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frankie_girl
 #1 

Hello doc, and hi all!

This post is going to be long, so you may consider getting a bite to eat before reading

I have to give you the entire history before I get to the point, as I'm really interested in your opinion on the whole thing.
I'm 28. My story began in Sept 2005. After 4 years of clubbing, I woke up one morning with a hiss in both ears (I always had the post-clubbing ringing, but it normally went away on waking up). It was really low - basically I only noticed it when going to bed. The doc said my hearing was normal, and basically I just had to cope with this, avoid noise and try gingko.
Things were ok for a while - I decided to give up clubbing altogether, since I wasn't enjoying it anymore anyways. I went out a couple of times, but noticed the hiss was a bit louder every time I did, and it stayed on the new level afterwards. I also noticed that in cafes or crowded places I had trouble hearing the person I was talking to, and after exposure to any noise above the level of normal conversation, the t was a bit worse in the evening. So basically I fed the monster and withdrew from most types of socializing.

A note: if I spent hours, especially in the evening, at my computer – the hiss would become high-pitched.
The breaking point was December 2007. We had New Year's Eve dinner in a restaurant with a jazz band playing next door. It was too loud for me - but I sort of decided to disregard it. Halfway through the evening I put on my earplugs, but still it was a torture for me, and I couldn't wait for it to finish. Next morning, BAM! The t was doubled. Waited a couple of days, a week, no improvement. I also noticed that suddenly I couldn't stand being in the same room with a tv set (the old type, not the LCD) as the static noise felt like someone hitting my brain with a hammer – the closest thing to a physical pain, but without real pain – it's really hard to describe the feeling. After being near one of those sets for a while, my hissing t would again raise its pitch and become really uncomfortable.
Then, in January 2008, I went to NY with my dad. Looking back, I can't believe I did, but since I already went to the States a year before (when my t was lower), and there was no impact on the level, I decided to go anyways. I was already panicking because of the higher volume t since New Years', so I wore earplugs AND earmuffs all the way (9 hours flight). It was HORRIBLE. As soon as the plane took off, I realized the noise was too much for me even with all the protection. When we got to NY, I went into full-blown panic, I couldn't eat, and I couldn't go anywhere – NY streets are as noisy as it gets! The t was louder than ever, of course. I had high-pitched peaks in my right ear which made it impossible to fall asleep. I endured the week in a state of total distress, and then had to suffer another flight back.

I came home in ruins. Waited again for the volume to go back, but it didn't. I had a knot in my stomach and gastritis for about two weeks. Even going to work was terrible, the traffic noise, the computers at work... I ended up seeing a psychiatrist who asked me a couple of things about my life, childhood etc. and decided I should take antidepressants and Xanax. As soon as I took the first Xanax, the t volume reduced by about 70%. Oh, heaven!! As for the other pills, I tried them but didn't like the feeling they gave me, and also they raised the t volume, so I decided against it.

I've been on Xanax ever since. Now I'm on 0.5 mg in the morning and 0.25 mg in the evening. They aren't doing much good anymore, but I'm addicted, and they at least calm me down enough to go to work every morning, and give me a bit of relief in the evening.

In August this year I realized I was only getting worse and worse and decided to try TRT. The nearest specialist was in Austria (I live in Croatia). I got there and we did all the tests. The results were interesting: my hearing is perfect, too perfect indeed, I can hear sounds at -10 dB in the highest and lowest frequency range. My LDL's were 50-60 dB, and around 40 dB in the highest and lowest frequencies. They also did an OAE suppression test, and the result was pathological, meaning that the inner ear has lost its ability to protect itself against noise. The doc said this is called the olivocochlear disorder. But, he said TRT would be able to gradually improve my hyperacusis over a period of 2 years, as the brain can adapt to the malfunction of the inner ear. The t is also supposed to go away. I got fitted with sound generators (they have them for rent), but the lowest volume of the device (from 1 to 4) was still louder than my t. The doc said, wow, your t must be really low, about 15 dB (is that low? for me it isn't!) He had no further comment, and said I should re-visit in 3 months, and we'd be in touch via email.

At first it was great. The sound of the generators distracted me from the buzzing of the computers at work and I wasn't nervous anymore. I stopped checking the t volume (my favourite daily obsession in the previous months).

Still, my life was even more constricted than before, as I knew I had to protect myself. The doc told me to try using active sound protection devices. I wasn't able to find anything similar where I live, and regular earplugs only make my t worse, as the brain focuses on it. I avoided walking around in busy streets altogether and started going to work by car (I feel protected in it).

A month later, I was at home working at my computer, accidentally went into a silent room and took off the generators. And my head was BUZZING. Really loud. Ok, I said, it must be the computers, let's stop using the computer late in the evening. A week later, it was still buzzing. The computers at work irritated me again. A co-worker sitting in front of me recently got a laptop instead of his desktop, and the thing produces a horrible high-pitched whine. In the morning I can live with it, but around 2 PM it becomes uncomfortable and I have to get away from it. When I come home, my t somehow imitates the noise of the computer, and now it's no longer a hiss, but a metallic buzz.

Last week I had to walk in a really noisy street for about 30 seconds altogether. Came home, ears ringing double as loud as the previous day. And stayed there. I'm panicking again. This week my ears were ringing horribly every day after coming home from work. As I'm typing this, I can hear the hissing/buzzing all the time, even if it's Sunday and I had a quiet day, and took my standard dose of Xanax. It's never been this bad. I emailed the Austrian doc a couple of times but got no reply whatsoever. Now I'm losing my trust. I don't even know if the sound generators are making me feel any better. Actually, I'm getting worse! How am I supposed to get accustomed to my t if the sound generators volume is louder? Plus, the sound they make is exactly like my t! How is it supposed to make my hyperacusis better? When I'm at work I have to focus on the sound of the generators to avoid hearing the buzzing of computers. So I'm focusing on it instead of getting accustomed to it – I'm just giving it more attention, aren't I?

Basically, I feel cornered, there is nowhere else to go, and nobody can tell me what to do. Reading other messages on this board I figured I've been doing the wrong thing all this time by withdrawing from noise – but, honestly, I thought and I still do – that I was protecting myself from further damage. What do I do next? I should stop taking the Xanax, but I see no way for that to happen, unless I quit my job and stay at home. Which sounds great right now, as every day is an agony for me. What do you think about my diagnosis and the TRT treatment? I'm supposed to have another visit to the doc in about two weeks, but I can't imagine driving for 10 hours in the state I'm currently in.

 

Sorry for making this so long, I'm aware that all t sufferers suffer alike, but perhaps you'll be able to tell me what's going on, because I'm totally lost right now.

 

Thanks so much!

 

Ana

 

DrNagler
 #2 
Hello Ana -

I'm sorry that you find yourself in a difficult situation, but I'm glad you found this board.

Thanks for relating your story.

And many of us well-understand the feeling of being cornered, because we've been there.

My first advice ...

Neither the loudness of your tinnitus nor the severity of your hyperacusis are related to auditory damage.  So please do keep that appointment in two weeks - even if your condition temporarily gets worse, it will settle back in time.  The only thing that you must avoid is prolonged exposure to environments wherein the ambient sound is so loud that you must raise your own voice in order to be heard by somebody stamding next to you.

But I think that you should prepare for that appointment by writing down the three concerns that to you most want your clinician to address.

So catch your breath ... and please tell us what three questions you most want him to answer.

Also, I'm not at all sure that your OAE result means that your cochlea can no longer protect itself against noise.  That doesn't make sense to me.  But I'm no audiologist.  Let's see what DrChip has to say about it when he has had a chance to read your post.

smn

Thatch
 #3 
Welcome Ana!

I read your story, and i feel for you. Theres so much there that i can relate to. Computers, fax machines, scanners, tv's, even lamps and lighting fixtures.. they all drill my brain. These used to drive me to the brink of insanity.

Like you i have constant tinnitus and extreme hyperacusis. I've gotten the same reactions when i've done my hearing tests. All i can add is that the healthiest thing i've done in my life is to accept these noises, and eventually your brain will accept it to. For a long time i couldn't watch tv without focusing on the ringing, missing the program or the movie because i couldn't focus on the dialog.
If you come to an acceptance that this is what it is, it may get better years later.. it may not, but you have to tell yourself that your going to go on, live strong and happy. I did that and now the ringing is still there, but i can watch movies, i can go outside, walk down a busy street, i can sit at this computer typing right now and not break down and cry from the noise.
Its not easy, its actually terrifyingly difficult at times, but we have to be strong and carry on. Because we either keep on going, or we just die, this disorder kills who we were or who we could've been. But thats not gonna happen to me, and its not gonna happen to you ok! I'll pray for you, and welcome to the site
DrChip
 #4 
I have just done a quick review of the scientific literature and have found that "olivocochlear band (disorders) (OBD)in children may effect the children's ability to " hear (understand speech) in noise" thus OBD may be a contributing factor is Auditory Processing Disorders in children.

There is conflicting reports concerning "implications for the functional effects of the  olivocochlear  pathways on loud sound induced hearing change".

This is my preliminary review. But I would not allow this diagnosis keep a patient to continue TRT therapy.    cb  


DrNagler
 #5 
Thanks so much, Chip.

I did a search as well.  I couldn't find anything to suggest that one can draw any conclusions about the inadequacy of self-protective mechanisms of the cochlea based upon the results of an OAE test.

smn

frankie_girl
 #6 
Thanks so much for the kind words of welcome, and for all of your replies. Ok, I'm breathing again. That's a good sign
The thing I am having the most trouble accepting is the PROGRESSIVE worsening of my condition. I think I'd have much less trouble accepting it if I wasn't in a constant state of fear that it will just keep getting worse and worse. Classic, but can you blame me? I agree though that over time things seem to stabilise, but it's impossible for me to tell for sure since the Xanax alters my perception of the volume.
I also checked the net for any reference to the olivocochlear thing and found the same studies. That's why I was confused about the diagnosis. Actually, after getting so much incomplete/inaccurate information from various ENT's and other doctors, I decided not to trust anyone without double-checking what they're saying. Doubtful Thomas, indeed.
 
Well, the three questions I really need answers to are:
1. Can the computer/tv buzzes, drones and whines PERMANENTLY alter my t (pitch and/or volume) if I'm exposed to them daily (8 hours in the office, at home in the evening)? Or is it just my reaction to them? If TRT, which is basically a low sound applied constantly, can impact the t, is it possible that other low volume sounds listened to for long hours can have a negative impact?
2. If the noise generators are supposed to be adjusted to blend with the t, and my t volume is lower (well, it used to be lower, I hope it still is) than the lowest possible setting on the generator, how will the TRT work?
3.
"the only thing that you must avoid is prolonged exposure to environments wherein the ambient sound is so loud that you must raise your own voice"
How long is too long? If a truck driving past me on a street is 100 dB, my LDLs are 50-60 dB and the earplugs give me max. 30 dB attenuation, is it sensible to walk around the streets at all?
 

 
 
DrNagler
 #7 
Ana, I have a couple of questions ...
 
You wrote:
 
Ok, I'm breathing again.
 
...........
 
Did you stop breathing?  (It's a serious question.)
 
............

The thing I am having the most trouble accepting is the PROGRESSIVE worsening of my condition. I think I'd have much less trouble accepting it if I wasn't in a constant state of fear that it will just keep getting worse and worse.
 
...............
 
Ana, what is the logical basis of your fear?  The vast majority of folks in your situation get better over time,  Why do you assume that in your case it will get progressively worse?
 
smn
frankie_girl
 #8 
Here goes:
 
Did you stop breathing?  (It's a serious question.)
 
Well, yes. When I'm anxious, I don't breathe properly. Is that what you meant?
...............
 
Ana, what is the logical basis of your fear?  The vast majority of folks in your situation get better over time,  Why do you assume that in your case it will get progressively worse?

The logical basis is none other than my own previous experience. Having had t at a really low volume, and having it raised over time, isn't the fear reasonable? Why should it start getting better, if it only became worse over the past 3 years (I don't want to sound negative, but it seems rational enough to me.)


DrNagler
 #9 
Ana posted:

Well, yes. When I'm anxious, I don't breathe properly. Is that what you meant?

..........

Yes, that's what I meant.  We'll likely get into this later, but I am going to suggest to you that the two phrases "I am less anxious now" and "OK, I'm breathing again" - while they mean the same thing to you in this context - have a different physical as well as psychological impact.  And choosing to think of it in terms of "breathing again," is distinctly counterproductive.  But as I said, more about that later.

..........
 
The logical basis [of my fear] is none other than my own previous experience. Having had t at a really low volume, and having it raised over time, isn't the fear reasonable? Why should it start getting better, if it only became worse over the past 3 years (I don't want to sound negative, but it seems rational enough to me.)

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

Well, of course I can only go by what you report as your previous experience.  But by your own account your tinnitus is now so soft that the very quietest setting on a TRT device totally masks it - so given that fact I wonder how much softer your tinnitus could possibly have been three years ago?

smn

jerry
 #10 
Hi Ana,

Welcome to the board. I'm sorry to here your story. Several of us share your same story, myself as well. While Xanax will not reduce the tinnitus, it helps to relive (my) the anxiety associated with it. I am on Xanax 0.5mg three times a day, you may want to ask your doctor to give that a try for a couple of weeks to see if that would help.

After five major ear surgeries in four years I was house bound for eight months with T & H. I was frightened, just as you are, that my condition would never get better. It did not, but I got out of bed one day and told myself that I would not let this dam condition run my life! It hasn't, and that was four years ago. I keep busy at work, do volunteer work, work around the house, the yard, anything to keep my mind busy and not think about the T & H. I do where high density ear plugs (don't buy the cheep ones) when going to dinner with friends, or to my son's concerts (he's a aspiring musician). Do my ears ring louder at the end of some days, yes they do, but I refuse to miss out on life.

Ana, your condition seams a little different than mine, but see if the added Xanax works, stay on the TRT treatment, keep busy, and please keep us posted.
frankie_girl
 #11 
Hi Jerry,

Thanks, but I'm already taking Xanax - have been for the past 7 months  It sure helps, but... well... right now I'd be like to increase my dose, but I won't. Let's see how things work with the TRT.

Doc,

I have a feeling this is the start of a very interesting conversation.

Well, of course I can only go by what you report as your previous experience.  But by your own account your tinnitus is now so soft that the very quietest setting on a TRT device totally masks it - so given that fact I wonder how much softer your tinnitus could possibly have been three years ago?

I know some people have to deal with t at about 60 dB. I can't even start to imagine how bad that feels. As for myself, the sound was really, really low in the beginning. I could only hear it at night, when hitting the pillow. Then it increased to the level where I could hear it while having a conversation in a quiet room. Right now, I can hear it in a room with music on. I know it may not be loud - but it's progressively louder. Also, the pitch is changing. It used to be a pleasant hiss (like white noise). Now it's high pitched. So, there's definitely something happening in there, and I certainly don't want it getting any louder...
frankie_girl
 #12 
right now I'd be like to increase my dose,

Sorry, couple of words extra in that sentence
Just wanted to add, Jerry, for me, Xanax does reduce the t volume, not just the anxiety. On the long run, however, I don't think it's a good thing. It sort of grows on you.. and you can't keep taking it forever.
Thatch
 #13 
Jerry
 
I do where high density ear plugs (don't buy the cheep ones) when going to dinner with friends, or to my son's concerts (he's a aspiring musician). Do my ears ring louder at the end of some days, yes they do, but I refuse to miss out on life.

 
What sort of high density ear plugs do you use? where do you buy them and are they the kind that get molded to your ear for a perfect fit that control what dB gets allowed in?
DrNagler
 #14 

Ana posted:

I have a feeling this is the start of a very interesting conversation.
 
...........
 
Interesting ... and hopefully over time very helpful to you.
 
.............

I know some people have to deal with t at about 60 dB. I can't even start to imagine how bad that feels.
 
.............
 
My tinnitus is over 60dB, Ana.  In fact, I can easily hear it while in the Maid of the Mist boat at the foot of Niagara Falls.


 
But most of the time I don't hear it unless I purposely listen for it.  So here again is an example of your drawing a conclusion based upon assumptions that might not have a logical basis in reality.  That's OK.  Almost everybody does it at first.  All we ask here is that you keep an open mind.
 
..............
 
As for myself, the sound was really, really low in the beginning.
 
.............
 
Ana, it's really, really low now!  My goodness, you can't hear it over the very lowest setting in a TRT device, a device that is specifically designed to be able to be set softer than your tinntus
 
So I think that you might consider the fact that likely your tinnitus really isn't louder than when it first started - it only seems that way because you've been fighting this battle for three long years.  I really believe that you're going to do quite well, but maybe it might be worth a look at the strategies you've been using!
 
smn
Thatch
 #15 
My tinnitus is over 60dB, Ana.  In fact, I can easily hear it while in the Maid of the Mist boat at the foot of Niagara Falls.
 
 
wow!, thats insane. And at that dB level you've habituated to it? how long has your t been at that level?
jerry
 #16 
Thath,

I get my plugs at the Guitar Center, it's a music store. The brand is Hearos. I use two kinds, one for wind (wind really spikes my T) for skiing, boating, Motorcycle riding, even walking or hiking. They are silicone based, triangle shape. with a 1/2" (13mm) stem.  I put a light coat of vitamin e on them and the seal is great. The problem is when going to a restaurant I look like "My Favorite Martian" with these stems sticking out of my head, that's when I use the flesh colored cylinder shape, high density plugs. With these most people think I just have in a hearing aid. I believe both are rated between 30-40 db.
DrNagler
 #17 
Thatch posted [regarding my tinnitus that's louder than Niagara Falls]:

wow!, thats insane.
 
............
 
No, Thatch.  That is the reality.
 
................
 
And at that dB level you've habituated to it?
 
.................
 
Habituation is a process, not a state.  But I have largely habituated to it.  To have fully habituated, I'd NEVER hear it unless I purposely sought it.  And that is not the case.  But when I do hear it, while it can distract me, it rarely distresses me.  Early on the very same tinnitus pretty much put me in bed for a year.
 
.................
 
how long has your t been at that level?
 
................
 
Since 1994.
 
sp


winterbridge55
 #18 
Dr. Nagler,

I never until this day heard you talk personally about your t. I find it superhuman that you have habituated to this level. I am just blown away by your Niagara Falls example. Can it be that there are people no matter what their chronic level of pain and distress will do better than others just because they are optimists?  I think the mind is a terrible master for some because it thinks automatically that everything is a disaster. Some of us can become a slave to our own minds which makes fighting chronic illnesses that much more difficult, like me. Thank you for sharing your tinnitus with us.  


DrNagler
 #19 
Mark posted:

I never until this day heard you talk personally about your t.

...........

I don't talk about it much - because it's not particularly interesting to me.  I did write a piece about it that was published in the medical literature around five years ago:

Tinnitus - A Patient's Perspective

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

I find it superhuman that you have habituated to this level.

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

I assure you - it is very human.

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

I am just blown away by your Niagara Falls example.

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

I can understand why you might feel that way.  Can you understand that a couple of years ago when I made that discovery while on vacation with my wife and kids, my reaction was one of mild amusement - nothing more than that!

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

Can it be that there are people no matter what their chronic level of pain and distress will do better than others just because they are optimists?

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

Possibly.  However, I can tell you that with my intrusuve tinnitus I sure wasn't any sort of optimist at all.  In fact I was just about the greatest whiner and woe-is-me-er on the planet.  But while I did not have anything approaching optimism, I did have four things that as I look back upon it were very helpful ... 

1)  A strategy for finding relief that made sense to me
2)  The determination to carry it through
3)  The unconditional love of my wife (who as part of that unconditional love placed limits on my whining and complaining)
4)  A psychiatrist who managed the antidepressants and benzodiazepines that helped me get through the day ... and who, when I said to him that I was afraid I might commit suicide, told me on no uncertain terms that there wasn't chance in the world that I'd commit suicide - because while I was absolutely miserable, I wasn't STUPID!

smn
CPW151
 #20 
"Can it be that there are people no matter what their chronic level of pain and distress will do better than others just because they are optimists?"
 
Ana, I just had to jump in here for a minute.  I had tinnitus for about 10 years or more.  Crickets that bothered me a lot for awhile but I got use to them.  And then about 3 years ago TINNITUS hit.  Why?  I have not a clue.  I searched, blamed everything and me.  Cried, prayed, and finally had a .44 Mag. with a special honed hair sear on the trigger.  Less than 3 oz. and it would stop the screaming in my head.  I didn't have the guts.  Then I got mad at me, mad at the tinnitus destroying my life.  Then I stopped fighting with a good doc we all know and love around here.  I started listening, learning.  Eventually I began to put tinnitus where it belongs.  Does it still scream - on days.  Some days I'm not aware of it.  It takes time to learn, externally at first, all we can learn about tinnitus and then gradually we start internalizing it.  And I have said all this to say one thing - Optimist, Me?  I can't even spell it.  Patience?  What's that?  I don't know if optimism helps some people or not - I will never know because of all the things I am, an optimist is not one of them!  So you WILL walk this road, together with us.  It's not easy but the rewards are worth it.  You got through yesterday, and you did today and you will tomorrow.  You didn't learn to walk in a day or a week or two.  You got up, you fell down, and you got up again.  Eventually you leaned but it took time.  The road to habituation is a lot like that.  Dr. Nagler is much further along that road than I and others but, as I have said before, I will say again; There was a good life before tinnitus and there is a great life with tinnitus.  On this board we walk it together.

CPW


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