This message board is available to anyone whose life has been adversely affected by sound (i.e. hyperacusis, tinnitus, recruitment, sound sensitivity, etc.)
The Hyperacusis Network Message Board
Register New Posts
 
 
 


Reply
 
Author Comment
 
pattiluv

Registered: 02/05/08
Posts: 828
Reply with quote  #1 
There are some interesting links between these syndromes.

http://health.nytimes.com/health/guides/disease/fibromyalgia/causes.html

If one has fibromyalgia for example, they may also be deficient in igf-1 (a certain kind of growth factor) - 30% of fibro patients are.  in these cases one with low if-1 can see substantial improvement supplementing with growth hormone.

it is not clear to me that someone with this condition would necessarily get better with sound therapy alone, as there are physiological underpinnings operating at the level of the brain chemistry and feedback habits that are operating system-wide.

such could explain what some call "category 4" hyperacusis.

i often like to think of hyperacusis - in my case - as a symptom of something global, rather than a syndrome with no other challenges. i need to look at what my system needs.

sound, as tolerated, is good. but clearly, for me, too much will do more harm than good, just as too little will.

in generalized terms, i walk a real goldilocks line as i do my best to address my system as a whole. people with depression, migraines, and phsyical pain might wish to check out fibromyalgia, as sound sensitivity is one of the symptoms.


LynnMcLaren

Registered: 04/28/05
Posts: 7,991
Reply with quote  #2 
Hi Patti, (((( Smiles ))))

Was looking up the igf-1 deficent thing and it talked about delayed inner ear maturation in this article. You can have problems with your ears it seems.

http://www.jneurosci.org/content/21/19/7630.full.pdf

But yes, I agree that hyperacusis could be a symptom of something global going on as it can go with alot of medical challenges known and even unknown it seems.  
There must be some kind of an underlining double whammy with hyperacusis and also as maybe why some people improve more then others and how come it could possible return for some people, not sure the head count for how many under the right circumstances in the future and then again..
You think of what does the right circumstances even mean??
as there are lots of people in this world under the right circumstances that never ever came down with hyperacusis at all.
So makes one wonder what really IS the right circumstances and it's not just noise it seems.
Or concerts, bands and disco's and fireworks events would all be shut down because of all the high cases of hyperacusis seen and war would be a HUGH risk factor for the hyperacusis epidemic that does not exist.
It seems like it has to be a syndrome with other challenges involved.
Besides an acoustic shock of some sort. Like just a nerve injury of the ear as it can go with alot of different medical conditions it seems. The more one searchs on conditions the more one finds that hyperacusis can be a symptoms with it. It can vary it seems.    

__________________
Take Care

Lynn
gardennut

Registered: 07/15/09
Posts: 70
Reply with quote  #3 
I agree, there are often other medical conditions involved. for instance I have had Chemical Sensitivities since 1979. The Hyperacusis developed over many years after that started, gradually worsening as I went to concerts etc. until finally I realized I had a problem that wasn't going away. I also have a friend with CS who developed Hyperacusis as well after being near a loud rock band. However she was lucky and the H calmed down with time and hardly bothers her at all now. She still has CS, but a milder form than me.

It's probably a symptom of whatever illness we have.  Bah Humbug......   Donna

__________________
Donna Keddie
aQuieterBreeze

Registered: 02/03/08
Posts: 2,083
Reply with quote  #4 
Hi Lynn,

Many vets (though i don't know the percentage) have tinnitus and if i remember right by calculation - statistics and/ or studies show that overall
a certain amount of people (overall) with tinnitus also have hyperacusis ....... (though not everyone, and probably much less than those with hyperacusis -  that also have tinnitus )
and  even if its a low percentage (of people overall  who have tinnitus that also have hyperacusis) ------ a huge amount (or at least very large number) of veterans seem to have tinnitus --
and there are threads that talk about studies happening because of it.
So while not much may be said (or perhaps known ) about veterans and hyperacusis - (and how prevalent hyperacusis is among veterans )
My guess is it does exist and may be quite prevalent.  And i wonder if it could be part of the PTSD some vets suffer from  (at least in some cases) -- in that really loud sound would cause some challenges that may not be as well understood unless the clinicians factor in hyperacusis as a possibility as well......in maybe there is a possibility it is part of the equation-- but perhaps overlooked or not even looked for. (in the way some vets may react to loud sound )

If you think about it many parents (usually dads-- would tell kids -- "turn it down."
Maybe it was, in some cases -  more than distraction, or annoyance?
LynnMcLaren

Registered: 04/28/05
Posts: 7,991
Reply with quote  #5 
Hi A Quieter Breeze, (((( Smiles ))))

Thats true!
Also though, alot of older people and parents say turn it down as well yet also hyperacusis still seems uncommon or rare.
But may be more cases out there then we know about.  
It's true that alot of them " Vets " are around very loud sounds and they should also factor in any study of them in having been exposed to toxins as well and for me that would mean exposed by vaccinations too and also maybe alot of antibiotics?
Exposed to chemicals all that should be factored in in any study because it seems it may not be just the noise itself.
Not all vets with the same noise expirence may expirence the same symptoms from it. 
But noise and a breakdown by a toxic exposure?
But yes, a reaction to loud sound that may not be fully understood by some.
PTSD why some, maybe it was the noise plus some kind of an exposure as well?  That effected their nervous system?
Made them more vunerable to the condition?
The nervous system is a interesting place to look.
Debbie seemed to touch on that subject and thought about a possible nervous system involvement in H.
But Yes QB Good Point!
It should all be looked into.
Well Said!  (((( Smiles ))))) 

__________________
Take Care

Lynn
pattiluv

Registered: 02/05/08
Posts: 828
Reply with quote  #6 
as i understand it, ptsd can show up in the body as a kind of physical ocd. it means your body can't recuperate or "let go" of injuries. it is protecting today against what happened yesterday or some other time.

so a loud noise would be just such an example. your ear clamps down... but it doesn't recover, and keeps acting as if the noise is still there.
hence the interactions - mind - brain - truama - ptsd - and the low growth hormone could be another way the body reacts... leading to all sorts of immune disorders, or, perhaps all this contributes to a weakened immne system, then low igf?

ikop

Registered: 05/22/10
Posts: 41
Reply with quote  #7 
post traumatic stress can lead to an severe hyperactivty of the nervious system , it does somtimes changes the our perceptions...
that what happned to me .   i got ptsd and the first symptoms developed were the hyperacusis .  
pattiluv

Registered: 02/05/08
Posts: 828
Reply with quote  #8 
so the question is why? of course
a friend of mine in the medical professon speculates that it might be genetic... ie some genes just "poop out" after they've had enough, while others keep on truckin'... of course when the genes change, a lot of other stuff goes too. hence all those nasty things like parkinson's, als, etc... all the more reason for us to be very careful around poisons of all kinds, foods, pesticides, industrial, etc. - they also alter gene structure.

Johnloudb

Registered: 07/31/09
Posts: 1,734
Reply with quote  #9 
Quote:
Originally Posted by pattiluv
sound, as tolerated, is good. but clearly, for me, too much will do more harm than good, just as too little will.

Hi Patti,

What do you mean by too little sound? Would you mind explaining what happens when you get too little sound?  Silence is of course not helpful, and sound enrichment is helpful.

__________________
John

~ Patience and Persistence Pays Off ~

My Story:
http://sites.google.com/site/johnsaudiopage/
pattiluv

Registered: 02/05/08
Posts: 828
Reply with quote  #10 
hi john,
i am puzzled by your question. why are you asking me this? i can't seem to wrap my mind around this. i feel i expressed myself clearly.
thanks,
patti

Johnloudb

Registered: 07/31/09
Posts: 1,734
Reply with quote  #11 
Quote:
Originally Posted by pattiluv
i am puzzled by your question. why are you asking me this?


I thought my question was pretty clear too.    Maybe not, but I am just wondering if having too little sound is problem for you. I might have some suggestions.

i walk a real goldilocks line as i do my best to address my system as a whole
 
Also this statement (above) got wondering about it. Does that "goldilocks line" include sounds in your world too? Like you have to balance between too loud and too quiet to aviod symtpoms you don't like?

John

__________________
John

~ Patience and Persistence Pays Off ~

My Story:
http://sites.google.com/site/johnsaudiopage/
pattiluv

Registered: 02/05/08
Posts: 828
Reply with quote  #12 
hi John,
i just was saying that i want to make sure i live in a sound-enriched world... which i do. I go to the mall, restaurants that don't have loud music, and lots of other things. and there is a point where i need to take care of myself to not get earpain. i usually know that point.
ear pain is counter productive to sound enrichment. it leads to my having to avoid sound way more.
hope that's clear.


Johnloudb

Registered: 07/31/09
Posts: 1,734
Reply with quote  #13 

I understand Patti, and I hope you don't think I'm trying to pick a fight with you. Just trying to help.

Sounds like you're doing really good. Sometimes in an effort to avoid pain we become a bit OCD about sounds and our environment. I used to hate quiet cause I'd become more symptomatic. So, I kind of acted abnormal sounds ... to the point I had to hear some sounds (especially louder sounds) at a particular time of day (like listing to my alarm clock ring 20 minutes every night) or my ears would start to hurt or I'd have headaches and other sounds would start to sound louder to me. This was also part of phonophobia.

Hazell explained I needed to act more normal about sounds, and face my symptoms, and think good thoughts. My symptoms were just a lymbic and autonomic nervous system response. This took a long time to get where I could act more normal about sounds ... didn't happen overnight.

But, at the same time it's very important to keep trying to listen more to these sounds that cause me problems every so often or things go backwards.

So, I don't know if that relates to your experience. But if you feel trapped, like you have to get to mall every day or need to be in loud environments all the time because your symptoms will get worse in quiet, it probably doesn't have much to do with hyperacusis. 

Using a sound for sound enrichment all time really helps deal with anxiety about sounds. If you're not already, maybe you could use sound enrichment with a portable player and open air headphones, when you go out? Kind of a pain, I know.

Just my thoughts though. If you're progressing and moving forward and just keep at it I say.

John


__________________
John

~ Patience and Persistence Pays Off ~

My Story:
http://sites.google.com/site/johnsaudiopage/
pattiluv

Registered: 02/05/08
Posts: 828
Reply with quote  #14 
thanks for your thoughtfulness, John,
I am doing well, thanks,
I don't go out of my way to have sound enrichment.
i listen to music, have friends over, etc.
i don't even listen to "peaceful air purifier" when i sleep anymore,
i decided it wasn't doing me any benefit.
i am always very touched by how you face your issues around sound. You are quite persistent and willing to grow and i respect that.
i have something of a different path and i respect that too. i am at peace with how things are developing for me,
thanks for your caring.
warmly,
pattiluv

aQuieterBreeze

Registered: 02/03/08
Posts: 2,083
Reply with quote  #15 
Hi John,

Thanks for explaining this. (what you mention in your post, above  to Patti)  -- Is this also why you found listening to loud sounds and the car helpful?

I'm curious because this does not sound like hyperacusis,  (and i have been curious how loud that car was)
Thank you for explaining more about your situation, and i am glad you are finding ways forward.

Hi Patti,

you mentioned -
 don't even listen to "peaceful air purifier" when i sleep anymore,
i decided it wasn't doing me any benefit.


I'm curious -- do you leave some sort of sound on for background sound/ sound enrichment  during the day?

From what i can tell -- with sound enrichment, it can help to gradually, as one is able to do so - expand the range of what we are using .....(unless what one is using contains a really wide freq range to begin with)
that way it encompasses more frequencies, as we are able to .....(a wider frequency range) ...... (my guess is - though the sound you were using (mentioned above, "peaceful air purifier" ) may have been helpful and relaxing for you (and that is wonderful..... -- it may lack at least the higher frequencies  that you may still be having difficulty with .(though that is just a guess, as i have never listened to it) ..
so MAYBE to try to find something else in the way of sound that you are able to tolerate, enjoy the sound of - and find easy on your ears  that has a little wider range would be helpful?  Just a thought.......whether to use for while sleeping or for background sound during the day. It's how i've been able to tolerate more in the ways of music -- gradually ......selections that were too difficult -- become more tolerable ....true with other sounds as well.....to work with what is tolerable to be able to tolerate more overtime.......

(and thankfully gradually expanding the range and selection of what i am listening to,
 ....has been helpful for me -- in being able to tolerate more in the ways of all sound - in general ...though it's all gradual ......overtime.)

In an older thread of Kenda's about sound enrichment -- Rob mentioned the following, in reply to something mentioned - about sound enrichment ......

Quote:
The key is to work with sound that we as individuals can handle.  It doesn't matter what it is.  What matters is that we consistently use it.  If we do that, as time passes we will be able to use more ambitious sound. 

Rob





pattiluv

Registered: 02/05/08
Posts: 828
Reply with quote  #16 
hi aQb,
i listen to a lot of sounds throughout the day, i put on music, i go out, etc.
it is more that i don't go out of my way to listen to sounds when i am not in the mood ... or to "correct" myself.

i am just loose and natural, like i said, trusting my own inner wisdom to guide me.

i didn't sense that the nighttime sounds really did any good. only reinforced that i had a "problem".

well i do have challenges, but, i have a reason for them and i believe they are more complex than simply a cranky limbic system and fussy ears.

trying to fix what ain't broke ain't the answer. it's like looking for keys under that lamppost where there is more light... when you hadn't been near the lamppost when you lost your keys.

i do believe that for some, this may be the answer. but not for me, not now.

so my answer is to trust my own body in guiding me towards what does work.

warmly,
pattiluv

edit added:
ps I agree with Breeze that it sounds like John, you have a problem with low sounds/silence. This is not the traditional definition of / manifestation of hyperacusis.

i think that is an important distinction.

i appreciate it when, John, you share from your own experience, and I especially like it when you are clear, and not making generalizations about what others are wanting and needing, for just this reason, we are all so different.
~~~~ warmly~~~
debIam

Registered: 06/28/10
Posts: 319
Reply with quote  #17 
Hi guys,  my 2cts worth.... I really like the give and take of ideas here.  We all come from different directions to deal with a problem that manifests so differently for each of us.  

I have to think that these discussions genuinely are helping lots of folks who come here whether or not they ever post. 

I know I've been helped immensely.

deb
Nemi

Registered: 02/16/09
Posts: 127
Reply with quote  #18 
Thanks Pattiluv for this post and the website... very interesting. An audiologist a few years ago said I might have fibromyalgia, but I was never convinced... this article convinces me. In my case I can definitely see links between Fibro, PTSD and H.

I wonder if anyone here has tried, or is planning on trying an igf-1 supplement...

pattiluv

Registered: 02/05/08
Posts: 828
Reply with quote  #19 
hi Nemi,
you have to get tested for low igf 1 levels to be able to try it. it does seem to have excellent results but it takes time, like 3 to 9 months.

but not everyone who has fibro has low igf 1. not sure what these people experience when taking igf 1.

they are doing ever more to understand fibro. it's more common in people with migraines, too. and they "say" that lyme can cause fibro.

http://www.myalgia.com/growth_hormone_deficiency_in_fib.htm

i feel that here is a perfect example of when not to use too much sound. without the ability to recover normally you will keep injuring yourself by too much sound. finding a way to have sound in your life but not more than you can handle would make sense, just like exercise for people with fibro. overdoing it will just cause more injury, not healing. these people (fibromites as they are called) must be very careful to avoid trauma, clearly.

you can pm me for more info if you wish .
Johnloudb

Registered: 07/31/09
Posts: 1,734
Reply with quote  #20 
Quote:
Originally Posted by Breeze
Hi John,

Thanks for explaining this. (what you mention in your post, above  to Patti)  -- Is this also why you found listening to loud sounds and the car helpful?

I'm curious because this does not sound like hyperacusis,  (and i have been curious how loud that car was) 
Thank you for explaining more about your situation, and i am glad you are finding ways forward.

Hi Breeze, I never measured the SPL of that car ... it wasn't a quiet car, not the loudest. It's not hyperacusis. Yes, listening more to loud sounds you tolerate well does help with both hyperacusis and decreased tolerance to phonophobia. TRT is avoidance in reverse. 

I still have sound sensitivity to loud sounds. For example my dad dropped a bottle in the trash and it hit another bottle, awhile back. Felt like sharp objects being jammed in my ear and brain. Though this only caused a temporary setback of a couple days. There are sounds too loud for me like emergency vehicles.

Decreased sound tolerance may or may not be Hyperacusis.

Quote:
Originally Posted by Patti
ps I agree with Breeze that it sounds like John, you have a problem with low sounds/silence. This is not the traditional definition of / manifestation of hyperacusis. 

i think that is an important distinction. 

i appreciate it when, John, you share from your own experience, and I especially like it when you are clear, and not making generalizations about what others are wanting and needing, for just this reason, we are all so different.

Most people with hyperacusis have difficulty tolerating silence. In silence the brain turns up the gain for sounds. Hurt ears need a pleasant, familiar sound that we here all the time - a sound we're habituated to - not silence.

I tolerate quiet just fine when my ears aren't hurt. I don't have sound enrichment, so there are times I don't have much sound in my environment. When I was able to use sound enrichment it was very helpful though and I made faster progress. I found just having sound enrichment in my bedroom was enough. I don't know that I would use sound enrichment on headphones all the time, unless i felt I needed it.

Hazell also mentions that people who used sound enrichment make significantly faster progress. 

Patti, like I've said before you're welcome to disagree with my opinions but I have just as much right to express them on the message board as you have a right to express yours. I have no problem with that. 

Quote:
Originally Posted by Patti
i feel that here is a perfect example of when not to use too much sound. without the ability to recover normally you will keep injuring yourself by too much sound. finding a way to have sound in your life but not more than you can handle would make sense, just like exercise for people with fibro.

Fear and anxiety can also cause the symptoms of fibromyalgia. All depends on what's cause you're symptoms I guess. I don't think anticipating problems and completely avoiding sounds is a good idea. It's the very definition of phonophobia, and would cause more anxiety and just make things worse. That's not to say you want to go out of your way to hurt yourself ... that's not TRT either.

Quote:
Originally Posted by Patti
overdoing it will just cause more injury, not healing. these people (fibromites as they are called) must be very careful to avoid trauma, clearly.

Is there any documentation to support that? I basically scanned the article, but I don't recall anything that says sound can damage a person with fibromyalgia.

Best, 
John 


__________________
John

~ Patience and Persistence Pays Off ~

My Story:
http://sites.google.com/site/johnsaudiopage/
pattiluv

Registered: 02/05/08
Posts: 828
Reply with quote  #21 
hi John,
again... I get the distinct impression you are talking about yourself.
when you say "most people" - how do you know that?
i think your statements are more powerful when you say "I've noticed for myself that..." or, "i believe that..."

as for fibromites, they are routinely cautioned not to overexert. they are very much subject to getting "flares".
they are encouraged to exercise within tolerance but that varies quite a bit from fibromite to fibromite.
sound sensitivity is a definite symptom of fibromyalgia.
while there hasn't been too much written for fibromites in particular on healing sound sensitivity, as far as the research i've done, which isn't all that much, i can extrapolate... they seem to agree in general: do as much as you can without doing harm...but, this is my extrapolation on the general principles. fibro people do vary quite a bit.

many problems can cause hyperacusis... heavy metals toxicity, low magnesium... the list goes on and on. we simply don't have that much research on healing sound sensitivity. or evidence that it can be healed. i think for many it will be a lifelong condition.

i think it's human nature to believe that our condition can be fixed, and some will spend a lot of $ to pursue a cure, but that doesn't mean a cure is coming.

i wish the Jastreboffs hadn't vanished!
and that some university would find it worthwhile to do a clinical trial or two.

my guess it that if they thought it was worthwhile they would have done it, especially if they could have added in tinnitus sufferers, a much larger group.

alas, nothing has been done. so... not much research. only theories. well, we have to find our own way, now, don't we?

i'll speak for myself, i have no trouble with silence,

and, i wish that you would speak for yourself too. honestly, i have a need for fairness and respect.

show me the data. the research. the clinical trials. then let's have a reasonable, scientific discussion.

and no, theories alone don't cut it for me.

pattiluv

Registered: 02/05/08
Posts: 828
Reply with quote  #22 
hi Lynn, thanks for posting the information about the inner ear and growth hormone, very interesting!

Nemi, i met someone just yesterday who was raving about homeopathic growth hormone, I can't say pro or con, but i found it quite interesting, so i pass along a link, strictly for your consideration.

http://www.hgh-pro.com/hgh-pro.html

John, here is one article on fibro and the need to "turn it down" regarding sound  - ie, pushing yourself too much with sound makes things worse, not better. of course, it's just another theory, but, it's consistent with other stuff i've read about fibro.

"In other words, the more your sensory symptoms [like sound sensitivity (sic)] become amplified, the worse your fibromyalgia will become. Treatments geared at dampening the sensory amplification process may be more effective."

http://www.fmnetnews.com/articles-overview-overload.php

and finally: why all this fuss about theories? who cares? right?

well, i was thinking this afternoon about guaifenesin. this was promoted by a doctor as a cure that would reverse fibromyalgia. thousands were put on a very stringent regime. some even did better! however, after a number of years, the "guai" theory has been scientifically debunked via genuine clinical trials.

what is the harm? ummm... could it be the doctors who charged small fortunes to put patients of the "guai protocol"? don't laugh, we have a doctor near here who is still doing this!  or the failed hopes, side effects, diversion from finding real treatments, costs, or just plain having to avoid certain things like shampoo, most vegetables and herbs, etc, for years on end?

the de-bunking studies have actually shown why some people might do better on the protocol, and of course, there were a number of reasons, that varied by subpopulations (some just ate better food.) and, some people spontaneously heal from all sorts of things... fibromyalgia, hyperacusis, cancer...

so we must know via scientifically constructed studies if the healing was connected to the remedy or was due to something else or would have happened on its own no matter what.

anyway, just be careful, folks, what you read on the internet isn't always true, even if it seems to be coming from "professionals". demand clinical trials, bonafide outcome studies, and more.

http://www.fmnetnews.com/resources-alert-product6.php
Nemi

Registered: 02/16/09
Posts: 127
Reply with quote  #23 
excellent info and links thanks Pattiluv.
Johnloudb

Registered: 07/31/09
Posts: 1,734
Reply with quote  #24 
Quote:
Originally Posted by Pattiluv
John, here is one article on fibro and the need to "turn it down" regarding sound  - ie, pushing yourself too much with sound makes things worse, not better. of course, it's just another theory, but, it's consistent with other stuff i've read about fibro.

"In other words, the more your sensory symptoms [like sound sensitivity (sic)] become amplified, the worse your fibromyalgia will become. Treatments geared at dampening the sensory amplification process may be more effective."

Not overdoing it is kind of generic advice for people with anxiety, chronic pain, phobias, and so on ...

There doesn't seem to be a real consensus as to what actually causes fibromyalgia ...

"Many experts believe that fibromyalgia is not a disease, but is rather a chronic pain condition brought on by several abnormal body responses to stress. Areas in the brain that are responsible for the sensation of pain react differently in fibromyalgia patients than the same areas in healthy people."



Anyway, not all people with sound sensitivity can be helped. I've never claimed they could, but most people can and do make progress if not  a full recovery.

There are plenty of examples that.

I'm sorry you're so caught up in conspiracy theories about TRT doctors.

Quote:
Originally Posted by Pattiluv
show me the data. the research. the clinical trials. then let's have a reasonable, scientific discussion
.

There are two placebo controlled studies in Hazell's book, and one done by the military on tinnitus. You dismiss any study supporting TRT ... so what?

Quote:
Originally Posted by Pattiluv
many problems can cause hyperacusis... heavy metals toxicity, low magnesium... the list goes on and on. we simply don't have that much research on healing sound sensitivity. or evidence that it can be healed. i think for many it will be a lifelong condition. 

By definition, Hyperacusis is just sensitivity, not a disease, neurological damage, misophonia or other. 

I agree with Dr. Nagler comments that hyperacusis is easy to treat. If it's not it's something else.

I'm a optimistic person Patti. I was also one of the "can't be helped." ENTs said "It's permanent," and Dr J. mentioned on the message board that Cat. 4 people, who's sound sensitivities caused psoriasis, and neuropathy, and so on, can't be helped. She suggested someday they may find the answer as MRI's get better. Got the same from neurologists who say neuropathy is permanent (not true) or want to diagnose me with some kind of disease. 

Well, there's no mystery to my symptoms. It's very well understood by some people - namely Hazell and Jastreboff. It's all a limbic and autonomic nervous system response. So, I've made good progress with all my sensitivities, following a path of gradual desensitization described by the Jastreboff model, and not distressing over my symptoms and worrying about damage.

I can't say i know much about fibromaylia but I wouldn't jump to conclusions that these people can't be helped, and they can only manage their condition.

Also, people could easily be misdiagnosed with some condition like I was.

I find the stuff you, Lynn, and Debbie interesting, and I don't believe I've criticized you guys for posting these conditions. It's good to know.

John

__________________
John

~ Patience and Persistence Pays Off ~

My Story:
http://sites.google.com/site/johnsaudiopage/
sucuqu

Registered: 07/26/07
Posts: 197
Reply with quote  #25 
Thanks Pattiluv for bringing more info to all of us.  Fibro info was needed for me.  I have suspected for a long time that I have it.  And this info is something I needed to read.
 
so great to see others pop in.  Gardennut, I too have chemical sensitivities and can relate very much to what you said.
 
One of my drs did say, are you sure this is not a symptom of something else?  which has been mentioned before --Lynn, I think, in a post a while back
 
and now Pattiluv, talking about H as a symptom,  I agree with  your thoughts.  Let us consider other possibilities.
 
John,  I also wish you would stop using the word "most" as you can not speak for most. 
"Most people with hyperacusis have difficulty tolerating silence."
 
Seriously, are you kidding me.  My H ears crave silence esp. when in pain. and not the silence of ear protection.    and, there is never complete silence, but enough to rest my ears.   I have never heard a person w/ H say they have difficulty tolerating silence.   
 
 
thanks again Patti for starting this thread.    Su
Johnloudb

Registered: 07/31/09
Posts: 1,734
Reply with quote  #26 
Quote:
Originally Posted by Sucuqu
John,  I also wish you would stop using the word "most" as you can not speak for most. 
"Most people with hyperacusis have difficulty tolerating silence."
 
Seriously, are you kidding me.  My H ears crave silence esp. when in pain. and not the silence of ear protection.    and, there is never complete silence, but enough to rest my ears.   I have never heard a person w/ H say they have difficulty tolerating silence.   


Well, maybe I worded that wrong. People do have a tendency to seek out (crave) silence when there ears are hurt. But it's not helpful. Hurt ears, need a pleasant sound you're familiar with, like sound enrichment. Ears recover faster that way.

I'll use any language I think is appropriate su. 


__________________
John

~ Patience and Persistence Pays Off ~

My Story:
http://sites.google.com/site/johnsaudiopage/
cbBen

Registered: 12/16/07
Posts: 1,378
Reply with quote  #27 
It gets down to the word "tolerate."  To not be able tolerate something means to not be able to stand it.  It's like the Jerry Seinfeld joke about lactose intolerance:  "I have no patience for lactose, and I just won't stand for it."

So John you may have meant more along the lines of "not helpful" as you say in your post above, but at the same time I think it's good for Su to clarify just so everyone is clear.  

Thank you to you both.

__________________
Please resist the temptation to pick apart my post by quoting it piece by piece.
aQuieterBreeze

Registered: 02/03/08
Posts: 2,083
Reply with quote  #28 
I think people with tinnitus may have a more difficult time at times, tolerating silence .....
as for many it make ones tinnitus more noticeable ......
and in those cases having something on for pleasing and tolerable background sound can be really helpful ....

It's helpful with these challenges as well -- and one of those reasons i think is because ,  true silence can be hard to find -- and if one tries to keep things as quiet as possible -- the sounds that may be present, prevalent and/ or noticeable /or  too loud -  may be those one has no control over of wishes were not there -- like the sound of the fridge, or furnace blower -- even distant traffic .....and because one is  trying to keep things quieter (and perhaps wishing for silence) -- maybe one's mind is more likely drawn to the sounds that are difficult and /or distracting .....having something pleasing and tolerable on in the background can help in that respect ..(it can help allow ones mind to relax)..and properly used sound enrichment -- can also be extremely helpful; in helping one to rebuild ones tolerances to sound......


Also -- while i don't know what happened with the study (if it was conducted, is still ongoing -  or what the results are)  - the following is a really  interesting article
about a study and clinical trials  involving using TRT to treat tinnitus.....
http://www.chat-hyperacusis.net/post/show_single_post?pid=39904962&postcount=1

and if anyone knows of any updates on this study -- it would be interesting to know about .....
pattiluv

Registered: 02/05/08
Posts: 828
Reply with quote  #29 
thanks for the link, aqb,
of course, researchers tend to get published when they get good results. failures don't get published nearly as often... if at all.
so... i'm all ears for the results. apparently we have at least three more years before the study is done.
and it would be very nice if they studied people with hyperacusis along with this study which seems to be about tinnitus.

john, i think your comments about having conspiracy theories about trt doctors are in the category of flaming. please do not make this type of remark to me again. i insist upon fairness and respect.

while some have been helped on this board by TRT, others have had no results, some have been hurt by it, and so on. i have often said i would do - or certainly just try - trt if i could. but i can't tolerate the broadband noise. if I understand correctly, you said you listen, like, for very short amount of time, like seconds or a minute or two, to broadband? did i get this correct? i am not sure that is what most people would put in the category of TRT! the study, for example, that aqb points to, had people wearing gens 8 hours a day. how long per day are you wearing them?

as for the research, i am asking for independent, clinical research, not someone's own study, or studies, for obvious reasons.

i have asked on this board before, several times, for this level of study. no one has yet to produce any. aqb is going in the right direction. now, if only they would address hyperacusis. and, i guess we'll have one in a few years, assuming it's positive - which is when they tend to report outcomes.

su, thank you for your kind words. yes, i think the info on fibro has been helpful for me too. putting things into larger perspective only helps to address the causes and supports me in feeling like i have more of a chance of understanding, accepting, and responding to what is going on for me. hopefully this helps others, too.

                                       







sucuqu

Registered: 07/26/07
Posts: 197
Reply with quote  #30 

Pattiluv, you have sent me on a search and this article is the first -- I have more to read.   But i was amazed not only at the article info but all the comments by people and their own sensitivities to noise.   and also to bright lights, chemicals, etc.    I also could relate to the term "central sensitivity"  which i had never heard of --- but again sounds like me ---
 
http://chronicfatigue.about.com/b/2008/03/13/fibromyalgia-sensitivity-to-more-than-pain.htm

adding another where she mentions the hyperacusis board.  comments again really get me--how many people's lives are affected by this noise
 
http://chronicfatigue.about.com/b/2011/01/08/noise-sensitivity-fibromyalgia-chronic-fatigue-syndrome.htm

ok done for now,  Su
pattiluv

Registered: 02/05/08
Posts: 828
Reply with quote  #31 
Wow, su, great find especially for just starting! thanks for posting this. the comments are also very interesting. plus they also have a forum.
please let us know if you find other interesting sites. many thanks.
debIam

Registered: 06/28/10
Posts: 319
Reply with quote  #32 
Ok... took the time to study the links and wow.  I also have to be very careful about medications because of my reactions.  Also did away with all the usual cleaning chemicals.  Vinegar, Alcohol, borax are my mainstays now.  I do use All Free & Clear laundry det and until recently the Bounce F & C dryer sheets.   I am actively searching out ways to make my own cleaning agents...and shampoos etc.

I cannot stand most perfumes and manufactured scents these days.  People overwhelm their sense of smell and marinate themselves in scented products.  My eyes melt, my sinuses close up... my lungs get irritated. 

And food additives.. I've tried to avoid the worst..but recent studies show just how insideous (and deceptive) ingredient lists can be.  And...then there's the chemicals used to grow things.  It goes on and on and on.   I tried to find an organic peanut butter that didn't have crap in it.  Even the stuff that says 100% is NOT.   HFC became "corn sugar".  And I especially love this one... "no sugar added!!" and the ingredients say "evaporated cane juice".  SERIOUSLY????  If you evaporate cane juice...you get SUGAR. 

I have drastically changed my diet to avoid most processed foods.  I buy whole grain pasta...make my own dressings and sauces from scratch.  Organics where it makes the most sense, etc.  And still... I'm finding out new stuff almost everyday.  Avoiding most meat... organic chix and eggs ok so far.... I'm even changing my cat's diet!   Forget fish unless it's wild caught off the north american coast and even then it has to be in waters that aren't near polluting populations.

I filter our drinking and fridge water...and I probably should have a whole house filtration system to avoid bathing in pollutants.  Florida gov't has decided to side with special interests to pollute the water even more. 

I've had symptoms of fibro for years.  I've mentioned the soreness from time to time to docs...but basically got the shrug.  Now with all the commercials for drugs it seems that fibro is being taken more seriously....it's a profit center now.

But... I do not want to take more drugs.  I am not a profit center. 

I did not realize untill reading the links that hyperacusis was linked to fibromyalgia!  And that "central sensitivity" encompassed things like IBS. 

With the numbing array of chemicals we ingest daily (called FOOD) and breathe in, and absorb through our skins... is it any wonder people get sick? 

I am now more determined than ever to eliminate the garbage from my life.   I recently viewed a website   http://www.healthranger.org  that I found fascinating.  Check it out and let me know what you guys think.  Some of Mike Adams ideas are pretty radical... but that doesn't make him wrong.

Thanks Su, Patti et al for all the info!

deb


Johnloudb

Registered: 07/31/09
Posts: 1,734
Reply with quote  #33 
Quote:
Originally Posted by cbBen
It gets down to the word "tolerate."  To not be able tolerate something means to not be able to stand it.  It's like the Jerry Seinfeld joke about lactose intolerance:  "I have no patience for lactose, and I just won't stand for it."

So John you may have meant more along the lines of "not helpful" as you say in your post above, but at the same time I think it's good for Su to clarify just so everyone is clear.  

Yes, I agree Ben, poor choice of words on my part. 

__________________
John

~ Patience and Persistence Pays Off ~

My Story:
http://sites.google.com/site/johnsaudiopage/
Johnloudb

Registered: 07/31/09
Posts: 1,734
Reply with quote  #34 
Quote:
Originally Posted by Pattiluv
john, i think your comments about having conspiracy theories about trt doctors are in the category of flaming. please do not make this type of remark to me again. i insist upon fairness and respect.

I respect you and I was not trying to flame you. I thought it was a fair statement. After all you suggest the Dr. Jastreboff, Hazell, Dr. Robb, Dr. J, and others are misleading people about the success of TRT for personal gain? You say don't trust the TRT providers studies, or their account of rate of success?

More independent hyperacusis studies would be great, but who's going to pay for them?  Not the ATA, not the government. There is no AHA .... hmmm ... what to do? I don't have any money.

I'm sorry if you felt disrespected ... that wasn't my intention.

John

__________________
John

~ Patience and Persistence Pays Off ~

My Story:
http://sites.google.com/site/johnsaudiopage/
pattiluv

Registered: 02/05/08
Posts: 828
Reply with quote  #35 
Thank you, John, for clarifying.  No harm intended, that feels good.

as i've said before, i'm all for TRT and broadband and pink noise. i love it when someone does well with this.

so, a few points:

1) i went to Dr. Robb. I flew to Arizona from California. I read every book i could get my hands on and studied them well. So ... what does that make me? since i went to him and others selling me broadband therapy!

anyway... it does qualify me to comment at the very least.

2) here's the thing. everyone sells what they have to sell on their shelf. if you come into my store and ask for "xyz" and all i have is "abc", i will try to sell you abc. especially if i have been "trained" in abc and invested a lot of time and money in learning abc.

to me, every doctor is selling his or her store of knowledge, and perspectives, on how to do the right/ or most profitable/or most invested thing.

now... if you are a dermatologist and i want a wart removed, easy... i think, or relatively so.

if i go to a cancer doctor, i have options. chemo, radiation, mexico ("alternative treatments"), or possibly get worse and die. (ok i am simplifying here... bear with me.)

but with some things it gets way trickier. like with migraines. there are a hundred different causes. some doc will run thousands of dollars of tests and make big money. some will give you some meds. some will want to know the cause and some will tell you there is nothing you can do. not all migraines can be fixed. many people suffer horribly. same with dizziness, fibromyalgia, ms and many other diseases. there is no one or few treatments.

i would personally put hyperacusis in this category, it does not have just one cause, treatment, or cure. having done my own research on sound sensitivity, and brain hypersensitivity, i see hyperacusis as the end result of processes, some of which are unique to each person. genetics, early history, environment and more most likely influenced one getting h. and different people will find different coping strategies to best deal with their h.

3) some doctors are ethical and some are not. some more competent than others.

i have personally (just me now) been shocked at the level of incompetency i have encountered with h.

i realize it's because for the most part, IN MY EXPERIENCE ONLY, the audiologists i've met were quite unqualified to deal with h - in terms of my particular needs. honestly there are other types of professionals who have been far more helpful.

but i have seen others appear to do well with audiologists.

4) universities are publish or perish. if someone thought there was cheese down this tunnel they'd do a study. it's a rat race out there.

yes there is one study in the works as aqb pointed out. but remember: vets are a unique subpopulation. so its applicability to others must take this into account, that is, if we ever see the results.

as i've said, they only tend to publish results when trials are successful.

5) so not everything has a trial. i understand and do lots of stuff myself without insisting on this.

but i do insist on rigor before making claims for other than ones own experience. one cannot say, "most people do well on TRT". the most you can say is, I've done well and it seems to me that others have to.

big difference. and then i can say, "it didn't work for me and here's what i've noticed..." and then there is a genuine dialog.

6) why is this dialog important? alot of people can't tolerate broadband and TRT and it actually causes them harm.

-- ask the users, not the dealers! i don't trust authority 100%. skepticism is good. many people die from FDA approved things. like drugs! so we have to think for ourselves, here. Not everyone has your best interest at heart. that's just reality.

7) i think many people are done harm in doing TRT when this prevents them from exploring the causes of their h, as well as when the broadband injures them or undue exposure to noise. loud and even everyday sounds can be harmful if you have h and a compromised system!


whitenoiserocker

Avatar / Picture

Registered: 07/17/10
Posts: 149
Reply with quote  #36 
Apparently Men's and Women's Immune Systems Respond Differently to PTSD

ScienceDaily (Apr. 27, 2011) — Men and women had starkly different immune system responses to chronic post-traumatic stress disorder, with men showing no response and women showing a strong response, in two studies by researchers at the San Francisco VA Medical Center and the University of California, San Francisco.

http://www.sciencedaily.com/releases/2011/04/110426161535.htm
pattiluv

Registered: 02/05/08
Posts: 828
Reply with quote  #37 
very interesting research, thanks for posting. this may help explain why women are way more likely to get fibromyalgia than men.

however, as they note, this was a small sample size of 49 men and 18 women.

and it seems like they are just looking at the genetic differences. this would seem not to include variables like environment, chemical poisoning, personal history, psychology, etc.
Neylan emphasized that because of the small sample size, particularly among the women, the results of the two studies are suggestive rather than conclusive. "The next step is to look at larger groups of men and women, and we are working on that," he said.


malo12

Registered: 07/11/11
Posts: 34
Reply with quote  #38 
Quote:
as i understand it, ptsd can show up in the body as a kind of physical ocd. it means your body can't recuperate or "let go" of injuries. it is protecting today against what happened yesterday or some other time.

so a loud noise would be just such an example. your ear clamps down... but it doesn't recover, and keeps acting as if the noise is still there.
hence the interactions - mind - brain - truama - ptsd - and the low growth hormone could be another way the body reacts... leading to all sorts of immune disorders, or, perhaps all this contributes to a weakened immne system, then low igf?


that's interesting, and which may have some overlap with the following:

tinnitus, hyperacusis and vertigo (and fibromyalgia, migraine also) without specific cause may be part of the
Tension myositis syndrome:
http://en.wikipedia.org/wiki/Tension_myositis_syndrome
http://www.tmshelp.com/forum/topic.asp?TOPIC_ID=1382


pattiluv

Registered: 02/05/08
Posts: 828
Reply with quote  #39 
thanks for your link. what has been your experience? what have you cured?

i read his stuff - i don't think psychotherapy cures everything. there are organic causes.

they may link to the psyche... i am sure they do. but, if this was a sure fire way to heal, i think tens of millions of people would be raving about it.

now i agree... it would put a lot of doctors out of business so they won't tell you about this. but i just don't hear about large numbers of people getting over painful conditions with talk therapy and tossing out their meds.

but every now and then people do have spontaneous remissions from anything and everything, from tinnitus to hyperacusis to cancer.

and the placebo effect is very strong. can be up to 40%.

it would be nice to see some objective double blind studies on this.

malo12

Registered: 07/11/11
Posts: 34
Reply with quote  #40 
I replied somewhere else about my experience, but I am still trying to get better this way (I make some progress). Now I got some H and T as a result of hearing damage. I am trying to figure out whether non-organic H could be a same sort of manifestation since it involves both the autonomic nerve system and limbic system according to some scientific papers. TMS and chronic pain are also linked to these systems. Also, H often reacts positively to TRT/J&H which suggests there is a way to unlearn it which, to me, suggests that the same principles may be at work just like these that are applied in the TMS treatment. Also, I am a anxiety-focused person, probably as a result of bad events, and maybe my complaints have the same underlying cause in which the same mechanisms are at work.

Of course there are organic causes possible (these should be excluded first as suggested by the TMS theory).

Nowadays mainstream medicine is structurally focused and patients do not accept a psychological base easily that's probably why there is not much known about it. Some doctors in the US are applying it besides their normal organic focus.

Perfoming double blind RCT studies on this subject matter is difficult. That's probably another reason why it is not accepted by mainstream medicine.

In the books about TMS there are very convincing arguments mentioned (also some studies that plead for failure of traditional treatments).

pattiluv

Registered: 02/05/08
Posts: 828
Reply with quote  #41 
hi there,
i agree, mainstream medicine has many flaws! trust me, i have gotten on that soapbox so often my knees are getting a real workout!

i have no doubt that this TMS theory works for some people. i see reviews on amazon.com for his book and lots of people do swear by him.

however, one needs to distinguish: would they have gotten better on their own? is the placebo effect at work? and is this a representative sample?  it might very well work, but for people with certain configurations of conditions only. which ones?

i think there is a potential worry in this information in that it seems like it places a lot of emphasis on your personal history.

but sometimes genes conk out; body parts malfunction; sometimes we get poisoned; and other things happen that are not explained by personal history.

until there are solid double blind experiments, one should always realize they are an experiment too.

doesn't mean it is wrong. i just think people should accurately describe what they are up to.

and i do lots of things without double blind experiments, like take certain supplements.

however the more serious a procedure or illness involved, the more likely i am to insist on evidence that i am making a reasonable investment of my time, money, and life.

if it works for you, go for it! and let us know how it is helping.
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

This message board is for informational purposes only. It is not intended to substitute for any medical advice. MANDATORY BOARD ETIQUETTE: 1. No personal attacks. 2. No profanity or use of inappropriate usernames. 3. No advertisements. 4. Prohibitive postings include the following: discussing or suggesting the intent to end one's life, moderating or actions made by the moderators, and/or revealing personal information (full names, address, phone number). Rule infraction may result in either a warning or ban, depending on the severity. Kindness matters.
Powered by Website Toolbox - Create a Website Forum Hosting, Guestbook Hosting, or Website Chat Room for your website.