The Hyperacusis Network Message Board
Sign up Latest Topics
 
 
 


Reply
  Author   Comment  
SkaMasta097

Registered:
Posts: 76
Reply with quote  #1 
I have read many times on here that setbacks are common. Is this when symptoms of tinnitus and hyperacusis flare up after a loud noise exposure? I am guessing a setback does not involve hearing loss or damage, but is simply a result of exposure to noise levels above one's loudness discomfort level yet under dangerous noise levels (85 dB and above).

Why are they so common? and what do people do when they happen?

Is H recovery similar to physical therapy?
0
aQuieterBreeze

Registered:
Posts: 2,083
Reply with quote  #2 
Skamasta,

about setbacks you asked-

Why are they so common? and what do people do when they happen?

May I ask why you are asking?
There are many threads and posts about  setbacks -
Different people may experience them a bit differently,
And some have setbacks that last longer than others.
0
SkaMasta097

Registered:
Posts: 76
Reply with quote  #3 
I am asking because I don't know exactly what it is. I have seen some posts describing it, but I haven't seen any whole threads about it. Is it normal that an H patient flares up after a noise exposure several times during recovery? How much is too much? I wonder if people with leg injuries have to go back to square one several times before they recover too.
0
catlady2323

Registered:
Posts: 208
Reply with quote  #4 
Hi SkaMasta

I was born with hyperacusis (no tinnitus), and have decades of experience with this neurological condition.  I have no damage nor have I ever sustained any injury to my ears.  In fact I have excellent hearing.  My hyperacusis is neurological.

What others here are describing as "setbacks" to their recovery, I am wondering if in fact the damage done to their ears is permanent and therefore what they are perceiving as a "setback" is in fact a "kickback effect".  So when they expose themselves to noise significantly above their LDL, or sustained noise that is barely above their LDL, that what happens is shortly thereafter they are in pain.  They have gotten a "kickback effect" from the previous loud noise exposure.

This has been my experience for decades.  My LDL is 50dB, when I am in an environment for a sustained length of time above this amount, the pain I feel in my central nervous system gradually increases, until it become so great, I must recover either with reduced noise (less then 50dB), or with soft nature sounds.    

So it would be comparable to having a "bum knee" from an old football injury.  Even though the knee has healed, it just isn't quite what it used to be, and so you are careful to not place it under too much stress.

There is an assumption that everyone with hyperacusis can recover, and be "good as new".  The idea being that with proper treatment protocols everyone can be free of hyperacusis (and tinnitus).  What isn't mentioned is that there is no scientific backing for this assumption, and in reality there are those who may improve with treatment, but never be completely cured. 

Hope this helps to frame your thinking about your own experience with hyperacusis.

Best regards,

Sharon

 

0
aQuieterBreeze

Registered:
Posts: 2,083
Reply with quote  #5 
Hi Skamasta,

Even during recovery the path is not always smooth, and as one works on improving their tolerances to sound,
sometimes one is exposed to sound above their limits.
In my view that could and would happen at times to someone with hyperacusis,
whether one is working on improving their tolerances to sound or not.
By working on improving ones tolerances to sound,
by desensitizing to sound in appropriate ways, using a method or methods that are appropriate for one on an individual basis-
I think, at least for many people - over time it has the potential to make it so setbacks are much less likely to occur, and if they do they may not be as severe as they may have been otherwise- even with the same level of sound exposure. But I am not in the medical field and that is just my view.

As I work on improving my tolerances to sound, in ways i have found to be helpful - some things that used to cause setbacks for me do not anymore.
Some of my setbacks fade away more quickly then they likely would have in the past....
at times more quickly than i would have imagined possible (For me anyway)
and some are not AS difficult as I think they would be otherwise.
BY not working on improving my tolerances to sound, as I did not know what to do for a long time -
I think I was more prone to setbacks - and for me they used to be a lot more frequent.
And it also took less in the way of sound to cause them.

The last setback i had, not too long ago - was caused by LOUD sound - anyone would have considered it loud -
but surprisingly, as difficult as it seemed, and as long as it lasted until i got back to where i had been before it occurred - it surprisingly - did not seem to take me all the way back to square one. Though it was pretty close.
It also started to let up a bit after not too long, though it took quite awhile for me to recover from.
I have had setbacks take me back to square one, it was quite surprising to me that - that one, even caused by Loud sound did not seem to. even though it was close.  For me it was encouraging....and though i would have loved to have avoided the setback, to have it begin to fade more quickly, and not be nearly as severe and long lasting as i think it would have been in the past, or otherwise if i had not been working on improving my tolerances to sound  - is encouraging to me..

There are ways through these challenges, and though the road is not always smooth, I really think it can get smoother as we go - but in order for it to do so - I think working on improving ones tolerances to sound in ways that are appropriate for one on an individual basis is very important.

Also having a good respect for sound is as well. And it seems some of your friends do not -
as you have mentioned how LOUD they listen to music, to be honest, I think hanging around with people who listen that loudly, and will not respect Your needs not to have it that loud
(and do not even comprehend what they are doing to their own ears in the process ) -
seems like it would make it more difficult to recover. 
Challenging our hearing and ears in appropriate ways is important, but going too far over what we are able to tolerate, can make it more difficult.
To move forward in a positive direction,
with what we are able to tolerate, a bit at a time overtime ---is something i think can be helpful though.

Also the way we think about things can be very important, and i would try to think of it in different terms than what you mention......

you mentioned-
I am asking because I don't know exactly what it is. I have seen some posts describing it, but I haven't seen any whole threads about it. Is it normal that an H patient flares up after a noise exposure several times during recovery? How much is too much? I wonder if people with leg injuries have to go back to square one several times before they recover too.

You also asked-
Is H recovery similar to physical therapy?

I have long viewed using sound in some ways I have found to be helpful as physical therapy for my ears, and in my view that is a good way to think about it.
0
Rob

Registered:
Posts: 4,049
Reply with quote  #6 
Sharon -

Do you have conversations with your husband?  Do you watch television? 
0
saab1216

Registered:
Posts: 152
Reply with quote  #7 
 comment removed(irrelevant)
0
Johnloudb

Registered:
Posts: 1,951
Reply with quote  #8 

Paul,

Who's to say Sharon can't be helped. What's wrong with offering ideas and suggestions that might help people see things differently.

Often strongly held wrong beliefs can keep people from moving forward. Maybe Sharon can't move forward, but no harm in offering help.

I've experienced the same things Sharon has and it took very strong beliefs that I could move forward and that my symptoms where nothing to be concerned about to move forward. 

I put up with a lot, and pushed ahead slowly. Sometimes it takes years to habituate to sounds.

Quote:
I am asking because I don't know exactly what it is. I have seen some posts describing it, but I haven't seen any whole threads about it. Is it normal that an H patient flares up after a noise exposure several times during recovery? How much is too much? I wonder if people with leg injuries have to go back to square one several times before they recover too.

Ska,

I've had some big setbacks even going back to square one, but the general trend has been forward progress. 

0
aQuieterBreeze

Registered:
Posts: 2,083
Reply with quote  #9 
Paul,

 awhile back you wrote ---

being with my children takes control of my focus and puts it on them.I love them so much ....

To me that sounds like some Very good reasons to do everything you can to recover.


0
Marilyn

Registered:
Posts: 194
Reply with quote  #10 
Sharon,
I seem to remember you've posted on other threads your sensitivity to sound is because of autism?   


__________________
~ Better days are ahead! ~
0
aQuieterBreeze

Registered:
Posts: 2,083
Reply with quote  #11 
Hi Paul,

The following says alot ......
you posted it in a thread called progress
on 4/27/09 at 06:47 PM

Quote:
I am not bragging, but It seems like the more I keep my focus off  the negativity and doubt of my H/T, the better I become. I have done the complete impossible this month. Last weekend I went white water rafting,Running(jogging) over a busy and noisy bridge. Drove ten hours round trip with my two very noisy boys in the car with me,Listened to countless hours of music(irritating at times),Shot a 12 gauge shotgun and 38 revolver(ear protection of course).Today went bike riding and even cut most of my lawn without ear protection! Things still sound a bit louder than I can remember and soft sounds still a bit irritating but... The more I expose myself to sound without all the fear, the better I become! Silence is the enemy. Whenever I am in my house I always wear the sound generators. ALWAYS! I keep trying to remember that "normal"sounds wont destroy me. Environmental sounds can be bothersome(birds,driving rain,running water etc) But they cannot do any physical damage. This is my reenforcment. Do I suffer setbacks? you bet. Do the setbacks go away? yes,usually overnite. It is a constant volley of tennis everyday but results slowly and surely come. The worst thing is to write off your life. Find the things that you can still do and stick with them.I had to give up my first love(playing bass guitar,harmonica,piano). If God wills me to play again someday than I will gladly go for it. For now I will try to keep a positive mental attitude and trust God to heal me or show me what I can do to overcome this! P.s.Relaxation is KEY!!!!!
__________________
Paul


and Rob replied to you on -
4/27/09 at 10:05 PM
Rob wrote -
Quote:
saab --
 
Good for you.  You're figuring out some very important stuff.  Silence is an enemy.  Fear too.  There is absolutely no reason to think you won't play bass or piano again.  Maybe even the harmonica.  Take it from me.  Keep at it.  Show up every day and do what you need to do.  


Some very encouraging thoughts in those posts ..... and i would prefer to listen to people who say it can be done, than someone who says it can not.



0
saab1216

Registered:
Posts: 152
Reply with quote  #12 
John,my remark to cat lady was her constant conveyance to us that we may have PERMANENT DAMAGE. It has been very discomforting to me to come to this site and accept that nonsense. Sorry but I didnt find it very helpful. I am sorry to you too sharon because i know that you have dealt with this for a lifetime. I know that I have had my times of discouragement here as well but I would like to focus more on the light ahead for all of us here and that healing can happen. I have been improved quite a bit and am still going strong.
0
catlady2323

Registered:
Posts: 208
Reply with quote  #13 
Quote:
Originally Posted by Rob
Sharon -

Do you have conversations with your husband?  Do you watch television? 


Yes I have conversations with my husband (lol) and I watch TV occasionally (there are usually other things I prefer doing). 

The earbuds my husband is gracious enough to use when he watches TV, allow him to enjoy whatever he wants to watch when I have no interest in that particular show or event.  There are an open design so we can carry on a conversation easily while he is watching, if he or I want to converse. 


0
Rob

Registered:
Posts: 4,049
Reply with quote  #14 
Yes I have conversations with my husband (lol) and I watch TV occasionally (there are usually other things I prefer doing). 

I am glad.  You may be uncomfortable hearing this, or maybe not.  But based on what you've described, your LDLs are higher than 50. 

I'm curious why you've never gone to a clinician for help with this.

Rob 
0
catlady2323

Registered:
Posts: 208
Reply with quote  #15 
Quote:
Originally Posted by saab1216
Sharon brings so much hope and joy PERMANENTLY!!!


I have to admit this made me laugh.  I could just hear the sarcasm in your voice.



  
0
catlady2323

Registered:
Posts: 208
Reply with quote  #16 
Quote:
Originally Posted by saab1216
John,my remark to cat lady was her constant conveyance to us that we may have PERMANENT DAMAGE.


I have posted replies 54 times on this forum, and  used the phrase "... which may be permanent damage..." only once and mentioned that it might require some change in lifestyle and accommodation, while seeking treatment options. The other two times I said anything about possible permanent damage it was in the context of seeking healing, and hoping they would find permanent relief. 

Contrary to what we would like to be true, not all injuries can be perfectly healed.  Some leave scars, some have residual pain, some require ongoing treatment and accommodations.

Some heal perfectly.

The nice thing about a public forum is that many different perspectives and types of advice can be represented, and those who ask questions are then free to choose what perspective and advice they want to choose for themselves.

That said, I will be careful in future posts to not use the word "permanent". 

 

 
0
catlady2323

Registered:
Posts: 208
Reply with quote  #17 
Quote:
Originally Posted by Rob

I am glad.  You may be uncomfortable hearing this, or maybe not.  But based on what you've described, your LDLs are higher than 50. 

I'm curious why you've never gone to a clinician for help with this.

Rob 


I have seen a licensed hearing specialist to have my LDL tested.  You may be right my LDL might actually be higher than 50 dB.  But since this measures loudness discomfort level, (not pain level), I suspect it is pretty close to accurate.  A vacuum cleaner, dishwasher and hand held hair blow dryer, are all rated at about 70dB, and all cause me discomfort. 

I have inquired with a local audiologist about being assessed for treatment, but she did not accept my insurance carrier at that time.  I plan on following up with her office this month to see if my carrier has been added to her practice. 

Sharon

0
Rob

Registered:
Posts: 4,049
Reply with quote  #18 
I have seen a licensed hearing specialist to have my LDL tested. 

Do you know what they are at the various frequencies measured in each ear?  In other words, were they measured specifically at .5kHz, 1kHz, 2kHz, and so on and do you know what they are? 

You may be right my LDL might actually be higher than 50 dB.  But since this measures loudness discomfort level, (not pain level), I suspect it is pretty close to accurate. 

I suspect your LDLs are considerably higher than 50 because you can have a conversation with your husband without feeling discomfort or pain.  The volume of a speaking voice is louder than 50dB.

A vacuum cleaner, dishwasher and hand held hair blow dryer, are all rated at about 70dB, and all cause me discomfort. 

It may be that the higher-ended frequencies emitted by a vacuum cleaner, dishwasher and blow dryer are what cause you discomfort.   

I have inquired with a local audiologist about being assessed for treatment, but she did not accept my insurance carrier at that time.  I plan on following up with her office this month to see if my carrier has been added to her practice. 

And if she hasn't added your carrier to her practice, will you pursue other options?  Your challenges with sound are treatable.

Rob   
0
saab1216

Registered:
Posts: 152
Reply with quote  #19 
Rob,this doesn't make sense to me as you do know,I have very high ldl's but my wifes voice poses a problem for me.It can cause a lot of discomfort most of the time. I know that I need to see another audiologist for this ongoing problem. Just a thought. Here are my LDLs as they appeared last year.



LDS for the right ear are as follows:
105, 105, 100, 95,95,95,90 from .5 to 8kHz

left ear as follows:

105, 100, 95,95, 90,90, 80 from .5 to 8kHz

0
catlady2323

Registered:
Posts: 208
Reply with quote  #20 
Quote:
Originally Posted by Rob

Do you know what they are at the various frequencies measured in each ear?  In other words, were they measured specifically at .5kHz, 1kHz, 2kHz, and so on and do you know what they are?


Thanks for asking. My hearing is basically the same in both ears, and were measured specifically starting at .25kHz up to 8kHz. 

My results are bell shaped beginning with being able to hear at 0dB for .25kHz with an LDL of 30dB, then gradually increasing to hearing at 20dB for 1kHz with an LDL of 50dB then returning to hearing at 0dB at 8kHz with an LDL of 30dB at that frequency. 

I have never had any pain whatsoever in my ears or head, and no tinnitus. 

I do find it intriguing that the gap between when I hear a sound, and when it registers as uncomfortable to my nervous system, is 30dB, and that gap remains the same as my ability to detect a particular sound increases or decreases.

Neurobiology fascinating stuff, don't you think?

Sharon


0
aQuieterBreeze

Registered:
Posts: 2,083
Reply with quote  #21 
Sharon,

You mentioned-
I have never had any pain whatsoever in my ears or head, and no tinnitus. 

You have also mentioned that sound causes you pain.

Can you please explain what sort of pain sound causes for you, and where and how you notice it?
0
catlady2323

Registered:
Posts: 208
Reply with quote  #22 
Thanks for asking aQuieterBreeze,

I have never had any pain in my ears.  I have never been exposed to overly loud music, have never had ear infections, have no trauma to my ears.  My collapsed tolerance for sound is neurological and has always caused me real distress.

I explain it to my husband this way.  Imagine if every time you heard a riding lawnmower someone started punching you on the arm. Not real hard, but noticeable.   Now suppose that the intensity of the "punch" you feel is determined by how loud the noise is, and how many noises you are exposed to at the same time.  

That is how noise feels to me. 

Noise quickly overloads my nervous system, and causes me to feel "assaulted".



0
Rob

Registered:
Posts: 4,049
Reply with quote  #23 
Sharon -

When a sound is too loud for you, where do you feel it? 

When a sound is too loud for you, does it hurt?   Where does it hurt? 

Rob
0
catlady2323

Registered:
Posts: 208
Reply with quote  #24 
Rob I am not sure how to answer your question. 

When sound is too loud, where do I feel it ?  Everywhere.  My entire body feels it, like how I imagine neurotypical people react to nails scratching on a chalk board.  Where specifically does that "hurt" them ?   It doesn't, but the reaction is one of extreme dislike (and avoidance), although it doesn't physically hurt in their ears (or anywhere else). 

So imagine if loud noise, or high pitched (or low pitched) sounds felt that way.  A constant exposure to nails scratching on a chalk board.  I doubt a normal person would acclimate to that sound, but instead would take great effort to avoid it, or reduce it while going about their regular daily responsibilities.

I have never had any pain in my ears.  Noise or sounds do not cause pain inside my ears or head.  I don't get headaches, or any other "physical" manifestation.  Instead my nervous system is overwhelmed and I feel a rising annoyance, aggravation, exhaustion, frustration, and then just flat out meltdown as I am exposed to greater and greater volume and/or layers of noise.

This is why I don't think TRT would work for me.   I have had 5 decades for my brain to acclimate itself to the level of noise commonly found in American society.  Since this has not occurred, and my experience has been that when I add more layers of noise (which TRT would do) that it just overloads my nervous system. 


 Kind of like plugging in too many appliances into the same outlet in your home.  It overloads the circuits, which will then short circuit. An electrical overload is when an electrical system is subjected to more of a load then it was designed to carry.  My neurology either from genetics, or poor brain development, isn't capable of handling the "load" of noise that neurotypical people can handle.  
TRT would just be one more source of noise loading onto the "circuit" of my nervous system.

Did this answer your question? 



0
Johnloudb

Registered:
Posts: 1,951
Reply with quote  #25 

Sharon, like you say, that actually sounds more like misophonia, or an aversion to sounds,  than hyperacusis.  And just exposing yourself to sounds to acclimate to the sound isn't TRT. TRT is about gradually facing your disaffections and changing how you respond to the sound, thinking good thoughts. And, maybe CBT would could help you? Don't know, but it couldn't hurt to try.

I used to feel the same way about my mom vacuuming above my room. And while it didn't usually hurt it would drive me nuts and things would escalate. Sometimes it would hurt or I'd get get a headache, but not usually.

When you first showed up on the Network you said that sound did hurt your ears, and that when you quit going out you found your ears quit hurting. Maybe that's just how you were describing your problem without going into detail?

If you fear or have a strong dislike of your symptoms that could be a roadblock to making progress. That's where good thoughts come in. 

People do have a natural aversion to nails on a chalkboard but I people can habituate to any sound. So, with a little practice and good thoughts I'd bet most anyone could habituate to the sound. 

Audiophiles habituate to many naturally aversive sounds too. Another story.

John

0
catlady2323

Registered:
Posts: 208
Reply with quote  #26 
Hi John,

When specialized words become widely used, they are often used inaccurately.  So to clarify here is the definition of hyperacusis:


abnormal acuteness of hearing due to increased irritability of the sensory neural mechanism; characterized by intolerance for ordinary sound levels wordnetweb.princeton.edu/perl/webwn

hy·per·a·cu·sis .

Abnormally acute hearing due to heightened irritability of the sensory neural mechanism.
The American Heritage® Medical Dictionary Copyright © 2007, 2004 by Houghton Mifflin Company. Published by Houghton Mifflin Company. All rights reserved.

Notice in these medical definitions there is no mention of pain inside the ears, nor is a feeling of fullness in the ears mentioned.  Nor is tinnitus mentioned.  Please also note, that it involves "acute hearing" and "sensory neural mechanism" which is just a fancy way of saying "this is occurring along the brain pathways for processing sound."

I have hyperacusis.  I have an "intolerance for normal sound levels".   I have never said that my ears hurt when exposed to sound.

The definition for misophonia is different. First of all the word "misophonia" was coined by Dr. Pawel Jastreboff.  It was invented to differentiate between those with a collapsed tolerance for sound (low LDL) versus those who don't have a problem with loud noise (high LDL), but find certain soft sounds (like people eating) so annoying that they seek treatment. Usually these people are sensitive to particular sounds which are not loud in volume.  This has mistakenly been thought to be a "dislike of sound" in general.  It is not.  It is the dislike of a particular type of sound (ie. people eating, chewing, popping gum, or speaking certain consonants like p, c, s , t ).

I do not  have misophonia. 

You said "...people can habituate to any sound.."   I don't think so.  That would be like saying  "people can habituate to being stung by wasps".  You don't habituate to it, you suffer with it, very different experiences.

Hope this clarifies the conversation,

Sharon 

0
Ed

Registered:
Posts: 112
Reply with quote  #27 
Sharon, with respect, your condition differs in many ways to many people on this board. Being born with Hyperacusis is a whole different ballgame to aquiring it, as most have. Those like myself who have aquired it, typically as a result of noise exposure, almost always have other symptoms such as tinnitus, ear pains, head pains, facial burning sensations, ear thumping/muscle spasms, ear fullness etc.

0
Johnloudb

Registered:
Posts: 1,951
Reply with quote  #28 

Hi, Sharon, 

You are right about having hyperacusis, but that doesn't mean you don't also have some misophonia. Almost all people with hyperacusis have some misophonia.

You have said that sounds hurt you, you may not have said said ears ... I'll take your word for it.

Quote:
You said "...people can habituate to any sound.." I don't think so. That would be like saying "people can habituate to being stung by wasps". You don't habituate to it, you suffer with it, very different experiences.

Dr. Hazell said either on his website or book that the ear can habituate to any sound. That's been my experience for the most part, save a noise produced by my stereo that caused my hyperacusis to begin with. But, maybe with the help of WSGs I could have habituated to that as well, but I avoid it because I can.

Some sounds are just more natural that others.

Of course people with neurological disorders like yourself often do have limits on what they can do. 

You got through many years without retreating indoors and I doubt all those years raising a family and going to school were pure horror. Something changed. Whether it was just your attitude toward hurt, or your ears ... I have no clue.

But, it's your life and your choice and I'm not critical of that.

John

0
catlady2323

Registered:
Posts: 208
Reply with quote  #29 
Ed I agree there is a real difference in those born with hyperacusis, and those who acquire it due to some kind of trauma to their ears.  Since this difference does exist in the cause, (and thus what exactly is damaged or not functioning properly) the treatment protocol should reflect this difference. 
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.