Tinnitus and TINNITUS

Yeah, right....I am sure this Sheriff was not suffering anymore then someone with the very low tinnitus that you speak of when he shot himself and left a suicide note as to why he did:

http://www.dailyprogress.com/news/i...cle_6d59eb19-903b-5648-8a54-6e049d596666.html

 

There are a number of reasons that pain and temperature are not considered to be among the five senses: touch, hearing, smell, vision, and taste.

Tinnitus is a sound. It follows the neurological pathway for hearing and it does not involve the unique and highly specialized receptors for pain and temperature.

Dr. Stephen Nagler

 

@here2help --I'm so happy to see you on the forum! I can't thank you enough for all your advice and help. I'm really making progress! I can live with my T now and as I come up on a year, I think it will get even better. My T may not have been what others here suffer--I was told by my audiologist that it is 'moderate' but it made me suffer terribly at first and thanks to you and some others here, I'm not suffering--I'm living and life is good. It's not perfect but it is so much better than it was. It was because of your encouragement that I kept putting one foot in front of the other. You were so kind and seemed to take an interest in my well being. I will always be grateful!

Sorry if this is off-topic. I don't involve myself in debates--I find them very non productive and only wish that we would all realize we are in the same boat and someone who tells it like it is, like yourself, is only trying to help.

 

I was wondering if you do a otoacoustic emission test at your office an if so what have you found? The reason I ask is that when mine was tested, I was told that all of the "hairs" were there, but they were not responding correctly. Is that what you are finding in patients without hearing loss but with tinnitus?

 

I used to do otoacoustic emissions testing when I first started seeing tinnitus patients in 1997 or so. The reason I stopped is that I did not see how the results of this test would help me make a clinical decision. The net result was more expense to the patient for no benefit. Tinnitus is expensive enough as is, no?

Dr. Stephen Nagler

 

Seems that opinions in this thread are quite polarized. Some are at least willing to admit the possibility that I might be correct in what I wrote in Post #1. The others insist that I am absolutely 100% wrong.

I find it interesting to note that those who are willing to admit the possibility that I might be right are by and large doing rather well with their tinnitus - regardless of how loud that tinnitus might be. And those who insist that I am absolutely 100% wrong are not doing particularly well with their tinnitus.

Perhaps those who are not doing well with their tinnitus might want to seriously consider revisiting their opinion on this issue.

Dr. Stephen Nagler

 

I understand your point Telis, I really do--I just feel that debating T is non-productive. When I first came here, in total despair, @here2help helped me a lot. She/he pointed out my strengths and encouraged me. @Dr. Nagler praised my strategy, CBT, anxiety workshop, and he also put to rest my fears about a certain med. They both told it like it is--with kindness and support. That is why I do not engage in debate-- I follow the advice of those that have walked in my shoes. @billie48 , @cullenbohannon, @Karen, and many others--veterans of this forum--have helped me tremendously. That is why I find it so hard to leave the board even though I think of my T more when here.

I wish you habituation Telis. I want the best for all of us who have suffered or still suffer. The old cliché that I have found most helpful is: Acceptance is the answer to all my problems.

 

Well I have had both mild T, and severe T (this all within a few months). Call me crazy but the severe loud high pitched T bothered me more...I must be nuts!

 

You're not crazy. You're not nuts. And of course it bothers you more.

What I am saying is that if you did not react to your tinnitus, it wouldn't bother you at all. In fact, it couldn't bother you at all. Because being bothered by your tinnitus is a reaction!

Dr. Stephen Nagler

 

From your quote earlier, looks like we share the same opinion anyway.

I'm done with this thread...I've said enough here.

 

I can understand your frustration.

But saying enough here is one thing. It is when you are willing to seriously consider what others are saying here (and not just those with whom you agree) that you may be ready to move ahead.

All the best -

Dr. Stephen Nagler

 

This is how i see it
People with mild T typically habituate within a few month and people with severe T may take years. Of cause there is exceptions to that, there might be some with mild T that takes longer and there might be a few with severe T that might habituate faster (we do not hear about them too often).

To me mild T = easy to mask and low. Some do not react to this at all, but some do because it interferes with their sleep. Once they realize that sleep with T is not a problem, most likely within a few month they do not fear it any more. Way would they, they seldom hear it during the day.

For us with severe T sleep is a problem in the beginning as well but we also quite soon realize that it will not be a problem in the long run. For most of us going to bed is a relief. But we also have to deal with a complete new sound imagine during the day.

That might be i high pitch tone that can be heard over anything. It can be reactive and change to every days sounds. Also completely unpredictable in its patter. Then it might be pain and H involved. Listen to music and every day sounds might be very devastating because it dose not sound at all that it used. You slowly realize that nothing is ever going to sound at it used to do. Sower might be the only place were you find relief

Remember form before T in our summerhouse which is quite small that i never had a problem to sleep with the refrigerator close, nor the fans or the ac. But one night we had a problem with the tap. It was leaking and dripped without a pattern. Couldn't sleep with that, I had to go up and put a towel under to catch the drops.

My T reminds me about a water dripping unpredictable on to a hot frying pan. Its been almost a year now. I am completely habituated once it comes to sleep and I do not have any panic attacks. I live my life quite normal now but some days is still very tough. I believe I suffer from LLCS....

Low level constant sadness...i do not know what i had done without my wonderful wife and kids. Even if we do not talk to much about this anymore they are an never lasting source of comfort and love...

I do rally appreciate that you old timers come back here and tell us that habitation is for real (no matter what T you might have) but to me it´s still just a imagine.

To all my T flows out there, thank´s for posting! It means a lot to know a am not alone in this.

I know what you feel and fear but more than anything what you hear.

David

 

Anyone who makes blanket statements about "habituation", and not "to not think about your tinnitus so much", and it will stop your progress if you become too wrapped up in that, etc., etc....is correct...And also 100% WRONG!

OK...I have really been trying to stay out of discussions like this, but I feel like that famous quote from way back where the guy stands at the window and yells: "I CAN'T STAND THIS AND I'M NOT GOING TO TAKE IT ANY MORE!". Then the whole neighbourhood erupts! (Maybe you have to be over 60 to get that one).

Anyway I am going to keep this much, much too brief so will just make ONE major point. There are others, make no mistake (but I always write too much):

There is this naive assumption that all tinnitus is almost like a "one time deal". So, just get over it and you will be fine. Getting over it involves accepting it because there really isn't any decent cure out there anyway. [Let's ignore "acute tinnitus" and AM-101, corticosteroids, etc. for now]...BUT THERE NEEDS TO BE A HUGE WARNING THERE WHENEVER THAT IS SAID!!! And this warning for the most part is never there and it bugs the hell out of me...It's insulting and dangerous.

Now I quote from a new thread recently posted which illustrates my point quite well and also the ??? aspect...(apologies @Jay M ): https://www.tinnitustalk.com/threads/clapping.6512/

I just discovered a normal single clap will cause my left ear to produce a higher pitch "eee" that lasts about 15-20secs. Is this reactive T? Is this normal and I have a weaker left ear? Does this ever improve?

This is what I call Reactive Tinnitus just because I have never been given a clear indication just what else this is in the hyperacusis/tinnitus spectrum.

OK, you with me so far... Right...Now take this example above and just say, that this "15-20 seconds" lasts longer than that? Just say, you get exposed to a sound situation that is bigger than "one clap". Just say, your bloody tinnitus does NOT COME DOWN TO IT'S OLD BASELINE AFTER SUCH EXPOSURE!
You tell me if you think that: "Not thinking about your tinnitus", or "Habituating" every time this happens is some sort of easy street, gravy train thing to do???!!!

It is NOT! Absolutely, unequivocally, 100% clear NO!

Not "thinking about your tinnitus" is an absolutely dumb idea! It can cause you untold grief in more tinnitus. Louder tinnitus. PERMANENT tinnitus increase...How do I know? Just look at my Profile and my history and my experience. And I am not the only one!!!

Am I making my point here? There is Tinnitus and there is TINNITUS! And for the love of Mike make sure you know the difference or you could pay a very heavy price.
I guarantee to you, that I could go out right now into the "normal world' and "not think about my tinnitus", get zapped, and jump from insanely loud tinnitus to absolute suicide level tinnitus in a matter of days. Permanently!!! I am already at level "9" out of 10 on our TT scale (Retigabine thread). I could easily go to 'beyond the scale' 15 or 20 or 30!!! Because it has already happened at objectively lower levels to me. Yes objective, not subjective. (I have elaborated elsewhere on that).

So...my advice: Know your Tinnitus. Know if it is what I will call "normal Tinnitus" v. "Reactive Tinnitus" and behave accordingly. There is plenty of advice here on TT forum about "normal T" and how to deal with it...but if you have "Reactive Tinnitus" do not follow the same rules with the same expectations!
*[Here is a post that may help with that: https://www.tinnitustalk.com/threads/tinnitus-vs-tinnitus-hyperacusis-some-basic-differences.5110/].
*[And another: https://www.tinnitustalk.com/thread...v-habituation-of-“body”-c-58-years-of-t.6424/ This one really needs a new title].

An end point, and yeah I know too long already, but actually I have hardly begun... With regard to my own "habituation", after four stages of permanent increase in T volume.
Once again after nearly two years (2012), I have "habituated" sort of. I do not ponder my T all day. I do not think about it all the time. It does not drill into me affecting my emotions and angst...AT HOME! Inside my house I have "habituated" admirably. But, do I in-"habit" the world??? Hardly... Once I step outside my door and unpredictable humans appear, I am a micro-step away from a stage five increase in permanent T if I am 'not thinking' very clearly and very consciously about my T. If plugs go in, the internal T volume becomes unbearable after a while, so they stay out as much as possible. Thus I am am constant alert for noise situations to avoid getting zapped. I know where to put plugs in before I even get out of my quiet car. I "think about it" all the time...until I get home and close the door.

Is this much of a life???...No it's not. I would say 95% of what my high energy self would want to do is impossible.

Is this a good state of affairs to be in???...No!

Do I accept it?...For the most part, yes. I have no choice.

Do you want this kind of life if you are new to tinnitus? NO YOU DO NOT!

So be very, very very careful...There is tinnitus and there is TINNITUS...and I hope to never see that blandly ignored without a disclaimer that applies to people like myself. It's an insult.

Best, Zimichael

 

I can understand why the opinions here are so polarized. When I first got tinnitus, I didn't want to hear about habituation either. I didn't want to habituate, accept it, put up with it, and I certainly didn't want to hear about how others are doing well. I didn't want anything other than it to be completely cured and gone. I think ultimately we'd all love that, but that's simply not an option. It wasn't until I began to change the way I thought about things that I started to get better.. this was with help of my CBT therapist.

If we keep telling ourselves that our tinnitus is different, or comparing it to the worst things we can imagine, we'll never make it. I'm not saying this is easy. I know first hand that it isn't. I also know that we're all wired differently and will react differently, or get over things quicker than others. I get all of that. But I keep asking a certain someone (and he keeps dodging the question) what exactly should we do? Since a cure doesn't exist, what exactly are our options? As far as I know, our options are extremely limited on this one. When the day comes that effective treatments become available, or hopefully the cure, then I'll go for that (assuming the side effects aren't something worse). But until then, I have to live life; and so does everyone else.

I know this post may make some people angry. I get that. I don't blame you; it's tinnitus that brings out the worst in us. It has brought out the worst in me at times too. I sincerely apologize to those who I have offended.

But what I do know is that there are people with very loud tinnitus who are doing alright. Dr. Nagler is someone who has described his tinnitus as a jet turbine... I'm glad I don't have to deal with that! But yet, he is doing fine. My tinnitus is very hard to mask because of the pitch, and I can hear it in almost any setting (assuming I'm not at a rock concert of course). But I have many good days. Every now and then, I am at a point where I am nearly in tears, but those days are very few and far between now. Sometimes I can go for weeks without it bothering me to that point anymore. We also had a member here who constantly posted posts about her wanting to commit suicide, but based on her last post, it sounds like she has make a complete 180 in her reaction and how she deals with it.

But yet, I do recognize that the volume of T does play a role. In fact, I went through a 2 week spike recently, and I had to constantly work on my CBT to get through it. I kept reminding myself that if it was my new normal (thankfully it wasn't!), then if I habituated before, then I can surely do it again.

But it is possible to "accept" situations that suck... even ones that TRULY suck. I met a friend in college who was blind. He wasn't born blind, but he just got a virus while in school and it damaged his optic nerves in both eyes and now he has lost all vision. And yet, he got married and has a son, and lives an otherwise full life. Of course he'd like to have his vision back, but he recognizes that that isn't going to happen. At least not by naturalistic means. He can no longer read, drive, he has to have his wife help him pay bills etc, but yet, he is one of the most cheerful people I know. Can't say that I would be that way, in fact, I know I wouldn't. But my point is, people have gone to hell and back. And instead of dwelling on how bad my tinnitus is, I dwell on how good I have it. Unlike my friend, I can drive, I can read, I don't need to depend on someone else, etc. Yes tinnitus sucks. But it's not the worst thing in the world. I realize this will make some people furious. But, it's all about perspective.

Funny, because you can almost describe the telephone the same way, but would any here really claim our modern phones haven't come a long way? Or how about type-writers vs computers? Or how about the good old 8-bit Nintendo versus the PlayStation 4? All the same thing in concept, but vastly different in reality!

 

Hi all,

Just a gentle suggestion: I think that for those of us who have been here a while, our time is much better spent comforting the newcomers than arguing endlessly over something that is, in the end, totally subjective.

A good weekend to all!
Della

 

Of course I agree. But the problem is that newcomers will see that some people are doubting that habituation can be bring tinnitus sufferers relief. And since there is no cure, where does that leave the newcomers? If I were new and I saw that, it'd make me feel like I am destined to be miserable for the rest of my life since there isn't a cure.

Again, it's not as if our options are habituation versus cure. It's habituation versus nothing.

 

Support comes in many flavors, @Della.

I very much like the idea of comforting tinnitus newbies. And there's a whole lot of that happening here.

But I also like the idea of respectfully challenging the deeply-held ideas that keep folks from moving ahead with their lives - both the newbies and the not-so-newbies as well. That, too, is support.

Dr. Stephen Nagler

 

@Kathi, thank you for your lovely post. I am thrilled for you that you have continued to make progress. I think you are right when you say things will get even better.

@Rich, thank you for saying more about your situation. I haven’t had the time over the past few months to read other posts here or respond to them, as my work life and personal life are keeping me busy with lots of good stuff. I am unfamiliar with your situation other than a couple of posts you wrote in this thread. Wearing hearing protection as you do is unhealthy for anyone’s ears, including your own.

It can be very difficult sometimes when we are in a difficult situation to distinguish between a belief and a reality. The next to last paragraph in your last post is filled with a number of very strongly-held beliefs. When you say your use of hearing protection has become a necessary dependence, you are stating a belief that may feel like a fact. When you write no amount of therapy could help you, that is another very strongly held belief. When you explain you would have to stop working and stay at home, you are stating another belief. When you say it could take years for you to wean yourself off hearing protection, that is a belief. When you say all of this would be impossible for you to do, that is a belief. When you say it would require putting your life and your family on hold, that is another belief. I wonder if it is possible that each of these beliefs is held in the service of a profound fear of sound?

@Telis, you claim I said to you it is just your reaction, it is all just you, and you must be weak. I haven’t said any of those things to you or thought them. If you want to put words in someone’s mouth, look elsewhere.

here2help

 

You're so very welcome @here2help. The support you gave me reminded me that I am a strong person and helped me to see that I could do this for as long as it takes. I miss you but it is encouraging that you are so busy living your life! That is the best example of habituation. If you want to see how wonderful you were, here is a link to one of my earlier posts:

https://www.tinnitustalk.com/threads/back-again-is-habituation-a-myth.4211/page-2#post-41496

 

With all due respect!

Oh my f##king God! Are you serious! You sound like one of those positivity lecturer's! The world isn't all rose's and fluffy's.

So you know more than the Auckland university Tinnitus clinic huh?

I have worn earplugs 24/7 for 15 years and then another 9 years just during the day while at work and going out of my house, removing them while at home.
Up until my depression and the run in with the evil suction lady, I could handle sitting outside without ear protection and hearing quiet vehicles go by the house, blocking my ears for the noisier ones.
For 9 years and I still couldn't wean myself off them fully!

This is what I said!

My strong belief? Umm No my dependence now on earplugs has nothing to do with belief anymore it has become a necessary dependence that no amount of professional therapy can help I would have to stop working, stay at home and very slowly wean my way off them which could take years and is impossible for me to do unless i could win lotto or put my life and my family on hold!

If you read this, I said impossible to do and carry on with my life as it is at the moment, I have a job that takes me into noisy environments everyday, fork hoists, horns blasting because of safety requirements, factory's and construction sites!

I have been told by audiologists that for me to wean off earplugs after all these years I would have to introduce my ears to progressively more normal noise very slowly and that my job at the moment, working 12 hours a day driving would make it impossible for any therapy to wean off earplug dependency and if I tried to just take my plugs out and walk straight in I could do more damage than harm!

It took years to become dependent it could take years to fix!

IT IS NOT A BELIEF ANYMORE! THIS IS MY REALITY.

Rich

 

Well, since I started this thread, I feel the need to jump in here.

@here2help is very solid in what he is stating. Moreover, he knows more about tinnitus than 99% of the so-called experts.

The folks at the Auckland University Tinnitus Clinic? The only one I know is Grant Searchfield. He is a personal friend of mine and a true superstar in the field of audiology as related to tinnitus. I hold Grant in very high regard. He is indeed an expert. There is no "so-called" about it. But @here2help is an expert as well. It's just that what @here2help is talking about has nothing to do with audiology.

And by the way, @here2help is most definitely not a "rose's and fluffy's" kind of guy. He is incredibly knowledgeable, compassionate, and patient. But "rose's and fluffy's?" No way!

In tinnitus your beliefs ARE your realities. Nobody else hears what you hear.

Dr. Stephen Nagler

 

So you have felt the need to only quote the proportion of my post that is the most irrelevant in regards to my reality!

Why would you feel the need to go into your relationship with Grant Searchfield?

Grant was my very first audiologist who tried to wean me off ear plugs back in the early 90's when he was just a plain old ear specialist before he had anything to do with the university! but so what? that's got nothing to do with this thread let alone my previous post's!

I never once called Dr Searchfield a so-called anything!

Do you even bother to actually take in what people write?

This has more to do with than just my Tinnitus, I'm not even going to go over what my previous post's contain if you can't be bothered to address the main point of it!

Well he could have fooled me judging by his post!

Rich

 

Sorry to HAVE to do this, but some on here fail to read post's and actually take on board what is said!

 

Hey @RichL -

I have a suggestion for you, OK? Just a suggestion.

Take that chip off your shoulder. Perhaps be a little patient, and try to ask the questions you would like to see answered in a respectful and non-demanding manner. See how far it gets you.

Your main problem at this point in time appears to be decreased sound tolerance. You are walking a tightrope. Your strategy for managing your decreased sound tolerance is compounding your tinnitus, which is bad enough in its own right.

Well there are very few people in the world who know more about decreased sound tolerance and its various manifestations and consequences than @here2help. I mean you really aren't particularly thriving using your current strategy. So what harm could it do you to listen to what the man has to say!!?? Without biting his head off, that is.

Or mine.

Dr. Stephen Nagler

 

Yeah...why even work on treatments to reduce severity? It has nothing to do with suffering right?

Give me a 50 percent reduction and I have my life back...but hey, I'm no expert like you are...I'm just a tinnitus suffer. What do I know?

 

GOOD BYE

 

Researchers have been working on that for more than 30 years. They haven't gotten very far. But maybe someday their efforts will bear fruit. I certainly hope so.

What do you know? You know how to suffer. That's what you know. All I am suggesting is that perhaps those who used to suffer just like you but who no longer do might have something to offer. What does it hurt to listen to what they have to say?

Dr. Stephen Nagler

 

I had quiet tinnitus for years that did not bother me once, ever, not even on the first day I noticed it. Years later, my tinnitus significantly increased in volume, and it started bothering me.

All else being equal, the volume and qualities of your tinnitus determine how one reacts to it. To say otherwise is to say that the sound of a purring kitten is equally as pleasant to listen to as a fire alarm.

If you take an individual who is bothered by their soft tinnitus, and an individual who is not bothered by their loud/screechy tinnitus and ask either of them if they would like their tinnitus to become louder, the answer would unanimously be "no."

 

Absolutely. You'll get no argument there from me!

From my Post #1: "And sure, everybody with loud tinnitus would prefer that it were less loud. I get that. I really do."

From my Post #39: "And of course [loud high-pitched tinnitus] bothers you more."

The problem is that at this point in time we have no predictable way to lastingly mitigate tinnitus loudness or tinnitus pitch. So I have been trying to suggest that perhaps we might go about the problem differently and address reaction itself. Why? Because, if you do not react to your tinnitus, then how loud or high-pitched it might be is irrelevant.

Dr. Stephen Nagler

 

Also, the burn victim analogy is accurate. I suffer from chronic pain that can be very severe at times, and the methods my occupational therapist uses to attempt treat it involve what is more or less a neurophysiological habituation model.

Of course, it doesn't do anything for my actual pain, it's just a hilarious and useless attempt to train my mind to ignore it.