The Hyperacusis Network Message Board
Sign up Latest Topics
 
 
 


Note: This topic is locked. No new replies will be accepted.


Reply
  Author   Comment  
DanMalcore

Avatar / Picture

Dan
Registered:
Posts: 1,396
Reply with quote  #1 

Stringplayer posted this on a different thread.  I feel it is an important topic and one where others might like to participate.  I think it should be a separate thread for those who would like to discuss this topic (desensitization) at greater length.  Thank you stringplayer for the following comments:

 

"Let me give you some perspective.  And with respect to hyperacusis I am going to lump TRT and the use of pink noise CD's together under the umbrella of "desensitization."

 

Now some may not like what they read below.  But I used desensitization successfully over a span of five years in the treatment of countless individuals with hyperacusis ... and of those patients whom I have personally evaluated and treated, only one has failed to improve markedly.  So I believe that I can speak with some authority on the issue.

 

#1  Desensitization is not a hard regimen to get through.  Those who claim that it is ... have not done it properly under the supervision of a health care professional experienced in its use.  True, it takes time.  True, there are the inevitable bumps along the road.  And true, pink noise CD's are less convenient than the TRT approach.  But neither is hard.  What is hard is NOT doing desensitization and instead just suffering along, unnecessarily depriving yourself of so many of the joys of life - especially when desensitization is so predictably successful.  And what is also hard is finding a knowledgeable and experienced healthcare professional to do it with.  (That may be the hardest thing of all!)

 

#2  In my opinion it is absolutely essential that there be at least one in-person visit with the clinician - so that a clear understanding can be reached with regard to what is to be accomplished and how it is to be accomplished.  AND so that appropriate testing can be done to establish a diagnosis and a baseline.  There is an absolutely wonderful lady over in Europe whom I tried to treat long-distance as a favor without ever having evaluated her myself.  (No, I didn't charge her.)  Anyway, in the end I feel I did her no favor at all.  Likely I missed a diagnosis or overlooked a strategy.  She did not improve - not at all as far as I could tell.  But I still get very nice notes and cards from her; she has touched me deeply.  Of the two of us, I am clearly the one better off for our paths having crossed.

 

#3  It is also absolutely essential that the patient feel comfortable contacting the clinician as frequently as necessary to make readjustments in the protocol as the above-mentioned "inevitable bumps in the road" are encountered - and it is equally essential that the clinician be available and return calls promptly.  (I have used TTY in very severe cases.)  Thus, there must be a two-way commitment. 

 

#4.  Proper attitude and positive thinking in and of themselves have little role, if any, in this endeavor.  There is no "mind game" in desensitization.  It is applied auditory neurophysiology - pure and simple.  But patience and persistence?  They are crucial.  And if you cannot be patient and persistent without proper attitude and positive thinking, then in that event I guess it will help to have the proper attitude and to think positively.

 

#5.  And finally, it is absolutely crucial - in my opinion - that the threshold for discomfort be very gently and gradually (but at the same time purposefully and systematically) challenged in desensitization.  Just "listening to the sound" doesn't get you there.  Probably the most important function of the clinician is to assist with this delicate process - so that it is done safely, so that it is well-tolerated, and so that any discomfort at all is held to an absolute minimum.

 

Now I have given you the benefit of my opinion and personal experience in treating precisely the condition that brings readers to this board.

 

Desensitization is NOT hard.  NOT desensitization is hard."

 

Again, please note: these are stringplayers comments.


__________________
"Yesterday is ashes, tomorrow is wood, only today does the fire burn brightly"
0
LynnMcLaren

Registered:
Posts: 7,990
Reply with quote  #2 

Hi Dan,  ((( Smiles ))))

 

Yes.. I think that was great that Stringplayer wrote his thoughts on desensitization in such detail..

 

I'm glad you brought this up to the top of a thread..

 

I think this post by Stringplayer was worthy enought to do so with all the subjects he posted on..

 

To be studied and commented on by others..

 

Just so we all could understand it more in detail...

 

Get a better concept..

 

As I haven't really read it throughly through enough myself...

 

Great idea Dan...

 

What do others think...

 

Any thoughts ?????

 

Great thread....


__________________
Take Care

Lynn
0
LynnMcLaren

Registered:
Posts: 7,990
Reply with quote  #3 

Oh.. ((( Smiles )))

 

This sentence..

 

And so that any discomfort at all is held to an absolute minimum.

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

I don't know if thats possible to do or if doing it completely that way is challenging the auditory system enough..

 

Maybe in the early stages or early on at a low level volume of building up with..

 

Depends ....

 

But discomfort with hyperacusis is not allways minimum.

 

I mean with hyperacusis discomfort and pain can be alot from hardly no sound at all..  

 

And tinnitus can cause discomfort as well....

 

I've recovered from discomfort .. I've recovered from pain. I've recovered from alot..

 

So has lot of others over time..

 

But that one sentence to me.. It's just the word.. Absolute minimum..

 

The absolute minimum would have meant earplugs to me..

 

Trying to not feel any discomfort or pain and that doesn't allways work well..

 

That would be the absolute minimum... 

 

I've read of people who have did sound therapies and TRT and the discomfort wasen't held to a absolute minimum it seemed..

 

Their ears where challanged alot..  

 

So I don't know.. Maybe I'm reading that sentence wrong..

 

I'm just not getting the meaning right...

 

 

 

 


__________________
Take Care

Lynn
0
Mark

Registered:
Posts: 82
Reply with quote  #4 

Hi Everyone,

 

  What does this mean to all of us new comers?  I have read allot from Lynn, Jane, Rob, Stringplayer, Leah and Dan.

 

  You are all veterans (very educated) at this and seem to know where to turn in times of questions and need, and most likely you have physicians, clinicians etc. already set in place.

 

  I agree this thread along with many others, stand on there own merit and most the time need no further comments.

 

   Dan,  Your in Green Bay, Right?  I use to live there up until ten years ago.

 

  I live in Tomahawk, WI only 120 miles from Green Bay.  Where can I find this type of help, therapy, etc.?

 

  I draw from all of you and you in particular Dan, because I think your the closest person in my area, and you are very knowledgeable. By the way, Sorry I have not sent for the CD yet, I will send for it this Thursday.  I also feel this is critical to my healing process.

 

Best of health,

 

Mark

0
janepm

Registered:
Posts: 1,644
Reply with quote  #5 
Mark, I have been alone through this aside from the great wonderful Dan helping me along all these years and sympathetic people that I have found from digging, digging, digging. We are not veterans at all, we are just like you asking questions and trying to find out as much as we can.

It took me 9 years to get to the point where I finally knew what to do and where to go. For me, that will be working with a TRT provider and I couldn't be more thrilled.

I will always hold very close to my heart how supportive this group is to me, and to many others. Please know that we feel much like you do, struggling, blindly going on, limping through life and celebrating when we have small steps.

__________________
Jane
0
DanMalcore

Avatar / Picture

Dan
Registered:
Posts: 1,396
Reply with quote  #6 
I agree with everything stringplayer mentioned.  However, desensitization is hard work in my view.  True, doing nothing and living a life with debilitating hyperacusis is far worse, however listening to broadband sound for up to eight hours a day for two years is hard work.  It takes real committment and determination combined with a truck load of patience because noticeable improvement can take months.  This is just one of the reasons a good doctor/audiologist (qualified to administer retraining therapy) is important so that the patient remain focused and positive.  Just my view...
Dan


__________________
"Yesterday is ashes, tomorrow is wood, only today does the fire burn brightly"
0


Registered:
Posts: N/A
Reply with quote  #7 

Dan posted:

 

I agree with everything stringplayer mentioned.

 

...........

 

Dan, I am pleased to see that you have come to realize that it is important in desensitization to very gently challenge the threshold of discomfort in a methodical purposeful fashion rather than simply play the sound at a level that is "comfortable" all the time.  This threshold challenge is nothing to be taken lightly - it is a very gradual process that should preferably be done using a protocol set up by a knowledgeable clinician - but if the threshold is not challenged, it will not move!!!  And that's the whole purpose of desensitization - to shift the threshold for discomfort towards normal.  In very gradually and gently shifting the threshold of discomfort, you make the uncomfortable ... comfortable!  I firmly believe that adhering to this concept is the principle reason I met with such success in treating hyperacusis patients when I was in clnical practice.  (That - and my charm!)

 

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

 

However, desensitization is hard work in my view.  True, doing nothing and living a life with debilitating hyperacusis is far worse, however listening to broadband sound for up to eight hours a day for two years is hard work.

 

...........

 

Listening to broadband sound for that long would, indeed, be hard work.  But you aren't supposed to listen to it.  All you do is play it in the background while you go about your normal activities.  If you are actually listening to it, you aren't using it properly!  The sound should be readily habituated so that after a brief period of time, you are largely unaware of it.  That's an essential part of the process that seems to be missing from all those "instruction sheets."  And it takes some patience to get it right - especially in the case of severe hyperacusis - which is why it is so helpful to be working closely with a knowledgeable experienced clinician. 

 

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

 

It takes real committment and determination combined with a truck load of patience because noticeable improvement can take months.

 

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

 

Noticeable improvement can take months - but that is rarely the case if the treatment is done properly.  Usually it takes but a few weeks to begin to see a change.  Moreover, LDL's typically begin to shift before "noticeable improvement" is ... noticed!  It is therefore incredibly reassuring and rewarding to the patient to be re-tested after a short time - maybe two or three weeks.  The whole world becomes brighter when the patient can actually see the shift in black and white on a graph, realizing that the "noticeable improvement" is just around the corner.  And furthermore realizing that what he or she is doing is really working! 

 

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

 

This is just one of the reasons a good doctor/audiologist (qualified to administer retraining therapy) is important so that the patient remain focused and positive.  Just my view...

 

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

 

Well, there is no certification in retraining therapy - so the term "qualified" is quite problematic.  Moreover, a clinician doesn't have to take a TRT course to be able to effectively and responsibly guide a hyperacusic through a pink noise therapy protocol.  What's missing is the awareness on the part of hearing healthcare clinicians in general about just how much they can do for people with hyperacusis and how much of a difference they can make in their lives.

 

There is a fix, in my opinion.  But there I go again climbing on my soapbox - so I'll stop.

 

Best to all.

 

sp

0
DanMalcore

Avatar / Picture

Dan
Registered:
Posts: 1,396
Reply with quote  #8 

Dan, I am pleased to see that you have come to realize that it is important in desensitization to very gently challenge the threshold of discomfort in a methodical purposeful fashion rather than simply play the sound at a level that is "comfortable" all the time. 

 

Stringplayer, when you put it that way, you are giving the impression that I have changed my mind.  I have not changed my mind.  I believe that one should not listen to broadband noise beyond their comfort level.  After all, going beyond one's comfort level is what was problematic with Jack Vernon's directive.  I believe that as the patient listens to broadband noise at their comfort level that over time their comfort level improves.  In other words they are able to tolerate more volume.  As their comfort level improves, their volume level can be adjusted.  Perhaps we have a difference of interpretation when it comes to the word 'challenge'.

 

Dan 


__________________
"Yesterday is ashes, tomorrow is wood, only today does the fire burn brightly"
0


Registered:
Posts: N/A
Reply with quote  #9 

Dan posted:

 

Stringplayer, when you put it that way, you are giving the impression that I have changed my mind.

 

...........

 

Well, then I owe you an apology.  Because when I read your own words: "I agree with everything stringplayer mentioned," I assumed that "everything" meant, well, everything!  Including point #5 that you copied from my original post: 

 

"#5.  And finally, it is absolutely crucial - in my opinion - that the threshold for discomfort be very gently and gradually (but at the same time purposefully and systematically) challenged in desensitization.  Just 'listening to the sound' doesn't get you there."

 

So, Dan, I guess you and I have a different concept of "everything." 

 

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

 

I have not changed my mind.

 

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

 

OK.  Thanks for clearing that up.

 

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

 

I believe that one should not listen to broadband noise beyond their comfort level.  After all, going beyond one's comfort level is what was problematic with Jack Vernon's directive.  I believe that as the patient listens to broadband noise at their comfort level that over time their comfort level improves.  In other words they are able to tolerate more volume.  As their comfort level improves, their volume level can be adjusted.

 

...........

 

And I think you are dead wrong on that issue.  As I wrote:

 

"...it is important in desensitization to very gently challenge the threshold of discomfort in a methodical purposeful fashion rather than simply play the sound at a level that is 'comfortable' all the time.  This threshold challenge is nothing to be taken lightly - it is a very gradual process that should preferably be done using a protocol set up by a knowledgeable clinician - but if the threshold is not challenged, it will not move!!!  And that's the whole purpose of desensitization - to shift the threshold for discomfort towards normal.  In very gradually and gently shifting the threshold of discomfort, you make the uncomfortable ... comfortable!  I firmly believe that adhering to this concept is the principle reason I met with such success in treating hyperacusis patients when I was in clnical practice."

 

Now, Dan, there is no question that you have over the years come in contact with more people with hyperacusis than I have.  So your experience is nothing to be taken lightly.  But I think it is also fair to say that over the five years that I was in clinical practice, I came in contact with more people with hyperacusis that actually got better than you have in your entire life.  So my experience should not be taken lightly either.  And the reason my patients got better is because they did it as I described above - not as you described above.

 

sp

 

0
DanMalcore

Avatar / Picture

Dan
Registered:
Posts: 1,396
Reply with quote  #10 

Many times I hear from individuals who are suffering with hyperacusis who tell me they cannot afford the cost of retraining their ears from a qualified clinician (TRT).  My heart goes out to them.  In addition to that, there are so many roadblocks to getting good care for your ears when you have hyperacusis (i.e. finding a good clinician, the agony of travel and all the noise associated with it, noone making accomodations for your noise sensitivity because noone understands this kind of special disability, etc.).  Having said that, many of these people are having great difficulty living in the mainstream of life and/or holding onto their existing job.  Their world is literally falling down around them.  Like the song by Annie Lennox, you feel like 'this ship is sinking.'  Boy, do I remember that feeling.  When you life gets that impacted with hyperacusis you need to ask yourself the question: What is the price of living a normal life?  What is the price of being able to enjoy things with your family on a day to day basis or at special times of the year?  As the current Mastercard commercial suggests: PRICELESS!  Some people are more motivated than others.  For me, I would do anything possible to fix my ears.  In the quest, over the years, I have done things that have hurt my ears (i.e. AIT-Auditory Integration Therapy).  But, I found what I needed to do when I met, in person, the three people who would give me my life back - Dr. Pawel Jastreboff, Dr. Jonathan Hazell and Susan Gold.  Do I think TRT is overpriced?  I think a really good clinician is not overpaid.  If they are good, they will be open to your calls whenever you have a question or concern.  This is critical in my view.  I do think the noise generators are overpriced.  I am not sure how much control the providers (doctors/audiologists) have in this area, but I know they have some control.  None the less, that cannot be a roadblock.  You need the noise generators.

Dan


__________________
"Yesterday is ashes, tomorrow is wood, only today does the fire burn brightly"
0


Registered:
Posts: N/A
Reply with quote  #11 

Dan posted:

 

You need the noise generators.

 

.........

 

You don't. 

 

The "noise generators" are a convenience - that's all.  Pink noise CD's work just as well in the treatment of hyperacusis - if they are used properly.

 

So you don't need noise generators.  But what you do need is somebody knowledgeable and experieced to guide you through the desensitization process.  Now, of the universe of clinicians knowledgeable and experienced in the treatment of hyperacusis, almost all are TRT clinicians.  And in TRT, you do not use pink noise CD's - you use the noise generators.

 

sp

0
DanMalcore

Avatar / Picture

Dan
Registered:
Posts: 1,396
Reply with quote  #12 

Stringplayer posted:

But I think it is also fair to say that over the five years that I was in clinical practice, I came in contact with more people with hyperacusis that actually got better than you have in your entire life. 

 

How is that fair?  How do you know how many people I have seen improve in my entire life?  I don't know why you have to talk this way.  We are trying to carry on a discussion here for the betterment of eveyone.  Time and time again I tell everyone that these are just my views.  It is unfortunate and hurts this community when you talk like this. 

 

Dan


__________________
"Yesterday is ashes, tomorrow is wood, only today does the fire burn brightly"
0
janepm

Registered:
Posts: 1,644
Reply with quote  #13 
Curous question:

first, I may be dealing with sarcoma cancer and I can't get my insurance company to even send me to anyone (HMO!) so I am paying myself. To help pay for this, I found a non-profit sarcoma place to give me a scholarship. I was wondering Dan and Stringplayer, if you knew of anyplace that could help many folks who can't afford to travel to work with someone, a scholarship to help out?

I, too, find myself feeling very helpess when I hear folks who can barely afford to live every day, more of less not being able to get the proper care from a Clinician. It just breaks my heart so much!

Stringplayer: you are so passionate about all of this. After Teri gets better (and she will!), are you planning on going back to helping people with Hyperacusis and TInnitus (I hope so, we need compassion and passion in this community, people who really want to see folks lives change completely. I see both of you, Dan and Stringplayer, as fitting that bill.)

__________________
Jane
0
LynnMcLaren

Registered:
Posts: 7,990
Reply with quote  #14 

Wow...  ((( Smiles )))

 

This is great... Need to read thru it all... I'm so glad this was brought to it's own thread .

 

Not many on the board that I have read of at least posted about in such detail has forced themselves in the way I did over time...

 

To go thru what I went thru to try to help myself get better over time...

 

Though I have read stories on the archive board of people doing things to desensitize their ears to sounds like..

 

Banging a pot methodically with a spoon or makeing their ears listen to the sounds there ears cannot handle over and over..

 

Forceing themselves into sound is really hard to do..

 

And with hyperacusis.. It is forceing yourself... When you want to avoid the sounds at all cost...

 

Just makeing themselves listen to the sounds a person cannot really handle at the time..

 

Like the AC unit with Tom or ect.... I've read other stories on the archive board... 

 

Even with voices that caused me incredible pain and symptoms in my ears..

 

But thats me.. I wanted it so badly I could taste it.. I just did it.. Daily and I wanted to run and hide.........

 

Oh how my ears must of burned, hurt and throbbed and became more sensitive like an injury reaction..

 

Yet....

 

I did it on Dr Vernons advice to expose myself in a therapy like manner.. Alittle every day as much as I could handle... 

 

To the sounds.. That my ears could not totally handle at the time.. Voices...

 

Because they were actually low decible sounds..

 

And he did not believe because they were low decible sounds..

 

That they were actually damaging my ears to hear them.. I just had hyperacusis..

 

And desensitization is the key and of course Dr Vernon has his thoughts on the cause of the malfunction.. 

 

So.. It all made sense to me even thou my brain had a hard time wrapping around it yet.. 

 

Are people really damaged forever by the sound of voice.. Thou I know some people will say they are..

 

Thou it may feel like it.. Like it has really done one in and they could never recover from exposures like that yet...

 

But people recovery from alot of so called damaging things with ones hyperacusis disorder over time..

 

I'm truely amazed about the things that happened to people that might have or have caused this disorder and some of the things their ears have been through...

 

Yet.. They still seem to get improvement after all of that anyway..   

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

 

But I do believe in starting of with pink noise or TRT or some kind of sound therapy first and building up to it..  Before trying anything such as this..

 

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

 

A person needs to make their ears more stronger first before they take such steps..

 

I'm not recommending others do what I did.... 

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

Yet... 

 

And what Dan said ...

 

For me, I would do anything possible to fix my ears.  In the quest, over the years, I have done things that have hurt my ears (i.e. AIT-Auditory Integration Therapy). 

 

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

 

That determination.. Thats how I felt and why I did what I did and just did it no matter what.. because I believed there was nothing else out there that could help me at the time..

 

I trusted the source..  I felt I had no choice...

 

Just the thought of haveing hyperacusis and I know how hard it is with hyperacusis to push oneself into any sounds at all as we feel like cuting all sound out of our life because the reactions they cause in our ears and we know we will pay for doing it too.

 

Oh.. But I just can not imageing how horrible haveing AIT done with hyperacusis but you must of believed or felt at the time..

 

You had no choice.. You just wanted to get better.. So you did it.. No matter what.. You didn't want to do it..

 

But you did it in the quest of whatever may work...

 

I have done so many things that have hurt my ears as well and it so totally surprising that ears can recover from that at all.

 

But still they can improve.. Even from all that ...

 

I just had to say.. You were so brave to do what you did and to share what you went thru..

 

With all of us..

 

Lots of people who read this may not understand how you could sit thru such a thing as AIT and survive it..

 

But OH God.. When a person whats to get well so bad they can taste it.. A person will do about or go thru about anything..

 

But if it wasen't for you and this board.. More people would be going thru everything you went thru to this day..

 

For a long period of time..

 

You have saved alot of people alot of grief..

 

In the long run....

 

And your board will save more..   

 

I just had to say this....

 

 


__________________
Take Care

Lynn
0
Preston

Registered:
Posts: 130
Reply with quote  #15 

Just brainstorming but there might be a few considerations towards resolving an aggressive vs. conservative strategy.

 

1. How prone is the person towards major setbacks?

2. What is the severity of their condition?

3. What are the environmental factors, i.e. are they shut-ins or are they out in the noisy world of work and family? Most people don't live in a vacuum and will be affected by sounds in their surroundings that exceed the daily volume of the pink noise CD.

 

A quick two cents...

Preston

0
LynnMcLaren

Registered:
Posts: 7,990
Reply with quote  #16 

Hi Preston, ((( Smiles ))))

 

All thoses are good points..

 

Especially when it comes to the Pink Noise Cd......................

 

What are the environmental factors, i.e. are they shut-ins or are they out in the noisy world of work and family?

 

Most people don't live in a vacuum and will be affected by sounds in their surroundings that exceed the daily volume of the pink noise CD.

 

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

 

I totally agree. And that even goes.. with an open ear device generator...

 

I think that is telling about life and sounds in general and people who recover overtime even.... from all of that..

 

And with the pink nose Cd.. A person can adjust the volume.. We have that control..

 

Unless one is virtual a shut in.. We do not have that kind of control over life....

 

 


__________________
Take Care

Lynn
0
LynnMcLaren

Registered:
Posts: 7,990
Reply with quote  #17 

Hi Stringplayer ((( puzzled )))

 

You Wrote..

 

And I definitely disagree with much of what he is saying.  In a big way!

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

 

I read the posts above and it didn't look like you disagreed with each other in a big way ...

 

And even if you both did...

 

And I don't think Dan would do something like that with a disagreement..

 

I don't think it was him makeing the call...

 

It might have been something else......  


__________________
Take Care

Lynn
0
janepm

Registered:
Posts: 1,644
Reply with quote  #18 
Preston: great suggestions with that list and Stringplayer, keep on hanging with us, I know sometimes I accidentally push a wrong button and something goes awry. (like accidentally erasing my address book, the ONLY copy I had!)
__________________
Jane
0
LynnMcLaren

Registered:
Posts: 7,990
Reply with quote  #19 

Hi Jane, ((( Smiles )))

 

Your Address Book.. Thats terrible.. Long time ago.. Either my daughter or someone.. Deleted my mailbox..

 

My daughter is no longer allowed to us my computer...


__________________
Take Care

Lynn
0
LynnMcLaren

Registered:
Posts: 7,990
Reply with quote  #20 

Hi Stringplayer , ((( Perplexed )))

 

It started out with...

 

Stringplayer posted this on a different thread.  I feel it is an important topic and one where others might like to participate. 

 

 I think it should be a separate thread for those who would like to discuss this topic (desensitization) at greater length. 

 

Thank you stringplayer for the following comments:

 

 

I have no idea.. I didn't see your post... 

 

I don't know why it was deleted or what thoses reasons may be..

 

I have no idea but I don't think Dan would a have post deleted on a regular disagreement..

 

And I don't know if it was him at all.

 

And neither do you..

 

But I don't think it was..

 

But.... Whatever it was....

 

You both where haveing a debate above..

 

And Dan's the one that brought over this thread in the first place..

 

If he didn't want you to speak your thoughts..

 

He would not have brought it over here in the first place for debate..

 

And asked for any thoughts..

 

And the first time you posted with any thoughts..

 

That would have been deleted as well..

 

But it's still up on the board..

 

Don't know what to say.......

 

I have no idea......

 

Only you know and who knows..

 

Because I don't... 

 

I'm still takeing in the posts above...

 

They looked pretty good to me........

 

Not everyone agree's on everything..

 

I know I don't..

 

But that's O.K.........................

 

People can agree not to agree..

 

But I'm still going to ponder over the threads above......

 

 

 

 

 

 

 


__________________
Take Care

Lynn
0


Registered:
Posts: N/A
Reply with quote  #21 

Tell ya what ...

 

I know for an absolute 100% certainly that I did not delete my own post.

 

But I'll try it one more time - anyway.  OK?

 

Dan posted:

 

We are trying to carry on a discussion here for the betterment of eveyone.

 

...........

 

I hope so.

 

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

 

Time and time again I tell everyone that these are just my views.

 

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

 

And time and time again you misrepresent mine.  I'm tired of it. 

 

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

 

It is unfortunate and hurts this community when you talk like this.

 

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

 

What hurts this community more is restriction of ideas when they do not exactly "fall into line" with yours.

 

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

 

Finally, pink noise CD's do not work just as well.

 

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

 

I never said they did - and I really resent being misquoted.  I said that pink noise CD's work just as well as TRT in hyperacusis when they are used properly.  TRT devices are more convenient - not more effective.

 

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

 

If that were the case you would have given your patients a pink noise CD.

 

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

 

... and if I were in practice today I would.

 

............ 

 

You didn't!

 

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

 

Right.  I was naive about that.  There is a steep learning curve in all this.  I am trying to offer the readership of this board the benefit of what I have learned.

 

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

 

Pink noise CD's only work as well in so much as they are an inexpensive delivery system for pink noise. 

 

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

 

... and TRT devices are an expensive delivery system for pink noise.  Right?

 

...........

 

Noise generators make the patient far more mobile.

 

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

 

You are correct, Dan.  No question about that.  But pink noise CD's when used properly a couple of hours a day while you are doing paperwork, reading, etc. are equally effective.  That's all I said.

 

..........

 

As far as the total package - that is - being a delivery system and mobility - noise generators are a better package and used by all TRT clinicians. 

 

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

 

The only reason noise generators are used by all TRT clinicians is because noise generators are part and parcel of the TRT protocol in the treatment of hypreracusis.  And TRT clinicians typically just do TRT! 

 

Look.  A pair of noise generators costs the patient upwards of $2500.  That same pair costs the clinician around $500.  You do the math.  Seems to me that a $15 CD is at least worthy of mention to the patient, no?  Especially because there is not one single study in the literature that shows TRT to be any more efficacious in the treatment of hyperacusis than pink noise CD's when the CD's are used properly.   So what if the CD's are a little less convenient?  Explain the pros and cons of each - and let the patient decide.  That's what I would do were I still in practice.  And, Dan, do not presume to imply otherwise.  I find that to be offensive. 

 

And while I'm on a roll here, Dan, do not talk about how hard it is to listen to pink noise CD's - when "listening" is the just about last thing you want a patient to do.  You make it into some kind of chore.  What kind of message is that?  Dr. Jastreboff surely doesn't want his TRT patients to "listen" to the sound coming from the $2500 devices.

 

The real question is how to get more hearing healthcare clinicians interested in learning more about hyperacusis and in treating people whose lives are so greatly impacted by hyperacusis.  There is only one way that's going to happen.  Advocacy.  And there is only one way advocacy is going to happen: You know what that is.

 

sp

   

 

 

0
DanMalcore

Avatar / Picture

Dan
Registered:
Posts: 1,396
Reply with quote  #22 

Stringplayer

 

I have been out of town since late this morning.  Our dog was killed by an automobile and we were checking out a new puppy 120 miles north of Green Bay.  Anyway, looks like you have been busy and are accusing me of misrepresenting you, deleting a post (don't know what that is all about), and restricting ideas.  I am sorry you feel that way.  The very reason I copied your comments (word for word) was to encourage discussion.  I am not misrepresenting anything you have to say.  My gosh, you are free to say anything you want.  I have enjoyed this topic.  Enough of that.

 

I have used both noise generators and a pink noise CD.  My personal view is that a noise generator is far more convenient.  I never said it worked better.  I just found it more convenient and it made me mobile during my work day.  I typically work 10 - 12 hours a day and it would not have been possible for me to do 8 hours of pink noise using a CD. 

 

I do not believe TRT clinicians dispense noise generators because that is "typically just what they do."  Noise genernators serve a very good purpose, however, as I have said, they are overpriced.  Aside from that, I do believe in the value of using a pink noise CD.  After all, the network makes them available to anyone who wants one for a nominal fee (or free if they can't afford one).  Finally, a word on advocacy.  It has been stated many times by knowledgeable people that there are about 50 million people with tinnitus.  When you have a base of people like that you can actively seek donations to further research in tinnitus.  Hyperacusis is rare.  We do not have that kind of base.  We do however act as an advocate so hyperacusis can be understood by the medical community and disability compensation boards worldwide.  I refuse to charge dues for this network, I receive no compensation for what I do, and I accept no advertising from any vendor.  If that is wrong, then I don't want to be right. 

 

Dan


__________________
"Yesterday is ashes, tomorrow is wood, only today does the fire burn brightly"
0
LynnMcLaren

Registered:
Posts: 7,990
Reply with quote  #23 

Hi Dan, ((( Smiles )))

 

Sorry about your dog.. That must of been tough on the family...I know your a busy man but you still make time for us and this thread.. Unbelievable...

 

This has been a great thread with great thoughts and I would hate to see it end... Because I still haven't had time to really think about it all..

 

Yes.. Thats ...I feel..

 

I like the pink noise Cd.. I think it could work real well too like Stringplayer believes it can.

 

I never did TRT but I am so glad that the choice is out there. I'm for choice..

 

But thats true.. The generators are probably more convenient in the way they travel with you.. But for the price of a tape..

 

Though you can't get that anymore..

 

But the price of a Cd.. You can't beat that deal...

 

Just haveing both around.. Just being able to get the Cd.. Gives everybody an opportunity to get better if they for some reason..

 

Either choose's to go this way.. Or can't leave the house.. Or travel. Or afford the therapy.. Or just not able to go or do it in general.....

 

Everybody needs help..

 

But..  It's easier to do the pink noise therapy.. If one.. Is at home.. Has a portable to carry it around with them and the time to do so..

 

Or just .. By a person's bed why their non mobile... Reading or.. Resting...

 

Or one can do it in the morning or after work or at bedtime or night..

 

But I'm not sure about if a person wears a TRT unit when they leave the house...

 

Since going to work can be loud.. I just think..

 

It would be hard not to use plugs with hyperacusis especially in certain stages on going out..

 

Unless.. A person didn't need plugs.. In the car or to go out..

 

Unless TRT is used mostly at home untill a certain stage of progress..

 

I just don't know how that works....

 

But you've done both... Pink Noise Cd and TRT...............

 

You typically work 10 to 12 hours a day wow..

 

But it's probably pretty quiet where you work.

 

Unless .. Theirs an amped organ playing with singing going on..

 

I don't really know..

 

But.. It would be terrible to do TRT and work in a factory..

 

I bet nobody does that right ???????

 

Good thread.......................................

 

 

 


__________________
Take Care

Lynn
0
LynnMcLaren

Registered:
Posts: 7,990
Reply with quote  #24 

Hi Stringplayer, ((( Smiles )))

 

I've been thinking this over and after reading Bonnies post.. Thou..

 

That still doesn't change my mind that most people with hyperacusis if not all people with hyperacusis..

 

Need to be more challenged with a sound therapy..

 

And set back's or pain with any treatment or even the tinnitus being stirred up and irratated and even screaming  louder over an extended time period does not necessarily mean it will not work for one in the long run..

 

That it is necessarily bad as people have recovered from more then that over time...

 

With sever hyperacusis especially and any hyperacusis mostly.. Or even with tinnitus.................

 

A person will have setbacks and not feel good with any treatment....

 

And with sound as a treatment in itself.... Sound can feel bad............

 

And sound is challenging the auditory system when it rather not be challenged by anything at all.

 

And I agree like you... that pink noise can work just as well as TRT in the right circumstances for alot of people as...

 

Really done.. Really tried.. Really sticking to it and following thru.............  

 

De sensitization is the key...

 

And in saying this..

 

I don't want anyone  who expirence theses symptoms with any therapy especially the pink noise Cd

 

And has been tryed by them... yet not long enough to be given up on  because they may actually need a therapy that does challenge their ears to proceed on to the next step...

 

Take that leap... That leap is hard.....

 

And I know your wife has been ill at this time and it is very hard for you..

 

And I know thats why you had to shut down your message board from what you had posted on this board before..

 

But I was thinking.. Maybe.....

 

That Rob may be on to something for people who have really really tried over the long term other therapies and it did not at all work for them..

 

That maybe...

 

For thoses people and when I say thoses people..

 

It just concerns me that others may define themselves as so because of how hard it is and how it can cause reactions and setbacks and added spiked tinnitus which could be normal..

 

In just doing any therapy weither it be pink noise or TRT over a time frame..

 

And give up early on............................

 

It does happen.... theses sensations lots of people have recovered from the worst of it all as well....

 

But yet.. As I thought it over after reading Bonnies post....

 

Rob may be on to something..

 

Maybe.. You and Rob...

 

Could create a  website..

 

A still page at first no pressure you can proceed at your own pace......

 

To test this proticol and it doesn't have to be more then you can handle at this time..

 

It doesn't have to be a message board as yet..

 

Just setting it up as something in progress with no pressure..

 

What do you think ??????

 

Could you and Rob do that...

 

Explain your concepts and feeling's over a web page of your makeing on a website as a research project in progress to be tryed on others someday..

 

Or offered to others someday ..

 

Hopefully.. Sooner then later...

 

What do you think...

 

Are you able to try something such as that..

 

It will be challenging for sure.................

 

Are you up to it....

 

For others who really really need help.............................................

 

What do you think ??

 

It's either a maybe yes or no.... 

 

It would be a big project for you..............................

 

But....Could you do it..................................

 

Thats if..

 

You have the O.K. from the one that made the Cd's in the first place to undertake a project such as this...

 

What do you think ? 

 

 


__________________
Take Care

Lynn
0
janepm

Registered:
Posts: 1,644
Reply with quote  #25 
Dan: I am so terribly sorry to hear of your loss and I agree with Lynn, you do provide such a wonderful public service for all of us to dialogue in, help each other and share with each other.

I have found this discussion between you and Stringplayer to be very informative though I realize it's been a challenge for both of you.

Know that we thank BOTH of you for your unlimited knowledge and willingness to share part of you, with us.

God Bless you both!

__________________
Jane
0


Registered:
Posts: N/A
Reply with quote  #26 

To throw another stick of wood in the fire (it is cold here!) the wholesale prices of noise generators is much closer to $800 and most audiologists will simply double the price or multiply it by 2 1/2 times. 

 

Maybe bigfacilities get some kind of discount, I don't know, but the increase in price for any hearing aid or assistive listening device is there due to the fact that audiologists are not allowed to bill for 'office visits', 'consults', or 'counseling'!  MDs can bill big bucks per hour for time, audiologists' time must be built into their device costs at this time.  It also covers the cost of repairs, shipping, and more, simple caretaking of the instrument. 

 

 

And you can imagine, all of you, what kind of time is spent on the phone (long distance) and in time, day or night, helping people who find H so distressing and difficult to withstand.......So please do not begrudge the fees that are actually reasonable, I think, to pay for rent, equipment, insurance, and salary....plus the cost of running an office.....if you asked most audiologists who work with T or H if their work turns a profit for their clinics, they might laugh!  Compared to the average diagnostic visit or hearing aid sale, T and H patients are time-devourers.......Four hours can simply disappear into the full case history and even then, we barely touch on many areas! It is like magic.

 

On another aside, about sixty to seventy percent of people who visit my clinic receive bilateral sound generators.  The vast majority of those patients, LOVE THEIR UNITS.  They really do.  As Dan said, they offer many conveniences and advantages over a cd in a player....now having said that, the problem is the expense....I recycle units, recase them for poor people, given them away, and so on, and the other day a patient stopped in who had gone down to an electronics store and bought a kind of iPod looking thingy, and he had downloaded a broad band white noise like signal, free! from the internet, and it cost him only $39 on sale!

 

That is great!  He was using earbuds and I thought he was very clever and he offered to send off his file with the sound for anyone else who cares to try this.  I will try to get the name of the device, I guess it runs about $50 at computer/electronic type stores (I don't go there!) and maybe some of you can try it.

 

I agree with the basic premise that hyperacusis is a state of physiologic dis-order and appears to be positively affected by sound therapy in over ninety percent of the cases!  This is good news for the average person with H, of course keep in mind there are cases that simply do not do well....last month a patient in Colorado tried Imipradine (sp?) and her hyperacusis disappeared in less than six weeks.  She tapered off after six or so months, and it has not returned.  Amazing!

Marsha Johnson, M.S., CCC-A, FAAA

0
DanMalcore

Avatar / Picture

Dan
Registered:
Posts: 1,396
Reply with quote  #27 
I am so glad you weighed in Marsha.  Thank you.
Dan

__________________
"Yesterday is ashes, tomorrow is wood, only today does the fire burn brightly"
0
LynnMcLaren

Registered:
Posts: 7,990
Reply with quote  #28 

Hi Marsha, ((( Smiles )))

 

Thats interesting.. Imiradine.. Thats an antidepressant..

 

One with a seditive effect with use for patients with insomia..

 

http://www.medicinenet.com/imipramine/article.htm

 

Lucky patient.. I wonder what changed for that patient in their body or brain fuction that caused that shift to happen for them.

 

As we are all chemically different.. Who knows what luck a person may have by trying something such as that..

 

Or melatonin or ect.....

 

Just.. who knows ???

 

Yet.. That patient was very lucky and it's rare just to get rid of it that easy..

 

Most people need some type of sound therapy plan.. Weither TRT or Pink Noise or ect.......................

 

But whatever works.... Wow.....................................

 

Thats great !

 

I took Trazodone.....

 

http://www.psyweb.com/Drughtm/jsp/trazod.jsp

 

I took it mostly before I came to the board as I was going thru such a hard time back then.. I weaned off of it from a year of use....

 

Thou it didn't prevent my hyperacusis from happening.. I feel..

 

It saved my life in the way it helped me cope thru the worst of T and H or the beginning part of the disorder which is the hardest time to cope with the changes into a T and H life...

 

Plus the seditive effects just put me to sleep. I'd say.. For about a year.. I got good sleep with the medication..

 

It was hard to learn how to sleep with tinnitus.. That was a hard one for me......... 

 

Plus with hyperacusis.. The sounds at night of lets say..

 

An airplane passing over head or raindrops hitting the windows or roof could make it hard to sleep at night also... 

 

I needed to learn how to do it.......................

 

And something to take off the edge so I could get better in time.....

 

You Take Care Marsha.....................


__________________
Take Care

Lynn
0
Mark

Registered:
Posts: 82
Reply with quote  #29 

Hello Dan, Lynn, and Marsha;

 

Great thread, but am I uderstanding it right?

 

This may sound lame, and only because my terminology is not up to par, but........

 

The term "desensitization"

 

Does this refer to the use of Pink Noise and the retraining of the ears hearing sensory?

 

Take care,

 

Mark

0
LynnMcLaren

Registered:
Posts: 7,990
Reply with quote  #30 

Hi Mark, ((( Smiles )))

 

You Wrote....

 

The term "desensitization"

 

Does this refer to the use of Pink Noise and the retraining of the ears hearing sensory?

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

 

Yes.......

 

The desensitization process can mean TRT or Pink Noise or a Sound Machine or working your way into sound over time, useing earplugs less....

 

All of the above.. It's what we do to our auditory system to help build up their tolerance to sounds over time.... 

 

A desensitization process. A desensitization program.......

 


__________________
Take Care

Lynn
0
Mark

Registered:
Posts: 82
Reply with quote  #31 

Hi Lynn,

 

SUPER!!!!!!!

 

I actually understood it correctly.

 

Thanks so much for watching over me.

 

Take care,

 

Mark

0


Registered:
Posts: N/A
Reply with quote  #32 

Tony posted:

 

What happened to stringplayers entire Pink Noise regiment

 

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

 

What appeared here a while back that you refer to as "stringplayers entire Pink Noise regiment" was posted by another individual, not by me.  It was a draft of mine that was originally in an e-mail - an attempt at a unified pink noise protocol that as it turned out contained several errors.  It was ill-advised to begin with and was withdrawn at my request.

 

sp

0


Registered:
Posts: N/A
Reply with quote  #33 

Way way above, Dan posted:

 

I do not believe TRT clinicians dispense noise generators because that is "typically just what they do."

 

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

 

Dan, with maybe one or two exceptions world-wide, the only way that TRT clinicians treat hyperacusis is with TRT.  And when TRT is used in the treatment of hyperacusis, it always involves the use of wearable noise generators.  That is what I meant by my statement above - and I will stand behind it.

 

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

 

Noise genernators serve a very good purpose, however, as I have said, they are overpriced.

 

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

 

I agree with you.  And the mark-up can be as much as 500%.

 

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

 

Aside from that, I do believe in the value of using a pink noise CD.  After all, the network makes them available to anyone who wants one for a nominal fee (or free if they can't afford one).  Finally, a word on advocacy.  It has been stated many times by knowledgeable people that there are about 50 million people with tinnitus.  When you have a base of people like that you can actively seek donations to further research in tinnitus.  Hyperacusis is rare.

 

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

 

I don't believe that hyperacusis is rare at all!!  Hyperacusis to the extent that it is disabling is rare - but hyperacusis itself may be as common as tinnitus.  Nobody has done any epidemiological studies - so we really don't know.  Jastreboff is of the opinion that around 40% of people of with tinnitus have hyperacusis to some degree or another.  I'd hardly call 20 million people "rare."  And that 40% figure doesn't take into account folks with hyperacusis who do not have tinnitus.

 

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

 

We do not have that kind of base.

 

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

 

Your potential base is may be as high as 20 million or more - if you believe Dr. Jastreboff's estimation.

 

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

 

We do however act as an advocate so hyperacusis can be understood by the medical community and disability compensation boards worldwide.

 

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

 

I am aware that you help individuals with disability compensation boards on a case-by-case basis and applaud that effort.  And if an individual wants you to communicate with his or her doctor, I am sure you do that too.  But to me that's different from promoting awareness in the medical community.  And it's different than getting severe hyperacusis recognized as a disability.  To accomplish either of those things would requite something more organized. 

 

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

 

I refuse to charge dues for this network, I receive no compensation for what I do, and I accept no advertising from any vendor.  If that is wrong, then I don't want to be right. 

 

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

 

It's not wrong at all.  There is no right or wrong.  I do not believe that you should charge dues if you do not want to.  And I think it's wonderful that you do what you do without drawing a salary.  But I also believe that if the hyperacusis community itself doesn't do something to promote hyperacusis awareness, nobody will do it for you.  And without awareness - without some sort of advocacy program - I do not see much hope for research.  Nor, for that matter, do I see an interest in treating hyperacusis being generated among non-TRT clinicians.  Maybe start with an organized letter-writing campaign to respresentatives in government?  And another to the American Academy of Audiology.  That costs no money.  There are lots of ways to promote advocacy within the scope of a dues-free model.

 

I'm not saying that anybody has to do any of this.  But I am saying that without it, you really cannot expect much in the way of progress.  I realize that a few here believe that tinnitus research might unlock the door to hyperacusis.  Seems to me that if that's what the hyperacusis community is pinning its hopes on - the possiblilty that a coincidental byproduct might emerge from research directed at another affliction - you're putting all your eggs in one basket.

 

sp

0


Registered:
Posts: N/A
Reply with quote  #34 

Dan also said:

 

However, desensitization is hard work in my view.

 

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

 

I respectfully disagree.

 

And not only do I disagree ... I really believe that Dan's well-intended words above send a wrong message.

 

Earlier in this thread I wrote:

 

"Desensitization is NOT hard.  NOT desensitization is hard."

 

and

 

"What in the world is hard about TRT or pink noise CD's?  You want to know what's hard?  Try to go through what my wife is going through right now.  Now that's hard.  There is nothing at all easy about a double mastectomy followed by chemotherapy followed by radiation.  But walking around with TRT devices in your ears set at a volume that is not painful to you - or playing a pink noise CD a few hours a day at a volume that is not painful to you.  Would you PLEASE tell me what is so hard about that?"

 

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

 

To put it succinctly, here's what I asked in another thread:

 

"I've never had hyperacusis.

 

So please enlighten me.

 

What is it that is so hard about wearing devices or playing a pink noise CD when the volume is set BY YOU at a level that is not painful TO YOU?"

 

sp

 

 

0
DanMalcore

Avatar / Picture

Dan
Registered:
Posts: 1,396
Reply with quote  #35 

In the future I would prefer to take a different view of hard and easy.  After all, what is hard for one person can be easy for another and vice versa.  Retraining with broadband pink noise does take patience.  However, it would be counter productive to suggest that this approach is hard because it could discourage people from trying it and ultimately returning to the mainstream of life.  Sometimes it is tough enough to get off the starting block and retrain one's ears when one has moderate to severe hyperacusis.  Furthermore some patients are dealing with more than hyperacusis.  Sometimes they have a problem with phonophobia, tinnitus, lack of sleep, etc.  The words 'hard' and 'easy' are relative terms.  We all know that.  But, for the sake of encouraging patients to start pink noise therapy, AND, if a the term hard or easy is used to describe the process, then I would rather default to the term 'easy' rather than hard.  I think stringplayer makes a good point here.

Dan 


__________________
"Yesterday is ashes, tomorrow is wood, only today does the fire burn brightly"
0


Registered:
Posts: N/A
Reply with quote  #36 

We kind of have some parallel threads going on here.

 

To clarify, elsewhere I wrote:

 

"Desensitization therapy is clearly inappropriate for the few people who cannot set the volume of their TRT devices or the volume of a pink noise CD at an initial level that does not cause pain - even for just a minute or two at first.

 

I confess that not one of the patients with hyperacusis I ever treated fell into the category of 'unsuitable for desensitization.'  Sometimes it requires a bit of patience and ingenuity to find a starting point, but that's why - in my opinion - it really helps to have an experienced clinician on board."

 

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

 

But I must confess:  Every single patient I ever saw made it out of the starting blocks - or the would have come to see me in the first place!  So my experience is a bit skewed.  All I can say is that one who does not attempt a treatment is in no position to say that it is hard or easy.

 

What Dan says is, indeed, very true:

 

"Sometimes it is tough enough to get off the starting block and retrain one's ears when one has moderate to severe hyperacusis."

 

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

 

When I say that desensitization is not hard, I refer to people who have actually made the decision to do it!

 

I also agree with Dan that some hyperacusics bring more to the table than hyperacusis.  That's why it's important to have an evaluation by a knowledgeable hearing healthcare professional before proceding.  For instance, if the problem is recruitment, all the desensitization in the world isn't going to help!  And if the problem is hyperacusis complicated by phonophobia, then desensitization alone will only get you so far - if you can even get to the point where you start it in the first place!

 

sp

0
LynnMcLaren

Registered:
Posts: 7,990
Reply with quote  #37 

Hi Dan Hi Stringplayer , ((((  Smiles ))))

 

I see something good in each of your posts..

 

Some good points but I have to get back to this later..  As my autistic daughter is being very busy in her behaviors right now...

 

She's getting kind of wild and I think Daddy needs help..

 

Be back later....


__________________
Take Care

Lynn
0
LynnMcLaren

Registered:
Posts: 7,990
Reply with quote  #38 

Hi Dan,

 

Wow.. Thats great ! You wrote... 

 

In the future I would prefer to take a different view of hard and easy.  After all, what is hard for one person can be easy for another and vice versa.

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

 

Thats so true.. It depends on the person and their hyperacusis level... It could go either way... Who's to say how it's going to be for a person untill they try it themselves and see... It could be hard..  Not that hard or easy.

 

Only the person who does it for themselves will know for sure how their ears will react... 

 

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

Also you posted...

 

 Retraining with broadband pink noise does take patience.  However, it would be counter productive to suggest that this approach is hard because it could discourage people from trying it and ultimately returning to the mainstream of life.  Sometimes it is tough enough to get off the starting block and retrain one's ears when one has moderate to severe hyperacusis.

 

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

 

It does take patience.. I understand your point about how it could discourage a person from trying yet...

 

Even if they know it could possibly be hard and if they find it that way for themselves.. Thats normal as well and it's O.K. too as it's not abnormal for some to expirence this as well..

 

And for thoses that don't.. Thats great. It's different for different ears...

 

Sometimes it's tough.. Sometimes.. It's not that bad at all...   

 

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

Also you posted... 

 

Furthermore some patients are dealing with more than hyperacusis.  Sometimes they have a problem with phonophobia, tinnitus, lack of sleep, etc. 

 

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

 

Yes.. That is so true.. It depends on what one is dealing with as well as what their expirence can or may be. Weither it's easy or hard for them...

 

There is so many variables that could make it more difficult for one then another...

 

It all depends....

 

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

 

You posted...

 

The words 'hard' and 'easy' are relative terms.  We all know that.  But, for the sake of encouraging patients to start pink noise therapy, AND, if a the term hard or easy is used to describe the process, then I would rather default to the term 'easy' rather than hard.  I think stringplayer makes a good point here...

 

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

 

Thats true.. Hard and easy are relative terms.. It depends on the person undergoing the therapy...

 

It can be easy.. It can hard.. Expect easy and if it's hard.. Then thats O.K. too..  I think encourageing patients to start pink noise therapy is a great goal...

 

Because they will never know how it will really be for them.. Untill they try it themselves.. Then they can let us know how it goes for them...

 

And if they find it easy.. Why tell them it would be hard for them first.. It may be hard.. And thats normal as well.

 

I hope I got that right... Sounds good to me.... 


__________________
Take Care

Lynn
0
LynnMcLaren

Registered:
Posts: 7,990
Reply with quote  #39 

Hi Stringplayer, 

 

But I must confess:  Every single patient I ever saw made it out of the starting blocks - or the would have come to see me in the first place!  So my experience is a bit skewed.  All I can say is that one who does not attempt a treatment is in no position to say that it is hard or easy.

 

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

 

Whats makeing it out of the starting block mean.. Every person you ever saw..

 

Or they would have come to see me in the first place...

 

Does that mean people that lived close to where you practiced or thoses who were willing or able becomes of some improvement they have had  allready made to be able to take a plane ride out to see you..

 

To come see you in the first place..

 

Or the worst would not get on a plane in the first place so of thoses kind of patients.. you didn't get to see...

 

I'm sorry. I don't understand correctly what you are trying to say..

 

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

You posted...

 

When I say that desensitization is not hard, I refer to people who have actually made the decision to do it!

 

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

 

I think also the determination and the decision to go forward does help.. To actually do it...  

 

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

 

You posted...

 

And if the problem is hyperacusis complicated by phonophobia, then desensitization alone will only get you so far - if you can even get to the point where you start it in the first place!

 

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

 

So if the hyperacusis is complicated by phonophobia, then desensitization will only get you so far..

 

Can you elaborate on that for me.. Is that were the emotional issues come in. To be able to proceed on...

 

Thank You Stringplayer

 

 

 


__________________
Take Care

Lynn
0


Registered:
Posts: N/A
Reply with quote  #40 

Lynn asked [regarding "getting out of the starting blocks"]:

 

Does that mean people that lived close to where you practiced or thoses who were willing or able becomes of some improvement they have had  allready made to be able to take a plane ride out to see you..

 

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

 

It means simply that people who have sought my advice have already made the decision to DO SOMETHING.

 

If they are paralyzed by [erroneous] concerns about the treatment somehow being "too hard," they will not get to that point.

 

One reason some folks with severe hyperacusis do not do TRT is its expense.  With pink noise therapy performed under audiological supervision, they can likely save themselves some big bucks.  But not if they don't try the treatment in the first place because they [erroneously] think it's going to be too hard.  Hyperacusis is hard.  The treatment is not.

 

sp

 

PS - I think I've said all I can possibly say on this subject.

0
LynnMcLaren

Registered:
Posts: 7,990
Reply with quote  #41 

Hi Stringplayer , ((( Smiles ))))

 

You Wrote...

 

I don't believe that hyperacusis is rare at all!!  Hyperacusis to the extent that it is disabling is rare - but hyperacusis itself may be as common as tinnitus.  Nobody has done any epidemiological studies - so we really don't know.  Jastreboff is of the opinion that around 40% of people of with tinnitus have hyperacusis to some degree or another.  I'd hardly call 20 million people "rare."  And that 40% figure doesn't take into account folks with hyperacusis who do not have tinnitus.

 

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

I had tinnitus first no " Classic " hyperacusis or any hyperacusis that I new of so  I think..

 

I am one of the 40 percent.  But I also might have had hyperacusis with my tinnitus in a mild form to some degree while my condition progressed..

 

Maybe thats where the static problem came from because I didn't have a problem with static sounds when it was just a one ear ringing 24/7 back then..  

 

When it started off. But I suffered for so long with progression before I came to the board and the progression was like 8  months till I felt pain and complained of sensitivity to loud and sounds sounding loud in December 02... 

 

Before that it was pretty much just static reacting tinnitus. My tinnitus was pretty bad.... Except for that train outside my therapists office back then...

 

Now that sounded kind of loud and bothered me. I didn't know how she could sit by that window and listen to thoses train's go by out there and told her so..

 

Thats when she wanted me to join a tinnitus group... 

 

So people whos first noticable expirence is with tinnitus can have hyperacusis in different degress as well.

 

So I guess thoses kind of people have to be more carefull then someone else with tinnitus in loud noises so it doesn't get worse..

 

Maybe use some sort of broadband therapy. I just have a feeling if  had the pink noise tape way back then maybe things would not have gotten so bad for me but I don't know that for sure..

 

Because all the other things I had done as well in tests ect....

 

And my daughters screaming in my ears back then with tinnitus untill I started trying to protect my ears from her screams.. 

 

So I just don't know..

 

But I guess having the tape before all this misery acurred for me.. Might of helped..

 

I've thought of that before too. But who knows for sure.... 


__________________
Take Care

Lynn
0
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.



This message board is for informational purposes only. It is not intended to substitute for any medical advice. MANDATORY BOARD ETIQUETTE: 1. No personal attacks. 2. No profanity or use of inappropriate usernames. 3. No self solicitation of goods or services. 4 No discriminatory remarks based on race, gender, or religion. 5. Prohibitive postings include the following: discussing or suggesting the intent to end one's life, moderating or actions made by the moderators, and/or revealing personal information (full names, address, phone number). Rule infraction may result in either a warning or ban, depending on the severity. Kindness matters.