Poll of Everyone's Tinnitus Levels

[object16]

Hi, my tinnitus a year ago was at 48 dB, and now I am sure it is significantly louder than that, at around 4000 hz. I just wonder what kind of tinnitus levels people are getting on this forum, to give me an idea about what amounts of loudness it is possible to cope with. 2 months ago i had a ferocious tinnitus spike due to dental work noise, and it must have been at least 60 dB, although i did not actually measure it. it was just a horrible screaming screech, which now two months later has tamed down to probably around 52 - 54 dB I would guess.
So does anyone have any measurement of what they have to cope with? thanks.

 

[Markku]

Interesting thread, object16.

My tinnitus loudness hasn't been measured. Based on how I can hear it above music etc., I have some estimates.

Anyhow, it's important to make clear the difference between dB and dB SL when it comes to tinnitus loudness matching.

The below is a direct quote from here.

Tinnitus loudness matching
There are two ways to look at the loudness match.

One is in dB, the number that shows up on the audiometer gauge in front of the audiologist at the moment that you, sitting inside the booth, indicate that the sound you are hearing through the headphones (working slowly up from 0 dB) is as loud as your tinnitus at the tinnitus frequency (pitch). Lets say that Fred and Bill both have tinnitus that measures 43 dB using this method.

The second is in dB SL - dB sensory level.

OK. Fred has really good hearing at the tinnitus frequency, a threshold of 0 dB. But Bill, on the other hand, has a 40 dB threshold of hearing at the tinnitus frequency. That means that he does not hear he first 40 dB of sound introduced to the booth. Fred goes first, and at 43 dB he indicates that the sound he hears through the headphones is as loud as his tinnitus. Next comes Bill. The audiologist starts increasing the volume of the sound being introduced to the booth. 10 dB. 20 dB. 30 dB. What's Bill doing? He's still waiting for the audiologist to start the test! When the audiologist gets to 40 dB, Bill finally hears the faintest sound through the headphones. (Remember, at 40 dB Fred was already hearing a very loud sound through his headphones, but it still wasn't loud enough to match his tinnitus!) Back to Bill. At 43 dB (a mere 3 dB over his threshold of hearing) he indicates to the audiologist that the sound he is hearing though the headphones is as loud as his tinnitus.

So both Fred and Bill have a 43 dB tinnitus loudness match, right? But clearly Fred's tinnitus is much much louder than Bill's. And the only way we would know that from the loudness match would be by taking the threshold of hearing into account. That's what dB SL does. It subtracts the threshold of hearing from the loudness match in dB. So Fred's tinnitus is 43 dB SL, while Bill's is 3 dB SL.

Please note that I chose these figures for illustrative purposes only - as a tinnitus loudness match of 43 dB SL is almost unheard of. In fact in 70% of cases the loudness match is 6 dB SL or less.

Please also note that neither dB nor dB SL correlates well with how loud you judge your tinnitus to be on a 1 to 10 scale. But that's another story.

Hope this helps more than confuses.

 

[object16]

Hi, thanks, I was wondering about that, so my hearing is 30db down, and the tinnitus is coming in at 50db, so that means it is relatively 20 db. which i guess is pretty loud, because you're saying 6 db or less is more common.

 

[Leah]

Appt Tuesday wonder if they will measure. I call it tea kettle whistle loud.

 

[Erlend]

Water barely dripping from the tap in my bathroom masks my T completely. Minimal amount of water coming from the tap while still being a continous stream. So I guess mine isn't very loud. Very high pitched though, can hear it on the subway.

 

[JTP]

For me the main source of distress is that so few everyday sounds mask it. Whether it is because of loudness, pitch or hearing loss, does it really matter ?

 

[object16]

Hey, that's also my problem - I used to be able to use Restful Rain pink noise/white noise, and it was pretty effective. Now, it is a lot less effective because my tinnitus has ramped up and spiked. Fortunately, it is a lot better now than 2 months ago, when i was ready to call it quits at my job and throw in the towel, and probably headed for a pine box soon. But I have at least some improvement, so there is no real need for a pine box solution, but however i would be a lot happier if my tinnitus was quieter. It is interesting and beneficial to hear from the people that have it really really severe and still hold it together -

 

[JTP]

In time brain will adapt for survival because it does not want the pine box either We'll be fine, wait and see. Oh, and I refuse to call mine really, really severe, stupid little beep/noise/nonsense it is.

 

[Eric]

I never thought of having my T measured by my audiologist. But I have done some tests. With good hear buds, download this file on an ipad (I use the Ipad 2) and put play it at 3/4 of the maximum volume and this is the strength of mine.

http://www.ata.org/sites/ata.org/files/media/ATA_Tinnitus_Screeching_Tone.mp3



Note that since this is a complex Tinnitus (not only one frequency), T is almost all I hear in my left ear, up to 85-90 dB.

When I take a shower, I can hear the water drops land on my shoulder. This is all that Tinnitus left me but it is soothing.

 

[Gio Makyo]

At least two tones in each ear, 50-60 dbs. Hear it above conversation on most days. Haven't been able to listen to anything loud enough to properly mask it yet due to hyperacusis. Shower is my only friend.

 

[ampumpkin]

My T seems to be between 50 and 60 db.

The problem with it is that it reacts to some sounds... so even thought I am around loud noises, above 60db, I can hear my T super loud in my head, like a frying pan. Cannot be masked.

I am almost 100% habituated to this new louder T that I have since May (T sufferer since 2007)... The reactive component has gone down also. I don't use masking anymore to go to bed and I am generally feeling a lot better.

But my T is still between 50 - 60db. Is that loud?! Not sure...

 

[Larry OT]

This morning I went from zero to 75 db by afternoon.
That was a first. I wish I knew the brain chemicals pushing that around.

Does anyone mask with earbuds or in ear sound maskers during day?
If so, what do you use?
Thanks

 

[jazz]

I am almost 100% habituated to this new louder T that I have since May (T sufferer since 2007)

@ampumpkin I'm so glad you're doing so well! When you say "habituate" what do you mean? I ask because it means different things to different people. So, do you not hear your tinnitus (unless you seek it out)? Or do you hear it, but don't react to it? What about when it gets loud from environmental noise?

I'd really appreciate your insight! Thanks!!

 

[Martin69]

This is not me, but my T:



Sometimes a little bit more fluctuating, sometimes higher.
But it more or less matches what I hear.
As he said at the end: Every second, every minute, every hour, every week, month and year - until the end of my life.

 

[ampumpkin]

@ampumpkin I'm so glad you're doing so well! When you say "habituate" what do you mean? I ask because it means different things to different people. So, do you not hear your tinnitus (unless you seek it out)? Or do you hear it, but don't react to it? What about when it gets loud from environmental noise?

I'd really appreciate your insight! Thanks!!

Habituation, in my case is not "hearing" it unless I seek it out.

In 2007, when T started, it was loud (from my point of view). As time passed and I started caring less and less, I also started hearing it less and less. My brain brought it to the back of my mind. And the volume went down. I am sure my brain has something to do with this. As the years passed, T was there if I looked for it, which I almost never did. My T started reactive at the beginning but as I habituated (stopped looking for T, stopped listening to it), the reactive component went away completely.

In 2014, when T increased, my brain brought it back the front of my mind. I was under the impression that it was louder. I listened and looked for it all the time. I plugged my ear 100 times a day to see if my T had increased....

Fast forward 5 months, I'm almost at the same point as a I was before the increase. It looks like the volume has gone down but only in the past month or so (since I ran half a Marathon). I almost never hear my T because I almost never look for it. If I do look for it, it sounds much louder than from 2007-2014...but I don't look for it.

If I happen to hear my T, I put back quickly in the back of my mind. For example, I went out to a restaurant on Saturday. The music was very loud, VERY loud. It caused my T to increase. Do I care? No. I'm having loud days and I simply do not care. But if I look for my T, I can tell that it is louder than before I went out to that restaurant. It has happened to me before and the T went back down. So because I know it will go back down again, I chose not to give it too much attention. Also the reactive component to my T has gone down a lot...not completely gone but almost (remember, certain sounds made a frying pan sound in my heard which was unmaskable)

I am stressed and sleep deprived and it doesn't have any impact on my T.

I now sleep without masking.

Since I ran half-Marathon at the end of September, my life has changed. It was one of the hardest physical challenge of my life. Now I know that I can do ANYTHING. From that day, I started "hearing" my T less and less.... I said to myself on that day: if I can run for that long, I can live with a louder T.!! Screw T!!

So all this positivity in my life has changed the way that the circle was running. Before, negative thoughts were marking the circle turn in a bad way, making T louder and making its impact on my life bigger. I have decided that the circle needs to turn the other way. Positivity makes me feel happier, which makes my mood better, which makes my T lower because I focus my attention on everything else but T.

Sleeping without masking was a big step. It took me 2-3 days to get used to it and now, no more fan, nothing. I feel like myself again, I feel happy!!
So it's hard for me to tell you if my T is lower or not. I really think that the key point here is the brain. T itself is not lower but because everything around T has my attention, my brain puts it in the back, far away from my consciousness.

I also do not look for T anymore in the morning. My day is gonna be a great day, loud T or low T!!

I am not better than anyone else but I needed to change my attitude. I was feeling miserable because of T and I just couldn't go on living like this.

I say that my 2nd habituation process is not over yet because I still hear my T sometimes even when not looking for it... but soon, I aim to NEVER hear it, never look for it and never care about it, like it was from 2007 until 2014.

Don't hesitate if you have other questions. Always there to help everyone with their habituation process.

Anne-Marie

p.s.: wish me luck!! Next Sunday, I am running a 2nd half-marathon. I CAN DO ANYTHING!!!

 

[David J]

Wow.........what a great attitude! You captured EXACTLY how we should deal with our "T". I have never had mine measured....nor have I ever gone to a professional. As we have all learned here, there is noting they can do, so why bother! Mine is loud........really loud......all the time....constant! I have a similar attitude to the Canadian pumpkin! Perhaps not quite as good, but as far as I'm concerned, that is the "only" way to deal with it. At least for now.

I wish you the best of luck with the run, Pumpkin!!!

 

[Marlene]

How sad that video is Martin ,I've just watched it ,even with having this ,I consider myself in one way lucky I can sleep without needing ,fan - fans on ,plus the sound box .
Now my unlucky situation ,is having the balance and T going 24/7 .the only time in my day I don't have balance is when I sleep ,so both situations are equally as bad ,
I wish politicians could see this video,well better still forced into seeing how this one person alone has to live life daily ,how many of them could do it and do nothing .Easy to stand by and do nothing if you don't have it going on .
Glad you put it up .

 

[Martin69]

Habituation, in my case is not "hearing" it unless I seek it out.

In 2007, when T started, it was loud (from my point of view). As time passed and I started caring less and less, I also started hearing it less and less. My brain brought it to the back of my mind. And the volume went down. I am sure my brain has something to do with this. As the years passed, T was there if I looked for it, which I almost never did. My T started reactive at the beginning but as I habituated (stopped looking for T, stopped listening to it), the reactive component went away completely.

In 2014, when T increased, my brain brought it back the front of my mind. I was under the impression that it was louder. I listened and looked for it all the time. I plugged my ear 100 times a day to see if my T had increased....

Fast forward 5 months, I'm almost at the same point as a I was before the increase. It looks like the volume has gone down but only in the past month or so (since I ran half a Marathon). I almost never hear my T because I almost never look for it. If I do look for it, it sounds much louder than from 2007-2014...but I don't look for it.

If I happen to hear my T, I put back quickly in the back of my mind. For example, I went out to a restaurant on Saturday. The music was very loud, VERY loud. It caused my T to increase. Do I care? No. I'm having loud days and I simply do not care. But if I look for my T, I can tell that it is louder than before I went out to that restaurant. It has happened to me before and the T went back down. So because I know it will go back down again, I chose not to give it too much attention. Also the reactive component to my T has gone down a lot...not completely gone but almost (remember, certain sounds made a frying pan sound in my heard which was unmaskable)

I am stressed and sleep deprived and it doesn't have any impact on my T.

I now sleep without masking.

Since I ran half-Marathon at the end of September, my life has changed. It was one of the hardest physical challenge of my life. Now I know that I can do ANYTHING. From that day, I started "hearing" my T less and less.... I said to myself on that day: if I can run for that long, I can live with a louder T.!! Screw T!!

So all this positivity in my life has changed the way that the circle was running. Before, negative thoughts were marking the circle turn in a bad way, making T louder and making its impact on my life bigger. I have decided that the circle needs to turn the other way. Positivity makes me feel happier, which makes my mood better, which makes my T lower because I focus my attention on everything else but T.

Sleeping without masking was a big step. It took me 2-3 days to get used to it and now, no more fan, nothing. I feel like myself again, I feel happy!!
So it's hard for me to tell you if my T is lower or not. I really think that the key point here is the brain. T itself is not lower but because everything around T has my attention, my brain puts it in the back, far away from my consciousness.

I also do not look for T anymore in the morning. My day is gonna be a great day, loud T or low T!!

I am not better than anyone else but I needed to change my attitude. I was feeling miserable because of T and I just couldn't go on living like this.

I say that my 2nd habituation process is not over yet because I still hear my T sometimes even when not looking for it... but soon, I aim to NEVER hear it, never look for it and never care about it, like it was from 2007 until 2014.

Don't hesitate if you have other questions. Always there to help everyone with their habituation process.

Anne-Marie

p.s.: wish me luck!! Next Sunday, I am running a 2nd half-marathon. I CAN DO ANYTHING!!!

Hi Anne-Marie,
It is great reading about your progress.
I guess it is really key, not looking for T, not giving it any importance.
Difficult and probably taking longer for loud, high-pitched T. But I hope it is also doable for loud T.
Wish you all the best. I am sure you will make it.
And good luck for your run.
Martin

 

[jazz]

@ampumpkin

Thank you, thank you, thank you! You really made my day! I still hear my tinnitus after two years, and I often wonder if I'll ever habituate. But your story is very inspiring! Maybe I should also challenge myself physically as an ego-booster!

I wish you the BEST of luck with your 2nd half marathon! But, not matter what, you are already a true winner!

Take care, Anne-Marie!

(And I might ask you a question later, but for now, your story has just inspired me!)

 

[Zimichael]

@Martin69 ...interesting video, but geeeez I would not be able to do just about everything he does, except the sleep hassles (though think my sleep issues are more related to 'getting older' not my T - though hell, I may actually sleep better in 'silence' but it has been so long I would not know). Being around kids like that! Or the restaurant! Or the movies??? Surely he had plugs in - but does not mention it? NO WAY I could be anywhere near any of all that without plugs in...and then the T volume just goes up and up so becomes exhausting until I take them out and it goes back to baseline = very loud.
Sigh!...Looks like a "life", though of course I don't want anyone to have T irrespective of volume and reactivity.

@ampumpkin ...Anne-Marie. Hey just wonderful that you are getting to where you want to be! However, as you say to go ahead and ask questions I have one for you. (Sorry @jazz not intending to rain on your parade!)

Are you not concerned that you may get more T, or more volume if you expose yourself too openly to sound?
Now I know this is tricky, because indeed I have been at that place fully, twice, where I did not care about my T and it had no real effect on my life. The third time I had to adapt was not so easy as the reactivity was new to me and I would get zapped readily for 3 to 4 years. By 6 years I was mostly OK but still "very sound aware" as I had learned that I had to be - much more so than just the prior 'good prevention' of wearing ear-muffs if driving loud equipment, and avoiding crazy discos, etc., etc.
However, even with that "sound awareness" I got permanently zapped again. So four times in my life with successive higher T volumes and > reactivity (H. I guess - but other posts on that). This last time it has been much harder to adapt to as volume is just so loud and reactivity is intense. Plus if anyone says this is 'normal T" they have no idea what they are talking about. The 80% plus majority of people with new T that go on and live normal lives was who I was at stage 1 and stage 2. Not stage 3, and certainly not stage 4. Quality of life has been severely curtailed due to what I can do without need for plugs (= OK for very, very short term use only). Plus I don't see most chronic T folks posting they have multiple stages of permanent > T volume...thank goodness.

So there you have it. You have had two levels of T. Though you say: In 2014, when T increased, my brain brought it back the front of my mind. I was under the impression that it was louder. I listened and looked for it all the time. I plugged my ear 100 times a day to see if my T had increased....
Now I do not at all do the "checking" to see if it is louder and hardly ever have (I have had T so long I know where it is at automatically). Nor does my mind now bring it to the front of my mind...until I am out my door and in the realm of humans! Then if I am not paying attention I get zapped, spiked, etc. and if it lasts very long, yeah the fear starts after a while as I wonder: "Is this level 5??? Did I do it again???" I mean how could I not if I have objective experience of 'permanency of louder t levels'? [I can clearly recall all the levels as to where I would not be able to hear my T as it was "masked" by the environment/sound level/situation]. However, even with that experience I also have the experience that it takes quite a "hit" to cause "permanency" and I do a pretty good job of avoiding potentially that kind of situation, but it does require a pretty high degree of isolation.

In the end though, I know, viscerally, that I could get even louder T than I have now...and that is not a pleasant thought. Most of 2013 I was keeping myself away from gun stores and extremely stressed by the new level. Can you imagine the "if only's" aspect of taking 6 years to get back a degree of my life just to lose it again? It was really hard. And now in maybe 6 more years I will be at a place (but with louder T for sure than before) where maybe I can attempt some inroads into normalcy - like dinner with more than one or two very well behaved friends who warn me if they are going to cough...IF I don't get permanently zapped again.

Sorry a bit long there as always with me, but that's the picture. That's the question. Do you even think about that? Are you more "sound aware" and "sound pro-active" now that you know you can get more than just a temporary short-lived spike? I am NOT looking for sympathy or "fix it's" here, I know where I am at with that, I am genuinely interested in how someone with more than one level of T experience, 'experiences' the sound world.

And just great you can do that marathon! All the very best...

Zimichael

 

[David S]

My T is really reactive. If am in a silent room and compare it with a tone presented in my T free ear i would match it to 15db but still i can hear my T clearly over 75db. Kind of hearing the pulses through. The only thing masking it is the shower. I am aware of my T 95% of the day but it only bothers me 5-10% the day.

Never plug my ears. Way should I? It is never a slightest doubt that it is there loud and clear.

 

[Martin69]

@Martin69 ...interesting video, but geeeez I would not be able to do just about everything he does, except the sleep hassles (though think my sleep issues are more related to 'getting older' not my T - though hell, I may actually sleep better in 'silence' but it has been so long I would not know). Being around kids like that! Or the restaurant! Or the movies??? Surely he had plugs in - but does not mention it? NO WAY I could be anywhere near any of all that without plugs in...and then the T volume just goes up and up so becomes exhausting until I take them out and it goes back to baseline = very loud.
Sigh!...Looks like a "life", though of course I don't want anyone to have T irrespective of volume and reactivity.
Zimichael

So all Ts are different. I doubt he has ear plugs in if he has no H. I myself can go to every place I want.
I avoid loud places (like concerts), but went there seldom anyway. But I sometimes go to football stadium and it does not do anything on my T. I use ear plugs just to protect my hearing.

He "only" has this high-pitched T in his head. Do you think this looks like a "life"?
Sleeping with three fans and a sound machine? He said, he made peace with the noise. With the bed as a battlefield?

I do not need that, I can sleep without background noise.
Nevertheless, this dentist drill in my head every second takes my resources.
My family needs a caring, laughing, happy father. Not someone, who is sad, unhappy, frustrated and with anxiety and depression.

But what choice do I have? I have wife, kids and a mom.

 

[dan]

@Zimichael , I had your "stage 4" T from day one. My normal T is like your T when you wear earplugs.

 

[ampumpkin]

@ampumpkin

Thank you, thank you, thank you! You really made my day! I still hear my tinnitus after two years, and I often wonder if I'll ever habituate. But your story is very inspiring! Maybe I should also challenge myself physically as an ego-booster!

I wish you the BEST of luck with your 2nd half marathon! But, not matter what, you are already a true winner!

Take care, Anne-Marie!

(And I might ask you a question later, but for now, your story has just inspired me!)

hey!! I am curious...what was your question?

 

[ampumpkin]

@Zimichael

You are making an excellent point.

Yes of course I was worried that not caring about my T could expose me to another increase. I lived in fear for the past couple of months, since May actually.

But in the past month and a half, I have stopped living in fear.

It is not easy to describe the process and I know that most may not agree with me. But anyway, I do not fear another increase anymore. I live a normal life, with some boundaries. I will not go to a club anymore... but I think everything else is accessible to me, with some protection.

I went to a concert and to a hockey game. I was scared shitless (sorry). I protected my ears: no increase. I ran along with 15 000 other runners. People chearing and clapping.. no increase. I was scared of running because of the damage it could do to my neck, it could increase my T and well, you know the rest...

I challenged myself. I went down paths I did not want to go. And guess what? No increase.

I feel that it is a matter of making the right choices, for me. I can do mostly anything, despite my T.

You say: "In the end though, I know, viscerally, that I could get even louder T than I have now...and that is not a pleasant thought."

Why do you live like this?? That is exactly how I do NOT want to live. (no offense...)

My T increased because I took some meds that increased it. Had I not taken them, my T would most likely be the same and my life also. I know the cause of my increase. Would I be saying the same thing if my T had increased for no known reason? Maybe not. But because I know what caused T initially (meds) and what caused the increase (meds), I am able to refuse to live in fear of another increase.

Since I've had that attitude, my T has gone down, like I said, probably because my brain stopped fighting it and entered "acceptance" mode. It did the same thing in 2007 when it started.

I realize that not all T's are the same. But I won't lie to you... since I've had that change of attitude, my T has gone down... but the thing is, I don't know if it has gone down or if it's just my brain that makes it fade because I don't fight it anymore. Either way, I almost never hear it nowadays, unless I look for it. Of course, if I look for it, I find it...

Hope this helps!

And NO offense please... I'm just being honest...

AM

 

[Zimichael]

You say: "In the end though, I know, viscerally, that I could get even louder T than I have now...and that is not a pleasant thought."

Why do you live like this?? That is exactly how I do NOT want to live. (no offense...)

Anne-Marie... Thanks so much for replying, and no, no offense taken as I know we all 'present' somewhat differently with T. It's a variable beast.

In relation to your question/point above I would agree with you except for the "body" part! The "why you live like this" is sort of not quite as simple as it sounds, as of course I do not want to live "like this".
I would love to go back to numerous classes at the college, do dance and choreography, go into Starbucks and enjoy a risk free outrageously priced coffee treat, and so on. Who would not want that???

Ummmm, I guess it all boils down to probably two main things (with nuances)...

1. "And guess what? No increase."
2. It hurts, in the nerves, in my hearing, in my head, or somewhere in there?!

The above two things make a huge difference compared to 'nothing happening' or no 'reaction' from the T. Can you see that? Can you understand that? It really puzzles me that I can't figure out how to get these points across, especially as I have had lots of experience (three times in my life) with getting to the place you describe and 'getting away with it' so to speak in noise/sound situtaions. [Check out the video in 'Positivity Thread' of me performing Gangnam Style dance at a show in Nov. 2012 with no plugs in. That is not a person being held back by fear]. Indeed I do not live in fear now, so excuse me if I made it sound like that...I said the "thought" of > louder T is "not a pleasant thought". Yes, I know for sure louder T is a possibility so that makes me live within my limits, and those limits slowly improve over time...Thus the six years I mention. But at my age and the things I would prefer to do that is a long time!

OK so here is the crux, though I think you have maybe answered it...If you get zapped (so not the "nothing happened" thing) and that zap "hurts" and lasts, do you have no concern at all??? Or do you just not get zapped???
For sure if I did not get zapped I would be adjusting much more easily like I did the other times, but this reactivity is a real bugger to deal with. It is not "me" Michael, it is my "hearing apparatus".

I will give you an example. A young dancer I was very fond of died last week and there was a memorial for her in the dance studio we all spent so much time in. Nice big room, high ceilings, and so on (small rooms = more sound bounce-back = harder for me). I had to go. I wanted to go. I knew it would probably require earplugs unless very somber and quiet. For sure it would be quieter than a street market or a marathon with a bunch of people like you described. Clapping just kills me, instantly. Very painful....Anyway, so here I am going out into the world right, and what happens?
There is a toddler in there. Yeah, well you know the rest...Maybe not, as I did not get spiked. My "sense detector" caught it before the wailing cry and I had my Etymotics 25 dB's in. The mother was good enough to take her youngster outside, but just the 'ambient noise' level was way too much and my hearing was getting "affected" within minutes. That 'hurt damaged' feeling...and increasing.
So what do I do here??? What do you do here??? Or am I reading it that this just does not happen to you at all???
What about you @dan if you have this reactivity as continual baseline??? Do you just let it get more "damaged feeling" and then end up with permanent louder T like I did in 2012??? (Remember I did not even realize I was getting hit when my stage 4 happened and was truly being self assured enough to 'not care' - but with foundation, as indeed I had got away with a dance show!). I paid a big price for that.

So Anne-Marie, I think what you are saying is that (as is true for me too), the fear dissipates the longer one has experience of "being OK" within sound situations. This of course makes sense. However, I have not found so far with this jump up in T & reactivity that 'not fearing' has lowered the reactivity. It seems to be just doing its same old thing of dropping about 5-10% per year like it did from 2006 to 2012. I really am not afraid when I am in sound situations (though avoid mostly) as I know absolutely when to put plugs in, and I always have two grades on me. The warning signs are very "feelable". The problem is, that if I use plugs the ringing volume starts to go up, and up, in my head until it is just exhausting and I can hardly concentrate on what is going on. I had to leave that memorial after about 3/4 hour with the Etymotics in. (It is worse with 'full plugs' that block more fully). It took a while once home for the ringing to come down to baseline, and so far it has...but geeeeeez was I wiped out! Good for nothing.

Anyway, I guess I have covered the ground here, though I sure would like to get more dialogue going with people who have experienced this reality of "non one time T that just stays the same no matter what" (like my brother's + mine in stage 1 and 2), and also have this reactivty pain stuff to deal with. Maybe I could get some tips!

Once again, thanks for the response and it is not often I see anyone posting about multi-levels of permanent T so sorry if pestering you here. I am glad for you and indeed it helps to have control and awareness about the meds connection. Ototoxic meds + sound combo is something to really be aware of. I make that point a lot as my 2006 killer T was all ototoxic meds (oral), and the 2012 was stealth sound + also tapering of meds too. I reckon I may have got away with it without those two in concert! But of course do not know that for sure...Sigh.

All the best Anne-Marie, and go get em in the run!

Zimichael

 

[dan]

What about you @dan if you have this reactivity as continual baseline??? Do you just let it get more "damaged feeling" and then end up with permanent louder T like I did in 2012??? (Remember I did not even realize I was getting hit when my stage 4 happened and was truly being self assured enough to 'not care' - but with foundation, as indeed I had got away with a dance show!). I paid a big price for that.

Yes.

 

[Telis]

Anne-Marie... Thanks so much for replying, and no, no offense taken as I know we all 'present' somewhat differently with T. It's a variable beast.

In relation to your question/point above I would agree with you except for the "body" part! The "why you live like this" is sort of not quite as simple as it sounds, as of course I do not want to live "like this".
I would love to go back to numerous classes at the college, do dance and choreography, go into Starbucks and enjoy a risk free outrageously priced coffee treat, and so on. Who would not want that???

Ummmm, I guess it all boils down to probably two main things (with nuances)...

1. "And guess what? No increase."
2. It hurts, in the nerves, in my hearing, in my head, or somewhere in there?!

The above two things make a huge difference compared to 'nothing happening' or no 'reaction' from the T. Can you see that? Can you understand that? It really puzzles me that I can't figure out how to get these points across, especially as I have had lots of experience (three times in my life) with getting to the place you describe and 'getting away with it' so to speak in noise/sound situtaions. [Check out the video in 'Positivity Thread' of me performing Gangnam Style dance at a show in Nov. 2012 with no plugs in. That is not a person being held back by fear]. Indeed I do not live in fear now, so excuse me if I made it sound like that...I said the "thought" of > louder T is "not a pleasant thought". Yes, I know for sure louder T is a possibility so that makes me live within my limits, and those limits slowly improve over time...Thus the six years I mention. But at my age and the things I would prefer to do that is a long time!

OK so here is the crux, though I think you have maybe answered it...If you get zapped (so not the "nothing happened" thing) and that zap "hurts" and lasts, do you have no concern at all??? Or do you just not get zapped???
For sure if I did not get zapped I would be adjusting much more easily like I did the other times, but this reactivity is a real bugger to deal with. It is not "me" Michael, it is my "hearing apparatus".

I will give you an example. A young dancer I was very fond of died last week and there was a memorial for her in the dance studio we all spent so much time in. Nice big room, high ceilings, and so on (small rooms = more sound bounce-back = harder for me). I had to go. I wanted to go. I knew it would probably require earplugs unless very somber and quiet. For sure it would be quieter than a street market or a marathon with a bunch of people like you described. Clapping just kills me, instantly. Very painful....Anyway, so here I am going out into the world right, and what happens?
There is a toddler in there. Yeah, well you know the rest...Maybe not, as I did not get spiked. My "sense detector" caught it before the wailing cry and I had my Etymotics 25 dB's in. The mother was good enough to take her youngster outside, but just the 'ambient noise' level was way too much and my hearing was getting "affected" within minutes. That 'hurt damaged' feeling...and increasing.
So what do I do here??? What do you do here??? Or am I reading it that this just does not happen to you at all???
What about you @dan if you have this reactivity as continual baseline??? Do you just let it get more "damaged feeling" and then end up with permanent louder T like I did in 2012??? (Remember I did not even realize I was getting hit when my stage 4 happened and was truly being self assured enough to 'not care' - but with foundation, as indeed I had got away with a dance show!). I paid a big price for that.

So Anne-Marie, I think what you are saying is that (as is true for me too), the fear dissipates the longer one has experience of "being OK" within sound situations. This of course makes sense. However, I have not found so far with this jump up in T & reactivity that 'not fearing' has lowered the reactivity. It seems to be just doing its same old thing of dropping about 5-10% per year like it did from 2006 to 2012. I really am not afraid when I am in sound situations (though avoid mostly) as I know absolutely when to put plugs in, and I always have two grades on me. The warning signs are very "feelable". The problem is, that if I use plugs the ringing volume starts to go up, and up, in my head until it is just exhausting and I can hardly concentrate on what is going on. I had to leave that memorial after about 3/4 hour with the Etymotics in. (It is worse with 'full plugs' that block more fully). It took a while once home for the ringing to come down to baseline, and so far it has...but geeeeeez was I wiped out! Good for nothing.

Anyway, I guess I have covered the ground here, though I sure would like to get more dialogue going with people who have experienced this reality of "non one time T that just stays the same no matter what" (like my brother's + mine in stage 1 and 2), and also have this reactivty pain stuff to deal with. Maybe I could get some tips!

Once again, thanks for the response and it is not often I see anyone posting about multi-levels of permanent T so sorry if pestering you here. I am glad for you and indeed it helps to have control and awareness about the meds connection. Ototoxic meds + sound combo is something to really be aware of. I make that point a lot as my 2006 killer T was all ototoxic meds (oral), and the 2012 was stealth sound + also tapering of meds too. I reckon I may have got away with it without those two in concert! But of course do not know that for sure...Sigh.

All the best Anne-Marie, and go get em in the run!

Zimichael

I live in fear now...I didn't at first. I was very very depressed from the noise but wanted to get out and do the things I once did. I could no longer handle the thought of not living my life and letting T take me over completely. Well....for me, now looking back, it was the wrong thing to do. I went out to pubs with no ear plugs, I was told by numerous experts that 70-75db was safe. I played hockey, really pushed back against tinnitus with NO fear because of what I was told was safe by tinnitus experts. My T kept going up up up, new sounds etc, I kept pushing back and living my life. Now I'm to a point where my T is so bad I don't want to even get in my car, or empty the dishwasher (even with plugs). I'm totally crippled at this point. If I was more fearful and less gung hoe I would not be in the spot I'm in now. Sometimes listening to FEAR is a good thing. I can honestly say I wish I listened to my body and the pain that sound was inflicting. This was obviously a warning sign that I just ignored to my detriment.

 

[Zimichael]

@Telis ...Yeah I 'hear you' loud and clear. Really sorry man... However, if things go according to last time it does ease off each year IF one does not get more damage. I would give my eye teeth to be where I just had very loud, constant T, but no reactivity. It was occasionally annoying to not ever have quiet, hear the darn screech louder than conversations, etc. but that almost seems trite compared to this incessant reactivity crap. Can't speak for anyone else but I'm not insane enough to want to have ever higher and higher doses of this stuff. It was bad enough just having "Tinnitus"!

@dan ..."Yes" what??? That you don't care and it just keeps getting louder and louder permanently??? How do you hear anything above that if so??? When I get spiked badly above this level I sort of lose part of my consciousness or something. Like semi 'knocked out' and dazed. Not very functional if I'm in a store or the like, and I get the "Looney Looks" big time...Not that I give a damn about the looks, I just give a darn about being able to drive home without a smash up. Maybe I am more attached to my sanity than you, but you appear to be a compos mentis in your posts and attitude . What's your magic formula, as presumably it was not TRT?!

Best, Zimichael

 

[dan]

@Zimichael , When I first got tinnitus is was masked by traffic noise, now it is heard clearly on top of any environmental noise/man made noise.
Its a thick wall of sound tinnitus type like 1,000 squealing fluorescent light bulbs right in your ears.
So are you saying that your tinnitus makes it hard to actually understand conversations?