Re: - dystautonomia question

[Guest guest]

Darla,

>Is there any treatment for this?

Emilie was diagnosed with dysautonomia before anyone figured out that she

has mito. Her neuro at the time prescribed Florinef for dysautonomia; It

was not helpful to Emilie, but I have heard of others who have gotten

relief (including at least a couple of mito patients).

Her neuro also wanted her to see a doctor at Mayo who " literally wrote

the book " on dysautonomia. His name is Low. He declined to see

Emilie because he is an adult neuro and she was only 12 at the time,

though he did say if she saw a peds neuro at Mayo he would be willing to

consult. We didn't end up taking her to Mayo, so I can't tell you

anything about what he's like. Just thought I'd mention him, since I

know you have a Mayo connection.

Another resource is the National Dysautonomia Research Foundation at

ndrf.org. They have a message board where there is (or at least used to

be) a lot of discussion of various medications.

Take care,

-- Mom to:

Emilie (17), mito--complex IV, cp, ld

Kaitlin (17), cp, asthma, a few autonomic symptoms

Ian (22) migraines

....and wife to Tim, who has a heart of gold

[Guest guest]

I thought the blood pressure drop issue was an interesting connection

with disautonomia. For years I have had dizzy spells and " black outs

when getting up from sitting and especially when I bend over to get

something low and then stand up again. I absolutely hat ethis! I

have also found the more tired or sickly I am, the more this occurs.

Is there any treatment for this? I heard one person, I think,

mention they used some med to control this but the cardiologist I

mentioned this to did not prescribe anything for me. It has been

happening to me since 1990 and I really wish I could stop it from

happening. I do stand up very slowly which helps, but not totally.

Darla

> > Does anyone know any type of treatment for dystatuonomia? Grace

seems

> to be

> > getting more and more sypmtoms from this all the time, and the

old

> problems

>

> There are not a lot of treatments. The main treatment is to drink

tons and tons.

> My teen is supposed to drink 2-4L of fluid a day. Antidepressants

are also

> sometimes used. Some may use blood pressure meds too. Dysautonomia

> patients tend to have low blood pressure though. It goes down as

you get up

> from a seated position and you lose consciousness. I would be

concerned

> about the high blood pressure.

>

>

[Guest guest]

Thanks for the info. Just wanted to let you know it wan't

actually me who asked for info on treating disautonomia, but I am

always interested in hearing helpful info. I am sure the one who

asked will get the message.

Darla

> Darla,

>

> >Is there any treatment for this?

>

> Emilie was diagnosed with dysautonomia before anyone figured out

that she

> has mito. Her neuro at the time prescribed Florinef for

dysautonomia; It

> was not helpful to Emilie, but I have heard of others who have

gotten

> relief (including at least a couple of mito patients).

>

> Her neuro also wanted her to see a doctor at Mayo who " literally

wrote

> the book " on dysautonomia. His name is Low. He declined

to see

> Emilie because he is an adult neuro and she was only 12 at the

time,

> though he did say if she saw a peds neuro at Mayo he would be

willing to

> consult. We didn't end up taking her to Mayo, so I can't tell you

> anything about what he's like. Just thought I'd mention him, since

I

> know you have a Mayo connection.

>

> Another resource is the National Dysautonomia Research Foundation

at

> ndrf.org. They have a message board where there is (or at least

used to

> be) a lot of discussion of various medications.

>

> Take care,

>

>

> -- Mom to:

> Emilie (17), mito--complex IV, cp, ld

> Kaitlin (17), cp, asthma, a few autonomic symptoms

> Ian (22) migraines

> ...and wife to Tim, who has a heart of gold

[Guest guest]

-Darla,

I have had this too. My son has syncope and near syncope episodes all the

time too. The main treatment for this is to drink 2-4L of fluid a day. It

can't

have caffeine in it though. We went to an autonomic neurologist to get this

advice but a friend's son got similar advice when they went to an autonomic

cardiologist.

[Guest guest]

Darla,

> Thanks for the info. Just wanted to let you know it wan't

>actually me who asked for info on treating disautonomia, but I am

>always interested in hearing helpful info. I am sure the one who

>asked will get the message.

Oops, sorry! That's what I get for trying to dash off a message on the

way out the door for the weekend! Thank you for being so gracious.

-- Mom to:

Emilie (17), mito--complex IV, cp, ld

Kaitlin (17), cp, asthma, a few autonomic symptoms

Ian (22) migraines

....and wife to Tim, who has a heart of gold