Re: hyperacusis (hypersensitive hearing)

[Guest guest]

In a message dated 5/12/2004 7:06:06 PM Eastern Standard Time,

greytwhisperer@... writes:

Loud noises cause me to spasm violently. I can't stand it. I don't think

that I could stand wearing ear plugs all of the time either. Next week, I

ll be getting another hearing test....and finally...June 2nd, I will see Dr.

Enns at Stanford (a mito doc)! Yes!!!

HI ,

Is Dr Enns seeing adults? Does he have a mito center set up at this point? I

have e-mailed with him many times in the past 6 mths and he has been great at

helping me. They are testing glutathione levels there starting this spring (a

type of anti-oxidant that may be deficient in mito patients), starting MRS

testing of the muscle with mito patients, and may start testing muscle biopsies

in the future. I have been very impressed with what they are doing out there

and Dr Enns seems to have a wonderful bedside manner from what I have seen.

Malisa

[Guest guest]

In a message dated 5/12/2004 8:24:38 PM Eastern Standard Time,

greytwhisperer@... writes:

One of Dr. Enns specialities and research is listed as Mitochondrial

Disorders. He is seeing me and I am 52, far from being a kid, although it

is in the Dept. of Pediatrics. That seems to be the places I end up at..

pediatrics.

Hi ,

Dr Korson (mito specialist) in Boston is the same way. He is also in

pediatrics and sees adults. I always find children's hospitals more friendly

anyway,

so I'm not complaining! The irony of it is that I work as a nurse at a

Children's Hospital and my area of interest is developing programs for teens and

young

adults with chronic illness as they transition into adulthood. We are trying

to find ways to transition them OUT of the pediatric hospitals. So, at age 26,

I am kinda working against myself! LOL

The page you sent just took me to the general Stanford page, but I put in Dr

Enns' name and found the info. on him. I coped it below for anyone else. He

really does seem to be very well informed about mito and very compassionate.

When is your appt? Please let me know how it goes. You've seen him before right,

or is this your first time?

Malisa

M Enns, MD

Director, Biochemical Genetics Program

Assistant Professor

<< PrevNew SearchNext >>

Clinic:Medical Genetics

770 Welch Road

Suite 201

Palo Alto, CA 94304

Fax:

Physician Referrals:

Office:Medical Genetics Division

300 Pasteur Dr

Rm. H315, MC: 5208

Stanford, CA 94305

Specialties:Genetics

Sub-Specialties:Metabolic Disease

Mitochondrial Disorders

Lysosomal Storage Disease

Research Interests:Mitochondrial Disorders

Newborn Screening

Inborn Errors of Metabolism

Professional Education:University of St. s, St. s, Scotland, 1990

Residency:Childrens Hospital Of Los Angeles, Los Angeles, CA, 1995

Fellowship:UCSF Medical Center, San Francisco, CA, 1998

Board Certification:Genetics, American Board of Medical Genetics

Pediatrics, American Board of Pediatrics

Years on Staff:5

[Guest guest]

I used to have recruitment problems and now I have a small hearing loss.

Anita wrote:

>Hi Folks, I know from the short time of been in the group (and from

>reading about mito diseases) that hearing difficulting seem to be

>common; deafness, tinnitis, etc. I was wondering if anyone has

>hyperacusis, the reverse of deafness or extremely hypersensitive

>hearing. I have to wear two kinds of earplugs at once just to make it

>through the noise of things like movies and malls without seizing. Being

>a musician I can't wear them to work and the noise levels drive me nuts.

>

>Just wondering........Thanks!

>Anita

>

>

>

>

>Medical advice, information, opinions, data and statements contained herein are

not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

>

>Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

>

>

[Guest guest]

Hi Anita,

I don't know if I am truly hypersensitive or if it is just me, but noise

does bother me very much. I am not a nervous person by nature, but noise

can sure make me edgy. Is this the kind of thing you mean?

Smiles to you,

hyperacusis (hypersensitive hearing)

> Hi Folks, I know from the short time of been in the group (and from

> reading about mito diseases) that hearing difficulting seem to be

> common; deafness, tinnitis, etc. I was wondering if anyone has

> hyperacusis, the reverse of deafness or extremely hypersensitive

> hearing. I have to wear two kinds of earplugs at once just to make it

> through the noise of things like movies and malls without seizing. Being

> a musician I can't wear them to work and the noise levels drive me nuts.

>

> Just wondering........Thanks!

> Anita

>

>

>

>

> Medical advice, information, opinions, data and statements contained

herein are not necessarily those of the list moderators. The author of this

e mail is entirely responsible for its content. List members are reminded of

their responsibility to evaluate the content of the postings and consult

with their physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

>

>

[Guest guest]

Loud noises cause me to spasm violently. I can't stand it. I don't think

that I could stand wearing ear plugs all of the time either. Next week, I

ll be getting another hearing test....and finally...June 2nd, I will see Dr.

Enns at Stanford (a mito doc)! Yes!!!

Blessings to you all,

Kaspick

-- hyperacusis (hypersensitive hearing)

Hi Folks, I know from the short time of been in the group (and from

reading about mito diseases) that hearing difficulting seem to be

common; deafness, tinnitis, etc. I was wondering if anyone has

hyperacusis, the reverse of deafness or extremely hypersensitive

hearing. I have to wear two kinds of earplugs at once just to make it

through the noise of things like movies and malls without seizing. Being

a musician I can't wear them to work and the noise levels drive me nuts.

Just wondering........Thanks!

Anita

Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail

is entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with

their physicians regarding changes in their own treatment.

Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

[Guest guest]

My son has hypersensitive hearing (he is sensory sensitive in other ways as

well.) My mother had hypersensitive hearing and then in a few months lost

much of it and had a couple of episodes where she lost all hearing and it

returned in the morning.

laurie

>

> Reply-To:

> Date: Wed, 12 May 2004 15:57:05 -0700 (Pacific Daylight Time)

> To: >

> Subject: Re: hyperacusis (hypersensitive hearing)

>

> Loud noises cause me to spasm violently. I can't stand it. I don't think

> that I could stand wearing ear plugs all of the time either. Next week, I

> ll be getting another hearing test....and finally...June 2nd, I will see Dr.

> Enns at Stanford (a mito doc)! Yes!!!

>

> Blessings to you all,

> Kaspick

>

> -- hyperacusis (hypersensitive hearing)

>

> Hi Folks, I know from the short time of been in the group (and from

> reading about mito diseases) that hearing difficulting seem to be

> common; deafness, tinnitis, etc. I was wondering if anyone has

> hyperacusis, the reverse of deafness or extremely hypersensitive

> hearing. I have to wear two kinds of earplugs at once just to make it

> through the noise of things like movies and malls without seizing. Being

> a musician I can't wear them to work and the noise levels drive me nuts.

>

> Just wondering........Thanks!

> Anita

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail

> is entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with

> their physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

[Guest guest]

Hi , Thanks for the reply. I' m glad your hearing loss is

small and hope it will never get any worse.

Best Wishes,

Anita

>

> >Hi Folks, I know from the short time of been in the group (and

from

> >reading about mito diseases) that hearing difficulting seem to

be

> >common; deafness, tinnitis, etc. I was wondering if anyone

has

> >hyperacusis, the reverse of deafness or extremely

hypersensitive

> >hearing. I have to wear two kinds of earplugs at once just to

make it

> >through the noise of things like movies and malls without

seizing. Being

> >a musician I can't wear them to work and the noise levels

drive me nuts.

> >

> >Just wondering........Thanks!

> >Anita

> >

> >

> >

> >

> >Medical advice, information, opinions, data and statements

contained herein are not necessarily those of the list

moderators. The author of this e mail is entirely responsible for

its content. List members are reminded of their responsibility to

evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

> >

> >Personal attacks are not permitted on the list and anyone

who sends one is automatically moderated or removed

depending on the severity of the attack.

> >

> >

[Guest guest]

Hi , Thanks for your reply. Interesting that noise also

bothers you, too. I'm probably quite a bit past where I think you

might be with it now. I can't manage to even be NEAR noise

without my ear canal foam earplugs and my earmuff-type noise

reducers like marksmen use. Even WITH them malls and

movies are tough. Forget parties. Leaf blowers and lawn

mowers in the neighbourhood cause real pain and agony and

the night the high school graduates set off large fireworks

without warning on the hill behind our house about a block away

I thought I would die.

I pray yours never progresses.

Smile back!

Anita

> Hi Anita,

>

> I don't know if I am truly hypersensitive or if it is just me, but

noise

> does bother me very much. I am not a nervous person by

nature, but noise

> can sure make me edgy. Is this the kind of thing you mean?

>

> Smiles to you,

>

>

>

> hyperacusis (hypersensitive hearing)

>

>

> > Hi Folks, I know from the short time of been in the group (and

from

> > reading about mito diseases) that hearing difficulting seem

to be

> > common; deafness, tinnitis, etc. I was wondering if anyone

has

> > hyperacusis, the reverse of deafness or extremely

hypersensitive

> > hearing. I have to wear two kinds of earplugs at once just to

make it

> > through the noise of things like movies and malls without

seizing. Being

> > a musician I can't wear them to work and the noise levels

drive me nuts.

> >

> > Just wondering........Thanks!

> > Anita

> >

> >

> >

> >

> > Medical advice, information, opinions, data and statements

contained

> herein are not necessarily those of the list moderators. The

author of this

> e mail is entirely responsible for its content. List members are

reminded of

> their responsibility to evaluate the content of the postings and

consult

> with their physicians regarding changes in their own treatment.

> >

> > Personal attacks are not permitted on the list and anyone

who sends one is

> automatically moderated or removed depending on the severity

of the attack.

> >

> >

[Guest guest]

Hi Malisa!

One of Dr. Enns specialities and research is listed as Mitochondrial

Disorders. He is seeing me and I am 52, far from being a kid, although it

is in the Dept. of Pediatrics. That seems to be the places I end up at..

pediatrics. I like the little chairs and toys they have! Don't quite fit

into the little gowns, though! His info is here (although, if you've

e-mailed him, then you pretty much know about him, except this link confirms

his mito research.) I can't wait to, finally, see a doctor who knows what

is happening to me. I have a lot of gathering, copying, and sending him my

old medical records before my appointment, though.

And, having my present doctors fax my records to him, even eye doctor and

dentist.

http://www.stanfordhospital.com/findPhysician/search/doc

pl?doc=16516&resultSet=16516

Blessings,

Kaspick

-- Re: hyperacusis (hypersensitive hearing)

In a message dated 5/12/2004 7:06:06 PM Eastern Standard Time,

greytwhisperer@... writes:

Loud noises cause me to spasm violently. I can't stand it. I don't think

that I could stand wearing ear plugs all of the time either. Next week, I

ll be getting another hearing test....and finally...June 2nd, I will see Dr.

Enns at Stanford (a mito doc)! Yes!!!

HI ,

Is Dr Enns seeing adults? Does he have a mito center set up at this point? I

have e-mailed with him many times in the past 6 mths and he has been great

at

helping me. They are testing glutathione levels there starting this spring

(a

type of anti-oxidant that may be deficient in mito patients), starting MRS

testing of the muscle with mito patients, and may start testing muscle

biopsies

in the future. I have been very impressed with what they are doing out there

and Dr Enns seems to have a wonderful bedside manner from what I have seen.

Malisa

[Guest guest]

Hi , Congratulations on your upcoming appointment with a

real mito doc!. Hope it's all you are hoping for.

Curious what you hearing test will show. I think my doc said I'm

in the 100th percentile. If they had a 101th percentile I think I'd be

there.

Thanks for your reply about the hyperacusis. Sounds like we're

on the same page there. I'm fortunate to live in the country, so as

long as I stay home I'm fine without earplugs....unless my

husband is practising his tuba!

Best Wishes,

Anita

> Loud noises cause me to spasm violently. I can't stand it. I

don't think

> that I could stand wearing ear plugs all of the time either. Next

week, I

> ll be getting another hearing test....and finally...June 2nd, I will

see Dr.

> Enns at Stanford (a mito doc)! Yes!!!

>

> Blessings to you all,

> Kaspick

>

> -- hyperacusis (hypersensitive hearing)

>

> Hi Folks, I know from the short time of been in the group (and

from

> reading about mito diseases) that hearing difficulting seem to

be

> common; deafness, tinnitis, etc. I was wondering if anyone has

> hyperacusis, the reverse of deafness or extremely

hypersensitive

> hearing. I have to wear two kinds of earplugs at once just to

make it

> through the noise of things like movies and malls without

seizing. Being

> a musician I can't wear them to work and the noise levels drive

me nuts.

>

> Just wondering........Thanks!

> Anita

>

>

>

> Medical advice, information, opinions, data and statements

contained herein

> are not necessarily those of the list moderators. The author of

this e mail

> is entirely responsible for its content. List members are

reminded of their

> responsibility to evaluate the content of the postings and

consult with

> their physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who

sends one is

> automatically moderated or removed depending on the severity

of the attack.

>

>

>

>

[Guest guest]

Hi Laurie, I t sounds like I share some symptoms with your son.

My whole nervous system/sensory system is hyper sensitive,

too. Could I ask what his diagnosis is? I'm still trying to put

together pieces of my puzzle. Until I can get a diagnosis I'm just

trying to learn as much as I can. Your mom's hearing certainly

took some strange turns, didn't it?

Best Wishes,

Anita

>

>

> My son has hypersensitive hearing (he is sensory sensitive in

other ways as

> well.) My mother had hypersensitive hearing and then in a few

months lost

> much of it and had a couple of episodes where she lost all

hearing and it

> returned in the morning.

>

> laurie

>

> > From: " Kaspick "

> > Reply-To:

> > Date: Wed, 12 May 2004 15:57:05 -0700 (Pacific Daylight

Time)

> > To: >

> > Subject: Re: hyperacusis (hypersensitive hearing)

> >

> > Loud noises cause me to spasm violently. I can't stand it. I

don't think

> > that I could stand wearing ear plugs all of the time either.

Next week, I

> > ll be getting another hearing test....and finally...June 2nd, I will

see Dr.

> > Enns at Stanford (a mito doc)! Yes!!!

> >

> > Blessings to you all,

> > Kaspick

> >

> > -- hyperacusis (hypersensitive hearing)

> >

> > Hi Folks, I know from the short time of been in the group (and

from

> > reading about mito diseases) that hearing difficulting seem

to be

> > common; deafness, tinnitis, etc. I was wondering if anyone

has

> > hyperacusis, the reverse of deafness or extremely

hypersensitive

> > hearing. I have to wear two kinds of earplugs at once just to

make it

> > through the noise of things like movies and malls without

seizing. Being

> > a musician I can't wear them to work and the noise levels

drive me nuts.

> >

> > Just wondering........Thanks!

> > Anita

> >

> >

> >

> > Medical advice, information, opinions, data and statements

contained herein

> > are not necessarily those of the list moderators. The author

of this e mail

> > is entirely responsible for its content. List members are

reminded of their

> > responsibility to evaluate the content of the postings and

consult with

> > their physicians regarding changes in their own treatment.

> >

> > Personal attacks are not permitted on the list and anyone

who sends one is

> > automatically moderated or removed depending on the

severity of the attack.

> >

> >

> >

> >

[Guest guest]

It is so embarrassing, to go to a movie, and have something fly across the

screen, " boom " ...and there I go jerking all over the place. I'm glad it's

dark! Can't wear ear plugs, 'cause then the actors have to whisper about

something and I can't hear them, then.

-- Re: hyperacusis (hypersensitive hearing)

Hi , Thanks for your reply. Interesting that noise also

bothers you, too. I'm probably quite a bit past where I think you

might be with it now. I can't manage to even be NEAR noise

without my ear canal foam earplugs and my earmuff-type noise

reducers like marksmen use. Even WITH them malls and

movies are tough. Forget parties. Leaf blowers and lawn

mowers in the neighbourhood cause real pain and agony and

the night the high school graduates set off large fireworks

without warning on the hill behind our house about a block away

I thought I would die.

I pray yours never progresses.

Smile back!

Anita

> Hi Anita,

>

> I don't know if I am truly hypersensitive or if it is just me, but

noise

> does bother me very much. I am not a nervous person by

nature, but noise

> can sure make me edgy. Is this the kind of thing you mean?

>

> Smiles to you,

>

>

>

> hyperacusis (hypersensitive hearing)

>

>

> > Hi Folks, I know from the short time of been in the group (and

from

> > reading about mito diseases) that hearing difficulting seem

to be

> > common; deafness, tinnitis, etc. I was wondering if anyone

has

> > hyperacusis, the reverse of deafness or extremely

hypersensitive

> > hearing. I have to wear two kinds of earplugs at once just to

make it

> > through the noise of things like movies and malls without

seizing. Being

> > a musician I can't wear them to work and the noise levels

drive me nuts.

> >

> > Just wondering........Thanks!

> > Anita

> >

> >

> >

> >

> > Medical advice, information, opinions, data and statements

contained

> herein are not necessarily those of the list moderators. The

author of this

> e mail is entirely responsible for its content. List members are

reminded of

> their responsibility to evaluate the content of the postings and

consult

> with their physicians regarding changes in their own treatment.

> >

> > Personal attacks are not permitted on the list and anyone

who sends one is

> automatically moderated or removed depending on the severity

of the attack.

> >

> >

[Guest guest]

Thanks Anita!

Blessings,

-- hyperacusis (hypersensitive hearing)

>

> Hi Folks, I know from the short time of been in the group (and

from

> reading about mito diseases) that hearing difficulting seem to

be

> common; deafness, tinnitis, etc. I was wondering if anyone has

> hyperacusis, the reverse of deafness or extremely

hypersensitive

> hearing. I have to wear two kinds of earplugs at once just to

make it

> through the noise of things like movies and malls without

seizing. Being

> a musician I can't wear them to work and the noise levels drive

me nuts.

>

> Just wondering........Thanks!

> Anita

>

>

>

> Medical advice, information, opinions, data and statements

contained herein

> are not necessarily those of the list moderators. The author of

this e mail

> is entirely responsible for its content. List members are

reminded of their

> responsibility to evaluate the content of the postings and

consult with

> their physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who

sends one is

> automatically moderated or removed depending on the severity

of the attack.

>

>

>

>

[Guest guest]

Anita

My son is diagnosed with mito, Ehuler Danlos Syndrome and is a Thallesemia B

carrier. He was never diagnosed with autism, but if he were in school now,

he would probably be diagnosed with Asperger's syndrome which is on the

spectrum of autism. Even at 29, he has problems tolerating loud sounds,

bright lights, light touch and lots of movement. He use to have a terrible

time tolerating clothing. They have determined that autism has something to

do with mitochondria.

laurie

>

> Reply-To:

> Date: Wed, 12 May 2004 23:51:16 -0000

> To:

> Subject: Re: hyperacusis (hypersensitive hearing)

>

>

> Hi Laurie, I t sounds like I share some symptoms with your son.

> My whole nervous system/sensory system is hyper sensitive,

> too. Could I ask what his diagnosis is? I'm still trying to put

> together pieces of my puzzle. Until I can get a diagnosis I'm just

> trying to learn as much as I can. Your mom's hearing certainly

> took some strange turns, didn't it?

>

> Best Wishes,

> Anita

>

>

>

>>

>>

>> My son has hypersensitive hearing (he is sensory sensitive in

> other ways as

>> well.) My mother had hypersensitive hearing and then in a few

> months lost

>> much of it and had a couple of episodes where she lost all

> hearing and it

>> returned in the morning.

>>

>> laurie

>>

>>> From: " Kaspick "

>>> Reply-To:

>>> Date: Wed, 12 May 2004 15:57:05 -0700 (Pacific Daylight

> Time)

>>> To: >

>>> Subject: Re: hyperacusis (hypersensitive hearing)

>>>

>>> Loud noises cause me to spasm violently. I can't stand it. I

> don't think

>>> that I could stand wearing ear plugs all of the time either.

> Next week, I

>>> ll be getting another hearing test....and finally...June 2nd, I will

> see Dr.

>>> Enns at Stanford (a mito doc)! Yes!!!

>>>

>>> Blessings to you all,

>>> Kaspick

>>>

>>> -- hyperacusis (hypersensitive hearing)

>>>

>>> Hi Folks, I know from the short time of been in the group (and

> from

>>> reading about mito diseases) that hearing difficulting seem

> to be

>>> common; deafness, tinnitis, etc. I was wondering if anyone

> has

>>> hyperacusis, the reverse of deafness or extremely

> hypersensitive

>>> hearing. I have to wear two kinds of earplugs at once just to

> make it

>>> through the noise of things like movies and malls without

> seizing. Being

>>> a musician I can't wear them to work and the noise levels

> drive me nuts.

>>>

>>> Just wondering........Thanks!

>>> Anita

>>>

>>>

>>>

>>> Medical advice, information, opinions, data and statements

> contained herein

>>> are not necessarily those of the list moderators. The author

> of this e mail

>>> is entirely responsible for its content. List members are

> reminded of their

>>> responsibility to evaluate the content of the postings and

> consult with

>>> their physicians regarding changes in their own treatment.

>>>

>>> Personal attacks are not permitted on the list and anyone

> who sends one is

>>> automatically moderated or removed depending on the

> severity of the attack.

>>>

>>>

>>>

>>>

[Guest guest]

Hi Laurie, Thanks so much for telling me about your son and his

diagnosis. He and I share all the same hyper sensitivity

symptoms below. I've never heard about anybody before who

also finds clothing painful. I think I might make a good nudist :-)

Tomorrow I will look up the words you used as his diagnosis

and find out more about them.

Thanks,

Anita

> >>

> >>

> >> My son has hypersensitive hearing (he is sensory sensitive

in

> > other ways as

> >> well.) My mother had hypersensitive hearing and then in a

few

> > months lost

> >> much of it and had a couple of episodes where she lost all

> > hearing and it

> >> returned in the morning.

> >>

> >> laurie

> >>

> >>> From: " Kaspick "

> >>> Reply-To:

> >>> Date: Wed, 12 May 2004 15:57:05 -0700 (Pacific Daylight

> > Time)

> >>> To: >

> >>> Subject: Re: hyperacusis (hypersensitive

hearing)

> >>>

> >>> Loud noises cause me to spasm violently. I can't stand it.

I

> > don't think

> >>> that I could stand wearing ear plugs all of the time either.

> > Next week, I

> >>> ll be getting another hearing test....and finally...June 2nd, I

will

> > see Dr.

> >>> Enns at Stanford (a mito doc)! Yes!!!

> >>>

> >>> Blessings to you all,

> >>> Kaspick

> >>>

> >>> -- hyperacusis (hypersensitive hearing)

> >>>

> >>> Hi Folks, I know from the short time of been in the group

(and

> > from

> >>> reading about mito diseases) that hearing difficulting

seem

> > to be

> >>> common; deafness, tinnitis, etc. I was wondering if anyone

> > has

> >>> hyperacusis, the reverse of deafness or extremely

> > hypersensitive

> >>> hearing. I have to wear two kinds of earplugs at once just

to

> > make it

> >>> through the noise of things like movies and malls without

> > seizing. Being

> >>> a musician I can't wear them to work and the noise levels

> > drive me nuts.

> >>>

> >>> Just wondering........Thanks!

> >>> Anita

> >>>

> >>>

> >>>

> >>> Medical advice, information, opinions, data and

statements

> > contained herein

> >>> are not necessarily those of the list moderators. The

author

> > of this e mail

> >>> is entirely responsible for its content. List members are

> > reminded of their

> >>> responsibility to evaluate the content of the postings and

> > consult with

> >>> their physicians regarding changes in their own treatment.

> >>>

> >>> Personal attacks are not permitted on the list and anyone

> > who sends one is

> >>> automatically moderated or removed depending on the

> > severity of the attack.

> >>>

> >>>

> >>>

> >>>

[Guest guest]

Malisa,

This will be my first time seeing Dr. Enns, or any mito doc. I'll let

everyone know how things go.

Blessings,

-- Re: hyperacusis (hypersensitive hearing)

In a message dated 5/12/2004 8:24:38 PM Eastern Standard Time,

greytwhisperer@... writes:

One of Dr. Enns specialities and research is listed as Mitochondrial

Disorders. He is seeing me and I am 52, far from being a kid, although it

is in the Dept. of Pediatrics. That seems to be the places I end up at..

pediatrics.

Hi ,

Dr Korson (mito specialist) in Boston is the same way. He is also in

pediatrics and sees adults. I always find children's hospitals more friendly

anyway,

so I'm not complaining! The irony of it is that I work as a nurse at a

Children's Hospital and my area of interest is developing programs for teens

and young

adults with chronic illness as they transition into adulthood. We are trying

to find ways to transition them OUT of the pediatric hospitals. So, at age

26,

I am kinda working against myself! LOL

The page you sent just took me to the general Stanford page, but I put in Dr

Enns' name and found the info. on him. I coped it below for anyone else. He

really does seem to be very well informed about mito and very compassionate.

When is your appt? Please let me know how it goes. You've seen him before

right,

or is this your first time?

Malisa

M Enns, MD

Director, Biochemical Genetics Program

Assistant Professor

<< PrevNew SearchNext >>

Clinic:Medical Genetics

770 Welch Road

Suite 201

Palo Alto, CA 94304

Fax:

Physician Referrals:

Office:Medical Genetics Division

300 Pasteur Dr

Rm. H315, MC: 5208

Stanford, CA 94305

Specialties:Genetics

Sub-Specialties:Metabolic Disease

Mitochondrial Disorders

Lysosomal Storage Disease

Research Interests:Mitochondrial Disorders

Newborn Screening

Inborn Errors of Metabolism

Professional Education:University of St. s, St. s, Scotland,

1990

Residency:Childrens Hospital Of Los Angeles, Los Angeles, CA, 1995

Fellowship:UCSF Medical Center, San Francisco, CA, 1998

Board Certification:Genetics, American Board of Medical Genetics

Pediatrics, American Board of Pediatrics

Years on Staff:5

[Guest guest]

--- Hi Anita! My nine yr old daughter finds clothes very painful.

Morning has always been very difficult for us. Her symptoms are much

better now that she is on Zoloft. When I have tried to wean her off

of it she will wake up in the morning and start screaming about her

clothing. Her dx so far are depression/anxiety,asthma and crohns. I

have not yet been dx with mito, but three Drs suspect it. I always

question if her symptoms are mito related.

dawn

In , " Anita " wrote:

> Hi Laurie, Thanks so much for telling me about your son and his

> diagnosis. He and I share all the same hyper sensitivity

> symptoms below. I've never heard about anybody before who

> also finds clothing painful. I think I might make a good nudist :-)

>

> Tomorrow I will look up the words you used as his diagnosis

> and find out more about them.

>

> Thanks,

> Anita

>

>

>

> > >>

> > >>

> > >> My son has hypersensitive hearing (he is sensory sensitive

> in

> > > other ways as

> > >> well.) My mother had hypersensitive hearing and then in a

> few

> > > months lost

> > >> much of it and had a couple of episodes where she lost all

> > > hearing and it

> > >> returned in the morning.

> > >>

> > >> laurie

> > >>

> > >>> From: " Kaspick "

> > >>> Reply-To:

> > >>> Date: Wed, 12 May 2004 15:57:05 -0700 (Pacific Daylight

> > > Time)

> > >>> To: >

> > >>> Subject: Re: hyperacusis (hypersensitive

> hearing)

> > >>>

> > >>> Loud noises cause me to spasm violently. I can't stand it.

> I

> > > don't think

> > >>> that I could stand wearing ear plugs all of the time either.

> > > Next week, I

> > >>> ll be getting another hearing test....and finally...June

2nd, I

> will

> > > see Dr.

> > >>> Enns at Stanford (a mito doc)! Yes!!!

> > >>>

> > >>> Blessings to you all,

> > >>> Kaspick

> > >>>

> > >>> -- hyperacusis (hypersensitive hearing)

> > >>>

> > >>> Hi Folks, I know from the short time of been in the group

> (and

> > > from

> > >>> reading about mito diseases) that hearing difficulting

> seem

> > > to be

> > >>> common; deafness, tinnitis, etc. I was wondering if anyone

> > > has

> > >>> hyperacusis, the reverse of deafness or extremely

> > > hypersensitive

> > >>> hearing. I have to wear two kinds of earplugs at once just

> to

> > > make it

> > >>> through the noise of things like movies and malls without

> > > seizing. Being

> > >>> a musician I can't wear them to work and the noise levels

> > > drive me nuts.

> > >>>

> > >>> Just wondering........Thanks!

> > >>> Anita

> > >>>

> > >>>

> > >>>

> > >>> Medical advice, information, opinions, data and

> statements

> > > contained herein

> > >>> are not necessarily those of the list moderators. The

> author

> > > of this e mail

> > >>> is entirely responsible for its content. List members are

> > > reminded of their

> > >>> responsibility to evaluate the content of the postings and

> > > consult with

> > >>> their physicians regarding changes in their own treatment.

> > >>>

> > >>> Personal attacks are not permitted on the list and anyone

> > > who sends one is

> > >>> automatically moderated or removed depending on the

> > > severity of the attack.

> > >>>

> > >>>

> > >>>

> > >>>

[Guest guest]

Hi Dawn , Thanks for letting me know about your daughter. Poor

little one. Must be tough for her. Glad to know the Zoloft is

helping her bit. Hope you can find more things that work for her

in the future.

Thanks and Best Wishes,

Anita

> > > >>

> > > >>

> > > >> My son has hypersensitive hearing (he is sensory

sensitive

> > in

> > > > other ways as

> > > >> well.) My mother had hypersensitive hearing and then in

a

> > few

> > > > months lost

> > > >> much of it and had a couple of episodes where she lost

all

> > > > hearing and it

> > > >> returned in the morning.

> > > >>

> > > >> laurie

> > > >>

> > > >>> From: " Kaspick "

> > > >>> Reply-To:

> > > >>> Date: Wed, 12 May 2004 15:57:05 -0700 (Pacific

Daylight

> > > > Time)

> > > >>> To: >

> > > >>> Subject: Re: hyperacusis (hypersensitive

> > hearing)

> > > >>>

> > > >>> Loud noises cause me to spasm violently. I can't

stand it.

> > I

> > > > don't think

> > > >>> that I could stand wearing ear plugs all of the time

either.

> > > > Next week, I

> > > >>> ll be getting another hearing test....and finally...June

> 2nd, I

> > will

> > > > see Dr.

> > > >>> Enns at Stanford (a mito doc)! Yes!!!

> > > >>>

> > > >>> Blessings to you all,

> > > >>> Kaspick

> > > >>>

> > > >>> -- hyperacusis (hypersensitive

hearing)

> > > >>>

> > > >>> Hi Folks, I know from the short time of been in the

group

> > (and

> > > > from

> > > >>> reading about mito diseases) that hearing difficulting

> > seem

> > > > to be

> > > >>> common; deafness, tinnitis, etc. I was wondering if

anyone

> > > > has

> > > >>> hyperacusis, the reverse of deafness or extremely

> > > > hypersensitive

> > > >>> hearing. I have to wear two kinds of earplugs at once

just

> > to

> > > > make it

> > > >>> through the noise of things like movies and malls

without

> > > > seizing. Being

> > > >>> a musician I can't wear them to work and the noise

levels

> > > > drive me nuts.

> > > >>>

> > > >>> Just wondering........Thanks!

> > > >>> Anita

> > > >>>

> > > >>>

> > > >>>

> > > >>> Medical advice, information, opinions, data and

> > statements

> > > > contained herein

> > > >>> are not necessarily those of the list moderators. The

> > author

> > > > of this e mail

> > > >>> is entirely responsible for its content. List members

are

> > > > reminded of their

> > > >>> responsibility to evaluate the content of the postings

and

> > > > consult with

> > > >>> their physicians regarding changes in their own

treatment.

> > > >>>

> > > >>> Personal attacks are not permitted on the list and

anyone

> > > > who sends one is

> > > >>> automatically moderated or removed depending on the

> > > > severity of the attack.

> > > >>>

> > > >>>

> > > >>>

> > > >>>

[Guest guest]

Hi Dawn , Thanks for letting me know about your daughter. Poor

little one. Must be tough for her. Glad to know the Zoloft is

helping her bit. Hope you can find more things that work for her

in the future.

Thanks and Best Wishes,

Anita

> > > >>

> > > >>

> > > >> My son has hypersensitive hearing (he is sensory

sensitive

> > in

> > > > other ways as

> > > >> well.) My mother had hypersensitive hearing and then in

a

> > few

> > > > months lost

> > > >> much of it and had a couple of episodes where she lost

all

> > > > hearing and it

> > > >> returned in the morning.

> > > >>

> > > >> laurie

> > > >>

> > > >>> From: " Kaspick "

> > > >>> Reply-To:

> > > >>> Date: Wed, 12 May 2004 15:57:05 -0700 (Pacific

Daylight

> > > > Time)

> > > >>> To: >

> > > >>> Subject: Re: hyperacusis (hypersensitive

> > hearing)

> > > >>>

> > > >>> Loud noises cause me to spasm violently. I can't

stand it.

> > I

> > > > don't think

> > > >>> that I could stand wearing ear plugs all of the time

either.

> > > > Next week, I

> > > >>> ll be getting another hearing test....and finally...June

> 2nd, I

> > will

> > > > see Dr.

> > > >>> Enns at Stanford (a mito doc)! Yes!!!

> > > >>>

> > > >>> Blessings to you all,

> > > >>> Kaspick

> > > >>>

> > > >>> -- hyperacusis (hypersensitive

hearing)

> > > >>>

> > > >>> Hi Folks, I know from the short time of been in the

group

> > (and

> > > > from

> > > >>> reading about mito diseases) that hearing difficulting

> > seem

> > > > to be

> > > >>> common; deafness, tinnitis, etc. I was wondering if

anyone

> > > > has

> > > >>> hyperacusis, the reverse of deafness or extremely

> > > > hypersensitive

> > > >>> hearing. I have to wear two kinds of earplugs at once

just

> > to

> > > > make it

> > > >>> through the noise of things like movies and malls

without

> > > > seizing. Being

> > > >>> a musician I can't wear them to work and the noise

levels

> > > > drive me nuts.

> > > >>>

> > > >>> Just wondering........Thanks!

> > > >>> Anita

> > > >>>

> > > >>>

> > > >>>

> > > >>> Medical advice, information, opinions, data and

> > statements

> > > > contained herein

> > > >>> are not necessarily those of the list moderators. The

> > author

> > > > of this e mail

> > > >>> is entirely responsible for its content. List members

are

> > > > reminded of their

> > > >>> responsibility to evaluate the content of the postings

and

> > > > consult with

> > > >>> their physicians regarding changes in their own

treatment.

> > > >>>

> > > >>> Personal attacks are not permitted on the list and

anyone

> > > > who sends one is

> > > >>> automatically moderated or removed depending on the

> > > > severity of the attack.

> > > >>>

> > > >>>

> > > >>>

> > > >>>

[Guest guest]

I have bouts of hypersensitive hearing, but usually associated with

colds and so on. But it seems to be an unusual symptom. BTW, my

hearing is perfect (so far, knock wood), but is hypersensitive.

Dawn, I would suggest looking into " sensory integration " - I've never

heard of a 9 year old on Zoloft, and as a biochemist in the

pharmaceutical industry, it alarms me a bit. Does she have a

diagnosis of sensory integration disorder? My son is " sensory-

seeking " - most kids with the diagnosis are " sensory-avoiding " . My

other son is sensory-seeking, but not diagnosed.

I would also suggest a developmental pediatrician, and maybe an

allergist to see if she has multiple allergies that may be

complicating things. Does she know that there are a lot of other

kids out there with similar issues?

Take care,

RH

> > > > >>

> > > > >>

> > > > >> My son has hypersensitive hearing (he is sensory

> sensitive

> > > in

> > > > > other ways as

> > > > >> well.) My mother had hypersensitive hearing and then in

> a

> > > few

> > > > > months lost

> > > > >> much of it and had a couple of episodes where she lost

> all

> > > > > hearing and it

> > > > >> returned in the morning.

> > > > >>

> > > > >> laurie

> > > > >>

> > > > >>> From: " Kaspick "

> > > > >>> Reply-To:

> > > > >>> Date: Wed, 12 May 2004 15:57:05 -0700 (Pacific

> Daylight

> > > > > Time)

> > > > >>> To: >

> > > > >>> Subject: Re: hyperacusis (hypersensitive

> > > hearing)

> > > > >>>

> > > > >>> Loud noises cause me to spasm violently. I can't

> stand it.

> > > I

> > > > > don't think

> > > > >>> that I could stand wearing ear plugs all of the time

> either.

> > > > > Next week, I

> > > > >>> ll be getting another hearing test....and finally...June

> > 2nd, I

> > > will

> > > > > see Dr.

> > > > >>> Enns at Stanford (a mito doc)! Yes!!!

> > > > >>>

> > > > >>> Blessings to you all,

> > > > >>> Kaspick

> > > > >>>

> > > > >>> -- hyperacusis (hypersensitive

> hearing)

> > > > >>>

> > > > >>> Hi Folks, I know from the short time of been in the

> group

> > > (and

> > > > > from

> > > > >>> reading about mito diseases) that hearing difficulting

> > > seem

> > > > > to be

> > > > >>> common; deafness, tinnitis, etc. I was wondering if

> anyone

> > > > > has

> > > > >>> hyperacusis, the reverse of deafness or extremely

> > > > > hypersensitive

> > > > >>> hearing. I have to wear two kinds of earplugs at once

> just

> > > to

> > > > > make it

> > > > >>> through the noise of things like movies and malls

> without

> > > > > seizing. Being

> > > > >>> a musician I can't wear them to work and the noise

> levels

> > > > > drive me nuts.

> > > > >>>

> > > > >>> Just wondering........Thanks!

> > > > >>> Anita

> > > > >>>

> > > > >>>

> > > > >>>

> > > > >>> Medical advice, information, opinions, data and

> > > statements

> > > > > contained herein

> > > > >>> are not necessarily those of the list moderators. The

> > > author

> > > > > of this e mail

> > > > >>> is entirely responsible for its content. List members

> are

> > > > > reminded of their

> > > > >>> responsibility to evaluate the content of the postings

> and

> > > > > consult with

> > > > >>> their physicians regarding changes in their own

> treatment.

> > > > >>>

> > > > >>> Personal attacks are not permitted on the list and

> anyone

> > > > > who sends one is

> > > > >>> automatically moderated or removed depending on the

> > > > > severity of the attack.

> > > > >>>

> > > > >>>

> > > > >>>

> > > > >>>

[Guest guest]

Dawn

I understand what you mean about mornings and clothing. With my son, I would

set a timer for 5 minutes and he was allowed to change after that if the

clothes still hurt. Many morning went well and others didn't but at least

there were more good days. It can be so frustrating. Even at 29, he still

has issues with clothes, but has learned that time will usually help. He

does take the label out of his clothes.

This may sound funny, but we would cut one toe nail a night, because he

couldn't tolerate more. When finished with 10 toes, it was time to start

over again. I was so glad when he could cut them himself as he was able to

tolerate it better.

laurie

>

> Reply-To:

> Date: Thu, 13 May 2004 14:39:27 -0000

> To:

> Subject: Re: hyperacusis (hypersensitive hearing)

>

> --- Hi Anita! My nine yr old daughter finds clothes very painful.

> Morning has always been very difficult for us. Her symptoms are much

> better now that she is on Zoloft. When I have tried to wean her off

> of it she will wake up in the morning and start screaming about her

> clothing. Her dx so far are depression/anxiety,asthma and crohns. I

> have not yet been dx with mito, but three Drs suspect it. I always

> question if her symptoms are mito related.

>

> dawn

>

>

>

>

> In , " Anita " wrote:

>> Hi Laurie, Thanks so much for telling me about your son and his

>> diagnosis. He and I share all the same hyper sensitivity

>> symptoms below. I've never heard about anybody before who

>> also finds clothing painful. I think I might make a good nudist :-)

>>

>> Tomorrow I will look up the words you used as his diagnosis

>> and find out more about them.

>>

>> Thanks,

>> Anita

>>

>>

>>

>>>>>

>>>>>

>>>>> My son has hypersensitive hearing (he is sensory sensitive

>> in

>>>> other ways as

>>>>> well.) My mother had hypersensitive hearing and then in a

>> few

>>>> months lost

>>>>> much of it and had a couple of episodes where she lost all

>>>> hearing and it

>>>>> returned in the morning.

>>>>>

>>>>> laurie

>>>>>

>>>>>> From: " Kaspick "

>>>>>> Reply-To:

>>>>>> Date: Wed, 12 May 2004 15:57:05 -0700 (Pacific Daylight

>>>> Time)

>>>>>> To: >

>>>>>> Subject: Re: hyperacusis (hypersensitive

>> hearing)

>>>>>>

>>>>>> Loud noises cause me to spasm violently. I can't stand it.

>> I

>>>> don't think

>>>>>> that I could stand wearing ear plugs all of the time either.

>>>> Next week, I

>>>>>> ll be getting another hearing test....and finally...June

> 2nd, I

>> will

>>>> see Dr.

>>>>>> Enns at Stanford (a mito doc)! Yes!!!

>>>>>>

>>>>>> Blessings to you all,

>>>>>> Kaspick

>>>>>>

>>>>>> -- hyperacusis (hypersensitive hearing)

>>>>>>

>>>>>> Hi Folks, I know from the short time of been in the group

>> (and

>>>> from

>>>>>> reading about mito diseases) that hearing difficulting

>> seem

>>>> to be

>>>>>> common; deafness, tinnitis, etc. I was wondering if anyone

>>>> has

>>>>>> hyperacusis, the reverse of deafness or extremely

>>>> hypersensitive

>>>>>> hearing. I have to wear two kinds of earplugs at once just

>> to

>>>> make it

>>>>>> through the noise of things like movies and malls without

>>>> seizing. Being

>>>>>> a musician I can't wear them to work and the noise levels

>>>> drive me nuts.

>>>>>>

>>>>>> Just wondering........Thanks!

>>>>>> Anita

>>>>>>

>>>>>>

>>>>>>

>>>>>> Medical advice, information, opinions, data and

>> statements

>>>> contained herein

>>>>>> are not necessarily those of the list moderators. The

>> author

>>>> of this e mail

>>>>>> is entirely responsible for its content. List members are

>>>> reminded of their

>>>>>> responsibility to evaluate the content of the postings and

>>>> consult with

>>>>>> their physicians regarding changes in their own treatment.

>>>>>>

>>>>>> Personal attacks are not permitted on the list and anyone

>>>> who sends one is

>>>>>> automatically moderated or removed depending on the

>>>> severity of the attack.

>>>>>>

>>>>>>

>>>>>>

>>>>>>