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jirimenzel

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Reply with quote  #1 
As a 40dB hyperacusis sufferer for 9 years, I've only in the past month looked it up on the internet. I put my trust in the wrong people for the definition and was basically accused conveniantly of having misophonia, phonophobia, of irrationally having a brownnoise in my bedroom, the works. A spanish Jastreboff namedropper also provided me with wasted years by telling my family it was just an invention I'd come up with- something they'd always wanted to hear- and not the result of the acoustic traumas- and ototoxicity- that I know it was. The spanish pdf where he talks about ''rationally taking the patients through their emotional fallacies'' or somesuch nonsense was frightening and in my case was drugs (psychiatrist), psychologist (breath in breath out and have a shower everyday), even mentioning the use of electric shock treatment and looking at me like a freak when I tried to explain what I now know is the technical definition of hyperacusia, not the sound but the moment the sound changes. It was savage. They even told me not to look up information on the internet because ''we could imagine new symptoms.''

So I burst into Internet and, of all places, created a Facebook page with the following statement. I know, very amateur. I'm looking for hyperacusis sufferers with the same attitude but, more usefully anyone in the medical profession sharing the same skepticism. I'm about to finish a degree in literary studies which I know is no where near as highly considered and it takes a tonne more effort than for a normal human being, but I'm already seeing so much sloppy writing on the matter I'm thinking if I trace the ''proof'' I could be onto something. I'll soon be using my uni's library looking up every source TRT supposedly gets its proof or success ratings from to confront something that's wasted and hurt so much of my life. I'll leave my thesis- which is mediocre anyways- on hold till I clear this thing up and somehow clean away the damage they've done.

Please feel free to correct and challenge my first draft (the amateurish facebook thing). It came from my anger and experience and I thought it might balance the two other facebook groups that had people talking about tinnitus. I had tinnitus the year before the 9 years and it was peanuts, really peanuts, in comparison. The group's called Hyperacusis ONLY.



''This is the draft; hopefully between us all we can improve it.

The aim of this group is to establish severe hyperacusis as a unique injury and to discredit its purported similarity with other injuries that are nothing compared. As more hyperacusics join, we will hopefully build an Internet community to defend ourselves, even though because it's an injury that cannot be proved we will never get any help. This proposed text will be improved by fellow hyperacusis sufferers and anyone interested in our condition. Hopefully we'll reach, say, 50 in 2 years because I doubt we're that many at all, and I've only read a couple on the Internet, met none in real life, but we have to start somewhere. And I've read people in the other two facebook groups talk about their tinnitus, so if we're lucky we'll make it to 50.

1. 40dB- 50dB is extremely rare. Not 10 per cent of the population. Not 3 million in the U.S. Not 8 per cent in Britain. Not 10 per cent of acuphenians. Britain has 75,000 HIV patients and Facebook 200.000 sympathisers in its main group. How many hyperacusics are in Britain if the main Facebook Hyperacusis group has 71 members? And the main 'deaf' fanpage has 7200? So if there are 600,000 deaf people in the States, are we 6000 hyperacusic in that country? That's a big drop from 3 million; someone with 40-50dB cannot be compared to a musician with 85dB problems.
2. Severe hyperacusis has NOTHING to do with acuphenia/tinnitus. Sure it usually comes with it, but it's peanuts in comparison.
3. Phonophobia, phobia to sound, has NOTHING to do with hyperacusis. Hyperacusis sufferers are not on an LSD trip.
4. Misophonia, hatred of sound, has NOTHING to do with hyperacuiss. Both just help to discredit the diagnosis of hyperacusis sufferers. Yahoo groups has a soundsensitivity/misophonia group with 915 members. The equivalent yahoo group for Hyperacusis has 8. Please, if you don't like the sound of your hair dryer because it reminds you of your ex-girlfriend, kindly don't join this group.
5. Hyperacusis is NOT a lack of tolerance for sounds. Hyperacusis is the loss of the ear's dynamic range, the ability of the ear to tolerate SUDDEN CHANGES OF SOUND. This explains why hyperacusis sufferers can tolerate constant- blank, brown or pink- 70dB sounds but not sudden 40dB changes. If you do not refine the definition from day 1 you will be accused of these other pathologies.
6. Hyperacusis is most probably caused (99%) by an insufficient blood supply to the cilliar membranes of the inner ear at any given period which result in permanent damage- because they are membranes which do NOT renew unlike in the usual sprain- or by an immediate or accumulative acoustic trauma. There are also a range of other causes that don't include it being an invention of your mind.
7. Hyperacusis is not an incapacity to sort out background from foreground noises. It is just pain. I certainly is not a loss of balance. And even though one of its consequences is rampant ADHD and ADD, hyperacusis is not these things.
8. Hyperacusis is NOT depression. Even thought its natural outcome, depression does not cause hyperacusis, just like misophonia does not create fictional hyperacusis.
9. Permanent severe Hyperacusis injury- if not the entire hyperacusic definition which probably belongs to us- CANNOT be treated with blank TRT sounds. You cannot improve an injury of these characteristics with that. You can, on the other hand, convince a patient that he doesn't need to wear ear plugs and a patient can feel better after going to TRT because he's discovered blank, brown sound but that's probably because he didn't know the definition of hyperacusis to start with. These things should not enter the bloated TRT success statistics, which are entirely different 35% to the purported 85% in acuphenians, which I insist have nothing to do with hyperacusis sufferers. To put it simply, if the very definition of our injury is we can stand constant sound perfectly, how is a treatment based on constant sound anything to do with us? Whoever exported this thing from acuphene treatment to hyperacusic treatment what was he thinking? One of the tasks of this group will be to challenge sloppy writing on the matter that, say, throws about success stats without refining its definition or quantity or incoherent texts that don't know if they're dealing with phonophobia in one sentence and hyperacusis in the next.
10. Hyperacusis sufferers will suffer from insomnia, not because they need to take drugs, not because they have phonophobia, but because their threshold of sudden sound change will constantly be challenged. Hyperacusis sufferers will obviously have enormous difficulties trying to sleep AND will be constantly woken up. Your best bet is to try http://whitenoisemp3s.com/, and scroll down to Brown Noise, a noise that will drown out the variants. However we're so few, the sound still hasn't been perfected and if you notice Vista will show its ups and downs on the volume chart. Your other option goes right next to the interests of those with tinnitus, is a demo at Tinnitus Masker
http://www.vectormediasoftware.com/
tinmaskerhome.htm
of which I can send you a rapidshare link to a keygenerator, though I still haven't figured out how it works.

This group's only hope is for those who can still find spaces of reasonably comfortable sound. No doubt if you live surrounded by good sound, defined by you, you'll be better off. So it really depends on the niche you had before hyperacusis struck you. The rest of your life will cost you to maintain 100 times what it costs a normal human being, if you're left to your luck. If you have to live with people, isolating hyperacusis will serve to get you respect and not go through harrowing exposures to sound, efforts and self-questioning that go with mixing this condition with this series of silly things. If you have no finances or loved ones and have to live next in poor acustic quality, then it's a horrible injury. If you live with loved ones and not so loved ones, sharing our information on the Internet will help us to establish blatantly evitable actions as agressions and not as part of your retrainment therapy, or some kind of favour that can be taken away. The only equivalent is if we go about with an aeroplane's 120dB in our hands...



One last thing; if temporary hyperacusis, for example, exists, try it out; give yourself some time; check what bothers you; check the definitions, but once a reasonable period of time goes by, you'll only hurt yourself by not establishing your true state.''


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jirimenzel

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Reply with quote  #2 

Quote:
Originally Posted by Rob

This broadband noise consists of a frequency range which exceeds many of the sounds you hear, and over time your auditory system will turn the corner.  In fact, that's exactly what it is already doing. 



Hi Rob,
I was on it for a year. Nothing. Does that mean I'm a misophone, a phonophobe, a skeptic, the wrong kind of patient? Does it mean going to a concert and having my genetically weak ear mowed down was just a neurophysiological fabrication of my cortex? Do most of Jastreboff's patients wear ear plugs in the street? Because I never did so. And if so, does he count convincing his patients to not wear them a success statistic? Was Jastreboff just dealing with soundsensitive and not hyperacusic people? Did he invent the term 'misophonia'? Pardon my directness, please.

There is one thing that the theory could work. As hyperacusis is collapsed dynamic range, listening to an elevated unchanging sound would habituate people. But then how could it ever have begun? Does a misophone just appear overnight? Furthermore, and sorry for editing so late, perhaps many hyperacusics don't know the technical definition and are surprised with how they tolerate blank sounds? I, for instance, invented brown noise to sleep in an epistemological island; i was accused of being irrational and subjective and had no manuals that even gave the sound a name.

One more thing vis a vis Jastreboff. My mate had his tinnitus disappear two days after the concert. Me it's been ten years and still standing. Is there severe and permanent tinnitus as opposed to slight and temporal tinnitus? Same goes for hyperacusis, and if so, do we know anything about all these categories I keep reading stuck together?
 
Sincerely
Juan
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cbBen

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Reply with quote  #3 
Juan,

What are aeroplane's 120dB's?

You are correct that a universally accepted definition of hyperacusis is direly needed. Google it and you find anything but a uniform precise definition.

Good luck,

Ben

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jirimenzel

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Reply with quote  #4 
Ben,
I thought I meant the aeroplane's 120 decibels of sound, no? I'd like to edit this part because it could scare anyone away from what I write; quite obviously there are sounds our family lives with that are inevitable but others that are not, and these seconds ones can't be under negotiation if you're in a fight.

It's a messy piece of writing and I'm asking around how to trim it, if it needs trimming and such.
The spanish wikipedia entry is satisfying because I was very happy to find Internet differentiated changes of sound from sound, something no doctor had bothered to point out to me.
The english one seems to be very competent at pointing out severe hyperacusis is very rare, even though it does say 40% of tinnitus have mild hyperacusis, which may even be true. I'm probably just dreaming and fantasising about some wikipedia guy reading my post and correcting it, but I could have sworn it wasn't there when I looked it up, but no doubt I was looking at one of the infinite number of sloppy pages that got me on a rampage these last few days.
Finally there won't be an accurate definition because there's no interest in there being so. Medical conferences will talk about success and emphasize misophonia and phonophobia, mild over severe and, even though, I haven't looked it up, the exact kind of patient that succeeds. It can get very sloppy indeed if the very thing itself can leave my mate's ear after the concert and not mine, how something that works like that can get accurate statistics in a medical survey boggles me.
 
Juan

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Debbie

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Reply with quote  #5 
Hi Juan,

I can see that you are passionate about what you are feeling & thinking.

It sounds important & I would like to understand it better.

You have said a lot & I think I will understand what you are saying more clearly if you summarize them according to what you feel are your most important point or points.



I would like to comment about one point you mentioned.

Did I read correctly that you define hyperacusis as loss of ability to handle shifts in sound?

I wonder if there are many 'forms' of hyperacusis.

For example, I know well what you may mean about difficulty with sudden sound shifts.
Just one example:

I dropped a dinner plate on the floor the other day & it broke in pieces.
Owwwwww!!!
It seemed that my ear was almost as shattered as the plate.
But at least it was FAST.

On the other hand, early on in my hyperacusis, I discovered I could absolutely not tolerate a next door neighbor's air (constant sound level) conditioning unit outside my window.

Prior to the accident which caused my problems, I liked the cooler sound, if I ever thought of it for even 1/2 second.

It simply reminded me of summertime, which I like.

One day after things got worse & worse with my ears since the accident, I woke up thinking a jet plane was taking off over my bed.

It seemed the hum of the air conditioner had grown monsterously loud & even 'collected' or 'pooled' in my ear as I slept.
So, I closed the window.

But the next nights the humming sound crept in even more, waking me again in both physical & mental agitation.
So, I hung a blanket from the curtan rod.

You can guess how the rest of the story goes:
At some point, I bought earplugs & wore them to bed!

But the humming sound 'soaked' through even them. So, I pulled out a Russian hat, with fake fur & ear flaps, from my winter closet & wore that to bed, over the earplugs.
It was HOT, to say the least.

But that didn't do the trick!
So I brought extra earplugs, the silicone kind you smooth & stick over your ear canals, & applied them across my ear canals, over the foam earplugs.

Next, I balled up t-shirts & stuffed them over my ears & the two sets of earplugs, under the earflaps of the the winter hat.

When even that didn't stop the grating sensations & fullness, then ringing in my ears from that humming sound, I moved into my closet.

When that got too hot,
I got in my car & drove it down the block enough to get away from the neighbor's coolers.

I opened the car windows a bit, & put the seat back & tried to sleep.

When a neighbor knocked on the window & asked me if I needed water or help,
I drove to the parking lot of a nearby public park.
I tried to sleep there, but realized I could be raped or killed.

It seemed there was no way to block out the oddly problematic hum of my next door neighbor's cooler and the symphony of neighborhood coolers; their sounds traveled SO FAR!
& straight through to my hearing mechanisms no matter how many locks & bars I put over my ear holes (?!)

Through those days & weeks, my ENT told me through return phone messages from his secretary (even as calling him & going through the automated phone system of ringing, then being on hold, & pressing buttons, to the beeeep of his answering machine etc. grew more difficult by the day) that my ears were 'normal.'

No matter how I tried to describe my unusual symptoms over his machine, his secretary would call back & say simply that what I was going through was 'normal.'

Later I found out that he was probably not even personally listening to my careful messages & was probably saying this only because of my 'normal' hearing test results.

He had obtained them days after the accident, before things went from bad to worse with my ears.

Turned out that a 40 db high frequency hearing loss would show up on a test monts later, & either was caused by the sound trauma that sent me to him (but was still developing from that) or by the vulnerability to further exposure the injury caused, increased by the wax removal he did, which laid my ears more bare to sound.
But that's another story.


The bottom line:
Changing sounds, especially certain beeps & loud sounds, were difficult, like being shot in the ear with a gun at that point, as I recall, & with lasting 'reprocussions,' no pun intended.

But static, especially low frequency sounds were also deeply problematic, in their own, whole other ways.


Almost a year later, my sound tolerance thresholds have increased a lot.

Drop a plate however, & my ear feels shattered, too.

And while I can now tolerate intervals of low frequency expoure, I still would not want to sleep with low frequency sound, that duration would not work quite yet.
So the fridge is in the garage, & the cooler is still mostly off.

I hope that someday
these frequencies will stop bothering my ears & head, but for now, I am SO RELUEVED to be away from them it's not even funny.

Judging from the many descriptions of symptoms here, it seems that hyperacusis is not 'just one thing.'
Is not caused by one thing, it seems to be a loose category of very variable symptoms.

Symptoms of the particular areas & ways in which a sound, virus, bacterial, fungal, chemical, or other physical impacted our auditory systems &/or central nervous systems.

Whatever our individual problems are, they are nothing if not physically real.

They deserve medical attention, understanding, and customized help.

Much better help - and especially much better avoidance of further harm - than what seems to be medically 'normal' now, apparently at least through most of Europe & the US.

I think it is helpful & important for all of us to share our unique observations & stories, and ultimately paint a picture that can be acknowledged by the medical system.

I hope that you will add your voice.

Sincerely,

Debbie

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DrJ

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Reply with quote  #6 
Juan wrote:

Hyperacusis is most probably caused (99%) by an insufficient blood supply to the cilliar membranes of the inner ear at any given period which result in permanent damage- because they are membranes which do NOT renew unlike in the usual sprain- or by an immediate or accumulative acoustic trauma. There are also a range of other causes that don't include it being an invention of your mind.

---I think this is number 7.  You might want to rethink this one a bit...loss of blood means loss of oxygen which means cell death.  Cell death in the cochlea generally results in deafness of loss of hearing.  Other cases of, say, loss of blood to areas say, due to diabetes or other illness or disease, leads to loss of function.  I would say that H is more of an over-active function or a hyper-active function, like a spasm as opposed to an absent response...so I think this is probably not a good hypothesis for explaining H.  I do agree that H is not an invention of someone's mind or imagination.  It is a real condition and a real problem and deserves real solutions.
 
 
Dr. J

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jirimenzel

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Reply with quote  #7 
Hi Dr J.,

Thank you for your feedback. Perhaps the membranes are traumatised and send distress signals and the overfunction of hyperacusis or tinnitus is that, like when a sprain makes you notice the area more. If it is confirmed (?) that deafness is that loss of membranes, then in H and T it would be trauma, (please bear in mind I'm probably using wild definitions). Also maybe it could be different kinds of trauma. Is it also an area of the ear (EDIT!!!) so small we don't know anything about?

It's a very strongosh kind of statement I made, very mixed up. At its best I was kind of trying to invent a new term, like a new strain of H that had nothing to do with the nervous system. I thought maybe Jastreboff had done it for me by inventing misophonia so I must have gone for it, even though I still haven't completed it.

Hi Debbie,

Thank you very much for your response.
I think I had been accused of everything I argued against in the opening post. so I set out to discredit the central nervous system theory and break the hyperacusis definition into different parts. As I saw there were other terms like soundsensitivity, phonophobia or slight hyperacusia, I went for it.

My experience with doctors was a disaster, as you can notice if you read it between the lines, and my other aim was to build a space to give credit to the patient's own diagnosis over a generic medical procedure. When I finally looked it up on the internet and found 

http://www.espaciologopedico.com/articulos2.php?Id_articulo=978

I was ecstatic with its technical definition of it being changes of sound instead of constant sound because it corresponded to something I'd always had to explain.

I've never had a constant noise problem that can be mildly compared to the sudden changes one. Ear plugs in my case just make me listen to my heart beat, and that would be impossible. The worse episodes were long periods where I wouldn't use brown noise to sleep, and I'd be woken up by the slightest sound. If I may ask, what I don't understand in your situation is how you managed to sleep because in my case without brown noise birds would wake me up at 5am, and so would distant car moves. I have to sleep with my mouth open because air through my nose was too great a change. And what I had day 1 was the same I have 9 years later.

On another note, I also don't know how radical it can get. Some hyperacusic people can become completely incoherent and somewhere I read lots of kids with autism had it, perhaps explaining the autism, I don't know. Even I don't know what I'm on about when I talk about leaving my thesis and taking on the medical establishment above. I probably wasn't even doing either. So right now, I don't know of other people's situations too much, but as for constant sounds I can add what I suspect to be true, that there are so many more with selective soundsensitivity than those with a fixed hyperacusis; Debbie, right now I just don't know what to think of your case perhaps because I lack sufficient knowledge at the moment. What was your level of hyperacusis in decibels? Was it only plates and then at night when you try to concentrate the coolers? I'll give it some thought with these things in mind, not because I'm treating you, of course, but because I want to find out other people's situations.



Yours, Juan.

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Debbie

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Reply with quote  #8 
Hi Juan,

If I understand this part of your post, I agree that misophonia & phonophobia are NOT hyperacusis.

Hyperacusis, plus often additional ear problems, can cause 'aversions to sound,' but reasonably, not neurotically so.
Such as someone who has just had pupils dialated will not want to look into light.
Or someone with a burn will not want to expose the skin to more heat or the sun.


If I understand this part of your post, one of the points that I agree about is that (I will specify adult onset) hyperacusis seems to usually involve actual ear/ 'auditory system' changes.

Local auditory phenomena such as, tinnitus, myoclonus, fullness, pressure, pain, and many others, variable from person to person.

The hyperacusis seems to usually be one of the many 'scattershot' side effects of an actual injury to the physical ear, caused by noise, pathogen, chemical, blunt impact, etc.

The hyperacusis might in some cases be a protective response trying to keep the auditory system sheltered.

I believe the relationship/interplay of CNS & PNS involvement in the hyperacusis pain & discomfort are probably variable from case to case.

And the placement of the physical changes in the auditory system are definitely variable case by case.
For example, some people have true vascular anomoloies, others have choclear problems, problems with the bones & tendons near the eardrum, eustacian tube problems, or combinations & various forms of the above.

In childhood autism, in contrast, perhaps the injury or inborn anomoly (I suspect early CNS injury) may be all central nervous system-rooted, not local to the ear at all. But obviously affecting something in the auditory pathway...just more central.
& probably as well in cases of CNS injury such as surgery to the brain, etc.,
although sometimes anaesthesia itself could again chemically affect the ear & add another factor.

I simply think, in conclusion, that the range of local ear involvement varies a lot from case to case.

When we discuss & try treatment for 'hyperacusis,'
I think the entire individual picture must be taken into account.

'Hyperacusis' is usually one symptom of a larger picture, & the larger picture may play the greater role in the ideal mix of treatments & to what degree they can work.


As for my example of the night time air conditioner sound, I used that only as an example of how prologed, continuous (static) sound physically affected my ear (forgot to mention it caused intense aural fullness & then intense ringing while the fullness was 'unwinding' upon my discontinuing contact with the source of sound) & whatever CNS involvement was also there.
The air cooler example was just one of many - computer, car engine, refrigerator, alongside percussive noises - someone chopping in the kitchen, distant hammering - and high pitched noise - the code getting into the gate, telephone rings, answering machine beeps, register beeps, etc. which physically caused ear problems & pain.

All were physical issues.

They were not phonophobia nor misophonia.

Proof of that is that for my lifetime those sounds were fine, often even pleasant, due to what they 'meant' to me (entry to a gate, calling someone, food ready in the microwave, air conditioning sounds = summer fun).

I had not even had my symptoms for long enough to develop a dislike or 'fear' of any of these sounds.

I discovered they hurt my ears & caused aural fullness & ringing & searing pain, one by one, by surprise, & in total confusion about what could be happening, before I had any chance to begin disliking or fearing them.

In fact I did not dislike or fear those sounds, I kept trying to cope with them & push forwards because my mind could not believe they were causing me such problems.

I even continued to 'like' the sounds but intensely dislike & fear the painful & mysterious symptoms.

I did not have misophonia or phonophobia.
I had pain & intense physical discomforts with certain stimuli.

I reluctantly 'discovered' over several weeks that some things I liked & loved were no longer physically compatible with my ears & central nervous system, and were becoming less tolerable by the day.

As opposed to being fearful or overly protective, it was more like the situation of an enthusiastic skier who kept trying to ski on a broken leg.
And learning with dismay & disbelief that the leg was really broken.


Debbie

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Rob

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Reply with quote  #9 
I agree that misophonia & phonophobia are NOT hyperacusis.
 
Along with hyperacusis, the fear or dislike of sound are components of decreased sound tolerance.

Hyperacusis, plus often additional ear problems, can cause 'aversions to sound,' but reasonably, not neurotically so.
 
That isn't always the case, Debbie.  Sometimes, the fear or dislike of sound can be extremely neurotic behaviors.  This isn't true in all cases, but it is true in some.  In other cases, fear or dislike of sound are natural and understandable -- perhaps even reasonable -- outgrowths of hyperacusis. 
 
The hyperacusis seems to usually be one of the many 'scattershot' side effects of an actual injury to the physical ear, caused by noise, pathogen, chemical, blunt impact, etc.
 
Another theory -- a much better one, in my opinion --  is that hyperacusis isn't an ear thing at all but a brain thing.  One's brain is processing sound differently than it used to. 

When we discuss & try treatment for 'hyperacusis,' I think the entire individual picture must be taken into account.
 
in particular, it is crucially important to be properly diagnosed with hyperacusis by a clinician who is familiar with how to do that and how to treat it. 

'Hyperacusis' is usually one symptom of a larger picture, & the larger picture may play the greater role in the ideal mix of treatments & to what degree they can work.
 
Hyperacusis is usually accompanied by some degree of fear or dislike of sound. 
 
Proof of that is that for my lifetime those sounds were fine, often even pleasant, due to what they 'meant' to me (entry to a gate, calling someone, food ready in the microwave, air conditioning sounds = summer fun).
 
But things have changed, Debbie, with respect to the way you process sound.  I'm not sure how helpful it is for you to use proof from the past to fully explain your responses at present. 

I had not even had my symptoms for long enough to develop a dislike or 'fear' of any of these sounds.
 
Have you discussed your views on this with a clinician who is conversant with these concepts?  It could be very helpful to you to do so.

I even continued to 'like' the sounds but intensely dislike & fear the painful & mysterious symptoms.
 
Seems perfectly natural that you would. 

I did not have misophonia or phonophobia.  I had pain & intense physical discomforts with certain stimuli.
 
Has the pain and physical discomfort caused you to do anything differently with respect to sound? 

Rob
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Debbie

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Reply with quote  #10 
Hi Rob,

You quoted references to my reactions to sound during my first days following a physical injury to my ear.

I stated that adult hyperacusis seems to often onset as the result of a physical event - acoustic, pathogenic, chemical, or other impact (even an internal one, such as a vascular change) - that not only triggers 'hyperacusis' but additional conditions.

What is known about many, if not most, of the ear & neurological conditions we discuss on this board, even 'hyperacusis,' is far from complete.
How hyperacusis may interplay with other conditions acquired through the event, or which triggered the vulnerability
is an even larger question.

In the early days after my acoustic trauma, I was physically injured.
The oto-neurologist I saw, and a colleague of his I spoke with by phone who is a specialist in hyperacusis & tinnitus, agreed that rest from sound was prudent, because fibers in the tendons near my eardrum were likely torn.

In fact I was also actively incurring hearing loss, which later became apparent.

But I needed none of these formal assessments to know that sound was worsening a serious physical problem in my ear.

Acute, adult onset hyperacusis, in my opinion, does not occur in a vaccuum.
It is a symptom worth investigating in terms of what lies 'beneath.'
An excellent diagnostician, in my opinion, will consider the presence of an underlying pathology, and seek to treat any precipitating factors before 'treating' (acute stage) 'hyperacusis'.

It seems that acute hyperacusis may be a response to something else which needs attention.

In my particular case, I believe that following my instinct to recouperate in a sound-sheltered environment, with controlled rehabilitation to sounds, would have allowed my hyperacusis symptom to stabilize & very possibly resolve while preventing further impacts which may have contributed to hearing loss - and further hyperacusis - during a vulnerable phase for my auditory system.


It is now almost a year later.
This (chronic) phase is totally different than the acute one.


I am using a sound therapy, and plan to bring in another CD player on which to simultaneously play the Pink Noise CD.

I am using somatic interventions to sooth & strengthen both the peripheral and central nervous systems, and cognitive therapeutic techniques because the body & mind are interconnected.

I'm looking into further medical advice as to whether it could be helpful or important to investigate the cause of my pulse-synchronous tinnitus, in case there is a medically treatable anomoly.

I've come a long way from whare I was, and continue to make headway in terms of what I can physically tolerate with comfort in terms of sound.

If after using the Pink Noise it seems I am able to gain a new kind of improvement, I may add white noise.

I think optimal treatment for recovery needs to take the whole picture into account, and be rooted in awareness of both established and less widely considered approaches,
and is probably multi-pronged.
I also believe that what led to hyperacusis, and any additional conditions aquired simultaneously, may need attention & possibly treatment as well.

I don't believe that any clinician or researcher has the complete understanding of 'hyperacusis,' or of the ways it intersects with the additional auditory conditions & history any given person has.
Ultimately, finding what works best for any given person may be a process of trial & error.

I am glad that TRT seems to work for many people & I'm also glad that there may be hope through other forms of sound therapy and/or combinations of approaches.

Debbie

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Rob

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Reply with quote  #11 
The oto-neurologist I saw, and a colleague of his I spoke with by phone who is a specialist in hyperacusis & tinnitus, agreed that rest from sound was prudent, because fibers in the tendons near my eardrum were likely torn.
 
Debbie, did they conclude this because they thought having hyperacusis means fibers in the tendons near your eardrum were likely torn or did they conclude that the torn fibers were something other than hyperacusis? 

But I needed none of these formal assessments to know that sound was worsening a serious physical problem in my ear.
 
When you refer to a serious physical problem in your ear, what do you mean?  Are you referring to hearing loss, to hyperacusis and tinnitus, or to something else?  A formal assessment from a clinician who actually examines us and knows how to diagnose and treat hyperacusis is essential, so that the correct thing is being treated.  At Emory's tinnitus and hyperacusis center, for example, I'm told the number of people who were convinced they had hyperacusis and didn't need a formal assessment to know that was contradicted in a surprising number of cases when these folks were examined and it turned out they did not have hyperacusis.  They had another challenge, that also required treatment, but just not that one.   

An excellent diagnostician, in my opinion, will consider the presence of an underlying pathology, and seek to treat any precipitating factors before 'treating' (acute stage) 'hyperacusis'.
 
No one disagrees with that.

It seems that acute hyperacusis may be a response to something else which needs attention.
 
Yes, sometimes that's true.  Sometimes it's not true. 

In my particular case, I believe that following my instinct to recouperate in a sound-sheltered environment, with controlled rehabilitation to sounds, would have allowed my hyperacusis symptom to stabilize & very possibly resolve while preventing further impacts which may have contributed to hearing loss - and further hyperacusis - during a vulnerable phase for my auditory system.
 
Trying to recuperate from hyperacusis by sheltering ourselves from sound, rather than letting sound in, is a poor approach.  The idea that to do otherwise may contribute to hearing loss is not correct.  Nor will exposure to sound contribute to further hyperacusis; in fact, spending a great deal of time in "a sound-sheltered environment" contributes to even greater decreased tolerance of sound -- meaning hyperacusis and phonophobia or misophonia. 

I'm looking into further medical advice as to whether it could be helpful or important to investigate the cause of my pulse-synchronous tinnitus, in case there is a medically treatable anomoly.
 
Wise thing to do.  Good luck. 

If after using the Pink Noise it seems I am able to gain a new kind of improvement, I may add white noise.
 
What do you hope to gain from using actual white noise to treat hyperacusis and where do you plan to find actual white noise?

I think optimal treatment for recovery needs to take the whole picture into account, and be rooted in awareness of both established and less widely considered approaches, and is probably multi-pronged.
 
Which less widely considered approaches do you mean?  Craniosacral therapy?  That might help some with anxiety, but not with tinnitus or hyperacusis. 

I also believe that what led to hyperacusis, and any additional conditions aquired simultaneously, may need attention & possibly treatment as well.
 
Sure.

I don't believe that any clinician or researcher has the complete understanding of 'hyperacusis,' or of the ways it intersects with the additional auditory conditions & history any given person has.
 
No one believes otherwise.

I am glad that TRT seems to work for many people & I'm also glad that there may be hope through other forms of sound therapy and/or combinations of approaches.
 
I've never tried TRT.  At the time, the broadband noise presentation used in TRT was much too ambitious for me and was painful to hear.  Had it not been, I would have taken that route instead of devising my own approach.  I recommend TRT because it combines two things that are very important for hyperacusics.  Sound therapy and counseling.  I recommend it over and over and over again because many folks on the board do not do either of these things.  But if folks who come here should hear it often enough, some will try.
 
Rob     
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Debbie

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Reply with quote  #12 
Hi Rob,

I appreciate your efforts to urge people get the best possible help for their conditions.

And also I appreciate your desire for people to be properly diagnosed.

In answer to your question about whether my doctors thought frayed tensor tympani or stapedial tendons were themselves part of my hyperacusis, no.
I am wanting to make clear that multiple, unique factors combined in my situation, as I believe is the rule, not the exception, with adult onset hyperacusis.

The degree of my hyperacusis, in terms of sounds being loud, mirrored the points in time where excruciating 'blows' to my
eardrum area & probably coclea through sound apparently caused physical injury.

I believe while such real injuries were actively ongoing, the nervous system's willingness to 'release' additional, central nervous system based hypersensitivity to sound was made more dificult.

And I believe acute hyperacusis might be especially resolvable prior to entering a chronic stage if a triggering factor or factors are able to be addressed.

But we are talking about treatment of chronic stage hyperacusis.

At this stage, in my opinion, all of the above factors might have been resolved...or might be lingering in a partially resolved - similarly chronic state.

In the later case, in addition to any medical explorations which may be reasonable, I believe treatments which can support the body & mind to cast off stresses so that the body's natural balance abilities can be maximized can be an integral part of recovery.

Perhaps our differences of perspective on what might go into an ideal treatment plan is rooted in how we perceive the role of the rest of the body & precipitating factors in involving, & inter-relating with, the central nervous system, including what might be chronicaly 're-stimulating' hyperacuisis.

Another difference of perspective seems to be about the potential usefulness of certain approaches, such as somatic, in health in general, including in the health of the central nervous system.

While the prevailing medical philosphy is to break down systems & symptoms piece by piece, highly regarded practioners & clinicians in every field of medicine, including ENT/neurology/oto-neurology, fall along a continuum of holistic perspectives.

Why is there a devoloping 'holistic' & 'complimentary' movement in even mainstream medicine?
Because the piece-by-piece model does not mirror the workings of living beings.

I'm happy that some may have received thorough help using broadband therapies, or those & the counseling that often comes with TRT.

I simply wonder if broadband therapy & counseling on hyperacusis itself may be one part, & not the whole treatment for some, and not exactly the right treatment for everyone.

There really needs to be more comparative data tracking many aspects of history & recovery for those with hyperacusis.

& until then, depending on the type of medical model that seems to make sense to any given person seeking to recover, it seems there are combined approaches that one could try.

You asked where I would get the 'white noise' I might consider adding if Pink Noise seems to help in a new way from where I now am, yet seems to plateau.

I figure that if that point comes, & I want to find potentially 'therapeutic grade' white noise, I will consult with those who are experienced with & seem succesful at providing white noise for this purpose.

Debbie

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Rob

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Reply with quote  #13 

I'm happy that some may have received thorough help using broadband therapies, or those & the counseling that often comes with TRT.
 
Many folks with hyperacusis receive help through broadband noise therapy, exposure to everyday sound, and guidance from informed clinicians whether using TRT, pink noise, or some variant.     
 
I simply wonder if broadband therapy & counseling on hyperacusis itself may be one part, & not the whole treatment for some, and not exactly the right treatment for everyone.
 
These things are the right treatment for hyperacusis, along with exposure to external sound that one can tolerate.  The treatment for fear or dislike of sound requires a different approach.  By the way, I'm not suggesting that broadband noise therapy alone will re-establish a person's sound tolerance.  But I do think it's an extremely important piece, because it provides a constant, broad band of sound to the auditory system and tolerable sound is precisely what hyperacusics need.       

I figure that if that point comes, & I want to find potentially 'therapeutic grade' white noise, I will consult with those who are experienced with & seem succesful at providing white noise for this purpose.
 
Debbie, there is no such thing as therapeutic grade white noise.  White noise is white noise.  It consists of equal energy per frequency and is much more difficult to tolerate than pink noise.  Most hyperacusics would have a problem using real white noise to treat hyperacusis.
 
Rob   
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Debbie

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Reply with quote  #14 
Rob,

Thank you for the clarification on white noise.
If you don't mind my asking, what is the difference between Pink Noise & the broadband that is used in TRT?
Also, I'm wondering if the broadband frequency used in TRT is adjusted for the individual.
Do those without hyperacusis get the same broadband as those with hyperacusis?
Are adjustments made for those with hyperacusis who may have different frequency tolerances than another person with hyperacusis?

Debbie

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Debbie

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Reply with quote  #15 
Hi Rob,

I just noticed in another thread that you explained that TRT uses neither white not pink noise.
Thank you for that explanation.

I'm know sounds of traffic & such things as fans & air conditioning units, and airplanes, basically, industrial sounds, must have been analyzed.

What kind of noise do these produce? Are they a form of broadband?
Do they include white noise?

Thanks,

Debbie

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Rob

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Reply with quote  #16 
Hi Debbie.  Saw your great questions late last night and will find some time on Monday to answer them.

Rob 
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Rob

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Reply with quote  #17 

Debbie writes --
 
... what is the difference between Pink Noise & the broadband that is used in TRT?
 
Pink noise is a type of broadband noise.  The presentation used in TRT is another type of broadband noise with different characteristics.  Think of broadband noise as a presentation that covers a lot of ground, like a football field.  Pink noise makes its way up the field differently than the broadband noise used in TRT.  In TRT, depending on the make and model used, some wearable generators go up to around 8 kHz and others may go to around 10 kHz.  The pink noise offered by the H Network goes up to 22,050 Hz.  On the other hand, there are peaks in amplitude in the TRT presentation that can be very helpful for a hyperacusic or tinnitus sufferer and these peaks in amplitude are not found in pink noise.  So, without getting overly technical about it pink noise and the TRT presentation are very different forms of broadband noise.  Both can be used to treat hyperacusis or tinnitus.  There are advantages to each.     
 
Also, I'm wondering if the broadband frequency used in TRT is adjusted for the individual.
 
Only in terms of hearing loss and in the make and model selected by the clinician.  For example, the generators produced by General Hearing Instruments has a model for folks with good hearing, another one for folks with some hearing loss, and a third model for folks with a lot of hearing loss.  The presentation for folks with hearing loss accommodates the loss in hearing, but it's a very general and one-size-fits-all sort of thing.   

Do those without hyperacusis get the same broadband as those with hyperacusis?
 
Yes.  Folks with tinnitus would use the same broadband noise as those with hyperacusis.
 
Are adjustments made for those with hyperacusis who may have different frequency tolerances than another person with hyperacusis?
 
Great question.  No.  Not commercially.  I was able to do that for myself because I was familiar with pink noise and know how to manipulate it (filter it).  My view is that those folks with hyperacusis who do not have success using broadband noise would do much better if they were working with a broadband noise presentation that is well-suited to their tolerance.  Imagine, for instance, that someone had trouble tolerating pink noise from 6 kHz and up.  Well, that would mean they wouldn't be able to use the standard pink noise CD, which incorporates frequencies all the way up to 22,050 Hz. 

I'm know sounds of traffic & such things as fans & air conditioning units, and airplanes, basically, industrial sounds, must have been analyzed.  What kind of noise do these produce? Are they a form of broadband?
 
Yes, but the bandwidth is less broad of a band.   

Rob 
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Debbie

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Reply with quote  #18 
Thank you for answering these questions, Rob.

Do you mind if I ask you another question?

To best 'bone up' for such sounds as vaccuums & heavy traffic, which broadband might be best?

Or do both pink & 'TRT' broadband contain an adequate spectrum for this?

Or, is raising tolerances not really considered to be a function of the scope of a 'bandwidth' but with some other element of the sound, such as time or volume?

Thank you again,

Debbie

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LynnMcLaren

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Reply with quote  #19 
Hi Debbie, ((( Smiles )))
 
Your hypercusis seems to be in many ways alot like mine was..
 
Quote:

It seemed the hum of the air conditioner had grown monsterously loud


I never wore earplugs in bed though ..
I took trazadone for about over a year and after that was woken up if an airplane was around ect..
And covered my ears went under the sheets at my worst of.
And I tried not to wear earplugs in my room but know about haveing to go into the closet with muffs expecially if my one child happened to be yelling screaming on the other side of the door ect..
She is severe/ mod autistic and went through a bad phase at that time..
It was awfull that I had to stay away from my own children to recover or survive back then..
And let others take over her care..
Didn't have to deal with an air conditioner but my husband seeing it was very hot in the room summertime ect..
Wanted to put a fan in my room and and I said no thats O.K..
Anything but that torture..
He was puzzled because it was bacon hot in there..
It was awful but I could not tolerate it then..
And it seems like it was pure torture for you too..
It was so bad I was tortured by sounds comeing right through the walls at times..
It was unbareable but I survived it..
And then over time as my hypercusis improved..
The noises went away or got better..
Physical & Mental agitation..
I'd call it Anguish..
 
Quote:
their sounds traveled SO FAR!
& straight through to my hearing mechanisms no matter how many locks & bars I put over my ear holes (?!)



 
Ya.. I found that out even though I really believe it would have been much worse & louder without..
Yet.. Just knowing there was just no other way out for me..
Pushed me to do whatever I could try to do to try to get better.. 
No matter what..
 
Quote:
So, I hung a blanket from the curtan rod.

 
Yes I wrote about one I did on a certain smaller window put up a blanket with yellow smiley faces on it..
When the sun shined through it or just light..
The faces lite up and and keep me company and helped me through trying to do sound therapy at my worst of..
Seeing that smileing back at me like a friend..
It helped me cope..
 
Even if it was from scratch nobody else heard it playing..
But I did it it was heard to me..
I sank that low..
But I eventually got better and you have improved too..
I wish everybody would improve most do though..
But I understand the drone the vibrational & rumbling hearing of sound's..
I understand it well and who could believe that could happen to anybody but it is so true it can...
And it does..
Glad your better now..
It takes time I know it but it's so worth it to try to get well..
Even when things seem like they well never get better..
Because it's so bad..
But it can overtime.. ((( Smiles )))

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Debbie

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Reply with quote  #20 
Hi Lynn,

Thank you for adding your thoughts about such memories.

As I leave those nightmare experiences behind, back around the loop of some strange corner of reality that can be so hard to explain, I want to acknowledge them just enough to put them in the past.

Writing about them is a way to see that now is different & to continue to move on.

Do you feel that also?
That the experiences need to be put into context in order for you to move on?

Debbie


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LynnMcLaren

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Reply with quote  #21 
Hi Debbie, ((( Smiles )))

Yes.. It's nice to be acknowledged and back then with theses kinds of expirences lots of people who do not expirence it like that can't understand it as that..
Hyperacusis is such a strange expirence nothing really compares to it
not even tinnitus though tinnitus can be expirenced far from the norm as well..
While going through the worst of it the realty of it is so strange and a person is just trying to survive it , the expirence..
It's hard to think straight /right when sounds are comeing at you like that..
But once one gets alot better..
It's easier to think straight and reflect on the expirence..
Of it all..
Put it all behind me...
In a way I have but in a way it's not totally gone for me.
I am far from the norm as I still have had problems with my ears..
Though rare compared to my worst of or better of..
Even though I have pushed myself overtime to go more places and try more things..
I have hit a wall over the years which really concerns me about going to the dentist and haveing dental work done..
That I want to do..
Not cleaning no problem with that..
Some of the cleaning tools they use no problem with that..
But the drill may be a problem for me based on vibrational noise duration plus high pitched in loud sound..
I am not in an emergency situation but am in a prolonged situation where I should get it done..
But based on cetain expirences I have had not sure how it would turn out for me there's always a risk to it for thoses who have expirenced bad H..
And to get sick again would be a hard thing for me because of the care takeing I have to do for my children..
I had to stay away from them for a awhile while sick and missed being there with them...
Young kids grow up so fast..
In different degree's over time..
Especially the one who needed me the most..
And still does..
I just don't want to go back to that again and it's a possibilty that could happen..
Maybe temporarily maybe long term..
If it wasen't for being depended on so much I guess the risk of going back to that wouldn't be so bad..
But because of some of the expirences I've had over the years shows me it could be a possibilty that I still could be vunerable to that..
In the right situation otherwise pretty much I do O.K..
It's just certain  things I would rather not do if I could help it..
For good reasons I believe..
I was vunerable to this condition in the first place and not everybody is as it's pretty uncommon so that does put me in the higher risk zone then others who have never come down with H before..
Or even bad tinnitus..
I do believe..
So it's hard to put it totally behind me as it's not..
Not 100 percent..
But mostly better..

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LynnMcLaren

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Reply with quote  #22 
Plus.. ((( Smiles )))

I have 8 fillings in my teeth..
All in the back teeth..
2 on bottom two on top on each side..
It's way past the expiration date as I've had them in along time now.
And they don't hold up well forever.
Plus besides that, there probably not good for my health haveing them in there.
Most likely not it seems.
Wish I thought of that way pre T pre H..
But who knew I was going to get sick???
I didn't plan for that.  
Who does ??
Thats alot of drilling..
One can just stay away from fireworks or live indoor concerts or other loud places..
Just avoid that and still have a productive life..
But it's hard to just avoid the dentist..
Thats what keeps me in limbo, held up.
It's always in the back of my mind.
The what if..
How well will I hold up under that ??
Only thoses who have went through bad H or are going through bad H can understand that concern..
Who else could I talk to about this??
Expecially if it doesn't go that well..
Otherwise besides a few little things..
I'm doing good..  

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Rob

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Reply with quote  #23 
Debbie,
 
I made a number of changes to this post, made a few things more clear, and removed some other stuff.  I'm reposting it here, so you won't miss it.
 
Do you mind if I ask you another question?
 
You're asking good ones. 
 
To best 'bone up' for such sounds as vaccuums & heavy traffic, which broadband might be best?
 
Either will get you there over time, but it requires investing a lot of time in it and a lot of patience. 
 
Or do both pink & 'TRT' broadband contain an adequate spectrum for this?
 
Yes.  Let's go back to the GHI generators I mentioned earlier.  The broadband presentation of the NM model generators, which is the model that company has for folks with either no hearing loss or very slight hearing loss, contains a small increase in amplitude just below 3 kHz and a big increase in amplitude at 6 kHz.  This is actually very good for folks with hyperacusis to expose themselves to.  Think of the treatment as putting the sorts of sound one would encounter in daily life straight into your auditory system, but unlike that sound because it has no dynamics -- no soft and loud.  It therefore provides an excellent way to begin to retrain the brain so that, once again, we can tolerate sounds which live in this frequency range.  With the GHI generators, the high-end is around 8 kHz.  The Network's pink noise CD doesn't contains those increases in amplitude, as it is a different kind of broadband noise presentation, but it contains an enormous frequency range -- from 1 kHz to 22,050 kHz.  So, we're talking about two different kinds of broadband noise presentations which will help many hyperacusics to begin to re-establish sound tolerance.   
 
Or, is raising tolerances not really considered to be a function of the scope of a 'bandwidth' but with some other element of the sound, such as time or volume?
 
It has to do with the bandwidth of the presentation, the amount of time the broadband noise is used each day, the delivery system used to play it, how directly the broadband noise is used in proximity to the ear, as well as daily exposure to as many different kinds of auditory environments that we can tolerate no matter how few that is at first, keeping some sort of background sound going at home including in one's sleep so that we're not in complete quiet, and working on any associated fear or dislike of sound which develops in reaction to the fact that it can hurt to hear sound we once took for granted.  Treating phonophobia or misophonia also requires a great deal of patience and time, as well as a different strategy than the one used to treat hyperacusis.  The volume aspect is an interesting question.  In TRT, the volume is set pretty low.  In my own therapy, I consciously worked up to using comparatively louder volumes, but I always keep two rules in mind: 1.) It can never, ever be the least bit uncomfortable and 2.) The volume must be set so that I can always hear whatever sounds are in my external auditory environment.   
 
Thank you again,
 
Anytime.  I hope it will get you thinking about this sort of approach.  That's not all there is to re-establishing sound tolerance, but it's an important part of it when done properly - and that's why it's best to do so under the guiding hand of an informed clinician.  I was sorry to hear you had a rough couple days with all that loud stuff going on outside your home.  The key, in my opinion, is to treat the condition so that you can live comfortably in your own home as well as outside it. 
 
Rob
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Debbie

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Reply with quote  #24 
Rob, Thank you for taking the extra time to respond to my questions.

I will read through & seek to understand more about your input over the next couple of days.

Sincerely,

Debbie

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lcosty

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Reply with quote  #25 
Lynn,

Have you had any exposure to the high speed dental drill since you came down with H/T years ago?

Larry
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LynnMcLaren

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Reply with quote  #26 
Hi Larry, ((( Smiles )))

No, I haven't had any cavities so I have not had my teeth drilled long before T&H and not after either.
I've only had my teeth cleaned with the cleaning tool when my H was much better..
One time when my H wasen't as good I went to a dentist and would not let him use the cleaning tools ect.. and had him clean my teeth manually..
I was so resistent and fussy about it he did not want me for a patient..
Never saw him again but was refered to another dentist eventually by a childrens dentist who does also clean difficult special needs children's teeth..
My childrens dentist....
And this referred dentist was more understanding and patient with me..
One time I considered going to see the Dentist for Cowards..
No kidding thats what there ad said and they have an all purpose electric drill the kind they use in europe and he said it was listed at only 66 decibles..
I thought about it but it over an hours drive away..
My local dentist last time I saw him turned the drill on for me not real close but close enough that I could hear it and that thing is loud..
I thought hmmm.. I don't know if I could handle that noise..
And after we talked on the phone about maybe doing two teeth at a time..
Two teeth and seeing what happens..
I thought about it but then I'm trying to figure out what the perfect time would be just in case..
When school is in session not close to any school holidays & summer would be a bad time...
Maybe winter or the rainy season when things are much slower..
I need to make an appointment for cleaning again though..
I missed my last cleaning suggested date and the dentist probably wonders why I missed it..
I'm not total sure myself been to him many times before..
It's probably because I'm so undecided about it right now..
I'd rather undergo the all purpose electric drill but they are very hard to find..
The dentist checked it out for me and he only found one dentist pretty much locally who uses that kind..
I read about a method of picking it out on another message board on a dental forum..
That was awhile back will search for it again where exactly that post is..
But who does that??
Can't remember if there was a link on that one..
For thoses kind of dentists..
It would be neat if they just could dissolve it somehow or they would just fall out..
One did long long time ago and I had another silver/merc filling put in..
Thoses heavy duty metalic things are going to be hard to get out..
Can't use dental laser on thoses unless there is a new method out there that I don't know about yet..
Just need to see the right kind of dentist though the one I have now is very nice his drill is pretty loud.. 
But drilling never bothered me or seemed too loud pre T & H when I had theses put in long ago..
No problem at all back then.
I'm just not sure how that would work for me and I've been doing so good too..
Just something I am not looking forward too at all.. 
I'm very unsure about it..
How that would work for me.
Plus, ((( Smiles )))

This is an interesting dentist..
But too far away from me..
But another thing I have to think about..
Dr. Medlock follows the I.A.O.M.T. guidelines for safe removal.
Dr. Medlock feels that utilizing 4 filter systems in each opertory creates one of the most well equipped offices for dealing with Hg amalgam removal.

http://medlockdds.com/services.php

Filter systems..
I wonder what that sounds like??
Probably the same as the cleaning tool & thats no problem for me now that my ears are much stronger to deal with that...
It's the drilling thats very loud and causes vibrations....
Holistic Dental Association...
Got to read up more on that tommorrow.. 

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lcosty

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Reply with quote  #27 
Hi Lynn,

I think you are wise to be wary of the drill. When I first came down with H and I was reading about how it would impact my life what really upset me was the problem with the drill.That's because I was in the process of having extensive restoration work done on my upper teeth. In the months preceding H I had a root canal and two crowns done(all out of pocket as I didn't have insurance,cost over 2 grand).That was just the beginning as I was planning on having more bridgework and possibly another root canal.So there I am reading about how the drill is so difficult for people with H and I'm thinking,Oh great,how I am I ever going to get all this work done.Well,I put off going to the dentist also but when I improved some I decided to try a cleaning. That went perfectly fine the polisher wasn't any problem at all.Then a few months after that I bit on something hard and chipped a tooth. The tooth was broke pretty bad and I knew it would require a lot of work to fix and there was a sharp point that was bothering my tongue so I figured this would be a good opportunity to see how the notorious high speed drill sounded.So I asked my dentist(who by the way is very kind and understanding)to just try "rounding off" the sharp point of the broken tooth.I brought along a pair of muffs and put them on.Well,the instant that drill hit my tooth...WOW!!! That was the most piercing,sharp sound that I EVER experienced in my life!!! I had her stop immediately.Then I tried it without any protection and same exact thing. I didn't notice any difference with or without ear protection so it is absolutely true that most of the sound is conducted to the ear right through the bones.I told my dentist that if she would like to know what that *#@* drill sounds like to me,to take two smoke alarms,tape them tight against her ears and activate(of course she knows better than to do that but I think she got the picture).
Needless to say the high speed drill will not be allowed inside my mouth.I have heard of others using a 5 seconds on 10 seconds off method but because I need so much work done it would be totally foolish for me to even attempt.I guess dentures are in my future.
Which brings up a thought(or wishful thinking).I realize that a true cure for H is probably light years away because of the complexity of the auditory system/brain but I wish someone could maybe come up with some device that could block or interrupt the electrical signals going from the inner ear to the brain.So if you have a situation like I am in where extensive dental work needs to be done you just activate some kind of implanted device that would  block electrical transmission(making you temporarily deaf) and when the work is done switch it off and hearing back! This would get around the problems of sound getting to the inner ear by body conduction.I could use it also if I have to use something like a chainsaw,hammer drill,circular saw stuff that is too loud even with max ear protection.I could take a ride in a small plane again,go to an indoor sporting event where there is
 loud screams and cheers and buzzers,go to the fair where the sounds of the rides,live entertainment,etc. is probably too much even for ear plugs. It would give us an chance to experience those loud environments again even though we would be temporarily deaf while doing so.
Getting back to the drill.A while back I went to the oral surgeon to have that badly broken tooth removed and I told him about my condition.I asked him if he thought he would have to use a drill to remove it and he said probably not.He told me that they use an electric handpiece which he said does not spin at the same RPM's that the air-driven high speed drill does.So I would assume that their drill is not quite as high pitched as the regular dentist drill.Too bad there aren't at least a few dentists around that use this type of drill, who knows,maybe dental work would be possible for people like me who need a lot done.
Anyway Lynn, you could try what I did. Maybe the dentist could find somewhere in your mouth to do a small "test run" to see how you do with it. Hey,there are others who are able to do it so who knows maybe it wouldn't be too bad for you,you know when it comes to H not everyone is bothered exactly the same.
If and when you decide to give it a try good luck and let us know how it went.

Larry
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jirimenzel

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Reply with quote  #28 
Quote:
Originally Posted by Debbie
Hi Juan,

1. The hyperacusis seems to usually be one of the many 'scattershot' side effects of an actual injury to the physical ear, caused by noise, pathogen, chemical, blunt impact, etc.



2. As opposed to being fearful or overly protective, it was more like the situation of an enthusiastic skier who kept trying to ski on a broken leg.
And learning with dismay & disbelief that the leg was really broken.


Debbie


Hi Debbie,
Sorry I don't know how to separate the quotes. Thankyou very much for your feedback. I'm not sure how to respond and I'll read the thread all over when I have the time or strength. These two points, I hope I haven't unfairly isolated, are interesting to me. I agree with them both. It serves absolute logic that hyperacusis is something that happens to the ear and not to the brain because so many of our traumas are acoustic or ototoxic, including mine. Until I'm convinced otherwise, other than having had my pain discredited, TRT doctors have only given me cruel sophistry. They have not mapped out their patients well into coherent categories and play with something they know very little about by applying theories with no correspondance in reality. For something that is so incredibly different for one person to the next, for something that disappears in one person and not in the next, instead of a theory greencard,I'd like to see an excellent paper, with statistics and accurate reports coupled with honest interviews that'll discredit the bullying tactics I saw in my experience with the couple of doctors I found with this treatment. I would like information that defined the rate of improvement of tinnitus only sufferers, what degree of tinnitus they had to start with, where they caught the tinnitus, why the improvent statistic is so much lower in hyperacusis, what thresholds of hyperacusis improve and to what extent and where the injuries of these improved cases of hyperacusis were originally contracted, or why it cannot be left alone as something without a cure, like deafness.

I agree fully with the second point, too; it really is like skiing with a broken leg, getting up again, falling down and I think we desperate and incoherent hyperacusic sufferers fall prey to facile psychological doublespeak to avoid the blatant truth that this is just what it is. For example, of course we get depressed over time and give up, but this isn't the hyperacusis getting worse; it's just the patient giving up.

I'm quite obviously speaking a lot from personal experience and I've never had phases where something bothered me more one day than the next. My experience with hyperacusis has been purely mathematical; it's pain and if somedays it hurt less it was because I put enormous amounts of effort into it, which basically meant having an optimistic attitude to pain, predicting the sounds and paradoxically just getting used to pain, and this circle shouldn't belong to psychology if all it can give us is 'get used to pain and it will hurt less'. What I don't know is the degree of pain it is compared to other patients, all I know is a certain decibel level has always hurt me.

Yours, Juan

On a sidenote, the facebook group I opened up is now called ''Severe Hyperacusis'' as I continue to try to understand this. I have also had quite a negative response; I haven't asked why, but one of the two Hyperacusis facebook groups I recommended it to rubbed out my link to it and one of the two people I asked who I thought might have my threshold answered me without saying why he wasn't joining. My hypothesis is because my outlook may be very negative, though in my eyes pragmatic. I have also modified what I wrote above over here, but haven't modified this version yet.
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Debbie

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Reply with quote  #29 
Dear Juan,

It sounds like you have had some very frusterating & demoralizing experiences with the doctors you have seen for your hyperacusis.

It sounds as if you did not feel that they listened to you.
Were there any doctors who you felt understood or sincerely tried to listen to you?

I'm sorry for the harm that inadequate and/or not compassionate care has caused to you.

I also feel that the doctors I saw were not prepared to give me the help I needed.
This was both due to not knowing about the conditions & to not 'knowing what they did not know' but acting authoritatively anyway.
Especially with one, I felt misled into thinking he was giving me educated advice - when he was not.

One thing I hope you can help bring to light is that doctors can help much more by listening to patients, and not just looking up from a book.

A great doctor, in my opinion, will know when he or she 'does not know' & admit to not knowing.
Also that doctor will seek to increase knowledge all the time, placing as much emphasis on reading & searching as on carefully listening to each patient.


As for hyperacusis being an 'ear' issue, versus a central nervous system one, in fact I did not mean to say that exactly.

Rather:
It seems to me based on reading the boards & the archives here for some time that adult onset 'hyperacusis' usually
onsets along with other symptoms &/or conditions, and is triggered by physical causes that affect the ear.

Systemic viruses that seem to go on to affect the ear, local fungus, bacteria, physical impact, sound, nearby muscle abmormalities, TMJ, electrical shock through headphones, these are just a few of the local ear impacts I have noticed that people have reported on this board.

Many have also reported no obvious ear injuries, & instead 'spontaneous' events that might or might not have coincided with strange systemic symptoms.

Either way, LOCAL ear issues of many kinds began.

Who knows what CENTRAL effects the germs or other stressers were also having?

As I think (?) you said, there are so many possibilities & varieties of what could be the case per person.

The perception of loudness seems to be based in the central nervous system...
but what caused the changes to occur may be 'whole body'/'whole system' related.

In my opinion, the initial 'triggers' need just as much exploring as the resulting 'symptom' or, as with most adult onset hyperacuis, 'symptoms.'

Because, MAYBE in some cases 'the damage is done' & the original cause is no longer a factor.

But in other cases, MAYBE centally-located 'hyperacusis' is a side-effect of another issue that is both physical treatable.

Furthermore, perhaps treating an 'underlying' condition might not just allow or help the body to 're-think' the hyperacusis response.
Perhaps, in fact, carefully treating any unresolved 'triggering' issue that may still be present & treatable might help the health of the entire body.

I can think of examples of what but must attend to 'non board' things & will return.

Sincerely,

Debbie

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LynnMcLaren

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Reply with quote  #30 
Hi Debbie, ((( Smiles )))

But for static like sounds being a problem..
I had that problem before what I consider to be classic H..
With my tinnitus..
My tinnitus became very reactive to static like sounds.
Certain lights, bus car engines, my fireplace blower, computers, water ect..
From an alarm type ringing tinnitus to sound sensitive static reacting tinnitus..
Had that with my tinnitus and the H..
I stopped takeing showers not because of my hyperacusis..
Because of my tinnitus..
Though showers with hyperacusis would have been a can't do as well..
It was a double reactive sound trauma whammy..
In dealing with this both like that at one time..
My tinnitus is no longer what I consider reactive like that anymore..
Could my tinnitus still be set off by attending a louder event yes..
Or just set off, my tinnitus is more up and down..
But it doesn't react to every static like sound it comes into contact with like a magnet anymore or other sounds that it seemed to react to when it worsened..
Don't want to ever go back to that if I can help it..
This is much better...  
Quote:
Oh plus just to add..
You said something about the central nervous system and have talked about acupunture..

I read this on another message board and this was interesting reading..
 "but also nerve damage. I had such excusiating pain and numbness that all I could do is drink liquids and purees.
Well guess what , I went to a very good acupuncturist who is also a naturalpathic doctor who relieved quite a bit of the pain and numbness just from one treatment!!! So far it feels alot better!! He said it should take about 6 sessions before all the nerve damage is gone.

He explained the cause and effect of everything and how the Trigeminal nerve is the one that needs the acupuncture first since its the main nerve that branches off to the other nerves that are the Lingual and Inferior Aveolar nerves. I don't think your interested in nerve damage since you don't have it, but acupuncture may be able to help with depression too.

The central nervous system is where the spine is connected to the brain and heavy metals such as aluminum oxide found in porcelein crowns, and mercury found in amalgams both attack the tissues, organs, and the central nervous system, causeing Alzeimers, Parkinsons, MS, ADD, depression, and a whole lot of degenerative deseases!!! Since acupuncture works alot with the nervous system I believe it might help.

Plus.. I think acupuncture helped me too with nerve injury as she said she was treating the ear/ nerves and I saw her through a long time frame with my H&T.

Quote:

Plus Larry, On the dental thing I hear you..
Why do thoses drills have to be so durn loud..  


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Lynn
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jirimenzel

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Reply with quote  #31 
Hi Debbie,
Sorry, I will get back to you with all the details once I improve my sleeping pattern and have the peace of doing some work I have delayed. Yours, Juan.

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Dan

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Reply with quote  #32 
Quote:
Originally Posted by jirimenzel
It serves absolute logic that hyperacusis is something that happens to the ear and not to the brain because so many of our traumas are acoustic or ototoxic, including mine. Until I'm convinced otherwise, other than having had my pain discredited, TRT doctors have only given me cruel sophistry. They have not mapped out their patients well into coherent categories and play with something they know very little about by applying theories with no correspondance in reality. For something that is so incredibly different for one person to the next, for something that disappears in one person and not in the next, instead of a theory greencard,I'd like to see an excellent paper, with statistics and accurate reports coupled with honest interviews that'll discredit the bullying tactics I saw in my experience with the couple of doctors I found with this treatment. I would like information that defined the rate of improvement of tinnitus only sufferers, what degree of tinnitus they had to start with, where they caught the tinnitus, why the improvent statistic is so much lower in hyperacusis, what thresholds of hyperacusis improve and to what extent and where the injuries of these improved cases of hyperacusis were originally contracted, or why it cannot be left alone as something without a cure, like deafness.

I agree fully with the second point, too; it really is like skiing with a broken leg, getting up again, falling down and I think we desperate and incoherent hyperacusic sufferers fall prey to facile psychological doublespeak to avoid the blatant truth that this is just what it is. For example, of course we get depressed over time and give up, but this isn't the hyperacusis getting worse; it's just the patient giving up.


Hi Juan --

IMO, hyperacusis is a symptom, not a disease, i.e. there are probably a number of different reasons why people acquire it, and why it doesn't present exactly the same way in everyone.

My situation is a perfect example of this:  my hyperacusis started two weeks after having open heart surgery where I was on cardiopumlmonary bypass for 80 minutes.  My symptoms are not primarily ear pain caused by sound sensitivity, but chronic daily headaches.  I never had either prior to surgery, and it is well known that being on bypass can have neurologic side-effects, but usually they are cognitive deficits, not alterations to hearing.

In any event, it may be possible that sound sensitivity is caused by a functional abnormality anywhere in the auditory processing chain, not just the ears.

As a physician (I'm an anesthesiologist, not a neurologist or ENT) as well as a hyperacusis patient, all of this is very frustrating to me.  I take a sceptical view of TRT as a sole treatment, because the clinicians who offer it can't provide adjuvants, specifically pharmacotherapy, i.e. they push the only "product" that they can legally "sell."  In my opinion, neuropharmacology is a valid treatment modality, because ultimately we are talking about modulating neural response to sensory stimuli, and there are a number of ways to do that.  This is not to say that TRT is useless, but I think it should be used as a component of a more comprehensive treatment strategy.

- Dan
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Debbie

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Reply with quote  #33 
Hi Rob,

Thank you again for explaining the differences between broadband Pink Noise & the broadband used in TRT.
I can see how these could potentially support the brain to get used to receiving noise again.
I will begin adding pink noise to my regimen & see what I think over time.
I will definitely continue with another type of music therapy I'm using now through headphones, because I find it relaxing & perhaps settling for my tinnitus.
I will put on the Pink Noise in the background; the beauty of one sound therapy which is done with headphones & another which is done on an open-air player.
Is it ok to always use Pink Noise while listening to something else, especially music?
Or is it important to be isolated from other sound therapies due to possible clashes of dynamics?
And on the other hand is part of the point of it to not add other sounds which could 'mask' tinnitus?
(Or is Pink Noise considered to be only for hyperacusis?)


Actually, since my own tinnitus is pulsatile...it seems that mental discipline/possible medical treatment & not broadband might be the best solution, for the tinnitus aspect.

Actually I think this is one point of confusion in discussions...pulsatile can emerge from various causes & mine seems to literally be tied to sound as it relates at least partially to things happening in the middle ear.
I would like to see if broadband could possibly help my brain not tighten the tensor tympani + eustacian tube so much.
Because when that tightness 'relaxes' later is when the ringing surges.


I wonder if the Pink Noise will initially aggravate that proces & if it could later sooth that process through soothing the auditory CNS.

That is, if brain comfort with sounds translates quite that directly into calmer ear muscles.

Debbie

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Rob

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Reply with quote  #34 
I will put on the Pink Noise in the background; the beauty of one sound therapy which is done with headphones & another which is done on an open-air player.
 
I suggest doing it the other way.  Try it with the music on through external speakers and pink noise in your headphones.  That will keep the pink noise stable in relation to your ears -- which is very important.
 
Is it ok to always use Pink Noise while listening to something else, especially music?
 
Sure
 
Or is it important to be isolated from other sound therapies due to possible clashes of dynamics?
 
Nope.

And on the other hand is part of the point of it to not add other sounds which could 'mask' tinnitus? (Or is Pink Noise considered to be only for hyperacusis?)
 
It really depends what you're treating.  Hyperacusis is generally treated first, before tinnitus.  You don't normally hear about pink noise per se being used to treat tinnitus; but we often hear of other variants of broadband noise that are used.  With the GHI generators, for instance, the broadband noise presentation used has increases in amplitude at near 3 kHz and at 6 kHz and this could be helpful in partially masking one's tinnitus.  On the other hand, the pink noise I use has enabled me to achieve a residual inhibition of my tinnitus for hours at a time.  That means it's gone and I don't hear it even if I listen for it.  

Actually, since my own tinnitus is pulsatile...it seems that mental discipline/possible medical treatment & not broadband might be the best solution, for the tinnitus aspect.
 
It's hard to say.  I'd work with a clinician on that one.

Actually I think this is one point of confusion in discussions...pulsatile can emerge from various causes & mine seems to literally be tied to sound as it relates at least partially to things happening in the middle ear.  I would like to see if broadband could possibly help my brain not tighten the tensor tympani + eustacian tube so much.
 
It could keep that muscle relaxed.  It seems to have done so for me.  Has a doctor told you that you have a problem with your tensor tympani muscle or are you taking a guess? 

I wonder if the Pink Noise will initially aggravate that proces & if it could later sooth that process through soothing the auditory CNS.
 
It's hard to say.  Go slow.  Get comfortable. 

Rob
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Debbie

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Reply with quote  #35 
Thanks for answering my questions again, Rob.
I really appreciate the time you took to do so.

I have a question about the res. inhibition you experience.
Is this predictable?
As in...can you listen to PN for 'X' period of time & expect the result?
Did it take until recently for the res. inhibition to kick in...or happen soon in the process?
And lastly on that note...what might be the difference in mechanism behind this vs. say what Laurene reported: a year or two of TRT, habituation but always there same as ever if she listened for it?

Thanks again,

Debbie

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Rob

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Reply with quote  #36 
Did it take until recently for the res. inhibition to kick in...or happen soon in the process?
 
It took a while, but I was initially working with a much smaller bandwidth and I slowly got to the point where I could work with a larger bandwidth.  At a certain point, I began to realize that I could work with pink noise and then experience a residual inhibition of tinnitus for hours after finishing with it for the day.  For example, as I'm typing this I just listened for the tinnitus -- and I can't hear it.  I'm quite sure that it has to do with the pink noise I use as well as the way I use it.  But I'm also quite sure that what I'm describing is nothing more than anecdotal evidence.  The only way to know if I was onto something that would be helpful to others would be the way to determine if anyone is onto something -- an unbiased clinical trial. 

And lastly on that note...what might be the difference in mechanism behind this vs. say what Laurene reported: a year or two of TRT, habituation but always there same as ever if she listened for it?
 
People have been looking for RI for years.  They've studied it, and used different presentations to create it including ultrasonic sound.  All we know is that I've found something that works for me, but I have no idea if it would work for anyone else.  I habituated tinnitus at a certain point and had a similar experience as Laurene.  It was there if I listened for it, but I habituated it in terms of reaction and perception.  RI means if you listen for it, it's gone. 
 
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Debbie

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Reply with quote  #37 
That's interesting, Rob.
Thank you.

Debbie

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jirimenzel

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Reply with quote  #38 
Thanks again for your responses. Once again I don't yet have time to read most of what other people have said because I am as of late very stressed out. I have to complete a series of essays, otherwise I won't be paid quite a lot of money I get for the degree I'm in, and as of late I'm very depressed and find them very hard to do.

I recognize there must be a problem with what I said about it not being a brain thing given the cases where hyperacusis appears after, say, surgery, even though there might have been blood supply problems to either the ear or the brain.

My big tragedy, however, is I haven't had any respect for my hyperacusis, and the only possibility of this changing began with the facebook page. But I doubt this reached the extent it did in other cases. For nine years my family went around telling people I only had tinnitus, believe it or not because as a teenager I didn't like to study. It struck me at the age of 18.

And the TRT doctors translated the possibility that it may be a brain thing into a possibility that it can be a conscious psychological effort to change. This was exactly what my family was looking for and is the absolute opposite of how a hyperacusis patient should be diagnosed. This was why in one of my two meetings with one of these two doctors I had to even defend myself by saying it was something that woke me up and even then he responded with ambiguity. It would have been unimportant had I been alone, but it was combustion.

The error in medical diagnosis is devastating and callous and if I had money and proof I'd take them to court. And it can easily lead to interpretation in common folk, especially when the two TRT doctors wanted someone the hyperacusis patient lives with to be present at the session (added to the extravagant notion that the first time around they treated me with noise under the tinnitus with very expensive sound earplugs). The person present, my dad, had got no response that superseded my definition from previous doctors, was also looking for the most extreme form of diagnosis that would make it into misophonia, which involved the conscious word 'hatred' (of sound) so the consequences were devastating. Even though the audiologist said the threshold was unusually low, my dad would ask if I could live a normal life. She'd say, maybe in passing maybe not (it was so quick), that I could. I didn't know what it meant at the time, but I was being taken to doctors not to help me, but to prove I should get over it. This is where the importance of the statistic of hyperacusis patients comes in; if we're millions then it's millions who get on with their life. It's quite ridiculous I didn't look this up before but I quite obviously put my confidence in the wrong people, so I looked it up on wikipedia to find that Stephen Merritt has it but, wait, not at this level, of course. This is also why I was confused with tinnitus sufferers. This is why in a recent interview with my ex-shrink, the one I should have never gone to, he exclaimed surprised that he understood 'he also has tinnitus' and why he manages to get out of the counsellor that some people with my level expose themselves to more noise without the will to specify if it's because they don't have a choice (the shrink later clarified to me that some at my threshold do and some with a more normal threshold don't), and when this doesn't work it was all done because they loved me. So I've had no support whatsoever for 9 years, was diagnosed with counselling when it shouldn't be the hyperacusis sufferer that goes to that sort of counselling but the people adjacent who keep accusing me of lying and keep belittling the condition.

So for me it became a matter of numbers, people with my situation that would prove I had it, which is why I opened the group and this thread, and because I'd always been told about knowledge I didn't have access to. And I'm still not sure how many I've found. Just to think of a counsellor that advises not to look up in the Internet because we may imagine things or a counsellor that gives breathing exercises in cases where the people around are not respecting hyperacusis just gives the idea of how perverse my situation became and to some extent still is. When common folk are involved it's just disastrous in the way diagnoses are translated into ordinary language.

Once I'm sure I've done my work this summer, I can return to this thread and think on whether it's a brain thing or an ear thing. So my apologies for starting this thread out of time. But if it ever is a brain thing, surely it should be evaluated by the hyperacusis sufferers themselves, not by people outside, and I hugely doubt it's a psychological thing; not all the brain is psychological, not by a long shot. Even the sound used isn't directed at the, let's call it, language part of the brain, but at other parts, at the, let's call them, unconscious parts. We don't consciously acquire hyperacusis, we unconsciously acquire it, say, in an operation or a concert. Brain lobotomy is also a brain thing but you don't send Frankenstein to a shrink or tell him he can do whatever he puts his heart into, the classically deceitful fallacy of positive thinking that's in fact just a way of ignoring one's injury and leaving a hyperacusis patient to the elements.

So counselling should be a lot more careful than what I've seen . I marvel as to where the TRT doctors get their statistics if it was the way they tried to bully them out of me. How can doctors be so neglectful as to not see this?

Again, I'm sorry for only skim reading everyone, for being self-indulgent and I'll return to it in about a month. I only wanted to add the small 'what part of the brain distinction' without, admittedly answering those who have been so kind as to answer me.
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LizH

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Reply with quote  #39 
Dear Juan,

At this point in your life, it's clearly best for you to focus on your studies.  The quietness of your own study place or a library would probably be best for you and I know how difficult it will be to put other thoughts out of your mind, but I'm sure we're all behind you, silently supporting you in our thoughts.

Be comforted by the fact that so many of us including myself,  have suffered similarly, so you're not alone.

We understand, and remember that writing great essays will be proof of intelligence and normality.  We are not at all psychotic in any way, just normal intelligent people with a problem whom the rest of the world refuses to believe.

Even the doctors are blinded by their own opinions and prejudices and refuse to believe what we tell them.  They don't know that they don't know what it's all about and until they free themselves and begin to listen with clear minds little is going to change.  One day a sufferer is going to turn all this around by becoming a doctor, neurologist, whatever it takes, and then those who were blind will be shamed.

So, young man, get stuck into those essays and show the world what you're made of.

Liz.
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jirimenzel

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Reply with quote  #40 
Given I just recieved a private message from someone saying I should have responded, I've answered him now but only to say I can't, but the reason I'm not replying both in public and in private is I really have to concentrate on some other stuff. Doing so would mean reading all these threads for days, reading all over the place while at the same time having the impending doom that I haven't done the stuff, is something I can't do right now. I don't care for the studies, it's just that miraculously for reasons that have nothing to do with hyperacusis, it's a debt/grant I'd be destroyed if I gave up and on which I chanced onto by luck. My apologies. I will retake this thread up as soon as I can.
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bobm

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Reply with quote  #41 
have not been on in a while,but this thread was very well read
and lots of good info put on the board. one of my biggest complaints is that this condition is not recognized,for more medical help,insurance,workers compensation etc.
as this was brought up at the beginning of this thread and i totally agree with this comment.


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Layla

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Reply with quote  #42 
interesting thread

haven't read everything yet, just wanted to ask Jiri/Juan, if he tried the nutrition/minerals etc... it does seem to help some people at least (like Lynn, Debbie & me), not necessarily all..

of course it's understandable to focus on the study now..
I remember I was quite stressed out when finishing my thesis too, so h. may be worse in this time.. hopefully when things relax it will be better..
I'd recommend relaxing as much as possible & eating right (enough magnesium etc) meanwhile too..

also, some people may not want to 'confess' publicly on Facebook to have problems of any kind, let alone any 'fishy' ones.. due to possible iffy looks from people.. on social networking sites one may wish to present oneself in 'best light possible', so that may be part of explanation.. partly, presenting stuff in a more cheerful/positive light & with links to more established sites etc may help..
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saab1216

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Reply with quote  #43 

I took magnesium,Ginko biloba,Chiropractics,yoga.None of this works. Stress does seem to make it worse but, I find that its the problem and constantly being focused on it that causes the stress.(just trying to enjoy your life and cant at times!).Stress doesnt cause H/T. H/T causes stress. Did you have more or less stress before this happened? Think about it.


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Paul
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catlady2323

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Reply with quote  #44 
Hi Juan,

I read with interest your definition of hyperacusis, and wanted to substantiate your observations with my experiences.  

I was born with hyperacusis, and suspect it is the result of poor development in my brain's auditory nerve,  and/or inner ear hair cells,  due to difficulties my mother had during her pregnancy with me.  I do not have tinnitus.  I also have no phonophobia, and no misophonia.  I cannot tolerate sudden changes in either the the frequency level of sound, or the decibel level of sound.  I have never been exposed to loud or traumatic noises, and have excellent hearing.  In fact I have hyperacute hearing (0dB) at both the low and high frequencies.  My ears never hurt.  I have lived with this condition for over 5 decades, and thus have much experience in learning to cope with the noises of civilization.  My LDL is 50dB.

I thought your observation that those with extreme hyperacusis have trouble with their dynamic range, and find it painful when noise levels fluctuate, a very interesting concept.  In 2006 I was nearly suicidal from the constant unrelenting pain caused by my hyperacusis.  Desperate for relief, (and with no knowledge of the current treatment protocols for hyperacusis), I took what at that time, seemed a radical approach.  I adjusted my life to accommodate my sound sensitivity. 

I have the good fortune to have a very understanding spouse, and the financial means to structure my living environment the way I need for it to be with an LDL of 50dB.  For 4 years now I have lived in my "hushed" environment.  It has been like a miracle !  The chronic pain disappeared, I could read and enjoy my life, and the burden of fitting into noisy environments was lifted.  I live surrounded by sound defined by me, and I am immeasurably better off. 

I have discovered several things about myself you may be able to relate to concerning sound or noise.  I have hyperacute hearing, so I hear everything!  In addition to the level of the noise, there is also what type of noise it is, and I have a limit on how many layers of noise I can tolerate at one time.  So if the dishwasher is running, and the washing machine, and the vacuum, and the TV is on, and someone is talking to me, that is too many layers of noise, most of which is above my LDL.  I have to start removing layers.  I may postpone the vacuuming, turn off the washing machine, and lower the volume on the TV.  Needless to say, I am difficult to live with!  lol

I also plan my work around my noise tolerances and the layering idea.  So if I need to work on something requiring thinking time, I do this early in the morning when there is the greatest amount of quiet, and I will not be distracted by common place noises.  I also place any business phone calls needed first thing in the morning.  I do not have ADD,  but I do have a brain that does not filter out sound.  There is no foreground, background distinction in how I perceive sounds.   My brain makes no distinction, and just allows it all in at the same level of priority.  I have no ability to block out noises.

I also cannot mask one sound with another sound, which apparently my husband can do.  He will often say "well let's turn on the TV to drown out the noise of the dogs barking".  I have to remind him, that it doesn't drown out the dogs, and now we have just added another layer of noise to frustrate me.  I hear both sounds equally well and completely.

I have also found that I have a very narrow frequency range that is comfortable for me.  When noises stay within that frequency range I am most comfortable.  So for instance, I use a sound machine with ocean tides gently playing when I go to sleep at night, and often during the day, to provide a comfortable backdrop to my work.  Sounds outside my frequency range, even when they are not loud, are still painful. 

This is the first time that I have shared this much detail concerning my experiences with hyperacusis.   I find it insulting when others try to suggest that I have phonophobia, or other related conditions, and suggest things like psychotherapy, or TRT, or positive thinking, to alleviate my need for a controlled sound environment. In my case I have a permanent condition, with no known cure, and I treat it as such. 

Finally, I do not suffer from insomnia.  In fact I sleep very well.  But that is because I have a controlled sound environment of my choosing, and I keep my central nervous system well supported with a reputable calcium/magnesium supplement. 

All in all, I think your treatise on hyperacusis was well thought out and accurate.  

Thanks for trying to add clarity to a complex subject.

Sharon

 






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aQuieterBreeze

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Posts: 2,083
Reply with quote  #45 
Even if one wished to live in a controlled sound environment,
wouldn't it be wonderful- to be able to tolerate more in the way of sound....
to at the very least,  be able to add to the sounds that one can enjoy?
To expand what is currently a comfortable frequency range -
and dynamic range as well.....
to be able to enjoy more in the way of music.....and / or whatever else one may wish to enjoy...
that is part of what can happen, if one works in appropriate ways,  to improve their tolerances.....

But some may be convinced that it can't be done, I'd be more likely to listen to those who say it can.......
But that is just the way i'd think about it -  and we are all different.....
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jirimenzel

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Posts: 183
Reply with quote  #46 
Hi catlady2323 and quieterbreeze
i agree with Sharon and that's what i was trying to put across. A good standard for TRT 'research' would be putting us all in an environment of our choosing, and only then TRT. And over years. So it would be too expensive for the patients. A beachfront house cost, something to avoid cars, would be skyhigh, for instance, having enough moral accountability for minor changes like moving away from streets with cars wouldnt be so expensive, but by god both would be better than all the rubbish i've heard about accepting our pain. I spent close to a decade in ridiculous over-effort, only to be accused of laziness.
And the lack of respect for the patients is glaring too, and here go the varying degrees of luck of where we're born into.
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catlady2323

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Posts: 208
Reply with quote  #47 
Hi Juan,

I choose my current home with my sound sensitivities in mind. This was a decade ago, long before I had ever heard the word "hyperacusis".  I have the good fortune to live in a neighborhood of dead end streets, on a dead end street, so there is virtually no noise from traffic, and only the occasional vehicle to disrupt my peace. 

I spent decades  (yes decades) using every psychological trick in the book to enable me to function in the noisy world I was subjected to upon entering adulthood.  As a child I spent my summers on the 100 acre farm in the backwoods of Arkansas my grandparents owned.  It was heaven for me.  The sounds of nature are diverse and always peaceful to me, (except of course tornadoes and thunderstorms !  lol ), so I enjoyed many peaceful days relieved of the noises of civilization. 

I became a devotee of the "positive thinking" genre in the early 1980's, and worked hard to apply it's tenets for two decades to the barrage of noise I was subjected to as I worked in a city (always noisy)  to develop a career.  I had no idea that my neural processing of sound was any different from anyone else.  I can testify that "positive thinking" did nothing in my experience, to alleviate or reduce, the pain from hyperacusis.

I like the word "hyperacusis" as it does recognize the neurological component of processing sound, however as a diagnostic tool it is far too general a designation for determining a treatment plan.  The complexities of sound processing are not well understood, so a "one size fits all" treatment protocol does not have any basis scientifically for being appropriate. 

I appreciate you starting this thread.  Your thoughts on the subject are intelligent and represent a thoughtful consideration of just what it means to have a very low tolerance for sound , and to have the added complexity of  not being able to tolerate sudden changes in decibel level.  I hope to contribute more to this thread in the near future.

Sharon











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Rob

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Posts: 4,049
Reply with quote  #48 

I can testify that "positive thinking" did nothing in my experience, to alleviate or reduce, the pain from hyperacusis.

 

Of course not.  Nobody can think their way out of decreased tolerance of sound.    

 

I like the word "hyperacusis" as it does recognize the neurological component of processing sound, however as a diagnostic tool it is far too general a designation for determining a treatment plan.  

 

There is a very well-defined treatment plan for hyperacusis.  

 

The complexities of sound processing are not well understood, so a "one size fits all" treatment protocol does not have any basis scientifically for being appropriate.

 

One size does not fit all.  But that doesn’t mean a treatment protocol cannot be found for most individuals with decreased sound tolerance.     

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