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anniekin

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Reply with quote  #1 
I had a short exchange with Poolmon in recent days and the topic of recruitment came up. Maybe you can read that too for background. I am relatively new to the chat here.

I have mild/moderate hearing loss, tinnitus and what is probably cat 3 hyperacusis, all as result of a noise attack (prank bomb) about 15 months ago. I have been doing TRT for 10 months, and have had a tiny bit of improvement (5 decibels) according to LDL test, and this seems encouraging in the abstract but the change is barely perceptible and not enough to change what I can actually do/enjoy in life. My LDL is at 55-60. At this point I find myself revisiting the question of how do you know what is H vs what is recruitment when you have H and hearing loss. The first docs and audiologist I saw right after the injury told me it was all recruitment, but they were not knowledgeable about H. and offered no treatment of any kind other than 10 days of steroids, so I certainly wasn't inclined to leave it at that.

I found help on my own, a TRT trained audiologist, who feels I have H. Of course I want to go with belief #2 since it is treatable. As time goes on and I am not much better I begin to feel a little haunted by the idea of what if it is more recruitment? This thinking won't change my compliance with my treatment or anything at this point, but I just seem to be stuck wondering. It may just be the wanderings of a worried mind, but I think it would help me to get some outside input from people who have talked to many people with these problems.

Are there any common descriptions you've heard from people with both to help understand whether what you are experiencing is more one or the other? I have read your description on the net about the 2 things and felt that what I experience was more like H. but still I am still wondering. Any input would be helpful. Thanks for the forum.

Annie
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Rob

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Reply with quote  #2 
Annie -

That is a very interesting question.  For starters, I suggest you go to the Home page of this site and click on the link where Dr. Nagler describes the differences between hyperacusis and recruitment.  I'd be interested if Dr. Nagler has any suggestions he can offer you.

Is your experience of sound consistent with the description of recruitment?  

Do you recall why one doctor felt you have recruitment and the other felt you have hyperacusis?

Rob 
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DrNagler

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Reply with quote  #3 
Quote:
Originally Posted by Annie
I have mild/moderate hearing loss, tinnitus and what is probably cat 3 hyperacusis, all as result of a noise attack (prank bomb) about 15 months ago. I have been doing TRT for 10 months, and have had a tiny bit of improvement (5 decibels) according to LDL test, and this seems encouraging in the abstract but the change is barely perceptible and not enough to change what I can actually do/enjoy in life. My LDL is at 55-60. At this point I find myself revisiting the question of how do you know what is H vs what is recruitment when you have H and hearing loss.

Quote:
Originally Posted by Rob
I'd be interested if Dr. Nagler has any suggestions he can offer you.

Hey Rob, why don't you ask me something easier - like what to do about North Korea! :-)

Seriously, Annie, it is sometimes incredibly difficult to tease out the difference. Here's the thing, and it's something many audiologists overlook: LDLs are normal in recruitment, that is provided that they are measured very carefully with the dB level introduced to the earphones by the audiologist at each frequency being increased slowly, carefully, and incrementally. I am going paste a graph below that might help explain. So in my opinion the first thing to do since you have not progressed to your satisfaction is ask your TRT clinician to repeat your LDL's. Possibly bring this post along so he or she can see what I'm driving at.

Hope this helps.

stephen nagler

PJJRecruitment.jpg


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DrNagler

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Reply with quote  #4 
To Dan -

The following lines should be omitted from the "Hyperacusis or Recruitment?" piece I wrote many years ago that still appears on your home page:

"Unfortunately there is no "test" which can be given to a person with hearing loss and sound sensitivity to determine what percentage of the sound sensitivity is actually due to recruitment.  The only thing we can say for certain, in fact, is that if a person has normal hearing, he or she cannot have recruitment.  As a guideline, then, at our clinic if a person with sound sensitivity has a hearing loss not severe enough to warrant hearing aids, we would initially treat that sound sensitivity with TRT or another desensitization protocol.  Even if hearing aids WERE warranted, we would encourage exposure to environmental sound while wearing hearing aids (as in TRT) and only go to compression hearing aids if that approach failed after a concerted effort on both our part and the patient's part."

I have just described such a test!

Thank you.

stephen nagler

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anniekin

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Reply with quote  #5 
Quote:
Originally Posted by Rob
Annie -

That is a very interesting question.  For starters, I suggest you go to the Home page of this site and click on the link where Dr. Nagler describes the differences between hyperacusis and recruitment.  I'd be interested if Dr. Nagler has any suggestions he can offer you.

Is your experience of sound consistent with the description of recruitment?  

Do you recall why one doctor felt you have recruitment and the other felt you have hyperacusis?

Rob 


Hi Rob, and Dr Nagler-
Thanks so much for entertaining my question.

The first audiologist and ENTs worked in a system to does not even "allow" referrals to TRT people, and from her dismissive comments I got the feeling the audiologist just did not believe in H, or was not supposed to refer to TRT audiologists outside the Kaiser system. So I really wondered if saying my sound sensitivity was all recruitment had more to do with health care/audiology politics than me. The ENTS there did not mention the H word, not did they offer any treatment other than steroids for 10 days, leaving me with the belief that there was nothing to be done. At the same time one of the docs talked about the brain's plasticity, so it was kind of a mixed message. It was the end of an insurance year, I had to make a decision and I decided to fire them all and do my own research and find better help. After an email consulting a friend's cousin, an out of town ENT, and then through her, a TRT audiologist, a new possible dx of acoustic shock was suggested, and they recommended I try out the local TRT person despite the negatives I had heard from Kaiser.

As I said in my first email, my impression from reading the home page descriptions of H and R, if I had to choose one it would be H. And I clearly do have H. But what I am wondering is not either/or, it is whether there is any R in the mix too. And it does seem very difficult to sort out. One reason I wonder is that my volume sensitivities seem worse in lower/mid frequencies, which is where my hearing loss is. And I keep reading that people with H hate high frequency noises the most. In LDL tests I measure pretty evenly across the frequencies but it seems in day to day life voices and car road noise are the worst. The only high frequency thing I notice is one oddity- that in high frequencies in music I hear notes split apart and it sounds like someone is whistling along with the music, something new since my injury.

Do you think there is any clue to be found in where the more bothersome pitches fall, or is there just no rhyme or reason in what bugs H people?

As for the LDL tests, done by a T and H specialist audiologist, it seemed to me they were gradual increases in volume at the different tones. I had 2, one at the beginning and one 7 months later to see how the TRT was working, both with the same audiologist, so I have nothing to compare with.

I do know objectively that 10 months is not that long in TRT time, I find I just start thinking more as time wears on. It would not be the first time I tried to figure out an unanswerable question....

Thanks,
Annie

 
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DrNagler

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Reply with quote  #6 
Hard to know what to tell you, Annie, save for the unfortunate fact that since there is no certification in TRT, you really have no way of knowing whether or not the "local TRT person" you saw is particularly knowledgeable. That is a sad reality.

Either way, while ten months is not that long in TRT time, you are talking there in terms of TRT for tinnitus. For hyperacusis (properly diagnosed, of course) if TRT desensitization has not produced satisfactory results in ten months, I'd probably be considering other approaches.

My inclination at this point in time would be to try Rob's music protocol and see if it makes a difference for you.

stephen nagler

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DanMalcore

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Dan
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Reply with quote  #7 
Annie

This is a really tough question to answer from a clinical standpoint and one rarely discussed.  Since I am not a clinician I will explain it in non-medical terms which I hope makes sense to you and other viewers.  

I believe that for some individuals it is not a matter of having hyperacusis or recruitment.  My audiologist claims, which I agree with, that I have both.  

There are frequencies on the high end (8000+ Hertz) that I have pronounced hearing loss.  Because of this hearing loss, much of the time I am not bothered by those sounds but when they reach a certain decibel loudness my startle response kicks in and it is way too loud.  

On the other hand, on low frequencies (1000 Hertz) I can hear at minus 10 decibels.  Clearly this is hyperacusis in my view.  

Although I went through a difficult year dealing with both, I think the recruitment is having a calming effect on my hyperacusis.  No doubt age has been a factor here.

As I have stated many times, I think that individuals with decreased sound tolerance must continually work on enriching their life with sound.  I play music all day long in my home and office and fill my life with sound.  Misophonia is not an issue with me.  I love sound and fill my life with it.

I agree with your feelings on the use of steriods - waste of time. 

Hope this helps....

Stephen, I have made that adjustment on your comments on hyperacusis/recruitment on the network home page.

Dan

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DrNagler

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Reply with quote  #8 
Quote:
Originally Posted by Dan
Stephen, I have made that adjustment on your comments on hyperacusis/recruitment on the network home page.

Thank you. My opinions have evolved over time as I learn more and more.

stephen nagler

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No bird ever soared in a calm. Adversity is what lifts us.

- David McCullough quoting Wilbur Wright
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Rob

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Reply with quote  #9 
Annie -

See if this looks interesting. 

http://www.chat-hyperacusis.net/post/music-protocol-for-decreased-sound-tolerance-7894014

When I was treating my own hyperacusis, I periodically had my LDLs administered to check my progress and make adjustments as needed.  For instance, if I was making progress at some frequencies, but not as much progress in other, higher frequencies, I would adjust the broadband noise I worked with to make it a bit more ambitious.  At one time, my LDLs showed I was having a challenge making improvements in the higher frequencies -- and since we are exposed to those frequencies in everyday life, I realized it could be helpful to come up with something else, in addition to working with broadband noise, to hopefully make even more progress. 

Whereas broadband noise has no dynamics, no highs and lows, no loud and soft, real life is filled with dynamics.  My new approach needed to expose me to sound that had dynamics, and it had to be safe, accessible, and directed as close to my ears as possible.  Music seemed to fit the bill nicely. 

The last thing I wanted was to create something that felt like more "work" so I made it fun.  I walk on a treadmill every day for at least 45 minutes and I figured if I paired that time with listening to music, I could exercise and concentrate on enjoying the music at the same time.  I bought Bose noise cancellation headphones and got started.  I developed a protocol using music that allowed me to work on improving hyperacusis and fear of sound at the same time.  I started small and I was in no hurry.  The idea was to convince myself, consciously and subliminally, that exposure to normal sound could not hurt me.  The next time my LDLs were administered, my LDLs at 8kHz, 10kHz, and 12kHz had greatly improved.  

Maybe using another approach to complement broadband noise will be helpful to you as well.  

Rob
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lk

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Reply with quote  #10 
Dear Anniekin,

I am in a similar situation as you ...
57 years old and a life filled with music and noise and even a noisetrauma ...
At this moment my audiogram has a dip of minus 65 dB between 4 kHz and 7 kHz in both ears and  flat in lower and higher frequencies.
This is what they call a severe noisedip !!
My LDL's are around 60/65 dB ...
I also have many problems with mids and low frequencie noise (ofcourse with high also) this in contrast with other people with hyperacusis...
Besides the classic tinnitus between 4 and 6 Khz I also have a low hum, a kind of loud dieselengine in both ears ...

I completed three full session TRT, first one with Hazell in London (20 years ago). 
It was the only TRT session that I made some progress in LDL's (+ 15 dB) but that was just after my noisetrauma
and when my noisedip was mild ...
My current audiologist (also a experienced TRT therapist) is convinced that I have a combination of hyperacusis and recruitement ...
And you can make progress in the hyperacusis part but not in the recruitement part.

25 years ago my noisedip in my audiogram was minus 15 dB and I had mild noisesensivity,
over the years the dip went minus 35 dB and I had moderate noisesensivity 
and now I have already 5 years a noisedip of minus 65 db and my noisesensivity is severe ...
I am sure these to problems have a direct relation !
and are a result of going out in noise above my LDL's and aging ...

I never had any mental illness, phonofobia or misophonia !!
because that's what they always say when you don't get better (anymore) with TRT ...
In my early years I was a musician and till 10 years ago owner and CEO from a broadcast company with 85 employes
I had to stop all professional activity's when my soundsensivity became moderated/severe.


May I give you the following advice:
Use hearing protection even when driving a car on a busy road, the noise in your car would be 75/80 dB which is constant over your LDLs ...
When I drive without on a busy road, I have immediately pain in both ears when I go over my LDL's and it can stay for hours /day's ...
Do not believe that sounds wich are not harmfull for normal ears are not dangerous for our ears , that is not true !!
Maybe this theory is true for people with hyperacusis but not for recruitement/hyperacusis ! 
Try to adapt to this situation, change your social life , play music again on soft acoustic instruments, invite friends at home but don't focus too much on having your life back from before ...

Of course do carefull soundenrichment and don't stay in silence because this can make your soundsensivity worse , but do stay out of noise louder than your LDL's or use protection, but better is staying out in my opinion ...
An inear closed hearingaid with very soft amplification but with a good limiter can be helpful !
but from a top quality ! I have one from Phonac (expensive) because we can't have poor amplifcated sound...
This hearingaid helps me for soft noisy activity's, I do understand everyone and my own voice is not too loud,
because this is always the problem with earplugs ...

I wish you good luck,

Greetings,


LK
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Rob

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Reply with quote  #11 
Annie - 

Thank you for your message.  To answer your questions, it isn't necessary to start from step 1 but see how you feel when trying the protocol with headphones as that can differ from listening to it through a set of external speakers.  I think instrument practice fits right in with what you are trying to accomplish and I would keep practicing.  Your auditory system thrives on sound and will thank you for it.  

If the volume of music a person enjoys is 80 dB and that person is comfortable hearing it, and the volume of a roomful of people talking is 80 dB and the same person is uncomfortable hearing it, something different from hyperacusis is going on.  I think the protocol can help with that.     

Rob

 

 

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DrNagler

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Reply with quote  #12 
Quote:
Originally Posted by Rob
Your auditory system thrives on sound and will thank you for it.

I think Rob's statement can be one of the hardest hurdles for a person with severe hyperacusis to navigate - but it is 100% accurate.

stephen nagler


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anniekin

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Reply with quote  #13 
Quote:
Originally Posted by lk
Dear Anniekin,

I am in a similar situation as you ...
57 years old and a life filled with music and noise and even a noisetrauma ...
At this moment my audiogram has a dip of minus 65 dB between 4 kHz and 7 kHz in both ears and  flat in lower and higher frequencies.
This is what they call a severe noisedip !!
My LDL's are around 60/65 dB ...
I also have many problems with mids and low frequencie noise (ofcourse with high also) this in contrast with other people with hyperacusis...
Besides the classic tinnitus between 4 and 6 Khz I also have a low hum, a kind of loud dieselengine in both ears ...

I completed three full session TRT, first one with Hazell in London (20 years ago). 
It was the only TRT session that I made some progress in LDL's (+ 15 dB) but that was just after my noisetrauma
and when my noisedip was mild ...
My current audiologist (also a experienced TRT therapist) is convinced that I have a combination of hyperacusis and recruitement ...
And you can make progress in the hyperacusis part but not in the recruitement part.

25 years ago my noisedip in my audiogram was minus 15 dB and I had mild noisesensivity,
over the years the dip went minus 35 dB and I had moderate noisesensivity 
and now I have already 5 years a noisedip of minus 65 db and my noisesensivity is severe ...
I am sure these to problems have a direct relation !
and are a result of going out in noise above my LDL's and aging ...

I never had any mental illness, phonofobia or misophonia !!
because that's what they always say when you don't get better (anymore) with TRT ...
In my early years I was a musician and till 10 years ago owner and CEO from a broadcast company with 85 employes
I had to stop all professional activity's when my soundsensivity became moderated/severe.


May I give you the following advice:
Use hearing protection even when driving a car on a busy road, the noise in your car would be 75/80 dB which is constant over your LDLs ...
When I drive without on a busy road, I have immediately pain in both ears when I go over my LDL's and it can stay for hours /day's ...
Do not believe that sounds wich are not harmfull for normal ears are not dangerous for our ears , that is not true !!
Maybe this theory is true for people with hyperacusis but not for recruitement/hyperacusis ! 
Try to adapt to this situation, change your social life , play music again on soft acoustic instruments, invite friends at home but don't focus too much on having your life back from before ...

Of course do carefull soundenrichment and don't stay in silence because this can make your soundsensivity worse , but do stay out of noise louder than your LDL's or use protection, but better is staying out in my opinion ...
An inear closed hearingaid with very soft amplification but with a good limiter can be helpful !
but from a top quality ! I have one from Phonac (expensive) because we can't have poor amplifcated sound...
This hearingaid helps me for soft noisy activity's, I do understand everyone and my own voice is not too loud,
because this is always the problem with earplugs ...

I wish you good luck,

Greetings,


LK


LK,
Thank you for sharing your story and perspective with me. At this stage I am entertaining all suggestions, even those that contradict the prevailing wisdom. What else is a person supposed to do while waiting to get better?? [smile] I am in such an early stage of this compared to you, I am still mostly just hopeful that the TRT will work. Your advice about lifestyle and adapting, what to focus on, is good. Your own story is kind of scary and sad to me, but your attitude seems good. I am sorry you have had such a prolonged difficult time, I can't imagine.

I expect I will do some cautious experiments with sound, from Robb's protocol to just trying listening to some things I have previously avoided. I do not have pain with my sound sensitivities, thank God, and I have never had a setback. The worst I have felt from a noisy time is just a feeling of exhaustion that comes after that kind of extra ear/brain effort. So I feel at this point I am less cautious about sound than you, but I do not in any way mean to invalidate your experience and your discoveries and I would not presume to know better than you what you should be doing after what you have figured out in your 40 years. I do approach all sound changes gradually and mindfully. 

A good portion of that exhaustion I have after being out and about is emotional, trying to be positive when I don't feel that way, if I am at a music thing, feeling grief that I can't do music in a carefree way anymore like my friends can. Trying to not notice that I am different from everyone I am around. I am relatively new to this so I am still getting used to being "different", and all the myriad things to figure out around that. Like when to explain to people what's up with me and when not to, what kind of support to expect from what people, finding out who understands and who doesn't. What to do with the disappointment when people do or say things that show lack of empathy or understanding. There is an enormous social challenge to this problem that I notice people aren't talking about much on the message board, that is curious to me. Perhaps as a woman I am more tuned in to the social and emotional part of this journey. I feel like with my injury I got served a heaping plate of social conundrums. I consider myself very lucky to have a spouse and several friends who are kind to me about this, and to not have added challenges such as poverty, a noisy job, etc. 

Another challenge that you have identified and lived through is the experience where you don't get better from a treatment and then someone starts looking for what is wrong with you, as opposed to the treatment. This is a thing that lots of docs do when they run out of ideas. I wish they would leave us our own dignity and just admit they don't know why their idea or treatment didn't work, and just say they are sorry it didn't work. But apparently the impulse to have the  "last word" and blame the patient is too tempting. That is one good way to MAKE  someone crazy if they weren't previously! So just know I hear you on that one. I have not had that happen with hyperacusis but I have with other unsuccessful medical treatments. Not only do clinicians not realize how insulting and destructive this sort of thing can be on a personal level, it really bothers me when they don't seem to care that it is not scientific to just ignore all data that seems to inconveniently not fit your model. Exceptions happen, I want to say. Especially in an area with such a paucity of research and known facts it seems premature to fasten too strongly onto any notions.

Given how alone we hyperacusis people can feel, with our invisible problem that most people have never heard of, my feeling is that saying anything that could make a person feel any more alone should always be avoided. 

Carry on, and best of luck--I'll post about my progress.
Annie


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DanMalcore

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Dan
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Reply with quote  #14 
Quote:

I have mild/moderate hearing loss, tinnitus and what is probably cat 3 hyperacusis…

The first docs and audiologist I saw right after the injury told me it was all recruitment…

I found help on my own, a TRT trained audiologist, who feels I have H...



Annie

It appears that you live in a part of the country that has some experienced TRT clinicians.  Looking at the statements you made above in your opening post in this thread I am wondering if you are being cared for from one of the clinicians in this link:

http://www.chat-hyperacusis.net/post/trt-worldwide-list-of-clinicians-retraining-therapy-3334680?pid=1286663205

Many clinicians 'name drop' the acronym TRT or suggest that they treat patients who are sensitive to sound but, in truth, many are do not understand all the dynamics of decreased sound tolerance (DST).  To that end, I just want to make sure you are in capable hands.  

Dan

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lk

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Reply with quote  #15 
Dear Anniekin,

Now I read your last post means your story is total different as mine ...
and I have some good news for you: 
You can't have recruitement if you don't feel a sharp pain in your ears from noises above your LDLs . 
So do further on TRT and start with gentle real sound enrichment ... 
It is still the best therapy for hyperacusis at this moment!

About the social life, that has changed dramaticly for me ... :-(
From my earlier social life has left maximum 2% !
I will not start the list from what I can't do anymore  .... 
but I have my life so adjusted that I still have a different social life 
and I really don't feel I am lonely !! .... 

Don't let my story make you sad or scary (I am in a small group of people that go backwards)
but don't focus to much on a total recovery !
like we have some (exceptional) stories on 
this hyperacusis messageboard ... 

When you reach the average LDL profit of +20 dB , these are the facts about TRT and progress in hyperacusis LDL's ,
you can have a nearly normal life again, it means going from 60/65 to 80/85 makes a big difference !!

because you know dB's are logarithmic , it means every + 3dB = 2 times more !! 
and maybe you reach more ... ;-)

I wish you good luck with your TRT !!

greetings LK
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DrNagler

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Reply with quote  #16 

Quote:
Originally Posted by lk
You can't have recruitement if you don't feel a sharp pain in your ears from noises above your LDLs .

Interesting. I never knew that. You seem rather definitive in your post. May I ask about the source of this information?


Thank you.

stephen nagler


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lk

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Reply with quote  #17 
that's what my ENT told me always ...
Maybe he is wrong ...


Greetings
Lk
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anniekin

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Reply with quote  #18 
Quote:
Originally Posted by DanMalcore
Quote:

I have mild/moderate hearing loss, tinnitus and what is probably cat 3 hyperacusis…

The first docs and audiologist I saw right after the injury told me it was all recruitment…

I found help on my own, a TRT trained audiologist, who feels I have H...



Annie

It appears that you live in a part of the country that has some experienced TRT clinicians.  Looking at the statements you made above in your opening post in this thread I am wondering if you are being cared for from one of the clinicians in this link:

http://www.chat-hyperacusis.net/post/trt-worldwide-list-of-clinicians-retraining-therapy-3334680?pid=1286663205

Many clinicians 'name drop' the acronym TRT or suggest that they treat patients who are sensitive to sound but, in truth, many are do not understand all the dynamics of decreased sound tolerance (DST).  To that end, I just want to make sure you are in capable hands.  

Dan

Hi Dan,
Thanks, I am seeing a qualified person from the list, and have consulted briefly with another expert here. But I have not gotten much of an answer on the questions about H and recruitment. As I suspected, it seems unanswerable. But it is important to me to keep trying to understand more about hearing and injuries and people who are coping so I ask wherever I can. Also I have seen little progress so far after 10 months with TRT and thus was just throwing more questions out there for more food for thought.

I wanted to ask you--in your first reply you talked about recruitment helping you with your hyperacusis and I don't understand how it could help. If you could explain  more about that to me, I'd be interested.

Here is my story. All of my problems came on immediately after some little brats in my neighborhood set off a prank "fart bomb" tucked in an envelope on my porch. They chose my house randomly. rang the bell and took off. I opened the door, took the envelope inside, looked inside to see what it was and at that moment it went off right next to my head inside a narrow hallway. (I found out when those things go off it can be as loud as 140 decibels, and thus they are banned in some European countries but of course not here where our right to blow things up is sacred) In one instant my music life, my retirement and travel plans, social life, sense of purpose and direction got blown away. It's still unbelievable to me. When desperately searching for a silver lining I tell myself at least I am not tormented by wondering what happened and why I have hearing issues like some people who have sudden sensorineural hearing loss. I don't have pain in my ears. My hearing loss is mild to moderate, but in very inconvenient middle frequencies. 

I am still basically just coping with fear that this is permanent. That is why I wonder so much about recruitment, to me it equals a more permanent end to this story. For now I am hoping it is mostly hyperacusis because it theoretically would be more fixable.

By the way, the thing that made me go ahead with the steroids right away after the injury was a story an ENT told me about a sound engineer who did the 10 days of steroids AND the injection into the ear and he actually recovered his hearing. So I wouldn't call it a waste of time, it just didn't work for me. I had horrible side effects from it and it made the first 10 days of my "new life" even more unbearable but if I hadn't done it I know I would be wondering if it could have helped. I know the odds of it helping aren't necessarily that great but I actually would not discourage someone from doing it. After all it only takes 10 days, not years.

Annie

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DrNagler

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Reply with quote  #19 
Regarding LK's rather definitive statement:

Quote:
You can't have recruitement if you don't feel a sharp pain in your ears from noises above your LDLs .


upon further questioning, he said:


Quote:
that's what my ENT told me always ...
Maybe he is wrong ...


So what I am about to say is not in any way a knock on LK. He's just posting what his ENT told him. But it turns out that in this particular instance LK's ENT is absolutely wrong. (It happens!)

Which serves as a reminder to us all that no matter how definitively something is stated on this (or any) board, and no matter who is stating it definitively (including me!), this is indeed an Internet message board. And everything you read here should be considered in that light and taken with a grain of salt.

stephen nagler

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DanMalcore

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Reply with quote  #20 
Dear Annie,

After 23 years of having hyperacusis I really felt I had a handle on it.  I worked hard at continually improving my LDL's and only wore ear protection when absolutely necessary.  Many days I never even carried ear protection with me.  One afternoon while watching my grandson play high school football I was sitting on the bleachers and I noticed something with my hearing.  There was a parent about four rows back that was enthusiastically cheering on the football team on almost every play.  Her voice had a certain ring to it.  I had no ear protection in because I felt I could 'put up with it' for a while.  For some reason though it was just sending a shrill through me and I wondered what the heck was going on.  Each day after it seemed as though my LDL's were worsening.  I did not want to believe it but clearly sounds that no longer bothered me were starting to impact me again.  It wasn't misophonia or phonophobia which seems to be a trending topic these days.  I thought it best to visit my audiologist and have my LDL's retested.  It appears as though I went from LDL's of 95 down to 80.  The other surprise was that I clearly was losing my hearing on the high end 8000+ Hertz.  My audiologist remarked, "Dan if you think hyperacusis was rough, hyperacusis + recruitment is even more tougher."

It was.  I spent the next year working with the network pink noise.  I wore the sound generators and played pink noise in my car.  My ears really welcomed this noise and seemed to soothe them.  My LDL's improved - which was my main concern.  The hearing loss on the high end was not troublesome to me.  The low end, particularly the 1000 Hertz band is a problem for me because I hear it at -10 decibels.  The other problem which came with all of this was tinnitus.  That was a struggle for me.  Eventually it settled down but is still present.

So let me be more clear, I believe that individuals who have hyperacusis and recruitment benefit from sound therapy.  Pink noise worked for me once again.  For me, working on my LDL's has been a lifelong endeavor.  As long as one monitors their LDL's and works on them recruitment is very manageable and can even offer some benefits.  High frequency hearing loss is very common as we age.  The biggest drawback to it for me is the startle response.  When the decibel level reaches a pitch where the normal hair cells kick in it goes from barely hearing it to it sounding too loud.  

Life is full of challenges.  I thank God every day for just being able to hear.  When I see videos of people who have gone much of their life deaf and then suddenly with cochlear implants experience sound for the very first time - many of them break down and cry because they are so happy to hear the voices of their loved ones and be engaged in our world on a whole new level.  Although sounds for the very first time are way too loud, the clinician usually says, "you will adapt and get used to that."  We are all adaptable.  The brain has an amazing capacity to adjust - we just need to let it do it's work.  Sometimes it needs a little help.  Sound therapy is that help.

Dan

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AnthonyO

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Reply with quote  #21 
Thank you Dan for being so honest, upfront, candid and transparent with the folks here on your board. The humble and human part of you, is what shows best and is so kin to relate to. We need more of that kind of heart here, and in our world today.
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Reply with quote  #22 
Quote:
Originally Posted by Dan
So let me be more clear, I believe that individuals who have hyperacusis and recruitment benefit from sound therapy.

I do too, Dan. Sound therapy helps their hyperacusis. But I do not believe it helps their recruitment.

When you had that shift in your LDLs, it wasn't because of your recruitment. LDLs are normal in recruitment.

At least according to Dr. Jastreboff they are.

Best -

stephen nagler

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DanMalcore

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Reply with quote  #23 
Stephen

I agree.  I never meant to imply that my LDL decline was due to recruitment.  It was my hyperacusis which needed refreshing with sound therapy.  Recruitment certainly added a new dimension to my experience with sound when coupled with hyperacusis.

Dan

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DrNagler

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Reply with quote  #24 
Quote:
Originally Posted by Dan
I agree.  I never meant to imply that my LDL decline was due to recruitment.  It was my hyperacusis which needed refreshing with sound therapy.

Thanks for clarifying. I misunderstood you. My apologies.

Quote:
Recruitment certainly added a new dimension to my experience with sound when coupled with hyperacusis.

No doubt about that!

stephen nagler

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lk

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Reply with quote  #25 
Dear Dr. Nagler,

Can you describe what a person with recruitment feels when sound is presented in the frequencies of his hearing loss and this sound/noise is over his discomfort level ?

That might provide more clarity for us all ... ;-)

Thx,

Greetings,

LK
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DrNagler

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Reply with quote  #26 
Quote:
Originally Posted by LK
Can you describe what a person with recruitment feels when sound is presented in the frequencies of his hearing loss and this sound/noise is over his discomfort level?

I've been thinking about that for a while, LK, which is why I did not respond sooner. And after careful consideration, my answer is that I cannot. I just don't know.

Sorry. But I assume you'd prefer the truth than if I just sort of made something up!

All the best -

stephen nagler

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lk

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Reply with quote  #27 
Dear Dr Nagler,

What my ENT was telling that someone with recruitment can't hear sound in the frequencies of his
hearingloss (of course ... ) but sound a little bit above this hearingloss is to loud and painfull ...

Greetings,
lk
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DrNagler

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Reply with quote  #28 

Quote:
Originally Posted by lk
Dear Dr Nagler, What my ENT was telling that someone with recruitment can't hear sound in the frequencies of his hearingloss (of course ... ) but sound a little bit above this hearingloss is to loud and painfull ... Greetings, lk

... and I disagree with your ENT. I have a lot of experience with recruitment, and recruiters do not experience pain unless the noise level exceeds their LDLs, which in recruitment are normal.

I am going to excuse myself from this thread at this point.

Carry on.

stephen nagler



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lk

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Reply with quote  #29 
Dear Mr. Nagel,

Total correct! I think there was a misunderstanding,
My ENT (and I) mentioned the same :
The pain in the ears is felt only when the noise level exceeds their LDLs in the frequencies of the recruitment...

And because  Anniekin was writing :

I do not have pain with my sound sensitivities, thank God "

I was telling her:

" You can't have recruitement if you don't feel a sharp pain in your ears from noises above your LDLs "

That makes sense ? 

So in my opinion she has not to worry about recruitment  ...

Greetings,
LK
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DrNagler

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Reply with quote  #30 
Quote:
Originally Posted by LK
My ENT (and I) mentioned the same :
The pain in the ears is felt only when the noise level exceeds their LDLs in the frequencies of the recruitment...

Everybody has discomfort when the noise levels exceed LDLs. I apologize, but I do not see this as any sort of revelation.

Quote:
And because  Anniekin was writing :
I do not have pain with my sound sensitivities, thank God "
I was telling her:
" You can't have recruitement if you don't feel a sharp pain in your ears from noises above your LDLs "
That makes sense ?

No. None of this makes any sense, at least not to me. Discomfort is a nice word for pain. Recruitment or no recruitment, when noise levels exceed LDLs, you have pain. That's what an LDL is: a pain threshold.

Quote:
So in my opinion she has not to worry about recruitment  ...

One has nothing to do with the other.

This is making me dizzy. And it is not doing anybody any good.

stephen nagler

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lk

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Reply with quote  #31 
Dear Dr. Nagel,

Sorry but I do not agree with you about this ...
After all these years with soundsensivity (more than 25 years)
I do know a lot of people with hyperacusis that have no sharp ear pain when sound is louder when their LDL's !
They report headaches, earfullness, panic attacks, anxiety, fear  and other discomfort feelings ...
I was only trying to help Anniekin,
I do know the difference between hyperacusis and recruitment ...
but this discussion is going in the wrong direction and I really don't know why ? :-(
This was my last post about this subject ...

Have a nice day ,
Greetings,
LK

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DrNagler

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Reply with quote  #32 
Quote:
Dear Dr. Nagel,
Sorry but I do not agree with you about this ...

That's no surprise. Apparently we can't even agree on how to spell my name. Do you want to argue about that as well?

Quote:
After all these years with soundsensivity ,
I do know a lot of people with hyperacusis that have no sharp ear pain when sound is louder when their LDL's !!

I do not know what you mean by "sharp" pain. It's a nebulous term. I guess some people with hyperacusis have sharp pain when their LDLs are exceeded, and some people with hyperacusis have not-so-sharp pain when their LDLs are exceeded? Is that what you mean? So what? What difference does it make? Are you trying to say that if they have sharp pain, then that means they must also have recruitment? Please don't say that.

Better still, please just don't say anything at all, OK? You are confused, and you are confusing others.

stephen nagler

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lk

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Reply with quote  #33 
Sorry, 

English is not my mother language, it is my third language ...
I apologize
that I wrote your name wrong  ...

But the way you answer me now is not verry nice, it was only my intention to help Anniekin ...
And maybe I am wrong in your vision ,
but that does not mean I need answers like this ...

Greetings,

LK
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DrNagler

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Reply with quote  #34 
I know you were trying to help Anniekin.

If I offended you, I apologize.

stephen nagler

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Rob

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Reply with quote  #35 
Do not believe that sounds wich are not harmfull for normal ears are not dangerous for our ears

A number of people feel the same way.  If by "dangerous" you mean "will damage the auditory system" I am unaware of any studies that support this belief. 

... don't focus too much on having your life back from before ...

I would say focus like a laser on getting every bit of our life back from before, as best we can, and do whatever it takes to make it happen.  This may mean being willing to examine one's assumptions and beliefs.

I do know a lot of people with hyperacusis that have no sharp ear pain when sound is louder than their LDL's !  They report headaches, earfullness, panic attacks, anxiety, fear  and other discomfort feelings ...

When a person's LDLs are exceeded, whether they have hyperacusis or not, it is physically uncomfortable or painful.  

The difference between someone with hyperacusis and someone whose tolerance of sound is normal is the person with hyperacusis experiences sound as physically uncomfortable or painful much more often than someone with normal sound tolerance because a hyperacusic's LDLs are exceeded on a regular basis.

If a person has been diagnosed with hyperacusis but experiences no physical discomfort or pain when exposed to sound which exceeds his LDLs, he has been incorrectly diagnosed, in my opinion.  Aural fullness, panic attacks, anxiety and fear may arise from having hyperacusis and may lead to other challenges, such as misophonia and the overengagement of the tensor tympani muscle, but panic attacks, anxiety and fear aren't hyperacusis.  The primary experience of someone with hyperacusis is discomfort and pain due to exposure to sound which exceeds one's loudness discomfort levels.  

Rob
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lk

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Reply with quote  #36 

Dear Rob,

My answers :

" If by "dangerous" you mean "will damage the auditory system”
(about sound that is not dangerous for people with normal ears ...)

I do not mean these sounds are creating hearingloss or are dangerous for your healt
but I do mean these sounds can make hyperacusis or tinnitus worse,
this is what we ( a lot of people with T and H ) do have …
and now you can tell me Rob: " it is not true ",  please do ask it others, 90 % will say yes these sounds does ...

“ don't focus too much on having your life back from before ... “

You take this total out of context of the rest that I was writing  !
Most people that I know (after 25 years of  DST) and I know a lot of people with DST ...
do make progress ! But nearly nobody is having his life back from before …
Only a few successtories have there life back from before !
It is not bad to give someone the advice, that life is going be different ,
maybe she can allready search for nice social events in less noisy places ....

Do you know there are others with (severe) DST like me , that did everything to get better,
Personally I did 3 full TRT sessions , first one in London with Hazell himself ...
And I have the last 5 years LDL's around 60 dB 's , I don't make any progress ,
I don't stay in total silence, I do every day soundenrichment
but life is a nightmare with LDL's around 60 dB's ...
First of all I always advice people with DST to follow treatment like TRT, CBT and other soundenrichment therapies ...
But I do want to help also people how they have to deal with severe chronic DST, because this is also reallity,
a group of us has to deal with this chronic condition ...

Greetings,
lk

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Rob

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Reply with quote  #37 
LK -

I'm glad you edited your original post.  Instead of responding point for point, I have a suggestion.  Reach out to Dr. Jastreboff and share your views with him.  My understanding is in the earlier days of TRT, Dr. Jastreboff felt misophonia was underdiagnosed or not emphasized as much as it was later on as TRT matured.  This could explain why some TRT patients made some progress but not as much as they wanted.  I'm happy to give you his email at Emory University if that is something you feel you would like to pursue. 

Rob
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lk

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Reply with quote  #38 
I would like to sent him an email about my condition ,
you can sent his emailadress in a private message ....

thx,
LK
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DrNagler

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Reply with quote  #39 
Quote:
Originally Posted by lk
I would like to sent him an email about my condition , you can sent his emailadress in a private message .... thx, LK

No need for private message. It's available on the web.

Go to: http://www.tinnitus-pjj.com > "Contact Us"

stephen nagler

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