Curing Tinnitus ...

Seems like we just cross posted. That's exactly the point I was trying to make! Well said.

Stephen Nagler

 

Time for me to call it a day.

Be well, everybody.

Stephen Nagler

 

Dr. Nagler, my dad and you share similar views on tinnitus. He lost almost all hearing in his left ear when he was in his 40s with 3 10+ year old kids and along with it came loud tinnitus and he NEVER mentions it, and didn't for my entire life. It wasn't until I developed it that he mentioned it, but since his had a different cause his experiences and views about were different from mine. He is unaffected entirely by it. He doesn't mind taking a treatment if one exists to fix his hearing, but he doesn't have unrealistic expectations and isn't driven by that.

 

Same with my dad. He had it since before I was born and I never new until i got mine. He s the most relaxed person I've ever known. It doesn't bother him at all.

 

Right. But there's one difference. I started out where you are and got to where he is. You can do the same. I believe everybody can.

OK. Until tomorrow ...

Stephen Nagler

 

Cullen,

Did your dad mention how loud it was... or if has gotten louder with time... I had a similar experience talking with my mom... it makes me wonder if my tinnitus is just worse or if I'm a lot weaker minded person than I thought (or if my mom and your dad, and people like them are just stronger than the norm). Interesting what you said about your dad being relaxed... I haven't relaxed in the past 2 months

 

Well maybe "ignore" is the wrong word...maybe I should say I don't notice it as much. But to use your windshield wiper analogy, on the bad T days it's like the windshield wipers are screeching like fingernails on a blackboard plus flashing different colors. Hard not to notice.

 

@DebS, I didn't say it was easy. What I said was that it is do-able.

Stephen

 

Hey well first off no one can accuse you of being weak minded it's a very tough thing to overcome. My dad said his was pretty loud he can hear over almost anything when he listens for it. And it took it some time to habituate. Many on hear take a long time to habituate so I wouldn't worry so much find out what it is about t that worries you. For me like most it was the thought that I wouldn't get my old life back which I was wrong about. It is possible yours is louder than others and others may be louder than yours but I do think you can habituate. You only get one life so when things see hopeless or hard you need to fight harder and harder. Don't give up and lose the negative thoughts (weak minded) don't belive you can't. PM if you want to talk more about anything.

 

Heh, yeah you're right, it is "tinnitus apologetics". Or sometimes you'll hear something like, "You can get used to any sound, like you hear all kinds of sounds right now but they don't bother you". However, the difference is that you can control those sounds by walking away from them. You can't do that with tinnitus.

 

Mpt, remember that everyone responds differently to different things. If there is one thing people would learn very quickly by researching tinnitus, it is how horrible it is on everyone. When I first got my tinnitus, I actually had thoughts of suicide... obviously I didn't take that extreme, but I can, from experience, see how people get driven to that point.

 

Interestingly I had a similar conversation with a lady too who obviously had a loud tinnitus. She didn't seem adversely affected by it. At least she didn't display the kind of panic & anxiety I had for my seemingly 'end game' tinnitus. You would think her tinnitus is not loud. Not so. She told me her T sometimes was so loud she couldn't hear what people were talking to her at times. She joked that one time she didn't even hear the fire truck siren due to the loud ringing when her apartment was having a false fire alarm. LOL. She is not some one with hearing problem either. From that experience, I knew there must be something wrong in my approach. I was fighting and resisting my T or the reality of T in my life. She didn't. She is a lady known for her fiery temper, and yet for some strange reason, she didn't choose to fight her T. She chose to accommodate it or she didn't even try to choose anything but to flow with her ailment as a part of her life. She told me she would get used to it in time. That is her approach and it works for her. I never heard her complain about the ringing since and she is still quite socially active in my social circle. Some folks just have a different set of DNA to tolerate T, I guess.

 

I understand why you might feel that way, @MattK. I used to feel the same way.

But as I see it now ...

If you get to the point where you don't care, then there is no need to control anything.

Stephen Nagler

 

I can see that, I'm to a point where my tinnitus doesn't give me depression or anxiety like it did the first couple of weeks. I can't say that it doesn't bother me though. I hope that one day, I will truly be able to let go of it. It's hard to imagine how people with really loud tinnitus don't let it bother them.

 

That's exactly how I felt, @MattK. Exactly.

I tried, but I could not figure it out on my own. So, I cheated. I sought out a knowledgeable and experienced tinnitus clinician, who evaluated me and based upon that evaluation recommended TRT. I followed his recommendation, and I am fine now.

Stephen Nagler

 

As is so common on this site, this is another great discussion and a classic example of how many people's viewpoints enrich and broaden a particular subject/angle...Here of course, the subject being tinnitus, and living with the darn affliction.

However, I do have a small axe to grind on this thread...

Yes, adaption or habituation is indeed a fact. I have no doubts about that as have experienced it clearly three times over my life. Those examples of the windshield wipers being on and then only noticing when they squeak, or the rain stops, and putting your pants on and forgetting them until you take them off to go to bed, etc. are fine analogies. I have no issue with that. It's indeed what I conclude happens to the vast majority of people who get tinnitus. (We all know the stats. for the overall "tinnitus population". With or without "treatment" 80% or whatever just "get used to it").

OK. My issue is: What if the darn wipers are always squeaking and the pants are itchy???!!! It is MUCH harder to ignore them. Believe me, on stage four ramp up in volume, I have "itchy pants tinnitus" big time. Eventually I may be less aware of them but it's been a year and a half and even with all my tinnitus adaption experience it is still not a helluva lot less itchy!

Plus there is the "being alive" problem...

Ahhhh, well you see, by being alive there is this requirement to go to the grocery store and get food. Or to the bank. Or the library to get my "distraction-escape" materials. Or the darn lawyer to figure out a divorce settlement. Etc., etc. Just normal 'living requirements' stuff. I am NOT talking about that thing...what was it called??? "Enjoyment"? "Fun?" Something like that...Not movies, or restaurants, or meetings, or dancing, or theater, or classes at the local college...That's waaaaay too dangerous. "Reclusion" is much safer and just doing the absolutely necessary.

Why?! The why is because when I am alone at home for many days I begin to "adapt" and indeed become a little less aware of my tinnitus = the "habituation" aspect of this discussion. You see, books don't suddenly sneeze a few feet behind you. Or free-range kids in the natural foods store don't suddenly erupt around an aisle and scream at their mom (who never taught them to be civilized - sorry!). Or the bloody Dodge Ram that starts it's clanking engine just as I happen to walk past. And...well you get the idea. And yes, it immediately "zaps" me and spikes my tinnitus, and I curse, and I wonder how long it will stay up for as it was/is already too darn loud!!! And I put my plugs in and get home as quickly as possible.
So much for the mantra of: "Expose yourself to sound to help you become less afraid and to adapt, and your ears and brain need it...blah, blah, blah."

So if you are still following all this, what is the obvious answer?!

Well, seeing as I have to go out, the answer is to "pre-protect" before I get into a zap-prone environment...which is just about ANYWHERE HUMANS EXIST! A wee problem don't you think?! Kinda hard to adapt except when "home alone" - which has it's limitations as I gave up the desire to be a monk in a cave in the Himalayas in my late 20's. BUT...the problem with pre-protection and putting plugs in, is that when plugs are in the internal experience of the ringing is of course much louder. And oh fun, fun, fun...the tinnitus brain of mine then "remembers" that and the volume is louder for quite some time after I remove the plugs back at home. So I sit with louder ringing for my troubles until it calms down (the dumb-brain?), or a night's sleep brings it back to baseline, which = LOUD AS HELL. Of course, with 'jump up in volume number three' in 2012 it never did come back down. So yeah, you guessed right, I have some concern about this little factor.

To conclude. What has been missing from this thread is the fact (to me anyhow) that VOLUME and a smattering of hyperacusis (quite common with tinnitus) makes a good bunch of this adaption discussion a lot more "theoretical". And remember, you are talking to an experienced adapter here. Thus I am squarely going to throw my challenge sword on the ground in front of whoever and say (to borrow one of Neenies' excellent no holds barred descriptors):

WE NEED A F...ING CURE!!!

Have a nice day... Zimichael

 

@Zimichael -

You raise many interesting points in your post. I will address just a few.

You wrote:

Here of course, the subject being tinnitus, and living with the darn affliction.

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

I rather like the concept of living without tinnitus instead of living with it. By that I mean, you are the only one who hears your tinnitus. In fact, the only way you learned you had it in the first place is because you heard it. Well, since tinnitus is a subjective symptom (like, say, an itch), during the times you are for whatever reason unaware of it, you don't have it! Same with the itch. You will still have chickenpox whether or not you are aware of it. But when for whatever reason you happen not to be aware of the itch that is caused by the chickenpox, you are not itching. Thus, anything you can do to decrease the time you are aware of your tinnitus, increases the time you are living without it. That's how I have come to see it, anyway.

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

However, I do have a small axe to grind on this thread...

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

Why waste a moment of your time grinding small axes? I'm dead serious, Zimichael. Grind the big axes that need grinding - and to hell with the small axes. If you spend all your time grinding small axes, you will have precious little time left to enjoy the many pleasures life has to offer. I used to try to grind every small ax that came my way. Now I say, screw it.

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

What if the darn wipers are always squeaking and the pants are itchy???!!! It is MUCH harder to ignore them.

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

Ignore them? It takes effort to ignore something, Zimichael. Habituation is a passive process. There is nothing passive about ignoring! But that point aside, where does it say that any of this is supposed to be easy?

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

WE NEED A F...ING CURE!!!

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

And what do you propose we do until the day of that f...ing cure arrives? Just because we have tinnitus, that does not mean we must suffer from tinnitus. For me, long ago I decided that I am not going to suffer even one more day than is absolutely necessary. That's where habituation (TRT in my case) came into the picture. What you decide to do about your suffering, well the ball's in your court on that one. There's lots of help and guidance available, my friend, but in the final analysis it's up to you.

All the best -

Stephen Nagler

 

MattK, there are other things we can do about tinnitus rather than cope with it. But coping with tinnitus may be one step along the way for a number of us. Habituation is often described as an end state, but it is more of a process, like points on a compass. Part of the process for a tinnitus sufferer may entail going from a position where we initially feel helpless to a position where we feel a small measure of control. Rather than feeling overwhelmed by tinnitus, we may feel we are coping with it some of the time.

I think you are describing a natural progression from one state, where you felt depressed, anxious, and suicidal, to another more hopeful state where it bothers you, but not to the degree it once did.

As you continue to make progress (and in reading some of your posts, I think you will) you may find yourself moving from coping with tinnitus to another state that doesn't require much thought or effort.

here2help

 

Zimichael, dude I am with you, we do need a cure!! I have for the most part "habituated", but I would still love for the ringing to stop!! It sucks! Rally your friends and family and co-workers, send them to:

https://www.indiegogo.com/projects/...onsible-supportive-inclusive-community-driven

Lets join together to work towards a cure! Join the ATA.

I really hope you find some relief soon and some peace!!

 

I sound like a broken record (remember those?), but we see and hear and feel very little of what our sense organs pick up. Our brains are smarter than that. Before we evolved into the brainy types we are now, we could see and hear but were not "aware" of it. But our primitive brains could still figure out a few essential things it had to respond to.

Those circuits--greatly enhanced--are still there. A lot of filtering takes place in perception.

As Stephen described, I notice my tinnitus, but I don't do anything to make it fade away because it doesn't bother (or interest) me. So the filters in my brain figure it is boring and fail to put any of my attention on it.

If it helps to think of this as some kind of "ignoring," my internal filters--because I am not interested in the tinnitus--decide automatically to ignore the tinnitus and they fail to shine the light of attention on it, making me become unaware of it.

I don't ignore it, but an internal mechanism leads to the same result.

Jim

 

I am a layman on tinnitus knowledge and research. Perhaps some of you can explain this better. Why is it so hard to pin-point what internal process(es), nerve organs/structures, or bio-chemical reactions, or what-have-u inside our body that can cause or aggravate tinnitus? Try to think like a Scotland-Yard, Charlie-Chan or Magnum PI, these are the evidences in front of the detectives and logically they slowly point to a certain suspect. We have members saying the evidences of things which can worsen their T, like stress, out of sleep, wine, coffee, MSG, nutritional deficiencies, taking the wrong medicines, barometric pressures, acoustic trauma, damaged hair cells, hearing loss, blood pressure, jaw movement, TMJ, etc. etc. (you can add to the list). Some members say their T is pulsatile, cyclical as if on a time clock, ringing loudest upon waking up, etc. etc. So why it is so hard for those researchers who know how the body organs work to link these evidences to a culprit or to a narrow list of culprits? Whatever it is the end result is hearing a sound at a level which was not there before. Whether it is intrusive or not is not the issue. That just determines the level of suffering. But something went wrong causing the sound to fire up to a level , and that these things (the evidences) must have caused some unbalance somewhere to some organ(s), some process(es), some bio-chemical reaction(s) which can cause the sound to go up and down or go cyclical or stay the same 7/24. Or that there is only one biological switch which can be switched on by various causes? If so, have they found this switch and explained how it works? I am an IT guy of logics. This T cure thingie seems so illogical to a layman like me. Perhaps we need some detectives or IT guys to help out the researchers. LOL. Just kidding. Are the causes of this tinnitus sound really so complex (like the causes of cancer) that it seems futile to get to a cure?

 

Stephen/Dr. Nagler...

I don't think you are reading my post accurately. Of course I have "adapted" when I am so engrossed in a book that I "forget" my tinnitus. Agreed.

My whole point is, I have the REST/OTHER PARTS of my life to deal with! That is the worm in the ointment, or the soup , or whatever.

I do a pretty darn good job actually as I have not been down to the gun shop to get a Glock and stick it in my ear. And indeed I do all I can to stay positive and be aware of how to survive in this game without constantly getting "spiked". But like I said, getting zapped is just part of being in the "outside world" unless I use plugs, and using plugs causes their own problems...A fantastic darn "CATCH 22" if there ever was one.

What am I meant to do, be a happy carrot, be an idiot and get a FOURTH jump up in volume???!!! Unfortunately that is all too possible. Why would I believe otherwise after hard proof of it three times and "adapting" pretty fully three times? (The last time took 6 years). The bloody volume level now makes it a lot, lot harder I can assure you. Pain is a pretty pertinent teacher and it "pains me" with anxiety when I get spiked and I never know if it is another new level up...NO WAY I CAN GO THERE!!!

TRT and all that stuff is old hat. I don't think you realize there are limitations to how far that can go or how many things I have tried. There is plain old DAMAGE that occurs, irrespective of my viewpoint. Indeed I deal with my "suffering" by avoiding the world mostly...Not exactly a great experience but presumably preferable to the "Glock Cure"!!!

Let me ask you...If every time you walked out your door to interact with the wonderful world, and no matter how smart you became, or prepared you thought you were, but some "Ninjazaaamoid" found a way to kick you in the kidneys from behind...Ummmmm, do you think you would adapt??? [Coats of Kevlar armour not allowed]. You just have to take it...by surprise...when you least expect it.
Do you maybe think you would go out a little less so that your kidneys would not rupture after the n'th kick??? [Remember "Ninjazaamoids" are never seen and never avoidable once out the door].

Have a nice day out there.

Best, Zimichael.

 

Hi @Zimichael -

Regarding your kick in the kidneys analogy, of course I would not adapt. Nobody would. But fortunately for tinnitus sufferers, the neurophysiological pathways for smell, touch, taste, vision, and hearing are largely distinct from the pathways for pain and temperature. One might tolerate pain to a certain extent, but one rarely habituates it. Not so with olfactory, tactile, gustatory, visual, and auditory stimuli.

But let me turn to something else you said: "TRT and all that stuff is old hat." Perhaps you could share with us the name of the clinic where you did your TRT, your TRT category, how long you followed the protocol, and how many TRT counseling sessions you had.

Thank you.

Stephen Nagler

 

Stephen...

First up, you know that I have covered some of this in our "conversation", but as this is a public forum I will add.

You are correct. I did not do an 'official' TRT clinic thing. There were a number of problems/issues with that in 2006-2007.

One... I was broke. I had exhausted most of my money on endless medical bills and years of tests and treatments for my undiagnosed, long term, "Lyme Disease type" illness. One of the treatments for which being the Neomycin and Amphotericin (presumed SIBO and then Intestinal fungal infection) that gave me that third tinnitus ramp up and the hyperacusis....thank you very much!

Two... I live out in the hinterlands. There were no treatment centers or certified practitioners anywhere near me that made it feasible. A horrendous commute through 240 miles RT of bumper to bumper traffic (on this joke called a freeway) may have been possible, except that I could not get in a car for more than short periods as the road noise even with full 100% blocking earplugs and muffs was too much for me. The ringing went up. I fell apart. I was suicidal within 15 minutes.

Three... Two very good audiologists (one in my town and one in a bigger city I managed to get to less than an hour away) evaluated me and the options. I did the high tech hearing aid trials specifically geared to my tinnitus frequencies; masking; noise generation; etc. and they all made me freak. The hyperacusis was so severe it made any noise very traumatic. I tell you it was insane, I don't know how I survived that period. I of course got counselling (not TRT certified) from the audiologists' and they pretty much thought I was better off waiting before trying to attempt anything more (let alone the travel problem).

Four... I studied Jasterbroff and as much info on it as I could find online within my exhausted and ill state of being. I made copies of audio I could tolerate and did my own 24 hour a day 'sound enrichment' program. Slowly. At my own pace. With sounds that did not increase my anxiety levels. I mounted small speakers either side of my bed, etc., etc., etc.

Five... I quit all medications. The last straw was an IV that was meant to supplement the procaine injections that were administered to try and reduce the tinnitus (my doc felt absolutely terrible that he had been responsible for the drugs that gave me the new damage, so I got a lot of "feebie, guilt care" for a while)....Anyway, after the IV near the end of the day I stumbled back from the IV room and threw up all over his carpet. The poor guy had to stay at work well after 7:30 pm at his office with me, to make sure I recovered enough to get into a car ride home. But that was my Rubicon...ENOUGH, JUST LET ME DIE!
I mention this as when I quit all medications, some of my 'other symptoms' (migraine type headaches, nausea) slowly started to go away and as a result it was a little easier to not be quite so hammered by the tinnitus/hyperacusis.

And so on....To cut a long story short, my own hearing therapies? (protection, rest, sound generation, high saturated fat diet - don't ask!, gentle music, etc.) and TIME seemed to be working pretty good, so I decided to skip the TRT proper step. Plus had reviewed a number of "tinnitus treatments" out there and had become more and more nonplussed. There seemed to be believers and non-believers of every stripe for every option. So I just kept doing my thing.

As you saw from the video I sent you, it was pretty darn successful! I went from a complete and absolute mess to dancing "Gangnam Style", on stage, with all those great young people, in basically six years. I call that "successful adaption". I'm not sure doing official TRT would have improved on that...and just doing it may have harmed me more as each trip to a certified practitioner would have 'killed me'. Maybe literally. (Let alone the fees they wanted to charge back then!).

So there you have a very, very brief synopsis...Saying TRT was "old hat" was unfair of me, and I was too loose in my language. Indeed I even plagiarized from Jasterbroff's model. More what I meant was I looked into about everything feasible at the time and evaluated a lot of stuff. I was certainly not at all ignorant of it and what it proposed to offer. And the audiologists I saw did not seem overly optimistic about it for me, so I guess that reinforced my attitude. However, I gather it helped you a lot and that is great.

As a final comment (that is probably going to piss off some people royally)...Tinnitus is not that bad to deal with and live with. It's the bloody hyperacusis that makes it SO much worse, when they work in tandem. "Just tinnitus" is eventually pretty 'habituatable' to, and your mantra about "if you don't notice it it's not there" is more valid overall. With the combo I beg to differ...and this is 58 years of tinnitus speaking here, AND tinnitus that is louder than anything, any time, anywhere ...except for a few feet away from a plunging bath tap blasting water into a bathtub. My California grade water-saving shower head does not quite do it! It is LOUD tinnitus, I can assure you.

Like I said.... WE NEED A F...ING CURE!!!

Best, Zimichael

 

@Zimichael -

I am not intertested in arguing with you. I can do that with my son any time.

All I am saying is that you are on very thin ice when, having never set foot in a TRT clinic and (clearly from your posting) do not understand the model upon which TRT is based, you state that "TRT and all that stuff is old hat."

Best to you and to all -

Stephen Nagler

 

Thanks for the thought, and your encouragement. Honestly, I think there might be some issues over semantics on what is considered "coping" (and it could very well be my fault, perhaps I am using the word in an unorthodox manner). I believe that you're going through a habituation process that gives you hope of being able to live with your tinnitus, then you are going through a coping process in my opinion.

In Dr Nagler's "Letter to a Tinnitus Sufferer", he describes an exercise of essentially making yourself realize that your tinnitus isn't affecting you or your loved ones as badly as you think it is. I view this as also a method of coping. Perhaps I am using the word wrong, but either way, I truly do believe "coping" must come first otherwise you'll be insane before you habituate.

 

Zimichael, I totally get your frustration, and I would like nothing better than for there to be a cure. But at the moment, there isn't one, and there isn't anything we can do about that right now. Right now, all we can do is face reality that our tinnitus might not be going anywhere, but that doesn't mean it needs to drive us insane.

 

@MattK -

However you choose to view habituation, it happens for some over time. But for some it doesn't seem to happen over time. That's why it helps to have a strategy for inducing or facilitating it.

Until there's a cure, that is.

Stephen Nagler

 

I agree. There may be a cure some day, but that doesn't mean it would be within our life time. But, after I get my wisdom teeth out this Friday, if that doesn't help it, then I am going to be working with an audiologist who specializes in tinnitus treatments.

 

@MattK, you are using the word “coping” just fine.

I pulled out my copy of Webster’s Third International Dictionary tonight to look up the word. To cope is to “maintain a contest, or combat, usually on even terms or with success.”

To cope is also to “face or encounter and to find necessary expedients to overcome problems and difficulties.”

Converting tinnitus into something that no longer affects us may begin in helplessness and, over time, arrive at indifference. Along the way, we may move from feeling perpetually overwhelmed to "facing" tinnitus and taking steps to overcome it, inch by inch. While it is true that a large part of habituation occurs outside of our conscious awareness and intention, when a person has been in a dark place and finally sees a little bit of daylight, what happens next can be very conscious and deliberate. It was that way for me.

I was miserable at first. When I saw a sliver of daylight, I strongly felt I was in a sort of contest or active combat, only I was contesting the prevailing winds of my own thinking. I remember that period as one that was full of active effort, but it led to another phase where I adopted a strategy that required considerably less effort, which in turn led how I feel about tinnitus now: something that requires no action, no effort, no struggle, and no acceptance.

here2help