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Trapped

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Posts: 140
Reply with quote  #1 
To all of you who have had success, please share with those of us who are still trying to figure all of this out.  It is so helpful to hear that others have overcome this or learned to deal with it in some way.  I am not giving up.  I will listen to my pink noise and do CBT and whatever it takes to get out of this living hell.
I do not want to wear earplugs for the rest of my life.  I want to go outside and enjoy playing with my kids again, without fearing the dreaded "power tools."  There must be some solution to all of this.  I am shocked that the medical community has not come up with a cure for noise sensitivity.  Furthermore, I am shocked at how many doctors are unfamiliar with this condition.  It's sad, really.

Thanks to all of you who have shared success!
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Johnloudb

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Reply with quote  #2 

We'll I've had a lot of success. And it's been a winding road and I've still got lots of work to do. 

You can read my story in my signature if you like. Just ignore the last part related to audio. I wrote it to address some issues related to my high end audio hobby.

I'd suggest you try to get to a good TRT doctor, if possible, and find out what you're dealing with.  If not some of us go it on our own. Yes, it is disappointing that the medical establishment has pretty much ignored people with sound sensitivity problems.


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Billymoe

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Reply with quote  #3 
That's good advice
Hi John: How long can you listen to High fidelity music,and at what sound pressure level? For examble 75db for one hour. What is your signal to stop?

Bill M.
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aQuieterBreeze

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Posts: 2,083
Reply with quote  #4 
Billy,

I know your question is for John - but being able to listen to music again, is a true joy for me.

One thing I notice, at least at times - when I push it too far, when pushing/testing my limits with the volume - is a sense of aural  fullness, or an increased feeling of fullness.
And when i notice that, i know i should back off on the volume. It's too loud, for me ...
Providing my hearing/ears are not mre sensitive than they usually are, such as during a setback because during a setback listening to music can at times be a lot more difficult for awhile.....
I am able to listen to what is comfortable for me (music i am easily able to tolerate) for an indefinite/unlimited amount of time - at volumes and settings that are comfortable  for me.
Though I could not tell you what db they are, but it is not loud ....(though louder than i used to be able to listen to music, or anything .....)
And when  external, or other  sound is present,  -  i may have to lower the volume, depending on the sound and the volume of that sound  -  as the combination can be more difficult .
Some music, selections and artists,  are  still very difficult / too difficult for me to tolerate, but I can listen to more - all the time.

I hope you are doing well ......and also find you are able to enjoy music more - all the time.

P.S. added on edit -
Though I do challenge my hearing/ears with the volume of what i listen to at times wheather it is with music on the radio, TV or CDs - I do Not leave the volume turned up to the point of pushing the upper limits of my tolerances (between what is tollerable and what is not yet) for long periods of time, at a time. Though I do turn it up sometimes, and sometimes realize i turned it up  too far, especially since some selections and parts of them - may be more easily tolerated,  than others.
I think there is a balance, and though I can't say what would be right for others, For me - finding that balance and working with it, and within it - in ways that ok for me to o so, and also realizing what I can tolerate changes, has been helpful.
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Layla

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Posts: 443
Reply with quote  #5 
John, it was great to read about your story! Some helpful things there for all newbies or anyone who hasn't been in contact with wisdom of your doctors directly!
(I haven't had TRT as it's not available in my country, and not sure if I'd go for it due to several reasons, some things there seem universally applicable!)

Trapped, there have been success threads before! (maybe do a quick search?) For me, at a point, the PC was too loud, and being able to sit by a PC or in a car again, was a huge success! Also, being able to walk by a brook or a river without any hearing protection, etc! As for the power tools, I still mostly hate them, but it's in the 'ahh, I hope they get it done soon' category! (Or I simply put on ear muffs, avoid earplugs at all costs!)

I listen to music at comfortable levels too, and simply turn down volume or change the station if it gets too annoying. (I STILL hate techno and house and a lot of RNB even more than before, and probably always will, lol! For a while couldn't stand some other music bits too, like 'screaming guitars' or too 'rock' sounds, I can listen to a lot of the stuff I liked before now. ) I still hate some 'chime-like' stuff like the Yahoo 'ad' ('the content you are trying to view is only available in certain areas') on Yahoo music, yikes!
So what I mean is, it's not 'all or nothing' - a lot of small successes and big victories on the way!

Kids can also be really loud, but can also respond to calm instruction to talk more quietly cause 'ears hurt'. Or something like that. That was a mini success too!!

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Johnloudb

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Reply with quote  #6 

Quote:
Hi John: How long can you listen to High fidelity music,and at what sound pressure level? For examble 75db for one hour. What is your signal to stop?

Bill M.


Hi Billy, good to see you back on the board! I have kind of gone back and forth on the music listening, still about 25 minutes. So, can't report too much progress there, unfortunately. Our main speakers broke in August and I finally getting around to fixing them. I got a cone/coil replacement kit to fix the midranges as one had a rubbing voice coil.

Anyway, the speakers that replaced them had a brighter tonal balance, so I listened to some other speakers till I could get used the others. I worked with speaker placement and got them sounding very good though.  Not as nice as our older ones, Nelson/Reed 804B, but I've adjusted to the sound and listen just as long now.

I just took a SPL meter and listened to it was a solid 70 dB with the KT Tunstal's  Drastic Fantastic rock CD.  This wasn't the loudest I listen, so probably  70 - 75 dB is the norm.

I don't push it with music much. Most times I just quit as soon as I feel I've had enough. Other times I'll feel like pushing my boundaries a bit and do so like every week or two. But I can't always do more and when I do more I do take it slow.

If something happens like my ears start ringing or hurt, I stop and think good thoughts. Though my ears don't rarely get hurt or ring. I just know when I've had enough.

How are you doing with your sound issues?


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Johnloudb

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Reply with quote  #7 
Quote:
John, it was great to read about your story! Some helpful things there for all newbies or anyone who hasn't been in contact with wisdom of your doctors directly!

(I haven't had TRT as it's not available in my country, and not sure if I'd go for it due to several reasons, some things there seem universally applicable!)

I'm glad you enjoyed it. Yeah, people can do this on their own if they learn the Jastreboff Model and learn how to move forward. Takes some practice and learning to find what works for you, too.

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saab1216

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Posts: 152
Reply with quote  #8 
Hello Im back! I just had to share some good news to you that are suffering. Today I requalified with firearms I shot a shot gun and revolver at my jobs demands. Last year I had very bad Hyperacusis. I still have a small case of misophonia but it is all part of the healing process im in. I can tolerate loud traffic again,dinnerware and silverware,loud people are good most of the time except very high voices. Basically, I can live a pretty normal life again after only one year of trt and music therapy.My intolerances are to lip smacking and mouth sounds but I am overcoming that silliness too. I call it silly because I dont let it bother me. I accept it as normal until i no longer can hear it. There is hope if you get mentally strong about this and constantly take care of yourself mentally and physically!
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Layla

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Posts: 443
Reply with quote  #9 
Saab this is very inspiring to hear!

Can you tell more about exactly what you did? I'm especially interested in 'constantly take care of yourself mentally and physically!'
And how did you you get mentally strong about this?

Am especially interested in the silverware lol!! How did you manage to do that? (If people eat nicely, it's okay-ish, if they rattle, well, lol, then I rattle too. So I see some progress, still not quite there yet.)
It may be good to use ear protection around shooting, as even healthy ears can suffer injuries from noise.

Yeah, it's probably easier with an expert, I just used info from this site and elsewhere online and experimented by myself.

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saab1216

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Posts: 152
Reply with quote  #10 
Layla,Hyperacusis seems to affect us with a two prong attack. As we try to "normalize" our lives with abnormal sound reactions in our brain,things get even worse from anxiety. Maintaining a good positive outlook is imperative to forge ahead in this challenging time.Ive had plenty of ups and downs all the while constantly looking for answers and getting into a bigger downward spiral! It can get downright dark in ones life.
One of the biggest challenges is trying to make others understand what you are going through and all the anxiety to try and hurry this through.You must give it the amount of time it needs to heal.Like Johnloudb once said, Take notice of the things that are improving and not the present challenges.This mindset was a constant and still is for my existing misophonia.
Trying to relax the best way that you can even if it means putting other people aside for a short time. Yes! It is important to put yourself first more often now! It may come with some small consequences but You! are not whole! People Don't and Cant understand that you are being physically,mentally and emotionally challenged right now. By God given rights,the sufferer of Hyperacusis should be off to a retreat for re cooperating just as a terminally ill patient abides in hospitalized care! Now,don't get me wrong,I didn't say to simply stop existing and enjoying life! What I do recommend is to have a special time cut out for you(alone). I know that there is plenty of alone time while battling sounds but,It is O.K. to be alone for now. rest mentally,take magnesium,fish oil or daily vitamins. This is important to refuel the energy that you've lost through the constant stress!!! Get yourself an i pod that plays calming ocean sounds and take nightly strolls while everyone else is indoors.
Your faith in God can also be very inspirational to hope in healing and strength.
One more thing,yes Layla silverware was a huge problem for me at first. In time these frequencies will not penetrate through you.they will soften up. It is important to expose yourself to the sounds that bother you over and over! They will not make you deaf! They cannot harm you if they harm no others around you(if they are normal in volume and not obviously loud like say a passing freight train!).I exposed my self to that as well! I challenged my ears with power tools,dishes,loud music,passing jets. yes it was loud for me but I realized that only "prolonged exposure" was probably the culprit to my once bad hyper acusis. short sound exposures are good and beneficial! Set back after setback will happen.So what? keep on keeping on.feed the ears in SHORT TERM intervals and rest the ears at night!(or use very quiet sounds for tinnitus). .Just keep introducing sounds to your senses. I went and bought a small bicycle bell that was once impossible to tolerate. Once daily, I would ring the bell for about five to ten seconds softly...then a little louder. In a week it was tolerable. This wont work for all sounds that are complex(television broadcasts,music etc). You need to single things out. I would take a plastic bag with me and crumple it over and over until I finally beat that challenge.I would hold my ear up to running water over and over to acclimate from the pain it caused. I constantly stacked dishes and bore the painful sounds. It took months to a year for most to improve for me. Gradually, you will see differences.I saw them monthly and not daily. Keep trying! It also helped me to realize the probable cause of my hyperacusis. Prolonged video games wearing headphones. I was playing loud War games for hours and hearing explosions at huge sound levels! Ive definitely thrown out most of my games!Knowing this means never going back to that type of sound abuse again!
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Billymoe

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Posts: 69
Reply with quote  #11 
Hi John : Nelson Reed speakers! Just when I thought I knew every piece of audio gear around you stumped me. I googled it and it looks like really great stuff. When I started out it was just Mcintosh and Crown. I could go on for hours talking about audio equipment and music. I've bought about 10 pairs of speakers and built many tube amplifiers since developing Hyperacusis. It came down to a pair of Infinity Kappa 200's and a pair of NHT 3's I could listen to these at about 70db for about two hours,then I have to rest for about 15 to 20 minutes This rest is very important bucause my TRT clinician said my Hyperacusis didn't happen overnight. It was a acummulitive over a period of 30 years of listening to music at 90db for about four to six hours per session. I also covered part of my walls and ceiling with studio foam,which makes 70-75db sound quite comfortable. Sound is not being reflected so much. Live rooms with wood or concrete flooring are much harder on my ears. I also use a paremetric equailzer and tube compressor. When listening to my Kappa 200 which have a high frequency response to 27khz it makes my tinnitus act up,but as long as the volume is not set to high the tinnitus actually levels off and increases my tolerence to all sounds. If the volume is set to high my neck gets tense,the top of my head gets sore then my ears start to burn. I try avoid the latter. My TRT clincian said I was the only one she knew of the had a sore scalp from hyperacusis. I thought that might interest you Paul. I think listening to music is important on good quality system. The trick is to keep listening,even if its 50-60db. The longer you listen,the greater your tolerence will become. I don't worry so much about the tinnitus,as long as ears aren't burning.
If music be the food of love then play on

Bill M
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janepm

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Posts: 1,644
Reply with quote  #12 
What works: well all I know is for ten years and in the earlier days I tried everything, this was before our message board and Dan himself had to help me so much, his mailings helped me a lot.

I couldn't get much information from the professionals and it seemed that it was very costly to get any help and it wasn't nearby so I continued trying to do it myself.

Those of you will remember 4-5 years ago about this but for me, this goes back more than ten years, a lot of years of suffering and trying!

What worked? in a nutshell, letting go, letting God. We didn't have the spare money but I said forget it, it will be taken care of and I went to the University of Maryland at Baltimore, even sitting on the plane there, I thought now this is nuts, why should I have to spend time and money going to the east cost (we are in California) to get help?

But I let it go and had to go through it. I knew enough not to ask for back seats on the plane and not on the engine and ask for an aisle seat. I knew also by that time not to wear plugs all the time as it makes you even more sensitive.

I had booked a room a couple nights in a beautiful B & B even though Maryland had arrangements with other places. I so wanted NOT to be around a tv in those days so I chose one without them in the room.

I arrived tired and back out and exhausted!

The next day I spent the next full day at the University and sitting there I remembered thinking WOW, this is it, this is what I've put off all these years. 

I came home excited, feeling hopeful and did TRT for about a year and a half. My follow-ups were done over the phone as I didn't really have to go back when my tolerance testings could be done by their supervision out here. By this time, I was beginning to hear Audiologists understand what I was going through as they were starting to hear more.

And that has proved right with some of the folks who do advanced studies which helped. 

I then found someone through networking via a list that the Tinnitis Association sent me to a woman only a couple hours north of us who finished me off and graduated me.

That is my success story, it wasn't just wearing the sound generators, it was also cognitive behavioral therapy (another miracle, I found someone who was on my insurance plan and worked with people like me!) and also retraining with sounds which I did every day.

It definitely worked, I was telling folks then that if I realized a 15% improvement, I would be happy. I'd say it's more like 5 times that. Does it every go away, no, but if it ever happens again, I'd do it again.

And I'd advise someone in misery who feels that they have tried everything to go for it. I learned in interviewing people from the ATA list that not everyone knows how to do this so you have to ask, ask, ask. Once I agreed with myself I would fly to wherever, it was easy, it opened up the vistas.

Hope that helps and Happy Spring!

__________________
Jane
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saab1216

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Posts: 152
Reply with quote  #13 
Hey Billymoe,My scalp does tend to burn as well when Im exposed to too much! we are not such a rare case after all!The neck was a real issue for me as well and sore throats.Things improve but my real problem is the high frequencies especially from T.v. and digital radio programming.
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Marilyn

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Posts: 194
Reply with quote  #14 
Jane,
Wow, I'm so impressed with your story!  How hard would we have to twist your arm to come back and tell us more?  You are an inspiration.  Thank you!

__________________
~ Better days are ahead! ~
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Johnloudb

Registered:
Posts: 1,951
Reply with quote  #15 
Quote:
Hi John : Nelson Reed speakers! Just when I thought I knew every piece of audio gear around you stumped me. I googled it and it looks like really great stuff. When I started out it was just Mcintosh and Crown. I could go on for hours talking about audio equipment and music. I've bought about 10 pairs of speakers and built many tube amplifiers since developing Hyperacusis. It came down to a pair of Infinity Kappa 200's and a pair of NHT 3's I could listen to these at about 70db for about two hours,then I have to rest for about 15 to 20 minutes This rest is very important bucause my TRT clinician said my Hyperacusis didn't happen overnight. It was a acummulitive over a period of 30 years of listening to music at 90db for about four to six hours per session. I also covered part of my walls and ceiling with studio foam,which makes 70-75db sound quite comfortable. Sound is not being reflected so much. Live rooms with wood or concrete flooring are much harder on my ears. I also use a paremetric equailzer and tube compressor. When listening to my Kappa 200 which have a high frequency response to 27khz it makes my tinnitus act up,but as long as the volume is not set to high the tinnitus actually levels off and increases my tolerence to all sounds. If the volume is set to high my neck gets tense,the top of my head gets sore then my ears start to burn. I try avoid the latter. My TRT clincian said I was the only one she knew of the had a sore scalp from hyperacusis. I thought that might interest you Paul. I think listening to music is important on good quality system. The trick is to keep listening,even if its 50-60db. The longer you listen,the greater your tolerence will become. I don't worry so much about the tinnitus,as long as ears aren't burning.
If music be the food of love then play on

Bill M

I also have to rest for a period of time after listening especially when I've listened longer, sometimes 15 - 20 minutes like you.

Those Model 3s are very nice speakers from what I've read about them. I love building stuff. Up till now just solid state preamps, a sub crossover, and one small speaker. Working on some new projects now though.  Never done tubes yet, can't say I know a lot about them, but would like to try that sometime too.

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Billymoe

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Posts: 69
Reply with quote  #16 
Hi John
I cloned two preamps in the past six months. One was a Mcintosh C-27 solid state preamp from the late 70's and early 80's,the other a  Audio Research SP3 vacum tube preamp from the early 70's. I like the Audio Research much better then the Mcintosh. The solid state preamp has a hard edge,whereas the Audio Research has a transparent sound. Even at low volume levels you could hear subtle nuances in musical instrements and the human voice. I only had the schematics to go by. I can't believe a preamp could make that much of a difference in my audio system. I've also heard very good solid state preamps,but not as good as the best vacum tube preamps.
      It also depends on the quality of tubes you use. Russia and China are the only countries that manufacture tubes. American output tubes made in the 1950's and early 60's sound so much better, less fatiguing and no" boomy" bass. I also the like the sound of vinyl records better than compact discs.
Happy Building
Bill M.

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Layla

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Posts: 443
Reply with quote  #17 
Thanks Saab!

This sounds really interesting! I will try with the bell - I have a tiny bell and never thought of using it until what you wrote!
I can put away silverware or dishes okay (almost all the time, unless something slips and bangs) most other members of the family eat nicely too, Mom sometimes bangs her spoon against the plate or so!
I am afraid of crumpling plastic bags also, may attempt this too..

Jane, can you tell more about the cognitive therapy and what was done there? (some helpful links had been posted on this board, I'd love to learn more!)

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