Dtr penny - home from hosp - neurocardiogenic syncope

[Guest guest]

Hi all thanks for your support (again..). I think panic attacks are part of

mito sometimes - well if so I am sure getting them. A few days ago I was

panicking about 21yo daughter blacking out and she was put in hospital for a

week as the docs took me seriously about (my definite and her possible) MELAS

and the possible cardiac conduction problems that sometimes go along with it.

They gave her an electrophysiological study which they normally wouldn't

consider in someone her age (EPS is like an angiogram only instead of going up

an artery they apparently go up through a vein, so not quite as dramatic).

Although they found some abnormal pathways and tachycardia they said they were

quite common in the normal population and were not enough to cause her to black

out. They concluded that she probably has NCS neurocardiogenic syncope which

one or two of you told me about also. He doesn't think she has orthostatic

hypotension. He is sending her for a tilt table test (Also by that time she

may have a dx from the mito doc whom will start testing her for melas soon.) I

am sure all will be revealed eventually. In the meantime it helps enormously to

find out the information and hear the stories . So - at this stage they have

told her regardless of whether she has mito, the blackouts were probably a

result of recent extended chest infection, not getting enough sleep or not

eating properly, plus possible pain triggers (from her endless extreme

" dysmenorrhea " which we haven't gotten to bottom of). All makes sense to me,

and I won't be at all surprised if she is dx with mito. So as well as all the

fluids and rest the doc has ordered, she has sports drinks with her at all

times, is being careful about getting up too quickly, having extra salt, eating

regular meals and am also looking at cocktail for her. pamela

[Guest guest]

Pamela

I'm glad Penny is home from the hospital and you are gettting some

answers. I hope those answers keep coming.

laurie

> Hi all thanks for your support (again..). I think panic attacks are part

> of mito sometimes - well if so I am sure getting them. A few days ago I

> was panicking about 21yo daughter blacking out and she was put in hospital

> for a week as the docs took me seriously about (my definite and her

> possible) MELAS and the possible cardiac conduction problems that sometimes

> go along with it. They gave her an electrophysiological study which they

> normally wouldn't consider in someone her age (EPS is like an angiogram only

> instead of going up an artery they apparently go up through a vein, so not

> quite as dramatic). Although they found some abnormal pathways and

> tachycardia they said they were quite common in the normal population and

> were not enough to cause her to black out. They concluded that she probably

> has NCS neurocardiogenic syncope which one or two of you told me about also.

> He doesn't think she has orthostatic hypotension. He is sending her for a

> tilt table test (Also by that time she may have a dx from the mito doc

> whom will start testing her for melas soon.) I am sure all will be revealed

> eventually. In the meantime it helps enormously to find out the information

> and hear the stories . So - at this stage they have told her regardless of

> whether she has mito, the blackouts were probably a result of recent

> extended chest infection, not getting enough sleep or not eating properly,

> plus possible pain triggers (from her endless extreme " dysmenorrhea " which

> we haven't gotten to bottom of). All makes sense to me, and I won't be at

> all surprised if she is dx with mito. So as well as all the fluids and

> rest the doc has ordered, she has sports drinks with her at all times, is

> being careful about getting up too quickly, having extra salt, eating

> regular meals and am also looking at cocktail for her. pamela

>

>

[Guest guest]

Hi Pamela,

I'm so glad your daughter is home and that she did OK with the

electrophysiology study. I'm glad you're feeling a bit calmer about

it. By the way, on the question of pain as part of the trigger, my two

cents is that it's very hard to eat enough when the " dysmenorrhea " (or

whatever we've got!) is really bad. With my abdomen hurting and

bloated I have several times felt like passing out when I realized how

little I'd eaten that day. I'm now making myself eat no matter what.

Anyway, I'll be interested to hear how things go with her (and you)

over time.

Best,

Shayna

>

> Hi all thanks for your support (again..). I think panic attacks

are part of mito sometimes - well if so I am sure getting them. A

few days ago I was panicking about 21yo daughter blacking out and she

was put in hospital for a week as the docs took me seriously about (my

definite and her possible) MELAS and the possible cardiac conduction

problems that sometimes go along with it. They gave her an

electrophysiological study which they normally wouldn't consider in

someone her age (EPS is like an angiogram only instead of going up an

artery they apparently go up through a vein, so not quite as

dramatic). Although they found some abnormal pathways and

tachycardia they said they were quite common in the normal population

and were not enough to cause her to black out. They concluded that

she probably has NCS neurocardiogenic syncope which one or two of you

told me about also. He doesn't think she has orthostatic hypotension.

He is sending her for a tilt table test (Also by that time she may

have a dx from the mito doc whom will start testing her for melas

soon.) I am sure all will be revealed eventually. In the meantime it

helps enormously to find out the information and hear the stories .

So - at this stage they have told her regardless of whether she has

mito, the blackouts were probably a result of recent extended chest

infection, not getting enough sleep or not eating properly, plus

possible pain triggers (from her endless extreme " dysmenorrhea " which

we haven't gotten to bottom of). All makes sense to me, and I won't

be at all surprised if she is dx with mito. So as well as all the

fluids and rest the doc has ordered, she has sports drinks with her at

all times, is being careful about getting up too quickly, having extra

salt, eating regular meals and am also looking at cocktail for her.

pamela

>

>

[Guest guest]

Hi , I was reading e mails, and noticed in this

particular e mail you mention abdomen hurting and

bloating. Can you tell me more on the stomach

problems. I have been having a terrible time with

pains, excrutiating pain in stomach and bloating, till

I pass gas, or bowel movement. I have been depending

on Beano and Gas X to save the day. I wanted to see if

you were having similar problems.

--- shaynapearl happyclam8@...> wrote:

> Hi Pamela,

> I'm so glad your daughter is home and that she did

> OK with the

> electrophysiology study. I'm glad you're feeling a

> bit calmer about

> it. By the way, on the question of pain as part of

> the trigger, my two

> cents is that it's very hard to eat enough when the

> " dysmenorrhea " (or

> whatever we've got!) is really bad. With my abdomen

> hurting and

> bloated I have several times felt like passing out

> when I realized how

> little I'd eaten that day. I'm now making myself eat

> no matter what.

> Anyway, I'll be interested to hear how things go

> with her (and you)

> over time.

> Best,

> Shayna

>

>

>

>

> >

> > Hi all thanks for your support (again..). I

> think panic attacks

> are part of mito sometimes - well if so I am sure

> getting them. A

> few days ago I was panicking about 21yo daughter

> blacking out and she

> was put in hospital for a week as the docs took me

> seriously about (my

> definite and her possible) MELAS and the possible

> cardiac conduction

> problems that sometimes go along with it. They gave

> her an

> electrophysiological study which they normally

> wouldn't consider in

> someone her age (EPS is like an angiogram only

> instead of going up an

> artery they apparently go up through a vein, so not

> quite as

> dramatic). Although they found some abnormal

> pathways and

> tachycardia they said they were quite common in the

> normal population

> and were not enough to cause her to black out. They

> concluded that

> she probably has NCS neurocardiogenic syncope which

> one or two of you

> told me about also. He doesn't think she has

> orthostatic hypotension.

> He is sending her for a tilt table test (Also by

> that time she may

> have a dx from the mito doc whom will start testing

> her for melas

> soon.) I am sure all will be revealed eventually.

> In the meantime it

> helps enormously to find out the information and

> hear the stories .

> So - at this stage they have told her regardless of

> whether she has

> mito, the blackouts were probably a result of recent

> extended chest

> infection, not getting enough sleep or not eating

> properly, plus

> possible pain triggers (from her endless extreme

> " dysmenorrhea " which

> we haven't gotten to bottom of). All makes sense

> to me, and I won't

> be at all surprised if she is dx with mito. So as

> well as all the

> fluids and rest the doc has ordered, she has sports

> drinks with her at

> all times, is being careful about getting up too

> quickly, having extra

> salt, eating regular meals and am also looking at

> cocktail for her.

> pamela

> >

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

> removed]

> >

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Hi Irene,

The abdominal pain and bloating I referred to is probably

gynecological pain--specifically uterine. For me, bowel movements and

gas are not related to it.

However, digestive problems are common with mito. I've always had

bouts of either diarrhea or constipation but for me, they are not

associated with pain. You might try posting a question to the group

about it.

Best,

Shayna

> > >

> > > Hi all thanks for your support (again..). I

> > think panic attacks

> > are part of mito sometimes - well if so I am sure

> > getting them. A

> > few days ago I was panicking about 21yo daughter

> > blacking out and she

> > was put in hospital for a week as the docs took me

> > seriously about (my

> > definite and her possible) MELAS and the possible

> > cardiac conduction

> > problems that sometimes go along with it. They gave

> > her an

> > electrophysiological study which they normally

> > wouldn't consider in

> > someone her age (EPS is like an angiogram only

> > instead of going up an

> > artery they apparently go up through a vein, so not

> > quite as

> > dramatic). Although they found some abnormal

> > pathways and

> > tachycardia they said they were quite common in the

> > normal population

> > and were not enough to cause her to black out. They

> > concluded that

> > she probably has NCS neurocardiogenic syncope which

> > one or two of you

> > told me about also. He doesn't think she has

> > orthostatic hypotension.

> > He is sending her for a tilt table test (Also by

> > that time she may

> > have a dx from the mito doc whom will start testing

> > her for melas

> > soon.) I am sure all will be revealed eventually.

> > In the meantime it

> > helps enormously to find out the information and

> > hear the stories .

> > So - at this stage they have told her regardless of

> > whether she has

> > mito, the blackouts were probably a result of recent

> > extended chest

> > infection, not getting enough sleep or not eating

> > properly, plus

> > possible pain triggers (from her endless extreme

> > " dysmenorrhea " which

> > we haven't gotten to bottom of). All makes sense

> > to me, and I won't

> > be at all surprised if she is dx with mito. So as

> > well as all the

> > fluids and rest the doc has ordered, she has sports

> > drinks with her at

> > all times, is being careful about getting up too

> > quickly, having extra

> > salt, eating regular meals and am also looking at

> > cocktail for her.

> > pamela

> > >

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

> > removed]

> > >

> >

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>