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saab1216

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My new audiologist seems overly convinced that I can build up my sound tolerances by just doing the things Ive' always enjoyed doing,particularly listening to music.She recommended that I listen a half hour each day for one month to my favorite music.This I can describe as often painful to me.Through my experiences,music presents a harshness beyond description. Treble,when turned up too high sends me reeling! I have been on this protocol along with sound generators and feel worse.I may have to agree with Peach on one thing! If sound hurts than turn it off! I find that I am more comfortable balancing the facts and/or opinions expressed on this site than those of my own specialist! She was allowing me to fly to Hawaii(over ten hours)with L.D.L.readings at 70. I decided against it. The best judge of tolerance are your own ears. I speak for all of you brave soldiers with h/t....only you know the real deal about this malady first hand! Dont trust just any expert that studies the books.They dont/cant feel the pain!


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aQuieterBreeze

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Paul,

When I first started listening to music, again,  I found that SOME things were easier on my ears than others. Not all of what I used to listen to sounded ok. And some things I thought would be allright for me- were not.-  they were too difficult for ME.
Among what I had a hard time with was acoustic music. I thought that very odd as I THOUGHT it should have been easy on my ears. It was not. But I can listen to some of it now :-)

And more of what I could not tolerate, as well as more of what I could not easily tolerate before, becomes more listenable and Enjoyable, all the time.

I am glad that I was able to try a few different styles of music, and found what sounded good to me. Some of the other things I tried to listen to over a year ago now- still do not sound good to me.  But other things sound really beautiful.

You mentioned-

My new audiologist seems overly convinced that I can build up my sound tolerances by just doing the things Ive' always enjoyed doing,particularly listening to music.She recommended that I listen a half hour each day for one month to my favorite music.This I can describe as often painful to me.Through my experiences,music presents a harshness beyond description. Treble,when turned up too high sends me reeling! I have been on this protocol along with sound generators and feel worse

You mention something about the sound generators, but I wondered if you are really going through TRT?
From what I have read, TRT involves more than just the sound generators.
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Rob

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Reply with quote  #3 

My new audiologist seems overly convinced that I can build up my sound tolerances by just doing the things Ive' always enjoyed doing,particularly listening to music.

...........

 I wish it was that simple, Paul. 

...........

She recommended that I listen a half hour each day for one month to my favorite music.This I can describe as often painful to me.

...........

Then the recommendation is not for you.  Desensitization treatment should never be painful. 

...........

Dont trust just any expert that studies the books.They dont/cant feel the pain!

.........

They can't feel the pain.  That is true.  But there are some smart folks out there, nonetheless.  Tough to find, sometimes, but they are out there.  You need to find one.  I know you're going through a rough time, but with LDLs in the 70s you need to hear that you have something treatable.  You can do something about this, Paul, get past it, and live normally.  The first step is to take a day or two and feel what you're feeling now.  But next week, do everything you can to find a clinician who knows what he or she is doing. 

Rob

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peachoid12

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This quote from the Rare Disease Day page is true, succinct and relevant.


“People with rare diseases often face challenges that occur less frequently with more common diseases,” Saltonstall said. “These include delay in getting an accurate diagnosis, few treatment options, and difficulty finding medical experts. Many rare diseases have no approved treatment, and insurance may not cover treatments that aren’t approved. Medical and social services may be denied because those making the decisions are not familiar with the diseases. Also, treatments for rare diseases tend to be more expensive than treatments for more common diseases.”
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Reply with quote  #5 
hi paul,

you said something i recognize very well:

Quote:
music presents a harshness beyond description. Treble,when turned up too high sends me reeling!


i had the exact same thing during the first time of the hyperacusis. the higher the frequency (or musictone) the more it sounded offkey. listening to the radio seemed as if the treble was turned up and there was no bass at all!!! my hearing was tested and everything was within the limits but i swear i wasnt able to hear bass, something that tests did NOT reveal.

so, my whole world existed of treble sounds and it was a nightmare. i heard keys and coins around every corner and music was out of the question for a while. it will get better but it will take months/years, probably depending on how bad it is now. im sure hyperacusis is not about loudness only, there are so many factors like the one you described.

i first didnt listen to any music, then started out with music that had less dynamics (boring music), then later i added my favorite music which eventually helped me out. i still hear certain tones too high or strange, but overall its now livable. i believe when one hears sounds that are distorted, many appear as way too loud. it doesnt mean they are, but because you have lost the bass they sound bad and who wants to listen to music that is offkey? that is awful to everyone, also people with normal ears.
i know it was so scary but i want to give you hope.

take care,

astrid




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LizH

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Reply with quote  #6 
Hi Paul,

I'm just curious about your audiologist's instruction about doing what you enjoy, ie listening to your favourite music.  Did she say say anything about how loud it should be?  Perhaps when you're feeling up to it you could give it another try but this time with the volume reduced way down to a level which doesn't cause you pain. Maybe you also have to be very selective and find music which you enjoy but which doesn't involve sudden wide changes in dynamics.  From there the object is to very slowly increase the volume as your ears permit.  My audiologist suggested something similar but she did say it must be pleasant, not painful so you form pleasant associations again, not painful ones.

Don't give up yet,  Liz.
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Guflu

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Reply with quote  #7 
Quote:
Originally Posted by Astrid
i had the exact same thing during the first time of the hyperacusis. the higher the frequency (or musictone) the more it sounded offkey.


Hi Astrid

just want to get something clear here what you mean with offkey. Musically offkey means that the notes sound higher or lower than supposed to. As they say in Dutch 'vals'. It doesn't mean that the equalizing is 'out of balance', so that music sounds too shrill or without bass.

Sorry to hear you are still having the shrillness in some frequencies. But I guess you get used to this, don't you? It's no use fighting it...

And Paul, just remember, things can start sound normal again. In the beginning of my H all music sounded distorted and weird and all strange to my ears. Nowadays I can listen to music again, even though some music with lyrics still gives me a bit of a hard time because of the shrill 'S'-es. But I am sure this will subside in time as well.

Take care of yourself!



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Reply with quote  #8 
hi guflu,

analyzing what really happens is difficult. i lowered treble because it sounded terrible and added bass because i felt that was missing and it was. i guess thats what you mean by out of balance, but correction of the balance was not the solution to everything: hearing higher notes was torture because they didnt sound as they were supposed to sound, they sounded unbearably different. what this means from a technical aspect i dont know.

so perhaps it was both in my case. when the ears are a stereoplayer i guess mine were totally broken. no bass, no equalizer, low quality and speakers that were making sounds on their own. good description of my ears? lol.
you ask if i get used to it....yes till a certain degree i do. i dont think of it all the time, but let it be. but each time i hear a high frequency note (like you say the sssss) that doesnt sound normal it reminds me of what i went through.

take care you too,

astrid

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sucuqu

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Reply with quote  #9 
Paul,

I understand the pain of music.   When H first started, it was devastating and shocking to find that listening to music was painful.  I love listening to all kinds of music,  soft rock, country, classical and even opera.   the most painful was unfortunately many of my favorite female artists.     There was only one cd that I could tolerate and it was  a James Taylor  "October Road" that i had purchased right before this happened.   I played that over and over at short intervals and very low volume.  It meant the world to me that i could listen to something without extreme pain.     It did get better.  It's been over a year and I can listen to most music at low volume.  I still can not listen to all the female artists and opera isn't an option yet.  Even some classical isn't tolerated.   But I have the addition of Tinnitus which is also "irritated" by music for too long.   But just to give words of encouragement,  it will take time,  but music will come back into your life ---  maybe not the same as in the past,  but it will come.    Su
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Guflu

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Reply with quote  #10 
Quote:
Originally Posted by Astrid
when the ears are a stereoplayer i guess mine were totally broken. no bass, no equalizer, low quality and speakers that were making sounds on their own. good description of my ears? lol.


Since you are talking about this in a past tense, did sound come back to normal in a way? I know you have a low LDL and these nasty spasms to sound still, but what about the sound quality nowadays?

My ears in the beginning felt like broken speakers as well. Very shrill high frequencies which I wanted to turn down, all these extra overtones playing along in the music, no dynamics anymore, and a distorted noise on top of voices, metal and glass sounds and beeps. But things are better nowadays. Not perfect and sometimes still very shrill, but better. Strange how this works. I once thought I could never listen to music again. But I am now!

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saab1216

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Reply with quote  #11 

Dear astrid You are surely a light at the end of my perpetual tunnel. My clinician did advice me to listen to music at a comfortable level. Truth is, I Feel comfortable with Bassy music and raise the bar a little(increase volume).I feel a false sense of direction in what is acceptable volume.Music is one thing but many other sounds I just cant improve on.Coins, carkeys,metal doors,refrigerators etc. By applying music to my regimine,how will this build my tolerances to these Now tinny sounding annoyances.Yes, a thousand times over,I have no tolerance to treble.It comes in peoples voices.It just masks everything.I have been told by my clinician that I will undergo other treatments aside from the sound generators.I thought the generators were cutting down on my high frequency overdose but was sadly mistaken.While wearing them there is a reduction in treble overload but only because they mask the harshness.They havent helped much otherwise.Today, I drove 3 hrs,listened to music,played electric guitar and sat and talked to family for 2 hrs.The generators definately blocked the harshness.Now,towards evening,I feel super sensitive and more tinnitus kicking in.I may have overdone it all day!Now I have cotton balls in my ears to mask the computer.( it should be noted that this is an old thread and sound generators through a short course of time did help my tolerances).


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Reply with quote  #12 
hi paul,

thanks for your kind words to me. i have been where you are now and i know it takes alot of courage and patience.
here you said:
Quote:
I thought the generators were cutting down on my high frequency overdose but was sadly mistaken.While wearing them there is a reduction in treble overload but only because they mask the harshness.They havent helped much otherwise.

this is my experience too. i had wng's, generators that are used in trt training, tried them for a couple of months but they did nothing at all. i know they are not supposed to be maskers but they certainly were. and they were even bad maskers because the metallic treble stuff just went through them. i think all they do is giving a false feeling of security, a kind of a buffer to the outside world, so that housebound people come out of their holes and dare to walk down the streets. so in that sense its a method to conquer phonophobia. but when you have distortion to high frequencies, bad hyperacusis and a numerous other symptoms we often read about on this board, then improvement cant be from wng's but most likely from time passing by and natural adjustment to ones situation. anyhow, causes of improvement can never be proven.
it doesnt surprise me at all your generators are of no use either.

what you described all the things you did that day... i too think it was too much for your ears. try to be careful especially with the electric guitar and family gatherings that ask too much from ears that have a soundproblem. building up tolerance to sound will come naturally if you live in relative silence first, then slowly introduce more sounds without forcing it. i honestly think electric guitars dont belong to that list for now...lol. anyways, setbacks will correct themselves so its a matter of time and i know it can take a long while. so dont want too much in the beginning, try to be as patient as possible. i think six months from now the worst phase will be over.

take good care of yourself,

astrid

------------

hi guflu,

oh yes the metallic world...

you said:
Quote:
Since you are talking about this in a past tense, did sound come back to normal in a way? I know you have a low LDL and these nasty spasms to sound still, but what about the sound quality nowadays?


my soundquality isnt normal but livable. every now and then i notice that high notes dont sound as they should sound because of a strange metallic nature to them, and some appear higher than i think they should be. other than that i still have the ability to hear high frequencies from far away and far louder than others. i also hear sounds that other people cannot hear at all, as if my hearing has shifted to the hearing of a whale or insect. its very troublesome.
last week i was in a store and an alarm went off close to my ears. i was told the alarm wasnt so loud at all. but i ran away from the noise, even to another floor and i still heard it through the floor/ceiling. just an example for me knowing im far from normal, i looked around and nobody seemed bothered. and i had pain in my ears for two days afterwards and my ears felt very full.

i too thought i could never listen to music again and i was so scared and helpless. but now i have my favorites on all day long and i can recommend that to everybody with soundsensitivity because by listening to your favs theres a big chance you forget about the h quite soon, which favors adjustment.

take care and
regards from astrid

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aQuieterBreeze

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Reply with quote  #13 
Hi Astrid,

Listening to my favorite music did not make me forget,
though I have found MANY other benefits to being able to do so. :-)
And I do think it is possible to somewhat mask, or diffuse some sounds so they are less noticeable and/or less bothersome, with music- and for me that has been helpful at times- when other sounds are not really that loud, just bothersome.
As I have found that I have been able to play some music over my stereo at times, on low volume, at settings that comfortable for me, and found that has helped at times. For me.)

Also, There are still some musical selections after a year that I either find very difficult or am not able to listen to yet- but listening to the ones I can-
in ways that have been helpful to me, at levels that are ok for me -
And adding to what I can tolerate, when I am able to do so.
Along with other things I have been doing- has helped me immensely.
But we are all different, and my approach to using sound in ways I have found to be helpful, may not be what is right for others.
I am just really glad I have found some things that are helpful for me.

And I do think that the real key to my being able to tolerate more in the way of sound - is in part, by using sound in ways that I have found to be  helpful For Me. But it is much more than that too- For me it is alot of things, and I think it all works in combination .....


 Rob mentioned in another thread-
 If we are very, very lucky, the problem will improve by letting time go by.  For most of us, letting time pass will not help us and we need to purposefully take the necessary steps to reclaim our tolerance for sound.
 
 That is what I found- it improved a bit for me, as some time went by. Astrid, the 6 month time frame you mention really strikes me, as that is around the point it seemed like I thought I was doing much better, - but it was like a very fragile improvement for me. And not everything was better either,  There were alot of things that were not.  And it did not last. When I found out much later, there were actually alot of things i could do, that would be helpful for me, and  started doing some of them, (instead of just letting time pass) I noticed much more improvement.
But I still have a long way to go too.
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aQuieterBreeze

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Reply with quote  #14 
Guflu,

You mentioned-
In the beginning of my H all music sounded distorted and weird and all strange to my ears. Nowadays I can listen to music again, even though some music with lyrics still gives me a bit of a hard time because of the shrill 'S'-es. But I am sure this will subside in time as well.

Does it matter what vocalist is singing? as to what you can tolerate?
Or what sounds better to you?
I found some almost completely unlistenable, so I listened to others.
Ones that did sound good.

I also found some vocals seemed to be really "grating" on my ears- Smooth vocals sound better overall to me.
I am more sensitive to bass, and lower pitch vocals are more difficult for me.
(Though some high pitch tones are also difficult)
But as time goes by and I am able to add to what I listen to, some of those lower pitch vocals, and also some of the lower tones in the music are not as difficult.
Though others are still difficult.

But I think you are right, it will get better :-)

I notice alot of improvement in what I can listen too, and am happy when I hear others mention they notice improvement as well.


Su-
you mentioned-
...... It's been over a year and I can listen to most music at low volume.  I still can not listen to all the female artists and opera isn't an option yet.  Even some classical isn't tolerated.

To find what we can tolerate, that sounds good to us is wonderful :-)
I am able to keep adding to what I listen to, though some things still do not sound good.
But alot of things do, and some of them sound REALLY wonderful.
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Reply with quote  #15 
hi aquieterbreeze,

you said:
Quote:
Listening to my favorite music did not make me forget,
though I have found MANY other benefits to being able to do so. :-)


it must be different for everybody . being distracted from the problems is always good, no matter how you achieve it. masking by music is not exactly why i listen, but if im in a quiet room the tinnitus is too loud to my taste, lol, so thats also reason why i keep music on.

you said this too:
Quote:
That is what I found- it improved a bit for me, as some time went by. Astrid, the 6 month time frame you mention really strikes me, as that is around the point it seemed like I thought I was doing much better, - but it was like a very fragile improvement for me. And not everything was better either,  There were alot of things that were not.  And it did not last. When I found out much later, there were actually alot of things i could do, that would be helpful for me, and  started doing some of them, (instead of just letting time pass) I noticed much more improvement. But I still have a long way to go too.


on boards like this only the worst cases of hyperacusis tend to come and tell their stories and stick around. if you go to hearing disorder boards in general many people complain of soundsensitivies in all forms. the symptom hyperacusis comes among a load of other symptoms so those people are not aware theres a name for it. when you analyze their stories over the years, and keep following people you see clear patterns.
one of those patterns is that hyperacusis is temporary for a great number of people. when i try to find a timeframe of how long it takes for them to improve you always find 6 months approx., or sometimes somewhat longer, one or two years. that doesnt mean they are rid of the hyperacusis in all aspects, but by then they manage to live with the situation or then have habituated to the symptoms. in short, their initial crisis is over.

i dont say this goes for everybody, because for too many people hyperacusis seems to last a lifetime! like you said, just because the ears remain fragile, setbacks will likely occur in the years ahead. or ones hyperacusis goes better but other symptoms remain, or the other way around. its good you found ways for yourself that helped you better than time passing although you can never check whether you had achieved the same results if you had "done nothing". by actively doing things i assume you must have been using soundtherapies or soothing sounds, etc.

by the way, sitting and waiting for time to pass by, etc. doesnt mean one does 'nothing'. life involves all kinds of sounds possible, which means that every new day is a challenging therapy, even if you are moving on the edge of what you can tolerate.

hope this clarifies my point a bit,
take care and greetings from
astrid

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Rob

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Reply with quote  #16 
on boards like this only the worst cases of hyperacusis tend to come and tell their stories and stick around.
 
........
 
We get a representative sampling of all degrees of hyperacusis and other, related auditory and emotionally-based challenges.  Some folks who come here do not have hyperacusis at all, others have a little, but not much.  Still, others have moderate hyperacusis.  A few have severe hyperacusis.  Some may believe they have severe hyperacusis, only to discover they have some hyperacusis and severe phonophobia. 
 
........
 
one of those patterns is that hyperacusis is temporary for a great number of people
 
........
 
Hyperacusis is sometimes temporary, but this is generally not the case for most people.  Generally, the way to improve a decreased tolerance of sound is by desensitization therapy and not by letting time pass.  Desensitization works for most people, provided they are working with an informed clinician and using broadband noise that is well-suited to their needs, as well as daily exposure to other sounds and 'sound enrichment' at home. 
 
........

its good you found ways for yourself that helped you better than time passing although you can never check whether you had achieved the same results if you had "done nothing"... by the way, sitting and waiting for time to pass by, etc. doesnt mean one does 'nothing'. life involves all kinds of sounds possible, which means that every new day is a challenging therapy, even if you are moving on the edge of what you can tolerate.
........
 
It is a great idea to expose one's ears to all sorts of environmental sounds, but typically we must be involved in a desensitization program to purposefully do so.  The view that things wil get better on their own is, unfortunately, not the case with most people.   

Rob
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aQuieterBreeze

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Reply with quote  #17 
Hi Astrid,

you mentioned-
it must be different for everybody . being distracted from the problems is always good, no matter how you achieve it. masking by music is not exactly why i listen, but if im in a quiet room the tinnitus is too loud to my taste, lol, so thats also reason why i keep music on.

With music, I don't usually use it to mask sounds, I just found that at times it seems to be able to, though weather it is really a slight "masking effect" or it blends with the sound and diffuses it someway, I am not sure, but for me I found that helpful.
Alot of the time these days, I just leave it on for background sound- other times I Actively listen to it- for hours at a time. (Though I started out only listening for the length of one album) And I also started out listening on a REALLY low (barely audible) volume, at settings that were comfortable for me. The cd of nature sounds I have has a soothing track that sounds pretty good to my ears as well. The rest of it is allright too, but one track seems more soothing when I need something soothing for my ears.

About distraction- that is not why I listen but it does help not to remain in complete quiet- (I have heard lots of good things about "sound enrichment")

And to have something pleasing in the background does also help to take the minds focus off other sounds, as I think if we are in quiet- and try to seek out silence- the main sounds we may hear or that we may focus on, are those that we may wish were not there- so if someone is really sensitive to sound and they try to seek out quiet they may find what they notice are sounds like the fridge, motors running, distant traffic, ,lots of things, maybe the occasional birds.
But I think chances are that unless we put something on to listen to, or for background sound, that we  can tolerate and hopefully actually like, the main sounds around us - that we may notice the most - may be ones we wish were not there.
sounds like the fridge or motors or dishes when they clink, whatever- distracting sounds that seem louder and sound different than they should, and we may wish we did  not have to hear. Especially when our hearing is really sensitive and they can all be SO loud,
even our tinnitus, if we happen to have it, may be much more noticeable in  quiet surroundings - but if something else is playing it I think it allows our mind to have something else to listen to as well.  Even if our focus and our hearing still gets distracted and/or disturbed by those other sounds, that is not all we hear.
So it is not ONLY the sounds that are disrupting the quiet we were trying to find,  that we hear.

So in that way I think music or whatever we may listen to, and/or use for "sound enrichment"- may distract our minds from other sounds. And when sound is the problem, I think to be distracted can help.
(and being distracted, or focused on something else can help for other things too sometimes)
Just my thoughts though- I am no expert on sound, or sound enrichment- I just know that it seems to help alot for me.

And also there is the "contrast" that if something is quiet and then there is noise, the noise may sound a bit louder in contrast to the other relative quite we may have been enjoying. (Though being in quiet surroundings can make our t more noticible too)
For what it is worth, I really treasured silence. And when my t showed up - the same time everything got louder- the t was pretty distracting too.

With tinnitus, I can understand if yours is loud/intrusive that when you are in quiet surroundings and listen to/for it, it could be more difficult than when you don't do that.
I know especially when mine spikes it can get to be loud, and when I notice it- sometimes I think back to remembering when it was quieter. Sometimes I wonder, will it quiet down again......
But mine does, (and I know that) and it also fluctuates. I just try to remember that mine does that, and it quiets back down too.  And I try not focus on it too much. And as what I can handle in the way of sound improves, my t seems to be more settled around at least some sound. I noticed it seemed to get a bit louder when I started listening to music, so I started out with selections that minimized that.
Mine will fluctuate in accordance with other sounds as well, but settle back down later.
Sometimes fairly quickly after the sound that makes it do that quits.
When I first got these hearing challenges, my t was really loud- it kept me awake, making it difficult to sleep- loud enough to drown out the purr of one of my cats. who happens to purr loudly. I was heartbroken, I could not hear him purr,  but I can hear him purr just fine now.
Though my t may spike during setbacks and get pretty loud sometimes, I don't think it ever got that loud again......But it did take quite awhile for it to settle down to begin with.

You mentioned-
its good you found ways for yourself that helped you better than time passing although you can never check whether you had achieved the same results if you had "done nothing". by actively doing things i assume you must have been using soundtherapies or soothing sounds, etc.

When I started doing some things that wound up helping for me-
in the way of using sound in ways that I found helpful-
which I started out with by listening to a cd with some nature sounds on it- played over my stereo on low volume, for background sound - at settings I could tolerate-starting out with just a little time each day, and then eventually letting to just play over and over all day -
The difference was dramatic- verses letting "time pass"
within a short amount of time (about 6-8 weeks) my dishwasher sounded a bit less loud-
It totally amazed me-

And I don't think that would have happened otherwise- because I only starting doing that  about 2 years ago- I had already had these problems for awhile by then. And that was the first time I noticed anything like that. I also noticed that some of the setbacks I had would sometimes really disappear after a good nights sleep- I had thought that was somewhat of a myth that, that could happen-because mine never did before. And I also noticed it seemed to take more to cause some of them as well. Then just over a year ago- during a difficult setback, I discovered something that gave me a flash of insight and inspired me to start listening to music again.
(I was not even signed up for this board, and I happened across a few posts that had a really dramatic influence on me, even though I approached the ideas presented in a very different manner, I had quit listening to music for years, and finally figured out a way I could try to do so again.)

Not long after doing that I began to notice the same kind of "shifts" that I had noticed before, like with my dishwasher - in the way sounds in the real world started to sound to me. I can't remember exactly what it was - but something, and I was surprised. And that has continued. As I can add more to what I listen to in the way of music,  more sounds out side of music seem to be more tolerable. I have noticed that time and again. And the world seems to sound less loud as well.
So don't think that just letting time pass would get me to the point I am at.
But I do think doing things that I have found to be helpful to me - have.
Like I have said before, we are all different- and what I have found to be helpful for me may not be right for others- And I can't say what is.
But I am really glad to find some things that work for me.

But also using sound in others ways too- letting sound "in"
when possible, avoiding using hearing protection when possible, for me it is alot of things. And all in combination. But some days are still better than others,. And sometimes of year are easier for me- like now-  the lawn care and many construction crews are in hibernation so to speak.  The sounds from them can be pretty difficult on my hearing/ears-
sometimes more than others. It was a bit easier last year, and I hope this next summer it will not be too difficult. But I know those are some of the most difficult  sounds for my hearing- in part because they can be ongoing for hours at a time, days on end- and sometime sound really carries.
I am not really worried about it, I just think if I can build up my tolerances to those sounds, the lower frequencies that are common to the motors or of that type of equipment, and also to the volume, more than I have- I think I will have an easier time of it this summer.

You mentioned-
by the way, sitting and waiting for time to pass by, etc. doesnt mean one does 'nothing'. life involves all kinds of sounds possible, which means that every new day is a challenging therapy, ....

I think it is good that you do that. and that you leave music that you enjoy playing as well.  I think alot of things can work in combination to help us get better.
I also know that since I have been doing things that have been helping for me- the "daily grind" part of enduring sound- is not as much of a grind. The sounds are not generally AS difficult for me as they were, which makes it all a bit easier, for me, for the most part. But I still have  some things to work on.

Though my challenges are a bit different in some ways than yours and Lynn's-
I have gained alot of inspiration from Lynn, and others around here- when it comes to using sound, in ways  that I have found to be helpful for me.

And I truly owe a great deal of thanks to some around here,
They have helped illuminate the path I am on, and been an inspiration as well.
And helped to make that path smoother too.....
And to know things can get better has been REALLY important for me too,

About the timeframe of 6 months-
But at about that 6 months- I thought I was doing better,  but I still was not listening to music, and background sounds were not in the background, and I still needed my muffs for a lot of things- and I probably still wore haring protection  when going to the store- and there were many more places  I could not go - but I was doing better than before- so I thought I was doing pretty good. 

At this time, I am still .happy with the progress I am making .
But If I could have gone to one of those KNOWLEDGEABLE and dedicated Clinicians that Really knows about these challenges- Long ago- I think it would have helped me greatly.
And think I would be alot farther along than I am now.
Even just the counseling and general information about these challenges I think they could have provided  would have helped for me- because it has taken me a long time to figure out alot of things. And it is a continual process too.

Thanks Astrid for helping clarify some of things in your post I appreciate knowing some of that and where you are coming from a bit - so to speak,
I know you have been through it, in alot of ways-
Thanks for taking the time to talk, (though sorry this is so long)
hope you have a wonderful day-
Peace and a Happy day  to you
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Layla

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Reply with quote  #18 
lol about the boring music.. he he, I found that to be sorta true also.. I never liked 'too high' or 'techno/house' music/sounds anyway.. for me, acoustic was okay (medium-high voices and tones)  You may need some new 'favorite music'!! (I did!)

Astrid & Breeze, interesting what you mention about 6 months and 2 years..
I did feel better after 6 months or so, even started having driving lessons (thought it would be impossible, but the music from the radio and chatty and lovely female instructor made it possible!!) & even passed the test!
Mind you, I didn't even know I had hyperacusis at the time, I only thought the factory & church bell behind our house was 'too loud'!!
(moved to Granny's where it was quieter and it was better.. until she turned on the washing machine lol!!)
I did have another relapse that spring/summer after some other stuff happened..

I do feel muuch better now, and it's been about 2.5 years or so.. I still find listening to some music a bit uncomfortable/unpleasant, and some high frequencies/vocals seem 'distorted' (eg I remembered I had enjoyed the song before, but don't anymore.. no idea if it has to do with different radio formats for songs too..it might..)

To you guys still struggling, what is your nutrition like? are you vegetarians/is the food kinda boring or one-sided? (mine was) check on Cronometer or fitday.com
eating more meat and more mineral-rich food has helped me a lot.. (if you do eat meat, you may still have a defficiency if you don't absorb well - lemon juice/vitamin C with meat is recommended especially after 40/if not enough stomach acid - or maybe you eat too many antagonists/drink too many sodas etc? coffee & alcohol decrease magnesium & may cause problems too..)
Even now, it makes a big difference if I eat some meat or other mineral-rich food, or not.. and if I eat at all.. (h. & t. get worse if hungry.. or lacking eg magnesium, zinc, B12 etc) It makes a difference in amount of being annoyed by keys, refrigirators and such too.. (and even the computer sound)
Also, the more upset one is, the worse it is (at least that was my case) - it was best to try to relax as much as possible.. (sometimes easier said than done, I know! ) Once I realized I can make the h. & t. go away with food and massage and pleasant music etc, it was much better, and I wasn't so scared of them anymore, if this makes sense..

I'd second caution with electric guitar.. Still don't handle electric guitars best (especially the high & 'screaming' ones..) or 'ringtone' qualities.. Other stuff is mostly okay.. like softer pop/rock or solo piano etc. Don't enjoy Jimi Hendrix anymore.. (yet! he he) Still working on it.. Hope someday it'll all be enjoyed again!! It's already muuch better than it was at times!!

So, wishing you guys success with this!!

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Reply with quote  #19 
Quote:
We get a representative sampling of all degrees of hyperacusis and other, related auditory and emotionally-based challenges.  Some folks who come here do not have hyperacusis at all, others have a little, but not much.  Still, others have moderate hyperacusis.  A few have severe hyperacusis.  Some may believe they have severe hyperacusis, only to discover they have some hyperacusis and severe phonophobia.
 
you call it representative, i dont. most leave the boards either sooner or later, just because they have improved. this is what happens on all medical boards on the internet. people dont feel like going back to boards that remind them of the problems they once had. its natural. the majority are new people, people that for some reason do not improve as fast as they want and last but not least people who have it real bad. its precisely the last group that tends to stick around.
 
Quote:
Hyperacusis is sometimes temporary, but this is generally not the case for most people.  Generally, the way to improve a decreased tolerance of sound is by desensitization therapy and not by letting time pass.  Desensitization works for most people, provided they are working with an informed clinician and using broadband noise that is well-suited to their needs, as well as daily exposure to other sounds and 'sound enrichment' at home.
 
to summarize you say that most people can only improve by a combination of desensitization therapy, an informed clinician, broadband noise and 'sound enrichment'. i can tell you that most hyperacusis patients have nothing at all other than the sounds in their environment. they have no desensitization therapy, no informed clinician and no broadband noise.  i dont know where you have that information from but if it is your intuition, i dont share it.
 
Quote:
It is a great idea to expose one's ears to all sorts of environmental sounds, but typically we must be involved in a desensitization program to purposefully do so.  The view that things wil get better on their own is, unfortunately, not the case with most people.

again: i dont know where you get it from that people 'must' be involved in a special program to get better. people with hyperacusis mustnt do anything. they are free to do what they feel is best. and if they decide to do 'nothing' at all, hoping or trusting things will eventually improve on their own, its their choice. and its not a bad choice at all. they can also choose for complete other remedies. sound is everywhere, theres no need to search for special noises in whatever color for symptoms in ears that dont care at all whether its white or pink. actively trying to tackle the problems is another choice, but its not the only option that one has.

by the way, most patients are not sitting and waiting at all. seeing all those doctors, specialists, audiologists, trying medication and all kinds of therapies, all we read about on the board, is beyond active. to state people typically only improve by the healing program you continuously seem to advertise, there are no records so the cause of possible improvement remains unknown, even if there is a strong conviction its all because of an 'active approach'.
 
 
astrid (<----- thats her name)
 
 
------------------------------------------------------------------------------------
 
 
hi aquieterbreeze!
 
 
phew your post was indeed long. lol. here some responses:
 
Quote:
But at about that 6 months- I thought I was doing better,  but I still was not listening to music, and background sounds were not in the background, and I still needed my muffs for a lot of things- and I probably still wore haring protection  when going to the store- and there were many more places  I could not go - but I was doing better than before- so I thought I was doing pretty good.
 
since you still wore hearing protection at 6 months i think you delayed the natural process of improvement. the timeframes i mentioned are less valid when you stop progressing on purpose. i know you were not able to resist the temptation to wear muffs though, so its understandable.
 
Quote:
But If I could have gone to one of those KNOWLEDGEABLE and dedicated Clinicians that Really knows about these challenges- Long ago- I think it would have helped me greatly.
And think I would be alot farther along than I am now.
 
easier said than done. the chance you find a 'knowledgeable' clinician is almost zero. in my country they do not exist and i have seen the best professors so to say. they all proved to have no idea about hyperacusis. some never heard of it, others say its just playing games with your mind, or they just stared at me with their mouths wide open. it would indeed be nice to talk to someone who knows his stuff, but then again i think hyperacusis is too individual to set up a general treatment.
 
 
thanks for all you shared with us!
 
 
astrid
 
 
----------------------------------------------------
 
 
hi layla,
 
 
what a cute post! i recognize almost everything in what you said. yes, just like you theres still some distortion in high frequencies and some music, but its much better than it once was. all those symptoms are somehow connected together and ive been thinking alot about what it can be. i think that distorted hearing leads to immediate hyperacusis because those effects make sound appear far louder than normally. what do you think about that?
 
i will look into the websites on nutrition you mentioned, thanks for that info. so far i have not found a link but will check everything once more.
oh tell me about it...lol... the keys, the computersound, the washing machine, etc.... very good that you had drivinglessons even around six months after the onset of your hyperacusis. this also shows that hyperacusis can diminish when you give it time. the other thing you said is also true, most people who get this dont know what is happening, mention it to their doctors and on msg-boards, etc. only to find out much later that the name of this particular symptom is hyperacusis.
 
 
thanks and take care you too!
 
 
astrid
 
 
 
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Rob

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Reply with quote  #20 
Astrid,

My views in this thread are based not on my intuition, but on the current state of things as it is well understood by people who study hyperacusis and treat patients who have it.  Hyperacusics require desensitization therapy to improve.  There are different ways to go about it, but if it isn't done hyperacusics generally do not get better.  You write that it isn't a bad choice at all "to do 'nothing' at all, hoping or trusting things will eventually improve on their own."  This is not the case.  In fact, the opposite is true according to scientists who study it and clinicians who treat it.  The suggestion to do nothing at all is precisely what a hyperacusic should not do. 

Rob
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aQuieterBreeze

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Reply with quote  #21 
Dear Astrid,

The reason I posted what I did- was to try to let you know that
I really do believe that desensitization, and sound therapy does help.

I thought Rob made some really good points in his post,
and I took it to have a pretty positive message, that things can get better.

But I also thought that if perhaps I shared more of my story you may listen to me.
Though I know we share different views on using sound therapies.
I also think that with using sound it is not always a "one size fits all" solution when it comes to these challenges, but finding what does work for someone can be really helpful.
I know it has been for me.

By the way, it was one of Rob's posts,
that led to my being able to listen to music again,
which I had quit doing for years, mainly because I could not handle percussion,
and the rest of it was too loud too.
And being able to listen to music again in ways I have found to be helpful for me,
has been very helpful to me, in alot of ways.
And I do not think I would be doing nearly as well as I am,
in dealing with these challenges at this point otherwise.

I still have some more things to work on, as some sounds are still pretty difficult for me, but at least in some cases not as difficult as before.
And what I can handle in the way of overall volume of sound in many cases is also much improved, from where it used to be.

I may still have a long way to go though, but I will keep working on it

About sound therapy and using sound for desensitization-
I have wondered if sound therapy is a little like physical therapy? But for the ears?
Kind of like physical therapy for healing from an injury. In some cases, someone may be able to "heal" somewhat without it, but I wonder if they may be more prone to reinjury in some cases too? And they may be in better condition and wind up healing better- if they went through physical therapy?
 
I am not in the medical field though,
and those are just my thoughts, and something I just kind of wonder about.

And many around here know alot more about some of these things.than I do
And as far as the ones that do, including Rob, and others -
I am extremely grateful they have shared, and continue to share, their knowledge and experience. And their insights as well as their time.

AS far as the people on this board-
Maybe it is those that that had or are having a really difficult that time- that stick around for a long time?

Maybe - and some of them are better now, and stick around because they are kind eneough to try to help others-
And My sincere thanks goes out to all of those that do.
 
you mentioned-
......it would indeed be nice to talk to someone who knows his stuff, but then again i think hyperacusis is too individual to set up a general treatment.
 
I too wish there were more clinicians that were TRUELY knowledgeable about hyperacusis, and it's related conditions.
And I think if someone found the RIGHT, KNOWLEDGEABLE clinician - that clinician would know there are individual aspects to each persons case.

I think the clinician someone goes to can sometimes make a big difference.
And The ones on the lists I have seen are not near me either.


Peace to you Astrid
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aQuieterBreeze

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Reply with quote  #22 
Rob,

You mentioned-
 
hyperacusics require desensitization therapy to improve.  It's correct and commonly understood information.  There are different ways to go about it, but if it isn't done hyperacusics generally do not get better.
 
From my perspective, I see it as Positive-
because I think if people know there really is something they can do, about these challenges, It helps alot.
 
I spent a long time seeking silence, and basically "doing nothing" to improve my tolerances to sound - hoping to get better.

Finding out there were things I COULD do really helped.
But doing them helps even more, for me..

Thanks for being one of the people that has made a huge difference for me, as I travel this path.
 
Breeze
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Layla

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Reply with quote  #23 
lol Astrid - glad you find my post 'cute'! I found yours very interesting too!!

Well, I agree with both you and Rob and Breeze, if that is possible..
All of you bring valid points to the debate..

I have learnt a lot from Rob too.. the music regime etc - really valuable!! So big thanks for this too!!
..and while I had no TRT or specific 'pink noise' (or whatever color ) I did - after reading things here - stop shutting myself away from noise (or trying to) and embraced eg computer noise as 'pink noise' that might actually help me get better!! and listening to pleasant music really helped too..

I also agree with the mention things may be individual - eg with some people, nutrition may be more or less important, depending on the cause of hyperacusis.. (there can be many causes, just check Wikipedia)

There still seems to be debate about TRT, eg my ENT said he's against it (for h.) and would never prescribe it to me - but he did recommend listening to pleasant music too..

I do think these are all 'pieces of the puzzle' and it's not 'either-or' but 'and'.. If this makes sense.. We are all learning from each other.. I was greatly inspired to read your comment that even for people who 'did nothing' (on some other boards) it seemed to have improved..!!
It is consistent with my own experience, a bit. I had 'short episodes' of what I could now call hyperacusis (but didn't know it then) before already.. I did nothing (but rest and relax a lot, and withdrew from the stressful/noisy environment) and it sorta improved.. (It wasn't as bad as the final two though..)

The nutrition site that helped me most & started me on this 'nutrition thing' is http://www.ctds.info/ specifically http://www.ctds.info/noise-sensitivity.html
(found it by googling 'noise sensitivity' I think), I read some books too.. We've talked about nutrition on this board too, with Lynn and Debbie, on the antioxidants thread and elsewhere.. maybe you can do a search? a bunch of minerals & vitamins are important.. basically everyone needs to find which ones they are lacking, as it can be highly individual depending on your diet or other health..

Fitday http://www.fitday.com/ and Cronometer are just tracking programmes, to see how many minerals & vitamins you take in.. if you google Cronometer you'll find a few sites (with strange names lol) where you can download it from (it's free to download and lovely to use; only becomes a problem if you have to reload the computer all can be lost..otherwise I prefer it from fitday..)
There are better sites out there, like The Daily Plate etc, but these two are free to use for breakdown of vitamins/minerals too..

Well, good luck with further experimenting!! The important thing is too keep our minds open and embrace and check out new things that might be of help.. For example I was astonished - and delighted! - when massage of tense muscles seemed to cure my tinnitus, when in bed at night!

ctds lady recommends the book on Trigger Point massage therapy (for back-related issues some of us have had), and the guy in the book says he had sort of sound sensitivity (to eating noises AND other noises) too - and basically a psychiatrist did help him deal with that, guiding him through relaxation exercises and hypnosis! I was really astonished to read that! (& thought to tell JenMcK and others - she doesn't seem to be around anymore..) He did say nutrition was important for trigger points and such too..

So basically, it can be a combination of lots of little things.. I'm willing to try these things as long as other people have found it helpful.. especially when they are natural and low-cost and/or free And as far as I understand it the good audiologists and such advise people to do the free/low cost things too, and only if nothing else works, they consider TRT.. at least that is how I understood it on the board...

Wishing you all good luck with this all!!
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Guflu

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Reply with quote  #24 
Quote:
Originally Posted by aQuieterBreeze
Guflu, (...) Does it matter what vocalist is singing? as to what you can tolerate? Or what sounds better to you? I found some almost completely unlistenable, so I listened to others. Ones that did sound good. I also found some vocals seemed to be really "grating" on my ears- Smooth vocals sound better overall to me.


Actually, yes, but mainly for the pronunciation of the letter 'S'. And it is more often that the 's' is sharply sung by females than males. But I am glad to be able to listen to songs of my favourite artists again, like Bjork, Oi Va Voi and Kate Bush.



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aQuieterBreeze

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Reply with quote  #25 
Hi Guflu,

I am behind the times when it comes to music,
I spent several years not listening music.....
and can not think of what kind of music they play/sing,
but am very glad that you can again enjoy some of your favorites.:-)
I do think the rest will get better too- and am counting on it as well.
And I  imagine as your hearing reacclimates to those higher pitch sounds,
it will all sound better again, eventually. Or at least more of it will.
And maybe a bit more, bit by bit- as time goes by.
With what I listen to- I am finally able to listen to some folk music
that has some pretty nice harmonies. The interesting thing about having my hearing more sensitive to sounds, is I still notice them, all the sounds, - in the music more than I ever did before.
(before I got these hearing challenges)
I don't know if you notice that? But when some of it sounds good-
it sounds REALLY good :-)

Layla,

You mentioned-
I still find listening to some music a bit uncomfortable/unpleasant, and some high frequencies/vocals seem 'distorted' (eg I remembered I had enjoyed the song before, but don't anymore.. no idea if it has to do with different radio formats for songs too..it might..)

For what it's worth, when something comes on that sounds "off" to me- I usually change the channel. Some things I used to be able to listen to- still don't sound right.
With other things I wonder if they are new re-mixes of old songs- I notice that with a couple of artists., a couple songs i have tried to listen to on the radio- sound like they may have been remixed- to sound louder overall-
but who knows- maybe someday it will sound allright? I guess the real way to check would be to get the album out and see how it sounds at home- Considering the artists and the songs- they could just be a bit much for me still. One was a Bruce Springsteen tune and the other is one by Bob Seger. Neither of which is anything I listen to at home yet.

You mentioned-
There still seems to be debate about TRT, eg my ENT said he's against it (for h.) and would never prescribe it to me - but he did recommend listening to pleasant music too..

If I remember right, your ENT had only seen one other person with H-
And wanted to do some VERY noisy test on you, till you told him not to-
at Rob's recommendation, If I remember right. (Do I?)
So- If your ENT has that much experience, with H
I find it interesting he recommends against TRT. And wonder what he bases that on?
But I think you are wise not to go thru TRT with someone who has only seen one other case of H.......
(Or would he have recommended someone else?)
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aQuieterBreeze

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Reply with quote  #26 
Rob,

As far as having these challenges get better on their own-
I really think that if I started doing somethings long ago, I would be alot better by now- it was not just that I used hearing protection more than what is advisable-
though I never really went "overboard" with it as I have seen some talk about-
But to have known that there were things that I could do- even though there was noone in my area that was on those lists I had seen - that were knowledgeable about hyperacusis and TRT. And to know there were things I should not do- and to find them out- and find out that people were using sound in ways that were helpful,  for them - made a dramatic difference for me.

But that is just me- and I am thankful for the people here who talked about things,
like desensitization and using pink noise, and music, and nature cd's - and  let someone who was only reading this board, looking for a way to try to get better - know there were ways to do that. 

Thank You!
Breeze

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Reply with quote  #27 
To rob i'd like to say that just like you disagree with me, i disagree with you. the scientists and clinicians you bring up differ tremendously when it comes to insights and views, and hyperacusis remains an unexplored field. i think its one-sided and thus misleading to take out one view and present it on the board as if hyperacusis has no further secrets. 
 
but: its not useful for people to read you and i are so far apart in our respective views, neither does it help us in any way. now views can differ and its not even a bad thing.
 
 
--------------------------------------------------------------------
 
 
hello breeze,
 
breeze, you said :
Quote:
I see it as Positive- because I think if people know there really is something they can do, about these challenges, It helps alot.
 
if one feels a certain 'therapy' is helpful, then that is what matters and nothing else.  
 
peace to you too,
 
astrid
 
 
 
 
-----------------------------------------------------------------
 
hello layla!
 
cool! computernoise is indeed a kind of 'pink noise', lol...... it can aggravate tinnitus or be unacceptable, on the other hand it keeps you out of complete silence. the problem for me and for some others too is that the sound of it has been distorted in the beginning, so there was a whining aspect to it which at some point was too hard to bear. this diminished over time, i think it lasted six months or so for the worst episode to get away and this happens all the time as i read it on the internet. anyway, thats what i also wrote to saab1216 who initiated this thread with his concerns.
yes trt is not being prescribed here either and if you'd ask for it im sure you get to hear that you can just use music or stay out of silence to achieve the same. in fact i asked numerous specialists about all this and none of them seemed impressed or never heard of it, so i let it be. after all, if trt was the solution they cant inhibit patients to get it.
 
you said this:
Quote:
The important thing is too keep our minds open and embrace and check out new things that might be of help.. For example I was astonished - and delighted! - when massage of tense muscles seemed to cure my tinnitus, when in bed at night!
.
 
i cant agree with you more! im also interested in a holistic approach of symptoms and fortunately alot of new insights have begun to come to the surface so theres hope. oh... i think in fifty years time people would laugh hearing that hyperacusis was once 'treated' by a councellor who helps you psychologically and wng's with sound that the brain filters out right away!!!
 
you go girl,
 
astrid
 
 
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aQuieterBreeze

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Reply with quote  #28 
Astrid-

I joined this board to say thank you to some people- just over a year ago-

I had written-

This note is one of deepest thanks,
to so many here in the hyperacusis community.
Thank You for sharing your ideas and experiences as you travel this path through life..........
.......And I have been observing for awhile. Too shy to say hello.
But my desire to say thank you, has finally overcome my desire to remain silent.
So it is with gratitude, that I say thanks to so many here-
for sharing your knowledge, and experiences, perspectives and ideas.
 
  Peace and the beautiful quiet sounds of nature to you



To get the help I have gotten since I signed up here - has been a plus, and I am grateful for it.
When I joined this board, there were some here that seemed very depressed,
I was actually worried about them, and thought that perhaps I may be able to provide some positive input...

And a little color can brighten one's day.
I also happen to use a little color here and there in other places in my postings sometimes as well.

I joined this board because I wanted to thank some people-
Rob happened be one of them, there are others as well.

They happened to be an inspiration and helped illuminate a path for someone they had never heard of, who was very happy to find that path.

If you want to call me one of Rob's friends, that's fine, I'll take it as a compliment.

I have spent alot of time here over the past
year, along the way, some have helped me greatly, and I am very thankful for that.

Wishing you Peace
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Guflu

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Reply with quote  #29 
Astrid, I am glad you preach 'not cutting the tendons', for if it wasn't for you I would have thought of it to be remedy for my TTS. And now I truly belief it isn't. And I thank you for that. My spasms are slowly subsiding by focusing less on the ear problems and through relaxing techniques for the jaw muscles and surrounding tissues. And who knows, maybe my WSG's are helping as well. I believe they do. That's my truth

But I belief a patient should definitely find him- or herself a knowledgeable clinician, instead of relying upon information from the internet. Even if it takes a year or more to find someone.

I still hate it that in the Netherlands the 'masking of the T with a similar sound' is propagated. And that noone really offers anything for hyperacusics, instead of telling them to 'learn to live with it: it won't disappear and you are stuck with it'. A friend of mine though was told that hyperacusis is a temporary phase in getting hearing loss, and that when it's over and you have a setback, it is like having a headache. He is good now, H not a big problem. Though his hearing loss is giving him a hard time.

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Rob

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Reply with quote  #30 

I try to provide information about the kinds of approaches that knowledgeable folks in the field generally agree can help someone to re-establish their tolerance of sound. And while I do have some suggestions of my own, many times these aren't "my" suggestions.  They are consensus views from clinicians and researchers in the field.  

 

Rob

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Guflu

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Reply with quote  #31 
I just happen to know for a fact that in the Netherlands there aren't alot of people informed about hyperacusis. My doctor never heard of it and I was the first in her entire career that entered her office with this challenge. Initially I was sent to a psychologist to address my stress. I had to cross borders to find a person that took my ear problems serious, and actually knew what I was talking about. And I am so glad I found her.

Doctor's, ENT's, audiologists, they just don't know what to do about it, other than tell you 'learn to live with it'. Or they just give you their ideas because they don't want to come across as being 'dumb', with the occasional problem that you might be giving a totally wrong advice! They focus on hearing loss. And when a person seems to have normal hearing according to the tests, they conclude that there's no treatment needed.

And what about that TTS? Who really knows what's going on? I have it, but luckily it is getting less and less. LizH has it. Astrid has it. Lynn had it. So little known about this.

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aQuieterBreeze

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Reply with quote  #32 
Hi Guflu,

I happened to agree with just about everything Rob said in his post #16 to Astrid.
That is why I had written what I did in my post #21 to Astrid


Something I had said was also taken out of context a while back-

Astrid mentioned-

like you said, just because the ears remain fragile, setbacks will likely occur in the years ahead. or ones hyperacusis goes better.....

I was replying to what Astrid had said about a 6 month time frame-

and what I really said was-
(as she did quote in her message,- but then summarized differently.)
What I had said was-
That is what I found- it improved a bit for me, as some time went by. Astrid, the 6 month time frame you mention really strikes me, as that is around the point it seemed like I thought I was doing much better, - but it was like a very fragile improvement for me. And not everything was better either,  There were alot of things that were not.  And it did not last. When I found out much later, there were actually alot of things i could do, that would be helpful for me, and  started doing some of them, (instead of just letting time pass) I noticed much more improvement. But I still have a long way to go too.

Guflu,

I am glad that you did not have the surgery you talked about, and I do think it is good that Astrid stands up against that. She knows what it did to her.
you said- (to Astrid)

I am glad you preach 'not cutting the tendons', for if it wasn't for you I would have thought of it to be remedy for my TTS. And now I truly belief it isn't. And I thank you for that.

Like those who have been through an MRI without earplugs, there are some things we wish no one would have to experience, and sometimes letting people know what happened, can help others avoid the same errors.

I think we all have our own challenges, and some days are better than others for all of us.

I wish you and everyone else around here more "Better Days" than not-
and Rainbows after storms-
Peace to you and everyone else in this thread.
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Rob

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Reply with quote  #33 

 
 
Shouldn't we encourage people to educate themselves about their options, including the importance of being diagnosed by a knowledgeable doctor, and keep moving forward into treatment?  Informed clinicians are out there.  After seeing several more doctors, I finally found a good one and later I found an excellent audiologist.  We are all in the same boat as far as this issue goes.  It isn't easy no matter where you live to find a good clinician who is knowledgeable in the diagnosis and treatment of hyperacusis.  But they exist and finding one should be our first priority.          
 
Rob
 
 
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Guflu

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Reply with quote  #34 
I thank Astrid for preaching to 'Never Cut The Tendons'. She definitely has reservations against the TRT-treatment with broadband noise. I on the other hand have experienced that it has helped me tremendously to regain my tolerances.

And I searched long and hard to find a clinician who understood hyperacusis, and I am glad I found her. Also, Rob, I admire the way you lend out a helping hand to people on this board in a constructive and positive way.


Have a good day people!

__________________
It's the sparkle you become when you conquer anxiety. [Bjork-Crystalline]
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aQuieterBreeze

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Reply with quote  #35 
Rob,

Just so you know- the fact that you were able to come up with something for yourself,
that could help you regain your tolerances. Was an inspiration to me. My hearing was so sensitive to bass as well as percussion, I had the bass turned all the way down. even for the natured cd I listen to. It still is in my car. But on my stereo at home, where I am working on getting it back to a normal level, it is just below halfway there- most of the time. And I am able to listen to more all the time that has a little more on that low end- like some of the harmonies in the folk music I mentioned. (to Guflu) When I could finally listen to something on the cd- other things were still difficult. More are ok and sound good to me though. Actually some sound REALLY good.
I  know what I am doing is helping for me, I have seen/heard it in the way the rest of the world sounds to me.
I spent a long time seeking silence. Other things happened that shattered my world as well.
To eventually find out two years ago that there were things I could do that may help for me- was great, to find out just over a year ago  I could listen to some music, was incredible. to find it could help me regain my own tolerances, was something i never really expected. but then i did not expect to be able to listen to any R&R music ever again. When I could listen to some things, like an old classic rock tune called Question
I was totally stunned. (When I could turn it up a bit that was even better!)
I wish no one had these challenges- but if I have to travel this path- I am certainly glad that you have been there to help me through it- and you never even knew it, for a long time.

What people say can sometimes make a big difference

Thanks for the difference you have made for me, as I travel this path.
You really do have my gratitude, along with my hopes that as you continue working on your own recovery,
your path will get smoother all the time, and one of these days, you will find - you have gotten even further than you ever thought possible.

Much Peace, And a World of Brighter Days to you,
Breeze
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dylan

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Reply with quote  #36 
The moderators have edited this thread. Some posts have been deleted. Personal attacks and comments referring to personal attacks have been removed. Posters are reminded to treat each other with respect and kindness at all times.

Moderator 
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Rob

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Reply with quote  #37 

Paul writes --

My new audiologist seems overly convinced that I can build up my sound tolerances by just doing the things Ive' always enjoyed doing,particularly listening to music.
 
.........

This is probably not true, Paul.  Your audiologist doesn't understand something very basic about hyperacusis.   

...........
 
She recommended that I listen a half hour each day for one month to my favorite music.This I can describe as often painful to me.
 
.........
 
The audiologist has a romanticized view of the challenge you face.  Your experience makes good sense.  Your tolerance of sound is lower than it used to be, and so the idea that you could listen to what you used to listen to for one month may not work. 
 
............
 
Through my experiences,music presents a harshness beyond description.
 
..........
 
Many of us understand what you're experiencing. 
 
.........
 
Treble,when turned up too high sends me reeling! I have been on this protocol along with sound generators and feel worse.I may have to agree with Peach on one thing! If sound hurts than turn it off!
 
...........
 
I agree with Peachoid about this.  In fact, no knowledgeable clinician would tell you that if it hurts you should continue listening to it.  Let me give it to you straight: If it hurts, shut it off.  No one with hyperacusis needs to be in pain in order to improve. 
 
........
 
I find that I am more comfortable balancing the facts and/or opinions expressed on this site than those of my own specialist!
 
..........
 
Then it may be time to find a new clinician.  The one you have is not a specialist.
 
.........
 
She was allowing me to fly to Hawaii(over ten hours)with L.D.L.readings at 70. I decided against it.
 
.........
 
Believe it or not, she was likely right about this.  Provided you used hearing protection, particularly a good set of noise cancellation headphones (such as the QuietComfort2 by Bose) you would have been fine.  How do I know this?  I'm speaking from experience. 
 
.........
 
I speak for all of you brave soldiers with h/t....only you know the real deal about this malady first hand! Dont trust just any expert that studies the books.They dont/cant feel the pain!
 
.........
 
No, they can't.  Still, there are smart and knowledgeable doctors out there and it's our job to find one.  With LDLs in the 70s, there is no doubt in my mind that if you take the steps you need to take, you will be able to re-establish your sound tolerance.  The smartest move you can make, Paul, is to find a doctor who knows his stuff and can help you with a program geared to your specific needs.  That doctor is out there.     

Rob

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ladythunder

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Posts: 114
Reply with quote  #38 

Quote:
Originally Posted by peachoid12
This quote from the Rare Disease Day page is true, succinct and relevant.


“People with rare diseases often face challenges that occur less frequently with more common diseases,” Saltonstall said. “These include delay in getting an accurate diagnosis, few treatment options, and difficulty finding medical experts. Many rare diseases have no approved treatment, and insurance may not cover treatments that aren’t approved. Medical and social services may be denied because those making the decisions are not familiar with the diseases. Also, treatments for rare diseases tend to be more expensive than treatments for more common diseases.”

Ain't that the truth! Seems they want to blame us at times as well for getting these things which we can assure them, we didn't want in the first place..
 
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