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david

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Posts: 24
Reply with quote  #1 
This article has been talked about on this site in the past, but I don't believe the full text was ever posted.  I'm also not sure anyone has tried it to date here. 
I'm on week 5 of the protocol and am noticing improvements.
I've attached the research study as 5 jpg's. 

In short, 34/34 subjects with varying degress of hyperacusis made it back to LDL's of 100db after 9 weeks of following this protocol 30 minutes a day.  It was not a double blind study, but the article seems to be from a meritorious Spanish scientific journal.

An overview of the protocol (VERY similar to the music protocol Robb has described and more or less consistent with the TRT program):

1.  You'll need a recording of water nature sounds (waterfall, stream, etc.).  I'm using one of a waterfall in glacier national park.  It has a good range of frequencies for me personally.
2.  You'll also need a decibel meter.
3.  Sit about 5 feet away from your speakers (make a set-up you can repeat everyday).  The study was done with speakers, not headphones.
4.  Play your recording and turn the volume up to the point you start to feel discomfort.
5.  Note the decibel level (e.g. 60 dB).
6.  Lower the volume 20 dB (your meter would now read 40db for example).
7.  Listen for 30 minutes everyday while doing another task while sitting there (reading, writing, etc.).
8.  If at anytime there is discomfort, lower the volume 5 dB's and stay there for a week.
9.  Each week you move in increments of 5 dBs.  Increase every 2 weeks, then decrease a week.  This is really well illustrated on my 3rd attachment.  They use numbers to represent jumps of 5 dBs.
10.  For the example I give (initial discomfort at 60 dB), this would be your protocol:
week 1: 40 db
week 2: 45 db
week 3: 50 db
week 4: 45 db
week 5: 50 db
week 6: 55 db
week 7: 50 db
week 8: 55 db
week 9: 60 db

You could keep going if your target LDL hasn't been met at that point.

I'm actually moving every 5 days instead of every week (along with wearing my WNGs all day).

I'm planning on following this protocol for another month or so and then get my LDL's tested again.  I'll post my results. 

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saab1216

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Reply with quote  #2 
Excellent! I listen to ocean sounds constantly! I use just water sound with no other sounds mixed in ie  birds,music,thunder etc. Sudden sounds can be distressing to the early hyperacusis stages.
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LizH

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Reply with quote  #3 
David,

Thank you for posting the article and for your very clear summary. 

I have a question for anyone trying to follow this protocol or any other, which none of the protocols seem to address.  It is this: 

 What sort of sound environment does one allow oneself to be exposed to for the rest of the day? 
 
Isn't it important not to undo whatever benefit one gets from the 30 minute controlled sound from the protocol?

I notice that you said you wear your wng's for the rest of the day, but what sort of external noise are you exposed to?  Do you ever protect yourself from sounds which you know to be above your LDL perhaps with earplugs or perhaps simply by avoiding the situation altogether?

Thanks, Liz.
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Ed

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Posts: 110
Reply with quote  #4 
Quote:
Originally Posted by LizH
David,

Thank you for posting the article and for your very clear summary. 

I have a question for anyone trying to follow this protocol or any other, which none of the protocols seem to address.  It is this: 

 What sort of sound environment does one allow oneself to be exposed to for the rest of the day? 
 
Isn't it important not to undo whatever benefit one gets from the 30 minute controlled sound from the protocol?

I notice that you said you wear your wng's for the rest of the day, but what sort of external noise are you exposed to?  Do you ever protect yourself from sounds which you know to be above your LDL perhaps with earplugs or perhaps simply by avoiding the situation altogether?

Thanks, Liz.


Yup, this was exactly what I was thinking, I think they missed out a very important aspect in this respect. Although, I imagine people just went about their everyday routines, which would differ hugely for the 'mild' H suffers to the 'severe' H suffers...

But, this article was very interesting; I think I will give it a go. Anyone know names of cheap but relatively effective decibel meter's? Thanks.
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aQuieterBreeze

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Reply with quote  #5 
Hi David,

Thanks for the information, and for posting this - though I have not had time to read it carefully yet - 'Listening' to the nature CD I have (or to phrase it  more accurately, for the most part - leaving it on in the background- for gentle sound enrichment) 
has been very helpful for me. I think listening to or having sounds such as that playing in the background  - sound that is tolerable and hopefully pleasing and soothing, that can easily be tuned out -
can be very helpful ......to have on in the background for sound enrichment.
Though I never tried raising the volume in the manner they suggest ....just leaving it on, for pleasing background sound.
(And overtime i'm sure that the volume i usually have it  on, is higher than when i started...)

Something i find interesting - is that you mention they say - to remain at a constant distance from the sound..in the same spot -
And when i began listening to music after years of not being able to do so -
that is what i did - (without realizing how beneficial it may have been to do that)
I listened over external speakers - sitting in the same spot, at the same distance  from them, in  the same position (or very close to it)-  night after night....though i listened for longer than the 30 minutes at a time. (I started  with one album, at very low, and  barely audible volume - though  i could hear it ---- and  worked up over time - to many hours of listening at a time.)
 And Actively listened as well. which is quite a bit different.
I've gone about things much differently than they mention - In several ways -

But I really think there is something to having the sound at the same distance away,  that is helpful.

In another thread,  Susan Gold mentioned -

"In my experience, a steady, stable, neutral sound that moves with you allows the brain to learn that the ears are "working" in the fastest, most direct way.  For hyperacusis patients, it is the most efficient way to see changes/improvements occur in a controlled way.  Controlled sound is important in a clinical treatment protocol for patients who are very sensitive to sound and allows us to make changes in the protocol, if necessary. That is why sound generators were always recommended for hyperacusis patients. When a patient is listening to a CD or other environmental sound, he/she is near it/away from it and the stimulus is constantly changing.

That being said, there is absolutely nothing magic in the sound from the sound generators.  In fact, as patients progress through the TRT protocol, it is important to add a low level of environmental sound to the use of the sound generators, day and night. Other neutral environmental sounds can be very beneficial, as you have seen. But, initially, the sound generators tend to be more convenient and less confining for the patient.
"

And In that same thread, Rob explained part of it this way -

"I think what Susan is suggesting is that an important advantage of the generators is the position of one's head relative to the sound does not change. "


I notice and noticed changes when I sit and listen,
I actively listen to music - while sitting in my living room, and
it's different, in the way it sounds if I move off to the side, lean back, OR lay down.
The furniture in the room and draperies also have an effect - dampening the sound if the curtain is closed, and  also, I don't sit  in a direct line with the speakers.
And shifting other furniture in the room, slightly does make a difference - as there is a chair in between where i sit and one of the speakers.
And the position of that chair, (or my position in relation to it ) - makes the sound coming from the speaker - sound different.  Slightly dampening the sound, if it's in one position - and not doing so in another.

The way i have gone about things is different than the protocol you mention,
but i think one of the very impotent points, and one that I think is similar -
is to remain in the same area / position - in relation to the sound.

These days many times i also leave music playing during the day for background sound -- but that is different than  when i sit and actively listen.
But either way, it is a joy to be able to listen to music again :-)
and wonderful to be able to tolerate more in the way of sound, all the time.
Though I still have a long way to go.

Thanks again for posting this, I remember reading about it awhile ago.
By the way - even just thinking of the waterfalls in Glacier National Park is a reason to smile,
Where did you find a Cd with the sounds of them?

Hi Liz,

You mentioned-
What sort of sound environment does one allow oneself to be exposed to for the rest of the day?
 
Isn't it important not to undo whatever benefit one gets from the 30 minute controlled sound from the protocol?


Very interesting point.
Also in my view - the way they define severe hyperacusis - seems like it may be lacking something.
And that is there is no category or explanation for/ or mention  if they had anyone enrolled in the study that had hyperacusis and was prone to setbacks that last for more than a day.

For someone with  severe hyperacusis, (or the designation that would be a class 4 if one was undergoing TRT) I doubt that 'listening' in the manner described, would offer the success rate that is shown, if other methods of desensitization were not also used.

Hi Ed,

I don't have a sound meter - but I've heard that Radio Shack sells them.
From what i understand, while they can have some benefits at times it's can also be important not to get too hung up on using one.
Though if one was going to try the protocol mentioned, perhaps it would be helpful?
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LizH

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Posts: 429
Reply with quote  #6 
Thanks AQB for the quote from Susan Gold.  That is exactly the argument that made me decide to get sound generators.  BUT I am still uncertain about what I should be doing re external sound while wearing them. 

 I don't know exactly what volume David has his s/g's set on, but just suppose for the sake of argument that they are set at 10db.  Then if there is an external sound at any time while he is wearing them of 60db (eg someone talks to him in a normal voice) then the total is 70db at that moment which is 10db OVER his ldl of 60db and presumably he is in discomfort or pain.  Is this going to cause a setback, ie undo the benefit of his 30 minute exposure to say the 40db sound in week 1?  Is it going to halt his progress?

For me I spend most of my days now by myself outside doing garden work where except for the sounds of passing trucks and motorbikes, I am in a fairly comfortable natural sound environment.  The 2 'disaster' times of the day are first thing in the morning before my hubby leaves for the office and again in the evening when he comes home.  This is so embarassing because I love him dearly, and I can't bring myself to ask him to tiptoe around the house, not talk to me so I don't have to talk to him, etc etc..... so I just endure the discomfort.  Thankfully it's winter now and when he gets up he puts on soft soled slippers instead of sandals so I don't get my first punch-in-the-head of the day when he steps off the rug onto the timber floor, but then there's the kitchen, still a minefield for me.  The sounds of his moving around the house doing normal things is enough to also cause my T to react by getting louder for about an hour or so in the mornings and again in the evenings till I go to bed.  I've thought about resorting to earplugs while he's around, but am reluctant to do this for fear of over protecting apart from the fact that I hate the feel of them.  I only use them for washing the dishes.  After nearly 3 years I'm so tired of things in my ears.

Does anyone else spend their days like this and how do they cope?  I don't think the sound generators are doing much for me now.
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LizH

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Posts: 429
Reply with quote  #7 
Another question for anybody and everybody?  Dr J, Dr Nagler, Susan Gold?

Does anybody else experience the discomfort of H as a feeling of a physical blow on their eardrum which radiates through their head?

I am asking this because sometimes I have doubts about the nature of what I am experiencing.  This symptom of mine certainly seems to fit within that frustratingly broad definition of H as being a decreased tolerance of sound, but sometimes I wonder whether this sensation is really a temporary but very strong burst of aural fullness, and is perhaps some aspect of the dreaded TTTS.  The ENT who first gave me a diagnosis of H did not discuss it at all with me.  He arrived at that conclusion from my description of my symptoms.  He did not do an ldl test, only an audiogram which he declared 'excellent'.

I've noticed that some people seem to have H but not TTTS although the definitions and diagnoses always seem to be infuriatingly vague and there are always variations from person to person.  At the bottom line I am wondering whether sound therapy is the way to go for TTTS.  I noticed that in the Klochoff paper the recommended treatment is diazepams, reassurance and relaxation.  I've tried all of these but nothing much has changed for a long time now.
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david

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Posts: 24
Reply with quote  #8 
Hi Liz-- I will address your question more fully on Monday, but in short, decibels are measured on a logrithmic scale, so yo don't simply add them. I don't have the equation in front of me, but 60 db plus 10 db probably equals about 61 db. More later!
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LizH

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Reply with quote  #9 
David, yes, you're right, I'd forgotten that, but in principle, the total still increases till it exceeds you're ldl.  Be that as it may, I'd really like to know what a person following this protocol is supposed to do about his/her sound environment for the remaining 23.5 hours of the day in order to improve.

Liz.
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Marilyn

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Posts: 194
Reply with quote  #10 
Liz,
I've gone through similar circumstances as you.  At the time my LDL's were so low, it was very hard to sit and drink morning coffee and visit with my husband.

My family takes off their shoes now when they enter the house.  When my little grandsons come to visit, my daughter has them take off their shoes as well.  No more little feet cloppity clopping through the house.  There's an added benefit to the quiet feet; a clean house!  I'm amazed how much dirt was tracked in before. 

Could you talk to your husband about some of these problems you have?  It sounds like you have a great husband and I do too.  Sometimes my family members forget and I've reminded my family they purposefully wouldn't step on my mother-in-law's toes, who has rheumatoid arthritis.  Yes, I get cranky at times!

I had lots of problems with my right tensor tympani muscle.  The ear pain felt like an ice pick, with numbness.  It felt as though I'd been slapped on the side of my head.  I've worked on relaxing and deep breathing.  My tensor tympani pain is about 95% better now.

As for increasing the sound level at my house, I did it with music. 


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Debbie

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Reply with quote  #11 

Hi Liz, 

I am familiar to a blow-to-head feeling with louder sounds. In the first months after onset in fact the entire right side of my head felt continuously as if it had been bashed in, even more so with (and especially after) certain loudnesses, frequencies and durations of sounds, and I felt that I was walking around with a concussion to that side of my head.
I've mentioned here before some of the other local sensations such as intense swelling sensations within my middle ear, as if things were literally swollen shut, a complete inability to have any clearing movement in my middle ear with the valsalva, and temperature conduction from the right eustacian tube/throat area all the way to the ear-end of the right middle ear space, so that drunk liquids felt as if they were pouring from my throat out through a hole in my head where my ear should be. 
My ear felt so swollen and huge and in fact growing like a big, fat lip, I physically felt as if when I looked in the mirror, I should see an extra appendage hanging out of my ear, like one of Bullwinkle's horns or antlers sticking up out of it.
In public I would catch myself feeling self-conscious that others could see the mass hanging out of my ear as if I literally was swollen and beat-up.
I have come to feel that the sensations I was experiencing were truly, and not just misleadingly, expressions of inflammation, and that changes in the threshold for protective muscle-tightening of middle ear muscles also generalized to certain muscles of the neck and upper torso.

I have come to more firmly believe that the body can percieve extreme over-exposure to sound as a vital threat and at the far end of the continuum
can respond at the reflex/brainstem (pre-cognitive) level by attempting to draw the torso into contraction such as is accomplished in the protective, the fetal position.

In other words, I think that the larger chain of muscle contrations as seen in the fetal position may be the extreme end of the continuum of the cascade of protective, involuntary muscle contracture that can occur in and around the middle ear.

I have come to feel more certain that anti-inflammatory measures are probably helpful to reduce the cycle of pain/spasm/pain as an expression of the cascade of alarm messages within the nervous system, and that nerve-calming agents such as GABA may help to modify the inflammatory responses at the beginning of the cycle.

I believe there are reasons to clinically study natural and preventative versions of anti-inflammatory measures such as eating foods known to trigger less systemic inflammation and/or to help curb inflammation, as well as anti-inflammatory herbs as tolerated, and natural forms of GABA for use with the hyper-sensitized auditory nervous system. 
 
I believe these measures, especially the anti-inflammatories in terms of longer-term maintainance, have been instrumental to my getting out of pain and experiencing fewer and shorter bouts of middle ear and related body muscle tightness and involuntary, alarm-like sensations after over-exposures to sounds.

Again I personally feel there is rationale for concerted study of these interventions for certain ear symptoms.
I would not recommend anyone implement these measures without an understanding of their rationale for the particular symptoms at hand and a willingness to carefully observe the effects of these measures.
Ideally, someone would bring these ideas to a health care practitioner licensed or certified to work with nutritional interventions and medications.

I would be curious as to your take on these thoughts.

Sincerely,

Debbie


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aQuieterBreeze

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Reply with quote  #12 
Hi Liz,

You mentioned -
Thanks AQB for the quote from Susan Gold.  That is exactly the argument that made me decide to get sound generators.  BUT I am still uncertain about what I should be doing re external sound while wearing them.

 I don't know exactly what volume David has his s/g's set on, but just suppose for the sake of argument that they are set at 10db.  Then if there is an external sound at any time while he is wearing them of 60db (eg someone talks to him in a normal voice) then the total is 70db at that moment which is 10db OVER his ldl of 60db and presumably he is in discomfort or pain.  Is this going to cause a setback, ie undo the benefit of his 30 minute exposure to say the 40db sound in week 1?

 
I don't know much about the wearable sound generators, but I think if the sound one is around seems a touch too loud, but not really LOUD  - like you mention someone talking -maybe  to ask them to please speak more quietly, or  take a step back  if it was too difficult (or ask the other person to please do so)----likely as one would do if they were not wearing the sound generators in my view, may be appropriate - though that is just a guess as i don't know much about them, and have never tried them.  The other thing one could probably do is to turn the volume on the generators down a bit - though i do not  know how they are supposed to be set, or when it is appropriate to change the settings.
Others around here know much more about that than i do.
(And if i remember right you have mentioned that you are still unsure of how yours should be set, though please correct me if I am wrong.)

Also, I think they may be set differently for someone with tinnitus.......than for hyperacusis.  Though I imagine it depends on the individual, and what their challenges are - as to  how they should be set.

I don't have the wearable generators but
I do know when I listen to music, at times - or the TV - other sound added to it, can cause me to turn it down. As the additional sound adds to the overall levels and can make the overall level seem too loud. Leaving sound on for background sound is  usually a little different though, Though sometimes I do wind up turning the background sound down.

You wondered about setbacks -
.....Is this going to cause a setback, ie undo the benefit of his 30 minute exposure to say the 40db sound in week 1?

  In my view, even if someone has a setback, at least for hyperacusis - the sound therapy they have been doing - IF it is appropriate and tolerable for them - I believe - is not really 'undone' - I think  the sound and/or  desensitization therapy - that one has done, (if appropriate for the individual, and used or done in an appropriate manner ) may help setbacks becomes less likely and not last as long.. I've had alot of setbacks,
but they get fewer and further between, as I am able to tolerate more in the way of sound in general. When i have a setback it's easy to think how fast things can change, from doing relatively well......to having sound be So difficult again....
But using sound in ways i have found to be helpful, is what I really believe has gotten me as far as I have - so far
So during a setback I don't really look at it that progress is lost,  --
(though I may view it as a step back, but that's different - in my view.
As I have had many steps forward, and many steps back - but generally and overall what i am able to tolerate in the way of sound keeps improving. )
For me, sometimes I view it more in terms of -
it took more to cause the setback  than it likely would have in the past.
Or maybe - Thankfully it's not AS difficult as it would likely be otherwise, or maybe won't last as long, as if I had not been working on improving my tolerances in ways that are helpful for me to do so.

My last difficult setback lasted a long time, it was caused by very loud sound
Had I not improved to the degree  I had before it happened, (and I was doing pretty well)  -  I think it  probably would have lasted even longer and been more difficult. Likely A Lot more difficult, even though it was difficult to begin with.
As it was i was, grateful that it was early spring, and not a few weeks later  .....as i know that some times of year (such as now- in the area where I live)  the Loud sounds that are prevalent and pervasive outdoors  are more difficult for me, even when I am not coping with a setback.
Thankfully, so far - it is more tolerable this year than last though....though it can still be difficult.....
And I have noticed that each year, since I started using sound in ways i have found to be helpful.....things overall, get a bit easier/more tollerable  soundwise. And I am able to tolerate a lot more than in the past -  Though I still have a long way to go.

Not too long, though perhaps several months - after I started listening to music again, I would notice if I skipped days -
sound would start being a little more difficult again.....
it was like the improvement I noticed was being lost/slipping away......
so I tend to look at it from that perspective instead.
From the perspective that  whatever I can do to help build up my tolerances to sound , in ways that are appropriate and right for me - will be helpful.

For me it is not Just about being able to tolerate more in the way of sound, or to be able to enjoy going out to a restaurant, or perhaps  to a concert in the future,
or even to go visit a waterfall (which is something that at one time time was on my list of things i'd probably never be able to do again, as i figured it would be impossible for me to be able to tolerate the sound of one)
For me part of it it is to rebuild my tolerances to a point where setbacks are much less likely to occur - and if they do, hopefully they will not be as difficult, or long lasting  as some I have had in the past.

But that is just the way I view it, and I spent a long time not knowing what would be helpful, and seemingly having the same things causing setbacks over and over,  and though the way i go about things may not be what is right for others,  working with sound in ways I have found to be helpful has been very helpful for me.
 And during setbacks I do take it easy soundwise.

You mentioned (about using earplugs)

I only use them for washing the dishes.

Do you use a dishwasher?
If so - have you thought of going to a different room  further from the sound,  while it is running?  And closing the door if necessary?

In the other thread, which is one of Laurene's, and  where I found the quote from Susan Gold,

Rob also mentioned the following, in reply to something I had asked -

You asked if I thought something other than broadband noise could also be effective, such as a nature CD.  Yes, I do.  In TRT, as well as in my own approach, tabletop devices, environmental sound CDs, and other neutral sound sources are a useful adjunct to broadband noise therapy.  I am sure that, provided the CD or tabletop device sound covered a wide enough frequency range, it would be useful in its own right.
 
I agree with Susan that there is nothing inherently superior to broadband noise.  One advantage of it, as the name implies, is that it covers a wide range (a broad band) of frequencies.  Another advantage is that the sound does not vary, which can be very important because some hyperacusics initially have a great deal of difficulty tolerating sounds with varying dynamics.  By its nature, broadband noise has no dynamics.



Liz you mentioned-
For me I spend most of my days now by myself outside doing garden work where except for the sounds of passing trucks and motorbikes, I am in a fairly comfortable natural sound environment.

And I wonder - did you ever find any more cd players, that you could place in different rooms in your home? So you could have some nature/natural sounds, that you find tolerable and pleasing - played at levels that are tollerable (to you) for background sound/sound enrichment  - inside.....since you apparently find the natural sounds outdoors allright.
I think you mentioned using something like a nature CD at night for sleeping? Maybe something like that, to be able to have on during the day -  would be helpful?
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aQuieterBreeze

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Reply with quote  #13 
Also Liz,

You mention -
For me I spend most of my days now by myself outside doing garden work ....

Do you talk to others through out the day? Voices can be difficult for one with these challenges to to tolerate, and if we are not exposed to voices or vocals of some sort - in a manner we are able to tolerate ..... (and gradually build from there)
I think like other things in the way of sound - they could remain more difficult --
Listening to music that has instruments and instrumentals and vocal ranges that have been difficult for me - as i am able to tolerate them, though some are still too difficult - has had the effect of making other things in the way of sound  more tolerable.

I understand that you have a difficult time with music, because of your pustule tinnitus - but have you thought of trying books on CD or  tape? Or do you watch TV -- something to be able to get better used to / reacclimate to voices?
I just wonder if maybe some controlled exposure, where you can control the volume - among other things,  to speaking voices may be helpful?
And maybe over time you will be able to tolerate other voices better too?
Just a thought.

Hi Debbie,

you mentioned -
I have come to more firmly believe that the body can percieve extreme over-exposure to sound as a vital threat

I believe that would very understandably fall under the category of  phonophobia..
And for someone with these challenges, especially that has had a very difficult time with them - not to experience some degree of phonophobia or misophonia  - I think would be rare.
And to learn how to - and to be able to, relax more around sound
 (and not view it as so much of a threat)- is important.

you also mentioned -
anti-inflammatory measures such as eating foods known to trigger less systemic inflammation and/or to help curb inflammation, ......

I think that could be helpful for many things, not just these challenges -
I also believe what we eat can affect us in many ways. And some foods may cause increased agitation or stress, and other foods may be more calming overall.
If one is having problems with stress from sound, or even from other things - perhaps paying a little more attention to how they Feel, from the foods  they eat - may be helpful? Maybe slightly altering ones diet - would help one be able to cope with stress better?
I think that is possible. I think there is link between what we eat, and how we feel.

Though with these challenges, there are few foods that i have found that really seem to be helpful for my ears. But for me one seems to be olive oil, drizzled on toast or other things, like pasta or salad.
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LizH

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Posts: 429
Reply with quote  #14 
Thanks Marilyn, Debbie and AQB,

Marilyn, you seem to be one of those who, like me, has a family under the same roof - in my case it's only my hubby and I as we are empty nesters living in our little 'house on the prairie'  (actually the prairie is now covered by trees!).  I feel so miserable about always having to remind him to quieten down a bit when he comes home and just wants to pour out the events of the day as we eat dinner.   He has needs too and he instantly apologizes if he drops his keys or something like that so often I simply sit and endure the sound discomfort.

This is inspite of my leaving the kitchen radio switched on to a chat program so that when I come into the house I hear the sound of voices softly from other rooms and then getting louder as I approach the kitchen.  I started doing this to try to prepare myself in advance and I think it is better than walking in to a silent house and then switching it on even though I feel bad about the bigger carbon footprint caused by having it on even when I'm outside.

AQB, that was my compromise rather than buying extra cd players for different rooms but I still use a radio tuned between stations next to the bed while I sleep.  And you asked about the dishwasher:  we don't have an automatic dishwasher for just 2 of us but the earplugs work well when it's my turn to wash up.   I often take steps backwards when I am in a situation where that is possible, but at the table it is somewhat more difficult.

Probably you're right about the effect of not talking to others during the day when outside, but I can't think of a solution to that one.  Sometimes my own voice is as much of a problem as that of others and it makes my ears pop and crackle.  Ugh!  I do watch TV sometimes and perhaps the talking book thing is a good idea.  Thanks for that tip.

Debbie I haven't tried GABA but I was once prescribed a steroidal anti-inflammatory.  It didn't seem to make any difference.  I admit though that I don't feel as bad as you did, just a big throb that goes through my whole brain and a clogged up feeling in my ear for a while, although in conversation it's punch, punch, punch continuously.  Perhaps I should stop complaining.  AQB, funny that you should mention olive oil as an ant-inflammatory - that's what we grow on our farm!  And that's what we eat and cook with.  Perhaps I'd be worse if we didn't, but who knows?  It's an idea I don't want to test.
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aQuieterBreeze

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Reply with quote  #15 
Hi Liz,

With a book on tape or cd, keep in mind not only the subject or title - for hopefully something you will like-
but the person it will be read by. I am not that familuar with audio books, as i have never tried listening to one, but  I know that some are, and some are not, read by the authors. And some voices may be easier to listen to and tolerate, than others.
Some libraries may have them available too. And someone around here, if I remember right - mentioned using audio books on their computer, Perhaps they were using books on cd, though I am not sure?    There are apparently variious audio settings that one can use for that and from what i read some settings available may offer better sound quality, for a speaking voice -  than other settings. And if one downloads audio books to their computer, verses using a cd - I think some files and file formats may be of higher quality sound, than others.

About cd players -
maybe with a cd player, you could find one that is portable? (Like a high quality "boom box", with a plug-in adaptor. ) Or maybe something like a mini or bookshelf  stereo system--to put in one room, near where you spend the most time?  Or even a high quality combination  cd./clock radio?
Just some thoughts, as i know how beneficial it has been in my case- to be able to use a cd player. (though in my case being able to adjust the setting for the bass  - has also been important. And the option to be able to adjust the settings for bass and treble is somthing I think can be helpful,  if available.)
But then static between radio stations is something i would not be able to listen to...we are all different. in what we are able to tolerate, and if that works well for you - that's great. Thoough I thhink a cd, or tape player, or even a turntable, would offer more options as well.

You mentioned-
I often take steps backwards when I am in a situation where that is possible, but at the table it is somewhat more difficult.

Are your ears both equally sensitive to sound, or is  one ear more sensitive than the other?  If one is noticeably more sensitive -maybe sitting in a slightly different location, or position  at the table would help?

and You also mentioned-
funny that you should mention olive oil as an ant-inflammatory - that's what we grow on our farm!  And that's what we eat and cook with.  Perhaps I'd be worse if we didn't, but who knows?  It's an idea I don't want to test.

Funny what you say about olive oil - I was not suggesting it as an anti- inflammatory--though it may have anti inflammation properties, but i don't know, and had not really thought of it that way....
just that it seems to have a slight beneficial effect on my ears, at times.
I think it is the oil itself - providing something in the form of beneficial fats/  fatty acids - in a form the body can use - when the oil is used appropriately, as a "food". (such as drizzled on toast)
And I cook with it too - and store it in the fridge :-)
But you grow olive trees :-)
Are you able to use oil that is made from the olives you grow?
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LizH

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Reply with quote  #16 
aQB,

Yes, we do use our own olive oil so we know exactly where it came from!  A word of advice though:  there's no need to keep it in the fridge as a dark cupboard (ie not one with a glass door) will do unless of course you buy it in a can which would be lightproof.  You only need to protect it from uv light.  Also it should never be frozen as this causes it to separate into its various components and it cannot be properly mixed again.  The flavour is changed by freezing.  Putting glass marbles in the container to keep the level high and limit the air exposure is also useful to extend the shelf life.
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Debbie

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Reply with quote  #17 

aQuieterBreeze said..

Hi Debbie,

you mentioned -
I have come to more firmly believe that the body can percieve extreme over-exposure to sound as a vital threat

I believe that would very understandably fall under the category of  phonophobia..
And for someone with these challenges, especially that has had a very difficult time with them - not to experience some degree of phonophobia or misophonia  - I think would be rare.
And to learn how to - and to be able to, relax more around sound
 (and not view it as so much of a threat)- is important.


Hi aQB,

Do I understand you to mean...that after the awareness hits us about the possibility of the sounds being too much we might contract our muscles, whether or not the sounds really are or would have been too much for our systems. ?

My take is a little different from that, actually quite different from that, in the fact that I am not assuming that the message need even to travel to the cognitive levels of the brain before the response occurs.
I do not think this particular muscle contraction cascade response is initiated by cognition but instead, believe that it is more likely initiated at the level of the spinal cord or brain stem before the 'mind' even has a chance to interpret the data.

I would not call this response phonophobia because I think a phonophobic response must be mediated by the limbic-autonomic axis in the higher brain.


The muscular contraction response I'm talking about I believe may be occurring when
the sounds really are too much for the nerves of the middle (not necessarily the inner - where hearing occurs) ear permanently or during a specific window of time when an inflammatory process and/or muscle contraction cycle in the middle ear is already more active due to recent exposure.


I know that in the past you have expressed discomfort with some of this line of thinking on possible physical effects on the ear; Please stop reading here if you wish to skip my opinion on what I think the physical consequence for ignoring this cue would be.





I believe this reflex probably occurs in relation to an actual physical situation where for at least at the point in time, the middle ear is actually not prepared to work optimally to receive the stimulation being asked of it.

Further, my guess is that if the body is asked to endure the sounds or other stimulation it is responding to this way, there would be a real risk of further nerve irritation/inflammation in the middle ear.
This leading to increasingly lower thresholds to the initiation of this vicious physical cycle, and a chance of actual lasting damage to the abilities of the muscles and other tissues that are controlled by these nerves to behave functionally.

Even though the site of problems may not be the cochlea and may not therefore be reflected in hearing loss,
it might be reflected in a more permanently disabled functions within the middle ear, leading to greater physical discomforts at even lower thresholds and greater suseptability to further damage.

Debbie




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david

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Reply with quote  #18 
Hi:  I ordered my nature sounds from iTunes.  The albums are in the Ambient Nature Sounds series. 

Liz:  my advice for the other 23.5 hours is to have a plan and stick with it.  This protocol is a good way to do that.  I've had 2 major setbacks over the last year, but have learned from them and am really doing well now.  Some things I did when I couldn't even wear the WNGs:
volunteer at a library, volunteer to tutor students (1 on 1), piano lessons (started with a digital keyboard on the lowest setting), a book club with 1 or two friends, french lessons.

I tried to tier my experiences---I wrote down the hierarchy of sound activities from easiest to most difficult and started working my way up slowly and deliberately.  You can do this---you already are on your way up starting with gardening!

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Debbie

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Reply with quote  #19 

Follow up to reply above to aQB

PS on this board I think when we talk about "ear damage" or "damage to our hearing" we generally have implied that we are talking about cochlear damage, resulting in hearing loss.

My point is that "hearing loss" is not the only functional loss within the auditory system (besides hyperacusis in terms of increased auditory gain) which can cause us significant, as in life-altering, physical problems and discomforts.

Loss of smooth function within the eustacian tube, circulatory system,
and other functions within the middle ear can cause great physical discomforts and limitations
which can exist in additon to any inner ear challenges or alone.

Noise, pathogenic, chemical, hormonal and perhaps other impacts that resulted in hyperacusis for many of us probably are multifaceted and have affected various parts of our auditory systems, creating a feedback loop between lowered thresholds for stress within various parts of the actual ear and the brain.

I believe I am, and others are, living proof that improvements can be made on both fronts...especially with therapies keyed for the recovery of tissues (anti-inflammation nutrients for just one) as well as easing of nerve excitability.
And there may be much more latitude for improvement than I am and others are currently taking advantage of.

When we are talking about middle ear symptoms we are talking at least in part about soft tissues including nerve tissues.
We are talking not just about the central nervous system where auditory gain is modulated but about the peripheral nervous system and the soft tissues it innervates.
These areas have not been sufficiently studied; little financial incentive is in place for studies to be done. However this does not mean, IMO, that such studies could not enlighten the medical fields and provide insights into ear functioning that helps people far outside the scope of our community who are experiencing troubles to the auditory system.

Debbie


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LizH

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Reply with quote  #20 
Thanks David, that IS very helpful.  Did you make any special effort to avoid situations that you knew would be way too high up on the list eg going shopping (I really dislike supermarkets with their PA systems, barcode scanners and general noise) or socializing, or just take extra precautions eg using earplugs?  Is your progress as fast as the Spanish protocol suggests it could be?  Perhaps I'm just too impatient.

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david

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Reply with quote  #21 
Definitely took and still take precautions. I avoided places I thought were too loud. But I started gradually going up. Like I'd eat for 10 minutes in the cafeteria at work and then finish my meal outside. Each day I'd stay a minute or two longer. I have musicians ear plugs and will still wear those in very loud places.
I'm hopeful the protocol will work--I am curious too if any of the clinicians that read this site have any plans to replicate their study and corroborate the results.
I'll post my end LDLs in a few weeks.
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LizH

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Reply with quote  #22 
Thanks David,  that is also helpful to know. 

There seems to be a huge range of lifestyles among those with H from those who say they never missed a day of work and seemingly carried on more or less as usual, to those who apparently spend almost all day at home in a controlled environment.  I hope the study is replicated independently and that there will be more attention paid to how one spends the remainder of the day.
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aQuieterBreeze

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Reply with quote  #23 
Debbie,

There are some other replies, i have fallen behind on - and some other things I wish to do, though I will try to reply to what you have mentioned....
 
You mentioned-

I have come to more firmly believe that the body can percieve extreme over-exposure to sound as a vital threat and at the far end of the continuum
can respond at the reflex/brainstem (pre-cognitive) level by attempting to draw the torso into contraction such as is accomplished in the protective, the fetal position.


You also  mentioned in another thread that at least some of what you have experienced, with sound relates very closely to a very  traumatic  experience you had in the past.

When i read what you had written, I was stunned, and  I left you a note in another thread, that I hoped you would see. And What you say here, in combination with what you had mentioned  before - makes me wonder .....
Do you think there is a chance that what you are describing,  about the body attempting to curl up in a fetal position - may be linked to that For You?
(I think it's very natural to relate what we experience, with these challenges or anything in life  - to something we have experienced in the past, but that does not necessarily mean others experience it in the same manner. Though understanding that we may do that at times can be important.)
And I ask in part because I have never had the urge to curl up in a fetal position from sound.

Cover my ears - yes. Use muffs - yes.
Run - yes. Hide from it (when the sound is ongoing, and too difficult) - yes.
Bury my head under my pillow, and covers, to try to dampen the sound- yes.
Cry yes -(especially after getting a setback, when it is all even more difficult again,
And also at times when the sound is pervasive and ongoing and too difficult for me to tolerate,  making my hearing/ears more sensitive with little or no respite from the noise.)
But curl up in a fetal position? - NO.

The way i understand it -  perceiving sound as a "vital threat" is part of phonophobia.
(Many with these challenges perceive sound that is not really a threat as one anyway - and that mind set can be hard to get past. Though what one is able to tolerate in the way of sound does vary.)

If I understand right "phonophobia " literally means "fear of sound."
And though I think one can be phonophobic (or not) of sound that IS too difficult (sound above ones tolerance levels) as well as LOUD sound. Sound that anyone would consider loud -
I also do Not think it is a reaction or condition Only linked to, or experienced with sound that is at a level that is actually below what one IS able to tolerate.

To understand what to do in certain situations is important.
 I think to have a healthy respect for sound,( especially LOUD sound) and to realize how sound of all levels affects us on an individual basis, is important .....
But that is different than being fearful or phobic of it.

And the way sound  affects us - can change, and  I think that is also important for one with these challenges to realize.

you asked-

Do I understand you to mean...that after the awareness hits us about the possibility of the sounds being too much we might contract our muscles, whether or not the sounds really are or would have been too much for our systems. ?

That is not what I said. You read more into my reply than what I did say. And you did not take my reply the way it was intended. By doing that you misconstrue what I did say.

You had previously mentioned -

I have come to more firmly believe that the body can percieve extreme over-exposure to sound as a vital threat....

and I replied -

I believe that would very understandably fall under the category of  phonophobia..
And for someone with these challenges, especially that has had a very difficult time with them - not to experience some degree of phonophobia or misophonia  - I think would be rare.
And to learn how to - and to be able to, relax more around sound
 (and not view it as so much of a threat)- is important.


But stress can have many effects on our systems and I belive some may experience it differently. And to different degrees.
So some may contract their muscles - that could be a possibility.
(and stress can begin at a subconscious level and continue while we are aware of it,)

you mention-

My take is a little different from that, actually quite different from that, in the fact that I am not assuming that the message need even to travel to the cognitive levels of the brain before the response occurs.

It can happen as an automatic response to something perceived as a threat.
Noticing when it does happen and understanding what is going on, can be helpful.
I think  our responses /reactions can begin before we are aware of them,
though perhaps escalate, or maybe even de-escalate after we are aware of them -
depending on our reaction to the stress, as well as what is causing it.
And i think it can help to diffuse the stress and our reaction to it and to the sound causing it , if we are able to do that.

Understanding weather or not the sound we are around is too difficult to for us to tolerate,  Or weather it is "just stressful " in some way can also be extremely helpful.
As one recovers, from hyperacusis - what used to be too difficult to tolerate, in my view, at least in some cases, may become more tolerable but still provoke a stressful response. And that same sound at louder levels may still be too difficult...as one works their way into being able to tolerate more in the way of sound.
And it can go back and forth - such as during a setback - sound that become "only stressful" instead of stressful AND too difficult to tolerate /loud for someone)  - may at that point be too difficult again......
(though for someone with hyperacusis I don't think all sound that is too difficult for one to tolerate, provokes a strong stressful response,   but in my view generally some that is -probably does. And the magnitude of that response can vary greatly and can change. )

you mentioned -

I know that in the past you have expressed discomfort with some of this line of thinking on possible physical effects on the ear....

Though your concern is apprieciated.....
You are again misinterpreting / misunderstanding some of what i have said in the past, or alluding to things i have likley never expressed opinion about.

Not everyone gets long lasting setbacks, but I do. Though thankfully they are fewer and further between than in the past. And some of my setbacks disappear alot more quickly than i would have ever thought possible.

If sound is too difficult for me i will protect my hearing/ears  in ways that are appropriate  for me to do so. That I choose to do so in a different manner than using hearing protection if at all possible is my choice, It was a very conscious decision,
And it's one that has made a lot of difference for me,
in fact thinking of things differently in that respect was one of the turning points I have had with these challenges And a very positive one.

Though in my case it means I do things in a quieter manner OR a different manner when necessary, if at all possible,   - and "protect" my hearing/ears in that way instead.
As I keep working on being able to tolerate more in the way of sound.

I  belive that to "allow in" sound we Are able to tolerate is helpful...
and to push and test our boundaries in ways that are appropriate for us (on an individual basis) to do so is helpful as well. Though there are times to take it easy around sound - such as during a setback, (and that is not the time i push my limits)
If sound causes someone the severe amount of EMOTIONAL and corresponding physical  stress you mention - in my view - that is Not sound they are able to tolerate. (For whatever reason- be it hyperacusis or misoophona/phonophoba  or all of those things .. Or something else. )

I think that if someone (especially with hyperacusis)  is around sound that really is Too difficult for them to tolerate, they should either use hearing protection of some sort,  while they are in that situation - especially if there is no choice but to remain in that environment.
Or cover their ears and get some distance from the sound or leave. Or a combination of those strategies.

(And for someone who is severely misophonic or phonophobic with or without hyperacusis - i belive they need to take what ever measures are right for them to do so , around sound they perceive as too loud  .... though in my view they also need to realize what is going on and work in an appropriate manner to effectively deal with their challenges. ) Many who are misophonic or phonobhobic, seem to use hearing protection too much and that can make one even more sensitive to sound.

IF the sound one is around is "just stressful" in some way - to understand that can be helpful.....even if one decides to get some distance from it.

With these challenges, as one improves their tolerances to sound by desensitizing to sound in ways that are  appropriate for them  to do so , over all  sound that was "just stressful" I belive in many cases can become easier to tolerate.

Though if one is severely stressed by sound, and  uses medication to mitigate or "buffer" that stressful response, but does not do some sort of appropriate desensitization therapy - i wonder what would happen without the medication? Though I am Not suggesting that anyone on medication quit. But I think APPROPRIATE methods of defenestration to sound ( what is right for one on an individual basis) is something that is essential for hypoeracusis. And probably for phonophobia as well.

Some have mentioned that the beneficial effects of some medication they were using only lasted when the medication is being used .That the decreased tolerance to sound they notice, returns without it. And I wonder what happens if the medication wears off during a loud event?

As far as the physical effects you describe? I do not know that much about the physiology of the ear, or muscles involved -but  i think if someone is that uncomfortable around sound and their back and neck and other muscles tighten to that degree, (from sound or anticipation of it)  such as you describe above   - that  person in my view,  needs  to o figure out and understand why that occurs, and work on ways to desensitize to to sound  in ways that appropriate for them, ON an individual basis,  to do so.
That does not  mean to stand there and endure sound that causes  that much stress. (But in my view to  gradually work on de stressing to those sounds /desensitizing to sound,  in ways that are appropriate for one to do so.)  And if there is something that is "deep seated" emotionally that is causing those types of reactions, i think understanding  and dealing with the underlying problem/ situation, with an appropriate  therapist or counsellor could  be helpful.

But those are just my views - I'm not in the medical field.

For someone with Hyperacusis-
I think it is important that even if one  uses some other therapy,
(such as you keep mentioning) they also desensitize to sound in ways that are appropriate and right for them to do so.
And not rely solely on medication to mitigate or buffer the stressful effects they notice from sound.
(and i also think that those ways one uses to desensitize to sound,  can be different for different people)

Hyperacusis can be life altering .(and for many it truly is in many ways)  It can be confusing and also extremely difficult And it can get better and it can also get worse.
The choice to rebuild ones tolerances to sound, in ways that are truly appropriate for one to so, and tolerable for the individual  - in my view can make that  difference in MANY cases .

Had i been using sound in ways i have since found to be helpful, i may not have had as many setbacks as i have had in the past and they may not have been as difficult or as long lasting. And had i been using sound in ways i have since found to be helpful, I'd probably be doing much better than i am at thins point. Though I am very grateful and happy for the progress I have seen (actually heard).

You mentioned -

PS on this board I think when we talk about "ear damage" or "damage to our hearing" we generally have implied that we are talking about cochlear damage, resulting in hearing loss.

The way it is talked about can be confusing. Though I do not know enough about the physiology of the ear to comment on what you mention (in your post above)

To understand that sound does not need to be of a level or duration that would be necessary to cause hearing loss, to be too difficult for someone with hyperacusis to tolerate, is important. There are different ways of protecting our hearing/ears when it is necessary for us to do so - some involve the use of hearing protection, and some do not.

Though many times  it does not seem to be recommended to use hearing protection unless the sound one is around is of a certain db and duration - or would be considered loud by others   in my view that does not necessarily mean one should endure sound  that really is too difficult./Loud  for them.

Sometimes it can mean doing things in a slightly different manner, where any options exist - such as choosing a quieter restaurant, instead of a louder one .....

Though we are all different in what we Are able to tolerate .....
To use hearing protection less and Allow in sound that we ARE able to tolerate can be very helpful..

There are many things to understand about these challenges and I think understanding them can make a Lot of difference.

In my view with these challenges working on improving our tolerances to sound, in ways that are right for us on an individual basis -
goes hand in hand with using hearing protection less, and spending time in environments we ARE able to tolerate -
not overdoing it - not spending time in places that truly are too difficult
(especially if we have any choice in the matter) ......but gradually and appropriately pushing and testing our limits as we are able to do so, in ways that right and appropriate for us, on an individual basis - to do so.

But that is just my opinion, and I'm not in the medical field, and others know alot more about these challenges than i do.

By the way in another thread DrNagler defines misophonia and phonophobia like this -

 Misophonia is an aversive response to sound that is mediated through the limbic-autonomic axis.  That would include hate.  It would include fear (in which case it is called phonophobia).  It would include what is sometimes referred to as "4S."  In fact, any aversive response to sound that is mitigated through the limbic-autonomic axis falls under the umbrella of misophonia.
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Debbie

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Reply with quote  #24 

Hi Breeze,

 

I would like to reply more fully at a better time, first I would like to say that when I asked you if I understood your points, the question was literal, I was seeking clarification of your point.

I did not wait for that clarification before responding,

and simply spoke to what it seemed you had meant,

while inviting you to clarify if I missed your point.  

 

 

It seems to me, please again clarify if I have you wrong,

that you are saying that you assume that sensations of panic or hysteria, and muscular contraction must be directed by the "higher" brain, the cognitive brain which also houses the "autonomic limbic axis."

 

I am saying simply that I do not think this is necessarily so, that larvae dug from the ground curl into a protective ball based on primitive nerve feedback systems responsive to light and temperature

and that animals all the way up the levels of brain complexity retain this "simplest"/fastest nervous system response to mortal threat.

 

This "reptilian" system operates lower in the central nervous system than that of cognition (thinking) or the "autonomic-limbic axis" which depends on cognition.

The "reptilian" system works on feedback which can be sent right from the spinal cord or stem of the brain before the messages reach the thinking brain.

Messages sent from these "lower" brain regions are "reflexes."

 

I am saying that I suspect that the tighening muscles I'm talking about were reflexive responses directed by non-cognitive, non-limbic regions.

The chemicals triggered could lead to sensations of hysteria/panic that do not fundamentally relate with or emerge from "emotional association," "conditioning" "learning" etc. but instead are reflexive.

 

Not that to me the thinking mind is necessarily totally out of the picture:

I believe that the resourcefully harnessed cognitive mind can "observe" this response and from there potentially intercede to an extent...as in "talk oneself through" the experience even if not able to stop the sensation.

 

The same way, pardon this analogy, someone going through a "bad trip" due to a bad drug response can harness his/her own "other" brain functions and the support and guidance of calm friends while the drug is still in effect and become somewhat grounded within the experience even if still totally being besieged by drug-induced sensations and perceptions until the drug wears off.

 

The mind might be able to intercede to the extent of consciously thinking thoughts which in turn trigger some soothing chemicals to be released to intercede in this reflexive chemical cascade to some extent or another...

not to "cure" or "stop" the fundamental experience but to create an environment of safety within which the experience can be managed.

 

You said that you have cried and shielded your ears with bad hyperacusis but did not have the "urge" to curl into a fetal position. 

 

Perhaps the degree of what I would call the "reflex" to self-protect

is in direct relationship to the degree of perceived threat,

in turn in relation to what is phyically going on in the body that is making it intolerant to the sounds or other inputs.

Perhaps my body was responding to sound based on the status of it's physical ability to process the sounds, and your body was doing the same.  
 
I did not mean to imply the term "urge" in terms of "feeling an urge" to curl into the fetal position.
My "urge" was to straighten up as normal, to not have my neck muscles contracted tightly pulling towards my collar bone like a turtle and my pectoralis muscles scrunching my shoulders forwards and up towards my chin.
 
No matter the stresses of life, my neck and shoulders muscle tone has always been under my conscious control to relax.

Having the muscles involuntarily be contracted like that, in such a way as to be out of my control, was totally foriegn to me, as foriegn as the tensor tympani and stapedial tightness which I had never experienced before.

The tight muscle contraction sensations led to me feeling uncomfortable, cranky, not myself.....a state of distress which was instantaneously relieved when the muscles suddenly all released and lengthened again normally, a moment after the end of all my ear symptoms following a series of muscle movements in and around my middle ear.

I strongly believe that this contracture was a component of an involuntary chain of muscular responses some of which which I could see in the mirror such as with my tragus wiggling back and forth, not an action I have ever experienced, I have no control over this muscle as some do.  

My "urge" was not to curl into a fetal position
but instead to find a way get my ear normal so that my involuntary nervous system could in turn behave normally, or vice versa.
 
I strongly agree with you and some others here that emotional issues in life affect the body and vice versa.
Who knows what might "set us up" emotionally to be more resistant to or more vulnerable to one accident or illness or another, and have greater energy for immunity and healing.
Maybe it is helpful to look at what we experience as mataphores or even dream symbols which we can analyze for meaning and teachings.

That said, I don't think the effects of my auditory injury were any less phyiscal than those of a broken arm.

I made an analogy I think you were alluding to between the sensations of chaos and hysteria I mentioned having experienced while being thrown from a calm and happy day into the shock of a battle in which I had been physically attacked by a stranger.

I believe the sensations I experienced then, too, were mediated by "reptilian" level brain responses - not those of the "autonomic-limbic axis."

I applied discipline with the rest of my "mind" to modify these responses as well as I could even though under the influence of fight/flight chemicals,

by "associating" that this was the time not to follow the chaos of my lower-brain fight/flight resonse but to use self-defense skills that I had learned
in a self-defense class.

 

When the battle was over, and I had somehow prevailed though wounded and stained with blood that was not all my own..

and there was no more fighting to be done, I rested my "thinking mind" for a bit and screamed and cried sensing nothing but the immediate influence of "fight/flight" chemicals and the need to scream out sheer feelings of chaos.   

 

Had more than one assailant been involved, attacking me from all sides...and had all of my skills and abilities for my "mind" to stay present and useful been exhausted....

I think my physical response would been to lose my "mind" to my most primitive, "reptilian brain" which would have probably curled me into a fetal postion as a last means of defense. 

 
 

I think this would have been the result of the "primitive" brain level and not that of the "autonomic-limbic axis."

And although I could be wrong, I think strongly that with my ear, there was something going on that was outside the fundamental influence of the autonomic-limbic axis, and more a function of the pure need of my body to be in a more optimal physical state,

that was leading to these involuntary physical responses.

 

I do not think that my body's physical responses with my acute ear condition were due to an "association" with the memory of the physical attack by a stranger.

 

Rather, I think that my injured auditory system felt so amiss with sounds & even with the chaotic physcial sensations within my ear & head, as if I was being chaotically struck in the head, without end,

that it was as if I was being physically attacked.

But because it was so excruciatingly painful, and all day, often 24-7 for days, weeks, months - prolonged - and without diagnositic or prognosis markers 
such as which might have helped me optimize the leadership of my "thinking brain" to talk myself through it...

it was far worse than my experience of having been attacked by a stranger,

 

and more like the much more intense scenario of being attacked at once by multiple strangers.

 

As for many of us, it was the most terrifying period of my life.

 

 

The bottom line: I firmly do not believe the fundamental fuel of this experience lay within the autonomic-limbic axis, but instead within the ability of my auditory system to perfrom it's normal functions.

 

The input of the autonomic-axis in my mind to this scenario could be as transformative as it might be for a college student lost in a bad "drug trip" (into which his/her own working "mind" and the input of sane friends is able to penetrate to a degree.)

The input could keep the person, whilst still under the influence, from acting out of drug-induced craziness or from totally sinking into the worst lore of a "bad trip."

But the influence is chemically induced...in the case of the drug, by the drug, and in the case of the ear responses, by the body's physical responses to the indescribable pain and chaos caused by organic functioning gone awry.

 

 

As for "misophonia," for reasons I expressed in other posts, and which are supported by peer-reviewed scientific journal articles readily searchable within PubMed and Medline databases,

I also deeply question Jastreboff's assumption that the "autonomic-limbic axis" is fundamental to this condition.

I strongly suspect that while the autonomic-limbic axis can help manage the coping process with this condition, that the condition itself is a matter of functional change within the brain.

 

 

I am sharing my thinking on this because, like you, I care deeply about us managing our conditions to the best of our abilities, and also finding even easier times ahead.

 

 

I do feel that candid discussions can, at best, help us create a community of trust, agreeing or disagreeing yet being a community which stands up for one another, as well as potentially yielding ideas that might prove worthy of scientific research.

 

 

Debbie


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Jennifer

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Reply with quote  #25 

Hi Debbie,

You stated that, "Further, my guess is that if the body is asked to endure the sounds or other stimulation it is responding to this way, there would be a real risk of further nerve irritation/inflammation in the middle ear. This leading to increasingly lower thresholds to the initiation of this vicious physical cycle, and a chance of actual lasting damage to the abilities of the muscles and other tissues that are controlled by these nerves to behave functionally."

I completely agree with you. I was in this cycle. As my hyperacusis worsened, I became more vulnerable to re-injury. In the space of about four months, not only did my hyperacusis worsen greatly, my tinnitus became MUCH worse and so did the constant pain in my right ear. This isn't just muscle pain. I also have a burning pain, which I know is nerve pain because of all the experience I have with the nerve pain caused by my back problem. And my downward spiral was caused by normal, everyday sounds that wouldn't have hurt someone who didn't have hyperaucusis. I actually did not stablilize myself until I started wearing MORE ear protection. I had not been wearing enough ear protection because of the warnings I heard about getting worse from "overprotecting" one's ears. I think that if  I had adequately protected my ears right after my injury, I would be dealing with much less severe hyperacusis today. And I certainly would have less tinnitus and ear pain.

And with all due respect to Drs. Hazell and Jastreboff, I do not have misophonia or phonophopia. About the only sound I dislike is the sound of fingernails on a chalkboard. I avoid sounds I can't tolerate because they cause me real, physical pain.

Jennifer

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Johnloudb

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Reply with quote  #26 

Jennifer,

Sounds you're phobic to or have aversion to can cause physical pain, "real pain."  Some people get the idea that phobia are real just psychological. That's not at all true.

When ears get hurt they are just more reactive to other sounds and intollerant to loud sounds especially. Hurt ears need sound enrichment  (a pleasant sound you hear all the time), not silence. 

And wearing ear protection excessively just makes your ears more sensitive. I've been down that road and as I wore ear protection more to avoid sounds that hurt, my ears got more and more sensitive. 

Yes, when your ears are hurt you don't want to keep hurting them, but at the same time you don't want to retreat to silence. So, sound enrichment is very helpful. 

If all sounds, or all high frequency sounds, or complex sounds hurt your ears, you likely have had phonophobia. 

The primary treatments for pure hyperacusis are sound enrichment, wide band noise, and listening more to sounds you tolerate well. There are other things that help, out there too.

So, there are strategies for treating hyperacusis, but silence is not one them, in my opinion. Ears need sound.

Thanks very much for getting the hyperacusis foundation/research threat started. That's great that member "hyperacusisresearch" has put up that website and got the ball moving. I wish him the best of luck.

Best of Luck to you in treating your hyperacusis. 

John

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Debbie

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Reply with quote  #27 

PS  To finish my post above, I want to say that sure, phobias and aversions can develop through incomplete learning and conditioning - fear of all dogs after a dog bite, fear of eating chicken after food poisening, dislike of redheads after being taunted by one in junior high, extreme fear of flying due to risks of crashing but no fear of driving...dislike of a certain song or type of anything because of personal taste.

Had I developed negative emotions around men of similar appearance to my assailant, or to the sound of the computer which used to overwhelm my auditory system but now seems to be ok, that would be a phobic response and modification of this response could probably only help me live life to the fullest.


Fear and dislike of anything which presently causes pain without regard for baseline "like" or "dislike" for that stimulus is not a phobia, it is a reasonable response.


I agree 100% with the concept of sound therapy adjusted to the needs of each individual in terms of it's timing and form.
For example, I find nature sounds in terms of truly being in real nature to offer the properly adjusted mix of high and low sounds....birds chirping, frogs making frog noises, footsteps on a gravely trail.
Nature sounds to me feel stimulating to my auditory system and a necessary component of my healing process.
Some others here with hyperacusis seem report that  bird sounds etc. feel terrible for them.
(Unless I'm mistakenly thinking of some who have mentioned birds who do not have hyperacusis/tinnitus but instead misophonia or autism.)

As far as I know, and anyone please jump in here,
little to no clinical research has been done to scientifically determine the costs and benefits of any given sound therapy and the exact therapeutic mechanisms of any given kind of sound therapy.

And, of course, most of us with hyperacusis/tinnitus have combinations of symptoms going on from those in the inner ear to those in the middle ear to those in the actual outer ear.....not to mention head and body symptoms.

We on this board have seen many examples from person to person of mixed results of broadband (and other) sound therapies.
Perhaps mixed results are in fact the rule vs. the exception.
There seem to be no clinical studies comparing one sound therapy to another.

I think we could all agree that there is a lot of research to be done concerning what is wrong with our systems from case to case, and what might be the optimal treatment from case to case.

I am not advocating that we stall on treating ourselves with the best of what we know at this time while we consider tracks of research that could be done.
I am simply voting that we continue to share our experiences as well as creatively and logically think through their implications.
  

Debbie



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Rob

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Reply with quote  #28 

We on this board have seen many examples from person to person of mixed results of broadband (and other) sound therapies. Perhaps mixed results are in fact the rule vs. the exception.

I can't speak for "we" but I can speak for what I've seen.  I can think of many examples of folks succeeding from the use of broadband and other sound therapies to treat hyperacusis.  Mixed results, in the time I've spent here, seem to be the exception not the rule.   

Rob
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Jennifer

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Reply with quote  #29 

Hi John,

Thanks for your reply. I realize that hyperacusis sufferers need to expose themselves to sound to recover; I was actually talking about the initial period after my injury in August, 2008. Here's a quote from the "supplement" on the Network's website:

"Ears will almost always recover to some degree. It is very important during the initial onset that your ears should not be exposed to any extremely loud sounds. It is no different than another part of your body being injured. You must stay off the injury and allow it time to heal.

Frequently ear doctors tell us initially to abstain from wearing earplugs and get used to the noise immediately following the noise trauma. This is terrible advice! Sometimes we even have the misconception that if loud noise caused the problem then more loud noise will snap our ears back to normal. This is one of the worst mistakes to make following a noise injury."

I didn't read this until a few months after my injury - after three different doctors (one ENT and two TRT providers) told me I should uplug immediately. One of the TRT providers was on the TRTA list. I spoke to him on the phone about two weeks after my injury. He told me to stop wearing earplugs around my house. (I had only just begun to get a sense of what was too loud for me at that time.) I took his advice and immediately got worse from the sound of dishes clanging in the sink. This sound is not loud to most people of course, but it was very loud to me and it further injured my right ear and worsened my hyperacusis. And that was just the beginning of my downward spiral that was caused by repeated re-injuries that occurred when I wasn't wearing adequate ear protection.

As to whether or not I'm phobic, I have a feeling that we're never going to agree on this, and since I have four different pain issues that are killing me right now as I type this, I'm not going to try to respond to that point right now. But I appreciate you taking the time to share your thoughts. I know you're just trying to help me.

I was sorry to hear about the global brain sensitivity issue you are dealing with. I'm not familiar with this disorder, but it doesn't sound like fun. It's really nice of you to contribute so much to the forum even though you have difficulty being on the computer.

Thanks again for you reply. Have a nice weekend. :-)

Jennifer

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Debbie

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Reply with quote  #30 

Hi Jennifer,

Sorry to hear of your multiple sources of pain, "that can't be fun" as you put it to John regarding global brain sensitivity.


It sounds like we share an unfortunate hyperacusis onset history...of perhaps missing opportunities to allow our auditory conditions to naturally recover before becoming acute and then chronic.

For me, I had my ears irrigated (genious ENT thought that my growing ear fullness which had begun days prior with the hyperacusis-causing acustic trauma could be due to ear wax)
and then...without ear plugs (having been assured by ENT that my ears were clinically problem free so good to go)
drove down to a parking meter by a rail road crossing (did not even think about it...just days before my ears had been 100% normal)
and got stuck outside my car right next to the honking horn and repeated whistling of a train that can be heard for at least 10 miles on a quiet night.
Not. Good.
Not. Good!!

Despite our in some ways similar, Dr.-encouraged fumblings at the beginnings of our conditions, I hope for us that there is some way we can continue to progressively recover.........

Maybe our paths out of this will somehow, someway, be as serendipitous in a positive way as they were awfully bad luck in the beginning.

To this end, thanks for initiating the reseach concept.

Wishing you improvements with your ears and your additional sources of pain.

Debbie 





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Debbie

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Reply with quote  #31 
Hi Rob,

I agree that properly timed and measured sound exposure is probably helpful to most. 
It would be good to see comparative studies between different sound therapies and between other interventions as well, and in combination.
Also, clarity and consistency in terms of what forms and levels of improvement are considered to constitute "success" would of course be good.

Debbie




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Jennifer

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Reply with quote  #32 

Hi Debbie,

Yes, it does seem like we share a similarly unfortunate beginning with our hyperaucis. The complete ignorance of the ENT you saw just goes to show how much a nonprofit is needed that will educate ENTs and others about hyperacusis.

And yes, let's hope we have more luck on our paths out of hyperacusis!

Wishing you improvements with your ears too.

Jennifer

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LizH

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Reply with quote  #33 

A little comment from me to add to what Rob calls the terminology sweepstakes.  Debbie and Jennifer have been talking about fears and dislikes, Jastreboff and many others use the term phonophobia to mean fear of sound.  I for one have never been comfortable about this use of the term phonophobia because to me a phobia is not a reasonable fear but rather an irrational fear.  I agree with Debbie's examples and her assertion that some so-called phobias are actually perfectly reasonable responses and therefore IMO should not be called phobias.  Remember the movie Arachniphobia?   It played upon people's irrational fear of spiders owing to their 'creepy' appearance.

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Johnloudb

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Reply with quote  #34 

Quote:
Originally Posted by Jennifer
I didn't read this until a few months after my injury - after three different doctors (one ENT and two TRT providers) told me I should uplug immediately. One of the TRT providers was on the TRTA list. I spoke to him on the phone about two weeks after my injury. He told me to stop wearing earplugs around my house. (I had only just begun to get a sense of what was too loud for me at that time.) I took his advice and immediately got worse from the sound of dishes clanging in the sink. This sound is not loud to most people of course, but it was very loud to me and it further injured my right ear and worsened my hyperacusis. And that was just the beginning of my downward spiral that was caused by repeated re-injuries that occurred when I wasn't wearing adequate ear protection.

Sorry, you got bad advice. TRT shouldn't hurt and ear protection should be removed very slowly, especially if you've been using it a lot. Even highly regarded doctors, in all fields, give out bad advice sometimes. I could write a list of personal experiences on that subject.

That's why I recommend that people learn all they can about this condition, so they know how to proceed on their own, and can challenge doctors advice.

Ears recover a lot faster in the presence of sound enrichment. 

John


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Johnloudb

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Reply with quote  #35 

Quote:
Originally Posted by LizH
I for one have never been comfortable about this use of the term phonophobia because to me a phobia is not a reasonable fear but rather an irrational fear. I agree with Debbie's examples and her assertion that some so-called phobias are actually perfectly reasonable responses and therefore IMO should not be called phobias. Remember the movie Arachniphobia? It played upon people's irrational fear of spiders owing to their 'creepy' appearance.

If you completely avoid sounds because you're afraid they will damage your hearing or make symptoms worse then that's phonophobia.

Most people with hyperacusis also have some phonophobia. Hurt ears is just temporary, and not permanent, and ears can hurt and ring and your ears won't be damaged. 

It's a mistake to react badly (i.e. "End of world! Sky Falling!") when your ears get hurt. When my ears get hurt I've learned to say, "Don't care about that!" I mean, I do get upset a first sometimes, but I pull myself together and don't dwell on it. I just take it easy with sounds for awhile and work my way back.

I do use ear protection for short periods when needed. Desenitization needs to be done slowly for the most part.

My ears have been really riled sometimes and all the sounds in my room were setting off ringing. I just took it easy for 3 or 4 days and did 10 second exercises with sounds I could tolerate and worked my way back. With sound enrichment this happens faster in my experience.

Of course it's best not to hurt your ears if possible but sometimes sounds can't be avoided.

Phobias are more about the neurophysiological response to something your afraid of, than whether it's rational or not, in my opinion.


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Debbie

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Reply with quote  #36 

I agree with John that there can be a blurry line between pain/discomfort that shows us we must step back and pain/discomfort that = "no pain/no gain" to some extent.

Even with "controlled" sound therapies, there is commonly a process of stepping forwards and back a bit throughout the sound therapy process as boundaries are tested.

I believe that returning to sounds when we are past the acute injury stage can be a big boost to morale.
I just don't know if this can come at a boost or sacrifice to the healing process for the auditory condition, and I doubt anyone could say.

I returned to work and school and 90 minute RT driving commutes at a point where all of the above were painful, caused many setbacks of all symptoms, 12 months after the onset of the most acute phases of my auditory condition.


I have "done better" over this last year, most of the time I'm not in an emergency-level degree of physical pain or discomfort, which I was during the acute phases, months 1 - 9 especially.

I just don't know, and doubt that any physician could even venture to guess, whether my improvements are due to the very nature of the "chronic phase" of this condition - just kind of stuck in (the relative relief of the) limbo phase where things are no longer generally an emergency but there are daily reminders that life is not as it was -


or if it is a combined result of the "stable chronicity"
and my will to continue pressing forwards due to having the very "life" to live for which also keeps me hurtling into sound,  
&/or whether in fact I would have improved actually much further by now, and even been out of this "chronic phase" (and thus on the verge of an even fuller ability to participate in life)
had I just waited longer before plunging onwards.

But having daily plans and goals whether a sound therapy LDL goal or completing school or training for an athletic event..........
is necessary to our psychological coping mechanisms.

I agree we do better with "therapy" activities in our lives, and life activities, all of it. Everything that makes us feel proactive.
This is very boosting of the spirit and the spirit helps us rise to our greatest capacities.


So let us engage in a daily process of focused activity that tests our limits (as long as it is not full-stop overdoing it) that gets our minds, bodies, spirits looking towards a positive direction.


I just do not think we have enough data to prove that one therapy or another or the tincture of time or the boosted, indomitable spirit is most responsible for the improvements.


Debbie




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david

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Reply with quote  #37 
This is an easy protocol for anyone to follow. It was published in a peer reviewed scientific journal. 33/34 subjects regained ldl's of 100 at all freqencies over 9 weeks. 34/34 subjects regained ldl'svof 100 db after 18 weeks. 2 months after therapy they still had the same, normal ldl's. I will start a new post for people doing thus protocol so we can help corroborate the results. I'm on week 7 now--eating at noisy restaurants and out dancing. I honestly don't understand why people are debating the fetal position and calling for comparison studies. 100% success needs to be replicated. You all can do this.
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Marilyn

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Reply with quote  #38 
Quote:
Originally Posted by LizH

A little comment from me to add to what Rob calls the terminology sweepstakes.  Debbie and Jennifer have been talking about fears and dislikes, Jastreboff and many others use the term phonophobia to mean fear of sound.  I for one have never been comfortable about this use of the term phonophobia because to me a phobia is not a reasonable fear but rather an irrational fear.  I agree with Debbie's examples and her assertion that some so-called phobias are actually perfectly reasonable responses and therefore IMO should not be called phobias.  Remember the movie Arachniphobia?   It played upon people's irrational fear of spiders owing to their 'creepy' appearance.



I agree.  I wasn't phobic about certain sounds.  At one point in my recovery, I just knew if I was around motor noises they'd make me hurt later.  I was labeled misophopic, but that seemed offensive to me because I like motor sounds just fine.  Phonophobic?  That seemed too harsh.  Realistic was my definition.  (Of course, I defined myself in the most favorable manner, haha.)

The way I dealt with it, as I've stated before on other threads, was through self talk.  If a loud motor pulled up to me at the gas pump, I'd just tell myself, "This won't hurt me.  I love the way that truck sounds.  It won't hurt a normal ear, and it won't hurt my ears."  I've overcome my fear of motor noises, or whatever we want to call it. It seemed the improvement came as I've improved my LDL's and worked on my limbic reaction to associate the bothersome sounds as pleasant.  I haven't had a bad reaction to a motor sound in a long time.  By bad reaction, I mean a H headache afterwards.

I mentioned on another thread that I ran two fans about 7 hours day before yesterday and had a reaction to them.  So, I am working on that today.  I turned on the kitchen fan today while I washed dishes; about 10-15 minutes.  Noticed how quiet it was, told myself it won't hurt me...

Of course, there are some here who'd say do anything opposite of what I say...since I seem to be having a lot of setbacks, lol.

Don't you all just hate that it's a lot trial and error?  I don't mind the trial part, just the error.  I can imagine how difficult it is to deal with and treat a hyperacusis patient, since it seems we're all different in our sound tolerances. 

Hopefully, we will ALL see noticeable improvement in the days to come.

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LizH

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Reply with quote  #39 
Thanks Marilyn.  

John, I didn't say that nobody has real phonophobia in the sense that I interpret a phobia.  I'm sure some people with H do develop an irrational fear.

David, thanks for getting this thread back on track.  I am very interested in the Spanish protocol, in attempts to replicate it, and also whether or not the Spanish researchers have any advice about where to draw the line between reasonable protection and over protection during the rest of the day.
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aQuieterBreeze

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Reply with quote  #40 
HI David,
you mentioned-
I ordered my nature sounds from iTunes.  The albums are in the Ambient Nature Sounds series.

Thank you for your reply, and for reminding me of Glacier Natl. Park  as well - I've only been there once, and it was really beautiful. (And it was cold too,  even though it was summer :-)

You mentioned- (to Liz)

Definitely took and still take precautions. I avoided places I thought were too loud. But I started gradually going up. Like I'd eat for 10 minutes in the cafeteria at work and then finish my meal outside. Each day I'd stay a minute or two longer.......

I think that's a good way to go about it - a bit at a time as one is able to.....
taking it easier when necessary, allowing sound "in" when possible -
and moving forward a bit at a time when possible.Though not pushing it too far (past what we are able to tolerate) at one time, a bit at a time ...over time.
Working with what one can tolerate and building up to being able to tolerate more in the way of sound...... that sounds like a good idea.
Wishing you the best as you continue moving forward, and thanks again fir posting the article about the Protocol you mentioned.

Liz,

Thank you for the information on the olive oil. It's wonderful that you can use what you grow in that way. Do you press  it as well?
What you mentioned about the glass marbles reminds me of some I used to have as a kid.....

John,

You mentioned -
.....listening more to sounds you tolerate well....


Listening to and being around sounds we are able to tolerate, can be very helpful as we work on being able to tolerate more in the way of sound.
I like the way you phrase that. better than the way you have  phrased it at other times :-)  Thank You. (And the reply in that other thread, about loudness - is one that i have  still been  hoping to get back to.)

Debbie,

You mentioned-
So let us engage in a daily process of focused activity that tests our limits (as long as it is not full-stop overdoing it) that gets our minds, bodies, spirits looking towards a positive direction.

To test and challenge our limits and boundaries a bit at a time, over time as we are able to do so  in my view is  helpful......but to push things too far at one time, to exceed our boundaries intentionally by Too much at one time- is not something i would recommend, for someone with hyperacusis ---especially if one has any choice in the matter.

I'm glad you are doing well....or at least much better. Take care and take it easy around sound when you need to.  In my view - pushing things too far at one time can make things more difficult. But you tend to do that, just remember that there are times you don't have to - there are likely times you do have a choice ...... I hope you will remember that and keep getting better.  And remember it can help to take a break and take it easy soundwise after exposure to sound that is too difficult.


Marilyn,

If you can  talk to yourself and / or think positive thoughts and have the sound/level of sound  be OK - in my view, I think when you do that you are dealing with the stressful / emotional reactions to those sounds ....
If sound is too loud,  For Me -  it does not matter weather i like it or not - or what i tell myself - it will still be too difficult for my hearing/ears.

Re trial and error.....I think if we pay attention over time we can find what works well for us.....

It's not always just the sound of some thing/ one thing - (like the fans you mentioned) though sometimes it may be , and fans can be difficult for those with these challenges.
But sometimes it could be the combination of something else (soundwise)  that may have also been going on that causes a  setback, or increased sensitivity to sound for awhile...
Where some sound may not seem too difficult, sometimes  - other sound added to it can sometimes tip that balance. This time of year I notice that alot - as sound from outside - especially if i have a window open - can mix with other sound .... sometimes making things more difficult.


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aQuieterBreeze

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Reply with quote  #41 
Hi David,

While  I have some various thoughts about the study one of the things that went through my mind is some with these challenges, are so afraid/ reluctant  to start anywhere, and in my view they at least provide a place to begin.

Just my thoughts though.

Enjoy going out dancing ..... have fun and if it's too loud - leave.

Have fun!

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LizH

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Reply with quote  #42 
Perhaps I need to clarify my brief comment above.

I just feel that the term phonophobia is used too freely for my liking but I don't expect that anything is going to change on my account as it seems to be already so well entrenched now as meaning any form of fear of sound. 

Speaking for myself only, when I have to go to a supermarket in our local shopping centre, I dread it to the point of fearing it because, even though I know it is not going to damage my ears, I still fear that moment when the glass entry doors slide open because I have learned through repetition that I will be hit in the head by a cannonball of sound.  I only fear the pain not the sound, but I still don't consider that to be a phobia.  It's only my ability to endure the discomfort that is at stake here and I don't think there's anything psychological, irrational or otherwise involved in this.
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aQuieterBreeze

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Reply with quote  #43 
Hi Liz,

Do you cover your ears as you walk through the entrance to the store?

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Debbie

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Reply with quote  #44 
Hi David,

Thanks for posting this protocol, I'm all for data collection (and water sounds) and will gladly follow this protocol & report back.
May be a bit later this summer as must gather the resources for the sound meter.
I can understand your frustration with the cacauphony (can spell this word about as well as I like listening to what it stands for ) in this thread.
Sorry some of us went on a tangent in your interesting thread...as oft happens on this board, unfortunately.
I think all of it is worthy of discussion...ideally in separately labled threads.

Debbie

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Marilyn

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Reply with quote  #45 
Quote:
Originally Posted by aQuieterBreeze


Marilyn,
If you can  talk to yourself and / or think positive thoughts and have the sound/level of sound  be OK - in my view, I think when you do that you are dealing with the stressful / emotional reactions to those sounds ....
If sound is too loud,  For Me -  it does not matter weather i like it or not - or what i tell myself - it will still be too difficult for my hearing/ears.

Breeze, I agree.  Sorry, I assumed the reader would know I meant sounds that were not too loud.  Thanks for clarifying that.   The motor sounds weren't too loud.  Another example:  The refrigerator/freezer section of a grocery store.  I had to 'talk' myself through.  Now I don't even notice those sounds in a grocery store.

Re trial and error.....I think if we pay attention over time we can find what works well for us.....

You're right, except  I've found some days I can tolerate a sound just fine, and not as much another day.  Being mindful of not overdoing is wise.

It's not always just the sound of some thing/ one thing - (like the fans you mentioned) though sometimes it may be , and fans can be difficult for those with these challenges.
But sometimes it could be the combination of something else (soundwise)  that may have also been going on that causes a  setback, or increased sensitivity to sound for awhile...
Where some sound may not seem too difficult, sometimes  - other sound added to it can sometimes tip that balance. This time of year I notice that alot - as sound from outside - especially if i have a window open - can mix with other sound .... sometimes making things more difficult.

That's why I blamed the fans.  I learned from that, though.  They're fine to have on a short time, and I'll gradually increase the time.  There weren't any other noises except I had some nice music playing awhile.  We live outside the city limits without any neighbors.  I stayed home and was doing housework.  I was home alone most of the day.

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aQuieterBreeze

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Reply with quote  #46 
Hi Marilyn,


You mentioned-
You're right, except  I've found some days I can tolerate a sound just fine, and not as much another day.  Being mindful of not overdoing is wise.

Some days  our hearing/ears are more sensitive than others and what we are able to tolerate in the way of sound changes. It can fluctuate back and forth at times, sometimes we may be able to tolerate a little more - like on a "good day", and  sometimes less.  I think understanding  that happens can be helpful, and  understanding what we are able to tolerate when it does that,  can be helpful as well  My hearing/ears are more sensitive today ..... and even filling a birdbath seemed too loud- it reminded me of when it was always like that, and i used to have to angle the spray from the hose to fill it, or set it on a much softer setting  ....  and i'm very happy to be doing better for the most part. My guess is tomorrow will be better.

You mentioned -
That's why I blamed the fans.  I learned from that, though.  They're fine to have on a short time, and I'll gradually increase the time.


The length of  time as well as the volume of sound we are around or exposed to - can sometimes make a difference, you bring up a very good point.

Hope you are doing a bit better, or noticing more improvement today.
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Johnloudb

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Reply with quote  #47 

I know people don't like the word phobia, but phobia is as phobia does ... 

Quote:
Originally Posted by Marilyn
I mentioned on another thread that I ran two fans about 7 hours day before yesterday and had a reaction to them. So, I am working on that today. I turned on the kitchen fan today while I washed dishes; about 10-15 minutes. Noticed how quiet it was, told myself it won't hurt me...

Way to go Marilyn, that's not an easy thing to do! 


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Marilyn

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Reply with quote  #48 
So, John, in other words you're saying about phobias - If it walks like a duck and quacks like a duck, it isn't a cat?   Hmm...interesting.



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Johnloudb

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Reply with quote  #49 

Hi Marilyn,

Yeah, pretty much. That would be a really strange cat.  I just borrowed the line from Tom Hanks in the movie Forest Gump, "Stupid is as stupid does.

P.S. and in case anybody is thinking it, I'm not calling anyone stupid.

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Johnloudb

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Reply with quote  #50 

Quote:
This is an easy protocol for anyone to follow. It was published in a peer reviewed scientific journal. 33/34 subjects regained ldl's of 100 at all freqencies over 9 weeks. 34/34 subjects regained ldl'svof 100 db after 18 weeks. 2 months after therapy they still had the same, normal ldl's. I will start a new post for people doing thus protocol so we can help corroborate the results. I'm on week 7 now--eating at noisy restaurants and out dancing. I honestly don't understand why people are debating the fetal position and calling for comparison studies. 100% success needs to be replicated. You all can do this.

Hi David,

Sorry for the off topic. That sounds like a very helpful protocol. Not something I can follow right now, but might give it a go when I'm able to. Thanks for posting that!


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