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Ed

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Posts: 112
Reply with quote  #1 
Hi everyone, so basically a recap of my story is that it's been about a year since my H set in (T on the other hand i've had since I was a tiny kid) and to celebrate the anniversary my H went through the roof, straight back to how it was when it started, burning face pains returned, ear tension/pressure feelings returned, the sensitivity itself worsened. I don't know why, I didn't do anything out the the usual.

Anyhow, to the point, last night I went to a party with some friends, and when I got there, they had loud music playing and everyone was gathered in the general area of it, I couldn't really get away. I kept back, as far as I could while still standing with people, I don't know how loud it was, I could still hold comfortable conversation with people, and some say the test to see if it's over 85db is when you can no longer do that. Maybe before I wouldn't worry so much about it, but since I'm in a bad spot already I'm very, very scared of hurting my ears further.

Later on in the night people spread out and I went with them, further away, putting more walls between  myself and the sound, and eventually going upstairs. I'd say I had around 30 minutes at the first area though.

I don't really know the point of this thread, I'm just still really scared and people on this board are the only ones who truely understand this.

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hjolli

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Posts: 20
Reply with quote  #2 
Ed, was your H recovering and how long had that taken? And what did you do for it?

Hjolli

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Ed

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Posts: 112
Reply with quote  #3 
I don't know, I don't think so, I think it had just stabilised. I haven't really done anything, just haven't overprotected and have not avoided sound too much.
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whf

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Posts: 18
Reply with quote  #4 
Ed, I just had a very similar thing happen to me last Tuesday and it has also got me very worried.  I my case, I was having a conversation with a person at work who was talking loudly at about my limit of tolerance.  After about 1/2 to 3/4 hours, I had to put in my earplugs.  When I got back to my desk and removed my earplugs, the hyperacusis was extreme, everything was too loud, even my typing at my computer.  My tinnitus also went through the roof at this time, I have never had it so loud and it took days to subside.  The hyperacusis did subside to a large degree by the following day.  I also noted the ear "pressure" and a "burning" sensation in my face which looked quite red to me and others.  I also felt my heart was pounding, but this was a very stressful event.  I have been told that this was a "panic attack".  Did you feel any other symptoms at the time?  I am wondering if stress can trigger some type of ear problems, or if the onset of an ear problem causes stress that makes the ear problem worse, kind of in a vicious circle. 

Bill

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Ed

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Posts: 112
Reply with quote  #5 
Yeah, it's generally agreed here that there is a catch 22 of Hyperacusis in the stress/depressions relationship with H. I have been very, very stressed recently, I do wonder if the onset of the worsening of H is to do with it.

My right ear is still really bad, along with feelings of tension in the ear itself and fullness. Like when you get a cold (or at least when I do) the ear gets blocked and the sensitivity goes through the roof in the blocked ear/ears. I hate how H gets to me, I hate how it's so hard for others to understand. I've never even met a fellow sufferer in person, I wonder what it would be like sometimes. Everyone on this board is great, but often people take many months away from the board on purpose, trying to remove all thoughts of H from their mind, I'm not complaining, I do it too, it helps. Not sure where I'm going with this, but times like this when it's getting me down the board is important.

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whf

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Posts: 18
Reply with quote  #6 
Ed, yes, I tried to stay away for a while but this thing has me very worried.  I am not used to the hyperacusis fading out so quickly and the huge flair-up of tinnitus.  Trying to get any answer out of my doctors has been an exercise in futility, and searching the web for an answer on my own just leaves me with more questions and a lot more anxiety over what it could be.  I have had tinnitus and hyperacusis for many years and have never had a flair-up even close to something like this, and it is difficult to not get stressed out by it.  I did not even want to post about it on this message board, but I'm hoping for some clue.  Has your tinnitus changed as a result?

Bill

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Ed

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Posts: 112
Reply with quote  #7 
No, my tinnitus doesn't really change, it used to before H when I did lots of loud stuff, it would slowly get worse, T rarely bothers me these days, I've learned to live with it. But when H gets worse it's horrible, as you know. How long have you had H then?

And yeah, doctors can be very frustrating, I even had one GP who thought I was making things up. But GP's arn't very good for specific diagnosis, as I learned from my tendonitis. Got to get to the specialists, both audiologists I've seen knew about Hyperacusis, I was impressed to be honest. And although the advice was good, that I should not overuse earplugs, keep myself exposed to safe levels of sound etc. They did not refer nor mention TRT.

Have you tried TRT yet?

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whf

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Posts: 18
Reply with quote  #8 
I've had tinnitus and hyperacusis for 21 years, ever since a bad infection and a noise trauma and I eventually learned to live with both.  After years of slowly getting better, both the tinnitus and hyperacusis got much worse suddenly in early January for what seems to be no real reason.  I was exposed a very loud noise in early December without earplugs, and more noise around the holidays with earplugs and there seemed to be no real problem, except for a mild increase in the tinnitus.  Then many days after the last real noise, everything went way up.  I have been trying not use earplugs and had some success, but every time the H goes down the T goes up and now these hearing losses have me very worried.  I had been diagnosed with Meinere's disease back when this started, but that seems not to be the case, as I would have had low frequency hearing losses years ago if it were correct, and from what I can find on the net, I agree with the doctors on that one.  Like you, I'm really scared and people on this board are the only ones who truly understand the hyperacusis.  I have been to an experienced ENT and and ENT that specializes in neurology, but the sudden hearing losses just showed up this week.  Trouble is that my previous audiogram was done at the other ENTs office and there is no communication.  I have an appointment for TRT next week, I'm sot sure I'm ready for TRT yet until I know what is going on and my condition is stable, but I'm going to it to find out anything that they might know.

Bill

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Ed

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Posts: 112
Reply with quote  #9 
That's strange situation, I haven't heard of anyone experiencing fluctuations of T and H seperately like that. Let us know how the appointment goes, and if you start TRT let us know also.
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aQuieterBreeze

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Posts: 2,083
Reply with quote  #10 
Hi Ed,
You mentioned-
Everyone on this board is great, but often people take many months away from the board on purpose, trying to remove all thoughts of H from their mind, ......

I think what happens for some is the negativity  that can at times be prevalent can really get to someone.

And the thing about these challenges is as difficult as they are - we CAN do something about them- we can take steps to improve our tolerances to sound.
But many people do not even try......

I've been a bit busy with a few things, and that is why i had not gotten to answering your post - same true for Bill- i started to compose something last night, and had not had a chance to finish it.

you also mentioned-
the board is important

That is a good observation.
Yes it is- in many ways  -
by reading it before, and after i signed up and focusing on the posts of those who were improving and trying very hard to do so - i learned alot, and gained a lot of hope -
when hope could be very hard to find. And many shared the insights they had gained along the way -
and by focusing on the posts of those who were improving - I gained alot of insight and inspiration as well,.......and i am grateful for all of it.

Yes, this board is important - And there are ways through these challenges, and it's important that people realize that.

Hi Bill,

you mentioned-
I have an appointment for TRT next week, I'm sot sure I'm ready for TRT yet until I know what is going on and my condition is stable, but I'm going to it to find out anything that they might know.

From what i have read, and the posts i have seen  - sometimes the clinician one goes through for TRT can make a big difference.
I think you are approaching it with with a good attitude, to begin with -  to see how things go, with your appointment.
If things do not go smoothly or you have reservations, or unanswered questions, or even just want to talk to another knowledgeable and experienced clinician about it -  Someone else  around here may be able to recommend someone in your area, or within driving distance that is well trained in TRT and knowledgeable and experienced in treating Hyperacusis and tinnitus. As some clinicians seem to be very highly regarded and well recommended.....
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gardennut

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Posts: 140
Reply with quote  #11 
I definitely think stress can activate symptoms, I've had it happen lots of times and find that the pressure, etc, eventually goes away again, so try not to get to upset about it when it happens.
Just read Dan Malcore's posting re the music therapy for Tinnitus, I wonder if it's applicable for H as well.
I also understand the challenge of telling others about this condition, I recently attended an event where I was listening to friends talk about music and was asked what kind of music I liked. I said I like folk music as well as other kinds but can't enjoy it much because of my ear problems which I then described. Well what a pall that put on the discussion. One feels reluctant to even bring up the subject, but sometimes it seems necessary.
I read somewhere that the incidence of Hyperacusis is 1 in 50, 000. No wonder it's hard to find others near by with it, who can understand.

HOpe your symptoms calm down soon,    Cheers,   Donna

__________________
Donna Keddie
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Ed

Registered:
Posts: 112
Reply with quote  #12 
1 in 50,000 is still a vast number of people worldwide, estimates can vary hugely, people often quote the tinnitus figure, can't remember it off-hand but many sources say that around 40 something percent of tinnitus suffers have a degree of hyperacusis. If these figures are true I do wonder where the rest are, although I have seen a fair few cases of people having hyperacusis and thinking it was a part of tinnitus, until an audiologist told them otherwise.
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aQuieterBreeze

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Posts: 2,083
Reply with quote  #13 
Hi Donna,

you mentioned-
I also understand the challenge of telling others about this condition, I recently attended an event where I was listening to friends talk about music and was asked what kind of music I liked. I said I like folk music as well as other kinds but can't enjoy it much because of my ear problems which I then described. Well what a pall that put on the discussion. One feels reluctant to even bring up the subject, but sometimes it seems necessary.

Sorry to hear that things did not go well when you explained it. It can be  hard for others to understand, and when i used to tell people I could not even listen to music - as i held my hands over my ears asking for something to be turned down - it usually got their attention. (though I can listen to music now, so i had to come up with new things to say, and ways to say them :-) 
When the subject comes up I think there are ways we can discuss it - in ways that others may benefit, and perhaps have a better understanding of what we are going through as well.....
I have found that there are some ways we can talk about and describe these challenges that can be helpful to others -and i try to use opportunities that I get- when I need to explain for whatever reason, to try to briefly help educate or inform others about hyperacusis and a bit about tinnitus as well -
and things they can do to protect their hearing, if they are going someplace likely to be loud, like a concert or something  ......
To take earplugs along, and to leave if it's still too loud ........
I will sometimes explain some of what i have gone though, and also try to point out how important it can be to protect ones ears from loud sound.
There were times i would ask someone in a store to turn down the music - or perhaps the sound in a video store - explaining as i held my hands over my ears that i could not even listen to music -
and had been unable to do so - for years.....that really got their attention.......
if we explain in ways that may be helpful to others, sometimes they may have a better understanding....

I spent years not being able to listen to music -----but more in the way of music, is more tolerable all the time, and much easier on my ears than it used to be and   sounds truly beautiful .....

Hope you will find a way so that you are able to more comfortably listen to music again - it can be helpful in alot of ways :-)

P.S. Thanks for your reply in that other thread, about the car alarm!
I've been hoping to get back to posting a thanks to you for that there.....
but since i have not yet, wanted to say thank you!
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