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CPW151
 #1 
Could we have some discussion on the meaning of the term "invasive" tinnitus?  I have always heard the term used to mean that the tinnitus invades your life to a point that it "ruins" it, changes your life, makes it terrible and not worth living, etc.  Those are all very negative meanings and responses to the term.

There are days when my tinnitus is still quite loud and regardless of what I'm doing, unless I am so actively engaged in a physical activity (like a fish on the end of the line) that it is constant and does not seem to want to take a back seat to anything that day.  It invades in whatever I am doing by just being there loud enough to be aware of it.   It doesn't stop and hinder me from doing anything I want to do and it's not going to - but at some measure I would still define it as "invasive" because it's always there during the day and I am quite aware of it.  My response to it is so, "this is another loud" day.  Don't think I have any real negative emotional response to it, although at some level I might be, but it is rather like, "so this is the way it is today".  Could this be considered an invasive tinnitus although it certainly does not imply all the negative emotional life changing responses we have all heard about it? 

Then again I have tinnitus that is "reactive" to sound and I know that this word also carries with it the same negative connotations and excuses to not get on with you life.  Again I don't use the term reactive other than simply that it reacts to sound - most sounds and not used in a negative sense.  So maybe my definition of invasive also falls into my definition of reactive and really out of the mainstream - which is not unusual for me.  Would Dr. Nagler and anyone wish to comment?

CPW
DrNagler
 #2 
I'm not familar with the term "invasive tinnitus," CPW, although it's certainly possible that some authorities use it.  The term "intrusive tinnitus" is used quite a bit, however, and possibly that's the term you are referring to in your post?

Anyway, I have never seen a formal definition of intrusive tinnitus, but to me the simplest way of looking at it is when not only do you have tinnitus, but tinnitus has you!

And as unpopular as this notion might be in some quarters, it follows from the definition I have offered above that the primary determinant of intrusivity is a person's response to his or her tinnitus.  Sound familiar? 

smn
DrNagler
 #3 
Bbec posted:

I am having trouble changing my reaction to my intrusive tinnitus, because it fluctuates so much.

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

I suspect that the reason you are having difficulty has more to do with your strategy and less to do with the fact that your tinnitus fluctuates.

Tell me, how are you going about trying to achieve the state where you are reacting less to your tinnitus?

smn
CPW151
 #4 
Yep,  it was late when I made the post.  It was Intrusive tinnitus I meant.   

CPW
winterbridge55
 #5 
CPW,

I look at reactive as an external event and intrusive as a cognitive event with a little help from my friend, Klonopin. I have multi tone pulsatile tinnitus and hyperacusis with ear pain. It can be reactive although anti anxiety medication helps partially to keep it from ramping up and controlling the intrusiveness. I meet it head on most days but I do have those days when I can't do a 100 percent successful cognitive redirect and wind up saying this sucks. Those are the days that I pine for the pre t days. I have experienced intrusiveness when I have had a spike from a sudden decibel surge and even a dream or nightmare. For every reactive moment the level of intrusion is based on what I am thinking, doing and taking.
GeorgiaGirl
 #6 
In my view, "Intrusive tinnitus" means you hear it constantly every waking minute, and no amount of diversion makes any difference.

CPW, given the circumstances of this affliction,  I'm sure you're doing the best you can.  As we all know by now, it takes the vast majority *years* to "get use to it" and those years are most difficult.  We are not made of steel, we are human beings forced to deal with something that we (nor anyone else for that matter) had even heard of. 

I hope you heal completely from this soon
Georgia Girl
Rob_in_Denver
 #7 
CPW

Constant tinnitus is intrusive if it stays in the foreground of your attention and crowds other things out -- it is always there and it can and does disrupt your life.  It is natural for people who develop tinnitus (especially people who develop it suddenly) to find it intrusive.

But if you are able to reduce your reaction to the tinnitus so that it simply becomes a feature of your conscious experience, rather than a threat to it, it is no longer intrusive.  It may still always be there, but if it does not bother you it need be no more intrusive than any other background noise that you can readily ignore.  Of course tinnitus is not like any other background noise -- it follows you wherever you go.  But the fact that this difference contributes to its intrusiveness is more a function of your reaction to the fact of its constant presence, than the constant presence itself.

Rob in Denver

CPW151
 #8 
Thanks everyone for your comments.  I agree totally with Rob in Denver's last comment and Dr. Nagler's comment that if it "has you" than it is intrusive.  Thankfully I am far from that now.  It took a couple of years but I have moved on.  Only asked the question because I have a day now and then that it is always present regardless.  Although it is there and I am aware of it, it doesn't threaten, scare, make me miserable or change what I want to do for the day.  I guess the best description is that when I have a very loud day it is an annoyance.  Some of you know where I was a couple of years ago and some know where I am now so from a couple of the posts I felt a need to set the record straight.  I guess maybe we need to leave the word Intrusive as defined by Dr. Nagler and find another one to describe those annoyingly loud days.  Maybe the word I used in error might fit slightly better - invasive, but only meaning that you always know it is there during the day.  Nothing more.  Thanks again for everyone comments.

CPW
DrNagler
 #9 
Bbec, how long have you been using your current approach, and what has it accomplished?

smn
DrNagler
 #10 
Bbec wrote [in part]:

I read the books, I do the exercises.

........

What books?  Which exercises?

smn
winterbridge55
 #11 
Becca,

Excuse me but I am going out on a limb because I think I know how you feel. I think I remember that you had TRT counseling with maskers. I remember you saying you take medication to help as well. It seems like to have done alot to help yourself.  I wonder if, and I say this because I may be like you in some ways, we just won't accept anything less than being perfect again and we have lost control over our ability to regain that. Everything now is met with resistance because if we can't be perfect, we want to be miserable. If I am way off base I am sorry. This is how I feel about myself though.
Micky
 #12 
Winterbridge said in part ..

 I may be like you in some ways, we just won't accept anything less than being perfect again and we have lost control over our ability to regain that. Everything now is met with resistance because if we can't be perfect, we want to be miserable. If I am way off base I am sorry. This is how I feel about myself though.
-------------------------------------------------------------
Winterbridge, its not a case of not being perfect is it, ..iv'e never been perfect in my entire life ..don't know any one who is ! ..the thing is with Tinnitus , there is so little we can do about it at the moment, apart from coping strategies, ..we have no real control over it , and thats what bugs us..if there was a pill available Tinnitus would not worry us , ..it would just be a case of taking the medication and waiting for it to subside, a bit like ridding your self of a head ache ..we all have these feelings from time to time...Micky ..
winterbridge55
 #13 
Hi Micky,

I meant "perfect" in terms of not having tinnitus.  I didn't mean to say that I was perfect or anyone else. We just get used to having something not go wrong and when it breaks we yearn for it to be perfect again as in no noise.
Micky
 #14 

Hi Mark , yeah i know what you meant ..your saying that you do not feel your body is perfect because you have Tinnitus, i understand that, ... if you have intractable back ache, or Sciatica, or Migrains, you might also say that you are not perfect, but the difference here is you can pop a pill and an hour or so later your feeling a whole lot better...with Tinnitus as you know we can't do this..not yet any way ..take care mate ..Micky ..
DrNagler
 #15 
Bbec posted:

well I have read jastreboff's book- and i have a guide to ringing in the ears, and done the exercises.

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

Becca, I'm going to guess that you read Dr. Jastreboff's book but did not really understand it.  That's not a knock on you by any means.  The concepts are not easy.  (I have read it cover-to-cover three times - and parts of it five or six times.)  The reason I feel that you have not understood the book is that if you did, I don't think you'd be asking some of the questions you have asked in other threads.  I do not wish to appear harsh, but I am trying to answer your question in Post #10 above about strategies - and I want to be honest in my response.

Also, regarding the Henry/Wilson book, how much time and thought have you actually devoted to the exercises?  And have you actually filled out all the forms in pen and ink ... or have you just sort of done them in your head?

smn
DrNagler
 #16 
Bbec wrote:

you are right about the Jastreboff book. It is very difficult to understand. The other book- I just did them in my head. I wasn't sure to mark in the book, because I might need to do it another time, with different answers.


..........

Well, in Post #10 you asked for suggestions regarding a strategy.

To begin with, I suggest that you read the Jastreboff book several times - slowly.  I agree that the concepts are hard, but you do not need to be a neuroscientist to understand them.  It mostly takes patience and persistence.  Try to do it on your own - five pages a night.  Write down on a piece of paper what you do not understand.  And at the end of each chapter maybe turn to the folks on this board - but not until you really try to figure it out yourself.

And I would make photocopies of the pages of the Henry/Wilson book that have have places for written responses so you can actually write down those responses.  It might take you a month if you give careful thought to each exercise.  And six months from now ... do it again.

Bbec, you have a serious chronic condition.  My suggestion is that you OWN that fact.  And DO something about it.

All the best -

smn
winterbridge55
 #17 
I know how you feel Becca about fluctuation.  My symphony gets louder when everyone shows up for work but I love it when some call in sick.

I just purchased Jastreboff's book so I can begin to hopefully see the light at the end of the tunnel. I know he is not pro medication but will not worry about that now. All I know is Klonopin has been a life saver for me in keeping the volume and ear pain down.
DrNagler
 #18 
Bbec wrote [in part]:

The way you sound is as if I haven't been trying- this is a very difficult condition to overcome.

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

Is it really a very difficult condition to overcome?  Gee.

Look, Bbec.  Don't tell me that it's very difficult.  I KNOW it's very difficult.  Remember, I've been there!

And don't start in again with your "the way you sound is as if I haven't been trying" routine.  I have told you at least three times that I am very much aware that you have been trying.  My point has been and continues to be that in my opinion you have not been using the right strategies.  And with all due respect, I'm getting just a little tired of saying that.

I am truly sympathetic., Bbec  I feel for you.  But I don't want to be feeling for you two years from now.  Two years from now ... I want YOU to help ME help others.  And the only way that's going to happen is for you to stop talking about how difficult this all is.  Because we all know it's difficult.  So maybe try a different strategy?

smn

DrNagler
 #19 
Bbec posted:

thank you for all your help Dr. Nagler.

...........

You are welcome.

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

Goodbye

...........

I am sorry that this has not worked out for you, Bbec.

This board is not designed strictly as a "feel-good" forum.  It is a place for productive exchange of information and support.  Most often support takes the form of positive strokes.  But sometimes there is a reality to convey that might not be what we want to hear.  That, too, is support.  And I think it is what has happened to you in this thread (with a bit of my own frustration creeping in as well.)

Again, nobody is questioning how hard you have been trying (and I confess that I resent your repeatedly suggesting otherwise.)  What I have been doing - in response to your request, I might add - is suggesting a different strategy.  Why?  Because in my opinion you are attempting to cross the Atlantic Ocean by automobile.  And as hard as you try, I just don't think it's going to work to your best advantage.  So I have recommended a ship or a plane for your consideration. 

Like it or not, Bbec, you DO have a serious chronic condition.  However, very fortunately for you there is effective treatment.  But if ya wanna cross the ocean, ya gotta get out of that car and hop on a ship or a plane.  In my opinion.

The door is always open here should you wish to return.

All the best -

smn
aQuieterBreeze
 #20 
Hi Mark,

Just curious- why does the "redirect" have to be 100%?
you said-
....I meet it head on most days but I do have those days when I can't do a 100 percent successful cognitive redirect ....

That sounds like alot to ask for- when trying to cope with a stressful situation.
I remember times when something else I went through (not related to h or t)
was very "intrusive" in my thoughts, it was with me all the time-
every morning when I woke up, and even at night I would wake up thinking about it, and seemingly all day long as well -
to somehow even get a break for just minute when that happened- felt like real breather- but my attention would once again go back- to something- that I wanted so much to change, but could not.

And I could not readily put some of those thoughts out of my mind -
in part because I wanted so much for it to be different.

But somehow there began to be a few minutes on some days when I was able to focus on something else- that captured my attention, in a good way- and forget about what had been so devastating..
Those few minutes felt like a vacation for me. And I learned from the way that felt, and I made a very conscious effort to look for reasons to smile.
All I had to do was open my eyes to see them all around me, I found many in nature-
in the way the sun lights a flower at a certain time of day, or the way a beautiful sunset illuminates the sky- I would savor the beauty i found, and focus on it-

And after awhile I quit trying to change what could not be changed- and focused on looking for those reasons to smile. I think the combination is part of what helped me. That and also time.
But I really had to give up trying to change the past, to find happiness again.
It took me a long time, but over time- I realized it was a choice I had to make.
Every time when I thought about the situation, and instead of accepting it- tried to change it- (which was impossible) -
 it kept me more entangled in what I could not change.
But when I finally accepted that I could not change it- (and nothing would change that) and realized,
I could change the way I looked at it. And the way I went about thinking about it -  That helped- it wasn't easy, it's still hard sometimes - but overall it does not consume my thoughts day in and day out and consequently does not consume all my energy either.
Though if that time machine is ever invented ..........

Anyway- back to your 100% thought- why 100%?
 most things do not have to be all or nothing,
there is alot to be said for all the beauty, wonder and happiness, to found in between.
Especially if  - and when - we are willing to look for it.
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