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pattiluv
 #1 
hi all,
i finally picked up my trt sound generators yesterday, so... here goes!
since i still have intermittent ear pain, my audiologist and i agreed that biofeedback would be a good idea.
so... i was looking on google. and found someone near me who does cbt, specializing in pain situations. her sister has hyperacusis so she is as knowledgeable as i could hope for at this point. also she's been on the faculty on several universities so i feel she will be knowledgeable about cbt as well. (having received my book by julia beck, i can see that this is quite a profound topic.)
i may do the biofeedback separately from the cbt therapist... not sure yet.
so... a new adventure.
best,
patti

Maccy
 #2 
Good Luck Patti, keep us all informed of your progress.
I'm sure you'll do great.

Mandy

aQuieterBreeze
 #3 
Hi Patti,

Maybe you can copy your post about this from the hyperacusis board to this one?
(Maybe someone here will be able to help with the questions you raised there?)
They looked like good and important ones.

And I wish you the best of everything as you go through this!
Thank you for letting us know- where you are in this new part of your journey.
pattiluv
 #4 
thank you, bbec, mandy, aqb...

thanks for your words of support. i hope to be a positive role model of doing this right! and becoming the next "success story" for trt.

the gist of my question on the hyperacusis board was this:
 
 i am sure i will have lots of questions along the way. for one thing i only have t in one ear and so i am "fiddling" with how to find the right sound, since the two ears are so different, and sometimes my t is low or off, so how loud do i make it?

i finally set them for today... to where i am happy with them. it took about fifteen minutes.

it's a little strange because i can hear them when i focus... but as soon as i am anywhere where there is ambient sound i can't. but, i guess that's okay.

best,
patti

stringplayer
 #5 
Pattiluv posted:

i am sure i will have lots of questions along the way. for one thing i only have t in one ear and so i am "fiddling" with how to find the right sound, since the two ears are so different, and sometimes my t is low or off, so how loud do i make it?

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

Protocol for setting devices in ears where the tinnitus volume is unequal:

First, you set the device in your worse tinnitus ear to the mixing point as usual.

Then you set the device in your better tinnitus ear so that as you listen to the device in your better ear, it is equally loud as the device in your worse ear (i.e., you do not try to find the mixing point in your better ear.)

Then, if your tinnitus is actually masked by the additive effect of the two devices, you gradually turn them both down equally until you can once again detect your tinnitus in one of your ears.

Of course, if the volume of the devices is such that it is uncomfortably loud, you gradually turn them both down equally until the volume is no longer uncomfortably loud.

Once the devices are set, then leave them alone.  Do not keep readjusting.

sp


 
pattiluv
 #6 
dear sp,

thank you for your very precise instructions. i appreciate your clarity,

today i have low t so i can do this.

what do you recommend on those days, like the two before this, where the t is extremely faint or nonexistent?

i've only had the gens for 4 days now, so i am not exactly an expert at this.

i want to make sure i do this correctly.

warmly,
patti

pattiluv
 #7 
update,

i have contracted dr. robb to augment the advice from my provider and sp. i will also write dr. jastreboff.

i just want to take a moment to talk about the cbt.

i have been just a little discouraged, as you might imagine, that i hit rough waters within a day of getting my gens. wow!

but i started cbt and that is making such a great difference. my therapist recommended a book, feeling good, which is what i would cal a "lay" book, very easy and accessible.(the other book is good, too, just more advanced).

over the months, starting with rob and the posts here, and now having this focus in therapy, i have a "cbt" friend in my head. it keeps me from catastrophizing, overgeneralizing, minimizing, maximizing, and the like.

my cbt voice, rather than being a harsh critic, has turned out to be a loving friend who defends me and pulls me out from the depths of despair, faulty conclusions, misplaced anger, and the like. it helps me stay relaxed and focused on what i need to do next, and, also, keeps me being present to all there is in life to enjoy.

i hadn't expected this at all. i thought it would be another harsh critic, but here it is someone really nice and caring. rational, for sure.  definitely a friend to me, supportive and positive.

i really needed that last night after i went to an event yesterday which gave me more ear pain. i practiced my cbt and my one biofeedback session, and the biofeedback helped... all i learned so far is deep breathing, and i imagined relaxing sensations cascading from the top of my head, downward; but that made quite a difference.

so i am proceeding with equanimity and calmness in handling my challenges, rather than reactivity. this can only help. i am so glad i chose to do both trt and cbt at the same time.

i highly encourage cbt as something to try as an ancillary to whatever ear challenges one may be faces, if needed. it may not solve all problems, but it is certainly paves my way to more ease, helps me with depression, etc... and i am grateful for that. and so are the people closest to me.

one thing i am wondering: if trt is good for h, and so many people with h have ear pain, then, what do they do? am i unusual in having these challenges with ear pain? i am sure i will hear more from dr. robb but i thought i'd put it out to the list to see if anyone else has had to deal with this, and if so, what they did/noticed.

best,
patti

ps thank you to sp for this board and rob for turning me on to cbt.

stringplayer
 #8 
Patti posted:

one thing i am wondering: if trt is good for h, and so many people with h have ear pain, then, what do they do?

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

I was unaware that "so many people with hyperacusis have ear pain."  To the best of my knowledge they are completely unrelated phenomena.

Who diagnosed you with hyperacusis, patti, and how was that diagnosis made?  Maybe that's where the problem lies.

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

thank you to sp for this board

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

This board is nothing without its (currently) 140 members.  So when you thank me, you are really thanking all of us.  And on behalf of all, you are welcome.

sp

pattiluv
 #9 
dear sp,

my ent diagnosed me with hyperacusis... by intake.

my audiologist diagnosed me, when she took my ldls and by intake. my ldls were 58-72 originally. second reading 74 -92 though to me they are still closer to the mid 70's.

as for ear pain, good question. i assumed hyperacusis and occasional, potential ear pain went together, as that is what i read on hyperacusis.net. so i googled hyperacusis and ear pain. i see many references to it.

in "hyperacusis", by baguley and anderssen, they say, in a 2002 study, pain was reported by 12.5% of people with hyperacusis when exposed to aversive noises - vs. 5% for the general population.

so how do i "know" anything? well, for one thing, i didn't have ear pain like this before i had h, so, based on all this, the anecdotes, my personal experience, and what i've read in the literature, i am surmising, - and asking questions... i am certainly open to more information on all fronts.

best,
patti

pt
 #10 
I think Patti makes a good point about ear pain and H going together. To me, H, T and ear pain are all results of the same noise injury. I had burning, excruciating pain in both ear canals that didn't dissipate for 8to9 months, when it became mild discomfort. Then it seemed to travel from the ear canal to various parts of the outer ear. Even now, sometimes my entire outer ear stings and hurts. Other times there are spots of pain in odd places, like behind the earlobe or just outside the ear canal. A whole lot of people on the H board report ear pain.
Some people here seem to have T spikes when exposed to noise. I tend to have pain spikes. My T is fairly constant, unilateral and not very loud. When exposed to noise, I feel it the next day or two as ear pain, and I also (used to) get very fatigued and needed to sleep a lot for the next day or two.
Nobody seems to have any explanation for the pain. There is also no explanation for why I felt like I had the flu for more than a year.
So whether ear pain and H are common together, or whether these boards are just screening in the worst of the worst -- the few of us who do have that unfortunate combination -- who knows?
Patti - my thought, which is pure speculation, is that it is possible that having the weight of something on your ear, even if it is not much weight, is causing pain. I cannot put my hair behind my ears because it is too uncomfortable. I can wear glasses for a very short while only.
stringplayer
 #11 
Peach posted:

I think Patti makes a good point about ear pain and H going together.

...........

It is something about which I was unaware, but I still think that it is very important to have an accurate diagnosis as I believe that a lot of people who consider themselves to be hyperacusics are misdiagnosed - and hyperacusis is not their primary problem, although it might have been at one time.

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

To me, H, T and ear pain are all results of the same noise injury. I had burning, excruciating pain in both ear canals that didn't dissipate for 8to9 months, when it became mild discomfort. Then it seemed to travel from the ear canal to various parts of the outer ear. Even now, sometimes my entire outer ear stings and hurts. Other times there are spots of pain in odd places, like behind the earlobe or just outside the ear canal.

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

Right, but for reasons we cannot discuss here, you know that your case is quite unique.  It would really be a bad idea for anybody to apply your experiences to his or her own situation.

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

A whole lot of people on the H board report ear pain.

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

And a whole lot of folks on the H board have not been accurately diagnosed.  Or in some cases they were, but their diagnosis might have changed over time, and it is no longer accurate.  In my opinion.  (Which, of course, is worth little more than you are paying for it.)

sp

 #12 

We'd have to check with Dr. Andersson to make sure, but I am reasonably sure that by "pain", the hyperacusis prevalence study described in his book (co-written with Dr. Baguley) refers to immediate pain following exposure to sound.  That aspect of pain is common to hyperacusis.  
 
In other words, one hears a particular sound, something high-pitched for instance, not only can it be intolerably loud, it can also be physically painful to hear.  I believe that is the physical, painful aspect to decreased sound tolerance most folks who have been diagnosed with hyperacusis are talking about, in addition to the experience that everything sounds generally much louder. 
 
We could say that, past a certain threshold, sound becomes not only uncomfortably loud, but painfully so for someone with hyperacusis.  However, as far as longstanding physical pain that continues long after exposure to sound,  I don't know if it's part of hyperacusis, or something completely different from hyperacusis.  It could be related to the tensor tympani muscle.  It could be associated with TMJ.  It could be a number of things, including a fear response to sound -- or, it could be hyperacusis.  But I'm reasonably sure that the experience of longstanding pain following exposure that doesn't go away is a fairly uncommon experience even for hyperacusics.  Not impossible, but rare.   
 
The hyperacusis prevalence study of the adult Swedish population by Andersson, Lindvall, Hursti, and Carbring, published in the peer-reviewed literature in 2022, defined hyperacusis as follows in its accompanying questionnaire.  My personal view is the description is imprecise and had an impact on the results. 
 
"In our society we are surrounded by sounds of various kinds.  Some of these sounds can be annoying or even unpleasant in character.  We all differ in how vulnerable we are to these sounds.  In this survey we study sensitivity to everyday sounds in the sense that they evoke adverse reactions.  By this we mean, for example, reactions to conversation, chirping of birds, paper noises (rustle), the ringing sound at a pedestrian crossing, or the sound of a running water-tap.  In other words, we ask about sounds of moderate loudness that most people experience daily without being annoyed.  Our interest is thus not restricted to loud sounds such as drilling machines or low flying aircraft."
 
Annoyance of moderately loud sounds that most people experience each day without being annoyed by them doesn't sound like hyperacusis to me.  Some of the data were collected via the Internet, where visitors to a major Swedish newspaper's website were asked to complete a questionnaire.  Of these respondents, a whopping 9% seemed to have hyperacusis.  I don't believe it.  Additional data were collected via postal population study, and 8% of respondents said they had hyperacusis. 
 
Excluding hearing-impaired individuals so that folks who may have recruitment would not be included in the results, the two groups measured 7.7% and 5.9%, respectively.  Very few of these folks noted that talking or rustling paper noises were aversive -- these are fairly typical hallmarks of hyperacusis.  Very common reactions when exposed to "disturbing sounds" were to feel irritated or to have poor concentration.  Feeling afraid or "in pain" were less common.  When Baguley and Andersson write "pain was uncommon even among persons reporting hyperacusis, but it still was twice as high as among persons without hyperacusis (12.5% vs 4.5%), I believe they mean immediate pain when exposed to a sound that is beyond their tolerance threshold. 
 
Baguley and Andersson also write (quite sensibly) that "depending on how hyperacusis is defined, it could be argued that the actual prevalence of severe hyperacusis in the Andersson et al. study was much lower than reported:  possibly only 2 to 3% of the population has severe hyperacusis, or even less."
 
Rob
pattiluv
 #13 
sp, and rob,
i want to thank you for raising the questions, and making the distinctions between hyperacusis and ear pain. and rob, thanks for clueing me in on short term vs. long term ear pain as part/not part of h...it does make a difference in terms of what one might do next.
once again i am in profound gratitude for the information you generously offer.
i am going to get my ear pain checked out so i can continue on my sound enrichment program.
thank you as always. it does make a big difference how things are defined.
i also enjoyed, rob, your questioning the study in that book... i thought it was a little unusual, too.
warmly,
patti

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