CBT, to the point I "graduated." Rarely need alprazolam any more, except sleep (and working on doing away with that, too). Almost done with Neuromonics. Able to work, play music, have fun, love my husband, all the things I did before. I am more cautious about flying, but I still do it. No more panic attacks.

Yet at some point during quite a few days: My tinnitus remains annoying and bothersome. I may get anxiety flutters, although I can calm them with my CBT skills instead of drugs. But: Clearly I still am reacting, at least a little. I would like to find a way to move beyond that. Maybe its not possible. But I figure I am just over a year in, so I still am a work in progress.

Getting a little bit too philosophical here: But I feel my tinnitus AND my reaction are the problem, as you said. Without the tinnitus, I wouldn't be dealing with the reaction. But I could have had tinnitus, with little or no reaction (as some people do). Sadly, I didn't draw that card.

Anyway, sorry for the ramble.

 

Perhaps take a look at the "If the Eye Can Do It the Ear Should Too" thread.

Dr. Stephen Nagler

 

Thanks to you (and to all) for the warm welcome and kind words. It means a lot.

Habituation is a process, not a state. When folks say they are habituated, they really mean that they are largely habituated.

You have been presented with a tremendous challenge, you are doing rather well at this point, and by realizing that you are a work in progress you are acknowledging that you will continue to improve over time. Considering the hand that you were dealt at the outset, I'd say that you have drawn some very good cards indeed!

Dr. Stephen Nagler

 

I'm only 5 weeks into this ride, so my thoughts on the whole T thing are probably still clouded by the panic and anxiety that wash over me daily. I just want this thing gone and then I will be able to relax again.

However I have my calmer moments when I think to myself it's only a noise, it can't hurt me, I can still hear everything else around me perfectly well so why am I reacting so badly. So it's possible it's all about reaction. Maybe it's something I will learn not to react to in time.

 

Thanks, Dr. Nagler. I appreciate your reply. And you are right, my hand is not bad indeed, considering the deck.

I guess my question now is: What next? My Neuromonics will be over in December. At that point, do I: Try TRT? Mindfulness? Just sit with it for awhile, live my life not contemplating on what my next treatment step will be, just try being in the moment? Not sure.

 

Well put initial post, Dr. That is the gist of my supportive position to newbies. Like you say, it's not easy to get the point across, that the lack of reaction is key. Giving my own experience seems to help by putting a person in the thick of it who has been dealing with T since 1972. Through just about every form of therapy there is, I only came to a sense of progress when I chose to learn a relaxation technique which freed me from panic and allowed me once again to think positively, not fatally, not that T can cause eventual death, but it sure felt like it at times.
David