Could you explain something?

[Guest guest]

I've read and read stuff on autonomic dysfunction And just don't understand what

is is. Can anyone tell me in simple terms? My brain just isn't getting this one

in. And, is it the same as thing as POTS or something that leads to POTS?

Thanks

Cindylouwho

[Guest guest]

Cindy, I have some PDF files that explain about this. Can I send

them to you?? It may help.

Love Lana

> I've read and read stuff on autonomic dysfunction And just don't

understand what is is. Can anyone tell me in simple terms? My brain

just isn't getting this one in. And, is it the same as thing as POTS

or something that leads to POTS?

> Thanks

> Cindylouwho

>

>

[Guest guest]

Cindy, I have some PDF files that explain about this. Can I send

them to you?? It may help.

Love Lana

> I've read and read stuff on autonomic dysfunction And just don't

understand what is is. Can anyone tell me in simple terms? My brain

just isn't getting this one in. And, is it the same as thing as POTS

or something that leads to POTS?

> Thanks

> Cindylouwho

>

>

[Guest guest]

Cindy, I do think they are the same thing - but I'm sure not an

expert. There may be other types of autonomic issues other than

POTS? I did send you some info, I hope it helps!

Oh, Sis would be a GREAT one for you to talk to about this, or

. If you can get them.

I'll talk to you later!

Love you!

Lana

> I've read and read stuff on autonomic dysfunction And just don't

understand what is is. Can anyone tell me in simple terms? My brain

just isn't getting this one in. And, is it the same as thing as POTS

or something that leads to POTS?

> Thanks

> Cindylouwho

>

>

[Guest guest]

Cindy, I do think they are the same thing - but I'm sure not an

expert. There may be other types of autonomic issues other than

POTS? I did send you some info, I hope it helps!

Oh, Sis would be a GREAT one for you to talk to about this, or

. If you can get them.

I'll talk to you later!

Love you!

Lana

> I've read and read stuff on autonomic dysfunction And just don't

understand what is is. Can anyone tell me in simple terms? My brain

just isn't getting this one in. And, is it the same as thing as POTS

or something that leads to POTS?

> Thanks

> Cindylouwho

>

>

[Guest guest]

Hi Cindy:

Yes, all the information on dysautonomia is very confusing....most often

more technical than the regular person needs.

As I understand it the core of the autonomic nervous system is located

in the medulla in the centre of the brain and the nerves that run down

the spinal cord and out to the limbs. There are many complicated

aspects to it however. Think of all the AUTOMATIC FUNCTIONS of the body,

heart rate (pulse) control, temperature control system (tolerance for

very cold of hot weather) rate and depth of breathing, digestion,

response to emotional stress, BP control centre,...main ones. POTS

results from a malfunction of the autonomic nervous system but other

problems result from its malfunction. My understanding is that there is

cross talk in the nerves so body gets mixed messages. Problems in the C

spine can cause dysautonomia I believe. Cerebral Palsy people often have

dysautonomia symptoms.

For signs and symptoms of autonomic nervous system dysfunction go to

www.dysautonomia-eduinfo.org/Signs&Symptoms.htm

There are a great many S&S listed but it is a complicated system and

that is why doctors have so much difficulty and so many tests to rule

out other poss. diagnoses. Also difficult to treat and patients can have

many seemingly unconnected complaints.

Dr. Grubb has a very good article on the Autonomic Nervous System but

even it is rather technical. If my memory serves it is on the NDRF site

and it gives on understanding of why some tests are done.

That is my simplified non-text book understanding but I know there must

be others who are far more articulate and knowledgable than I on this.

Bernie

Could you explain something?

I've read and read stuff on autonomic dysfunction And just don't

understand what is is. Can anyone tell me in simple terms? My brain

just isn't getting this one in. And, is it the same as thing as POTS or

something that leads to POTS?

Thanks

Cindylouwho

[Guest guest]

In a message dated 8/21/04 4:33:58 PM Eastern Daylight Time,

c-clark05@... writes:

> I've read and read stuff on autonomic dysfunction And just don't understand

> what is is. Can anyone tell me in simple terms? My brain just isn't getting

> this one in. And, is it the same as thing as POTS or something that leads to

> POTS?

> Thanks

> Cindylouwho

Cindy,

maybe the question has already been answered but POTS is one type of

dyautonomia.

[Guest guest]

Bernie -- good job in explaining - I'll add that chiari - now found

linked in about a third of chiari folks to EDS - is another condition

that often has automomic disfunction / POTS ect entertwined .

I have rather wide swings in BP at the moment - recently told by

chiari experts it is entwined with the acm issues / and that they

CAN " T sugest anything that would FIX /cure the issues - included

but not mentioned below is quite frequent " hotflashes " with true

DRIPING wet times that soak through PJ's at night ect - NOT

menopause as I'd thought .

I also show VERY odd reactions to such things as ultrasound

application of heat to deep muscles in one arm for example -

Instead of being helpful --the PT was FREAKED out when my

arm turned BLUE and cold after application to my shoulder -- the

acm specialist said it's automomic dysfunction somewhat in the

" area " /catagory of RSD type impacts . ( RSD is reflex symathetic

dysfunction stuff that can develope after injury ) - One tip I learned

from RSD stuff is ICEING may provoke it spreading too --

confusing since ICE is often recomended to reduce swelling

/pain issues in chiari ! -- ( sheepishly admits I get confused

about what's best to do too given automomic disfunction issues

- I AM very temperature sensative to both heat and cold as well -

clearly the temp regulation brain area is NOT working right - LOL

)

HEART irregularitiy -

Drop attacks ( loosing all strenght abruptly and falling to the

ground )

- passing out

and aspiration or swollowing /choking issues are ALL

considered red flag warnings in anyone with suspected

acm/chiari --that we are told we are to IMMEDIATLY /URGENTLY

ask our doctors to take seriously as well . These can all be

related to autonomic dysfunction - and/ or compression of the

brainstem .

I would sugest / think that in anyone with EDS the same

guidance would apply -- contact your primary care asking for the

first available appt the SAME /next day OR go to ER if they seem

urgent /don't TAKE chances with this stuff !

Your post was good Bernie -- right on from my nursing

background /chiari advocate learning ect .

in Paradise ( Bernie's response below )

> Hi Cindy:

> Yes, all the information on dysautonomia is very

confusing....most often

> more technical than the regular person needs.

> As I understand it the core of the autonomic nervous system is

located

> in the medulla in the centre of the brain and the nerves that run

down

> the spinal cord and out to the limbs. There are many

complicated

> aspects to it however. Think of all the AUTOMATIC FUNCTIONS

of the body,

> heart rate (pulse) control, temperature control system

(tolerance for

> very cold of hot weather) rate and depth of breathing, digestion,

> response to emotional stress, BP control centre,...main ones.

POTS

> results from a malfunction of the autonomic nervous system

but other

> problems result from its malfunction. My understanding is that

there is

> cross talk in the nerves so body gets mixed messages.

Problems in the C

> spine can cause dysautonomia I believe. Cerebral Palsy

people often have

> dysautonomia symptoms.

> For signs and symptoms of autonomic nervous system

dysfunction go to

> www.dysautonomia-eduinfo.org/Signs&Symptoms.htm

> There are a great many S&S listed but it is a complicated

system and

> that is why doctors have so much difficulty and so many tests

to rule

> out other poss. diagnoses. Also difficult to treat and patients

can have

> many seemingly unconnected complaints.

> Dr. Grubb has a very good article on the Autonomic Nervous

System but

> even it is rather technical. If my memory serves it is on the

NDRF site

> and it gives on understanding of why some tests are done.

> That is my simplified non-text book understanding but I know

there must

> be others who are far more articulate and knowledgable than I

on this.

> Bernie

>

>

> Could you explain something?

>

> I've read and read stuff on autonomic dysfunction And just don't

> understand what is is. Can anyone tell me in simple terms?

My brain

> just isn't getting this one in. And, is it the same as thing as

POTS or

> something that leads to POTS?

> Thanks

> Cindylouwho

>

>