Hyperacusis

[Guest guest]

I there as treatment for tinnitus. I have learned to live with it but I

would love to get rid of it.'

Thanks

Steve

hyperacusis

From: DJIMBE17@...

thanks for the info, sue. what kind of treatment did she get? i already

have

tinitus and you mentioned a tinnitus treatment?

thanks,

mayra

ps, your daughter and i have such similar symptoms.

---------------------------

[Guest guest]

Hi Connie,

You are right...it's certain tones or decibels that drive me crazy. It

zips (or should I say zaps?) through my ears. down my neck, backbone

and out my feet. My husband who is very compassionate, is starting to be

bothered by my jumping at certain noises...especially when he's

driving...LOL! He wants me to wear earplugs.

How's your Hubby doing? Better, I hope.

Hugs,

Joan LI NY

[Guest guest]

Dear Joan, COnnie & All,

In reading this, I am reminded that I did not finish the article on

magnesium, which is now out on loan... Two more important factors were the

extra sensitivity to noise & that of the eyes to light! Sound " lymie " or

what???

Just my $.02 - LOL! - Hope this helps!

Blessings,

Chris

In a message dated 07/17/2000 2:32:35 PM Central Daylight Time,

Namkrats3@... writes:

<< You are right...it's certain tones or decibels that drive me crazy. It

zips (or should I say zaps?) through my ears. down my neck, backbone

and out my feet. >>

[Guest guest]

HI

You are right about the sound and light, it drives me crazy. Sound makes

my body jerk and I cover my eyes so I can sleep.

I jump all the time in the car, my husband tells me to wear a brown bag

and ear plugs, so I cannot see or hear what is going on around us.

Hugs to all,

Connie, MI

[Guest guest]

Hi Joan,

I do wear earplugs often. thank you for asking about my hubby. He was

told in May he could no longer work, half of his heart muscle is dead. So he

applied for SS. Hopefully it will go thru.

I knew I wouldn't spell that word right. Must be the lyme brain and

typist.

hugs to you,

Connie, MI

[Guest guest]

Dear Sue,

Thank you so much for the info. on Dan Malcore's website for hyperacusis.

I looked it up (typed Malcore into the search engine) and found

a wealth of good info.

I really appreciated your writing.

Marie

[Guest guest]

This severity may not be common in Lyme, but it does exist. Hyperacusis and

tinnitus specialists I've spoken to all said, " If you have both severe

hyperacusis and CFIDS, think Lyme... "

I think there's nothing so special about hyperacusis that it qualifies you

in or out for Lyme, yet I think the idea of looking at combinations of

crucial sx in a Lyme educated way can get you places. EM rashes (there are

many types BTW, different sizes, and even different timings), alone suffice

to rule you in. Some combos of neuro/cardiac sx in the context of a

youngish, or low risk individual for heart disease, joint and muscle pains

(depending on your specific strain), heavy memory and concentration pbs,

vertigo/dizziness etc. But response to certain abx (high dose doxy for eg)

causing almost unbearable Herxes, just a few things that would make me think

Lyme.

PS I don't have hyperacusis, but I had an EM rash.

Nelly

hyperacusis

> Dear E.,

>

> You wrote, " You aren't saying that [people with] ME/ " CFS " don't get

> hyperacusis right, just that they don't get it nearly as bad as Lymies? "

>

> Right. Not NEARLY as badly. I've never heard of anyone with CFIDS whose

> hyperacusis was so bad he couldn't tolerate the rustle of a newspaper's

> page being turned; or couldn't watch T.V. with the sound off (it hums); or

> couldn't be in the same room with a refrigerator; or couldn't use a

> computer because of the hum; or couldn't listen to music at all; or talk

on

> the phone; or flush a toilet; or eat with metal silverware or pottery

> dishes; or walk through fall leaves, etc.

>

> This severity may not be common in Lyme, but it does exist. Hyperacusis

and

> tinnitus specialists I've spoken to all said, " If you have both severe

> hyperacusis and CFIDS, think Lyme... "

>

> I think it's good that Dr. Cheney prescribes Klonopin for so many of his

> patients; I think it might help prevent severe hyperacusis.

>

> Sue B.

> upstate New York

>

>

>

>

> This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

>

[Guest guest]

i haven't been following this - don't know what i've missed, but i've

definitely had this... i couldn't listen to music for years. not until

i was on the formula 560 for several months... i'm just on one a day

now (you cannot maintain on just one) i was able to tolerate some bass

& treble on the full dose. i'm back to zero bass and treble again, but

still listen to a little bit. in the car with the radio on, some weird

noise will make me 'bout jump through the roof, then i'll realize it's

in the song on the radio. weird..... i'm pretty sure i have ME/CFS...

i started in 1980 with what was called mono for 3 yrs.......?

<<< Dear E.,

You wrote, " You aren't saying that [people with] ME/ " CFS " don't get

hyperacusis right, just that they don't get it nearly as bad as Lymies? "

Right. Not NEARLY as badly. I've never heard of anyone with CFIDS whose

hyperacusis was so bad he couldn't tolerate the rustle of a newspaper's

page being turned; or couldn't watch T.V. with the sound off (it hums);

or couldn't be in the same room with a refrigerator; or couldn't use a

computer >>>

~~~~~~~~~~~~~~~~~~~~~~~~~

" Would they have found nothing, unless nothing was what they wanted to

find? " - Agent Dales, X-Files

@}{~{<<~~~~~~~~~~~~~~~~~~~~

@}{~{<<~~~~~~~~~~~~~~~~~~~~

debbie s. - dlsherman@...

[Guest guest]

i have hypercusis so bad, i hate it because it separates me from family and

friends, because i cant stand it when they talk too loud, at least it feels

like it to me, and paper rustling........oh my GOd!!!! i would do anything to

make this better!! anyone have any suggestions?? thanks

Radha

[Guest guest]

Ginkgo biloba helped me with this - Jennie

--- radha21@... wrote:

> i have hypercusis so bad, i hate it because it

> separates me from family and

> friends, because i cant stand it when they talk too

> loud, at least it feels

> like it to me, and paper rustling........oh my

> GOd!!!! i would do anything to

> make this better!! anyone have any suggestions??

> thanks

> Radha

>

__________________________________________________

[Guest guest]

Rhada:

Concerning the hyperacusis, are you on Klonopin? Are you familiar

with Klonopin? It seems to have helped me with my hyperacusis.

Actually I've had a return of it in the last couple of days, maybe due

to the Bee Stinging I've been doing stirring hings up.??? I take a

little extra klonopin during the day to control it. like 1/2/ to 3/4 of

a .5 mg. tab instead of 1/4 of a tab. I'm interested in whether you are

already Klonopin it and still have bad Hyperacusis. Also, how do you

experience it? For me, It's mostly loud sharp sounds, and I hear a kind

of klack or thump just after the initial noise (this is known as

afterhearing). Rustling paper bothers me too, but not like you.

If you are not familiar with Cheneys views on controlling sensory

oversensitivity with klonopin I can back channel you a collection of

Carol Sieverling posts on the subject which I've spliced together. His

theory seems to make sense. Other neuroprotective things that might

help a little are Magnesium and the amino acid Taurine. There are also

other drugs.

Has anyone else experienced improvement of Hyperacusis on Klonopin?

I'd also like to know if anyone else experiences the afterhearing

effect.

E.

[Guest guest]

Hi, Radha,

>i have hypercusis so bad, i hate it because it separates me from family and

>friends, because i cant stand it when they talk too loud, at least it feels

>like it to me, and paper rustling........oh my GOd!!!! i would do anything

>to make this better!! anyone have any suggestions?? thanks

There are earplugs made for musicians, which cut sound evenly across all

frequencies by about half. You would have to see an audiologist to get them,

and they cost over $100.

I have a pair, and they work well for my needs - I play in a community band,

and on some nights even one trumpet is too loud. Other nights I can sit in

front of the whole brass section playing a loud fanfare & have no problem. I

would think that they would work for someone with hyperacusis, while still

allowing you to hear all pitches.

Jerry

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Francine,

I have it! I can't tell you how much TV and radio bother me. My family

is forever having to turn the mute button on when I'm around. It's so

hard for them to understand. What IS it about the sound? It is almost

painful.... exhausting - causes instantaneous wipe-out. None of my

doctors even gave it any importance until I found an LLMD. I am so

relieved (selfishly) to know that others experience this. It's hard to

explain.

Healing to all, Marie

[Guest guest]

Marie, How do you deal with it? I can get actual " panic attacks " from even

regular normal noise! even from someone talking! gets on my nerves. I need

absolute quiet. .

Francine RNNJ

[Guest guest]

My son was diagnosed as hyperaccusic by two different doctors when he was

younger. We haven't had him re-checked since treating this with auditory

programs but I don't think he'd still have that diagnosis. He used to tell us

what

they neighbors were saying from inside their house when he was inside our

house. Be careful what you say if you live next door to a hyperaccusic person!

Gaylen

[Guest guest]

I know my child had hyperacusis, even though he was never diagnosed. Like so

many things one can observe clinially.

Since the age of 5 (he's 18) he to suffers from tinittis (ringing of the

ear), which is sometimes related to automimmune problems (as in Meuniere's)

;but it is so nonspecific that is not worth being diagnosed as there is no

real treatment and almost impossible to find the origin of.

-- Original Message -----

From: " base2 " <base2@...>

< >

Sent: Sunday, August 28, 2005 2:06 PM

Subject: hyperacusis

> I've mentioned sound sensitivity before, but I'm wondering

> if anyone here has a child with an actual diagnosis of

> hyperacusis? I'm just wondering if this could be somehow

> related to . Although I do realize areas affected and

> levels can vary quite a bit from person to person..

>

>

>

>

>

>

> Responsibility for the content of this message lies strictly with

> the original author(s), and is not necessarily endorsed by or the

> opinion of the Research Institute and/or the Parent Coalition.

>

>

[Guest guest]

Autoimmue? How fascinating that these things sort of weave together.

But also, very frustrating. I wonder if medication and sound

programs can make this worse. I keep wondering if Adderall set

it off in my son. Or if doing FFW this summer made it worse.

I did buy my son earplugs finally and am looking into " maskers "

(pink noise hearing maskers). One thing I read about this condition

is that something like 40% of kids with autism have it (I'm not sure

how accurate that statistic is). I guess this is just one more symptom

to add to the list. :-(

> Since the age of 5 (he's 18) he to suffers from tinittis (ringing of

> the

> ear), which is sometimes related to automimmune problems (as in

> Meuniere's)

[Guest guest]

my son had this dx. also. I could certainly see it as

a baby. but then, it improved. I was told that his

brain shuts off his hearing as a protective measure.

this has been a real problem in school as he is trying

to learn. It did not improve with listening programs

we tried.

--- base2 <base2@...> wrote:

> Autoimmue? How fascinating that these things sort of

> weave together.

> But also, very frustrating. I wonder if medication

> and sound

> programs can make this worse. I keep wondering if

> Adderall set

> it off in my son. Or if doing FFW this summer made

> it worse.

> I did buy my son earplugs finally and am looking

> into " maskers "

> (pink noise hearing maskers). One thing I read about

> this condition

> is that something like 40% of kids with autism have

> it (I'm not sure

> how accurate that statistic is). I guess this is

> just one more symptom

> to add to the list. :-(

>

>

>

>

> > Since the age of 5 (he's 18) he to suffers from

> tinittis (ringing of

> > the

> > ear), which is sometimes related to automimmune

> problems (as in

> > Meuniere's)

>

>

Barb Katsaros

barbkatsaros@...

[Guest guest]

I'm wondering if the auditory program we did might

have caused something that previously had been

a potential. For example, maybe his poor auditory

processing was actually protecting him, while

training it has now made it difficult for him to

ignore these sounds.

On Aug 30, 2005, at 5:10 PM, Barb Katsaros wrote:

> my son had this dx. also. I could certainly see it as

> a baby. but then, it improved. I was told that his

> brain shuts off his hearing as a protective measure.

> this has been a real problem in school as he is trying

> to learn. It did not improve with listening programs

> we tried.

>

[Guest guest]

I don't know. Have you asked your audiologist about

it? I know that did not happen with us. I really

didn't see any changes from either auditory

program--samonas or listening program.

--- base2 <base2@...> wrote:

> I'm wondering if the auditory program we did might

> have caused something that previously had been

> a potential. For example, maybe his poor auditory

> processing was actually protecting him, while

> training it has now made it difficult for him to

> ignore these sounds.

>

>

>

> On Aug 30, 2005, at 5:10 PM, Barb Katsaros wrote:

>

> > my son had this dx. also. I could certainly see

> it as

> > a baby. but then, it improved. I was told that

> his

> > brain shuts off his hearing as a protective

> measure.

> > this has been a real problem in school as he is

> trying

> > to learn. It did not improve with listening

> programs

> > we tried.

> >

>

>

Barb Katsaros

barbkatsaros@...

[Guest guest]

I can only guess about this. At the end of this week

I'm taking my son to see a doctor who specializes

in this. Hopefully I can learn more.

On Aug 30, 2005, at 10:23 PM, Barb Katsaros wrote:

> I don't know. Have you asked your audiologist about

> it? I know that did not happen with us. I really

> didn't see any changes from either auditory

> program--samonas or listening program.

>

[Guest guest]

let me know what you find out? Barb

--- base2 <base2@...> wrote:

> I can only guess about this. At the end of this week

> I'm taking my son to see a doctor who specializes

> in this. Hopefully I can learn more.

>

>

>

> On Aug 30, 2005, at 10:23 PM, Barb Katsaros wrote:

>

> > I don't know. Have you asked your audiologist

> about

> > it? I know that did not happen with us. I really

> > didn't see any changes from either auditory

> > program--samonas or listening program.

> >

>

>

Barb Katsaros

barbkatsaros@...

[Guest guest]

Absolutely!!! :-)

On Aug 31, 2005, at 12:14 PM, Barb Katsaros wrote:

> let me know what you find out? Barb

>

[Guest guest]

OMG that has a name! ... another connection to

childhood. I had to tell my neighbor that I was

hearing everything they said in certain rooms, and

tell people I worked with that if they whispered, it

somehow alerted my ears and I would hear everything

they said... I could also never understand why it

came and went on occasion.

Gosh. One thing about having a " ASD " son... it

helps me understand soooo much more about my childhood

and early adulthood - that terrible sense of oddness -

nowhere but in the 'asd' world had I ever heard of

anyone else having these traits that I grew up with.

I used to feel like the biggest freak, and knew I was

sooo different, and was so distressed wondering why.

If anything good can ever come out of having a child

diagnosed with this, I at least understand my life

experience from a very different side now, and have so

much more optimism for the future - hard work and all.

Just remember: we're aware of our child's issues, what

causes them, what we can do about it. I never

communicated mine, never understood them, was never

treated, and yet I managed to grow up pretty much like

most people and have a fascination for life and

learning, and an optimistic outlook, albeit w/ a

little baggage of course... Just remember that what

you see now does NOT predict a horrible future for

your child.

I reflect back so much when I'm reading this list and

recognizing myself in even more ways than I recognize

my hf son, and it gives me the most hope for him and

others who are being brought up with the understanding

of this disorder and guidance towards overcoming

obstacles hopefully a little more easily than the

generation we grew up in.

Different the strokes for different folks!

--- Googahly@... wrote:

> My son was diagnosed as hyperaccusic by two

> different doctors when he was

> younger. We haven't had him re-checked since

> treating this with auditory

> programs but I don't think he'd still have that

> diagnosis. He used to tell us what

> they neighbors were saying from inside their house

> when he was inside our

> house. Be careful what you say if you live next

> door to a hyperaccusic person!

> Gaylen

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

, you should really write a book. You've got

lots of good and inspiring stories! Barb

--- <thecolemans4@...> wrote:

> OMG that has a name! ... another connection to

> childhood. I had to tell my neighbor that I was

> hearing everything they said in certain rooms, and

> tell people I worked with that if they whispered, it

> somehow alerted my ears and I would hear everything

> they said... I could also never understand why it

> came and went on occasion.

>

> Gosh. One thing about having a " ASD " son... it

> helps me understand soooo much more about my

> childhood

> and early adulthood - that terrible sense of oddness

> -

> nowhere but in the 'asd' world had I ever heard of

> anyone else having these traits that I grew up with.

>

> I used to feel like the biggest freak, and knew I

> was

> sooo different, and was so distressed wondering why.

>

> If anything good can ever come out of having a child

> diagnosed with this, I at least understand my life

> experience from a very different side now, and have

> so

> much more optimism for the future - hard work and

> all.

>

> Just remember: we're aware of our child's issues,

> what

> causes them, what we can do about it. I never

> communicated mine, never understood them, was never

> treated, and yet I managed to grow up pretty much

> like

> most people and have a fascination for life and

> learning, and an optimistic outlook, albeit w/ a

> little baggage of course... Just remember that what

> you see now does NOT predict a horrible future for

> your child.

>

> I reflect back so much when I'm reading this list

> and

> recognizing myself in even more ways than I

> recognize

> my hf son, and it gives me the most hope for him and

> others who are being brought up with the

> understanding

> of this disorder and guidance towards overcoming

> obstacles hopefully a little more easily than the

> generation we grew up in.

>

> Different the strokes for different folks!

>

>

>

> --- Googahly@... wrote:

>

> > My son was diagnosed as hyperaccusic by two

> > different doctors when he was

> > younger. We haven't had him re-checked since

> > treating this with auditory

> > programs but I don't think he'd still have that

> > diagnosis. He used to tell us what

> > they neighbors were saying from inside their house

> > when he was inside our

> > house. Be careful what you say if you live next

> > door to a hyperaccusic person!

> > Gaylen

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

> __________________________________________________

>