severe blood pressure drops and diagnosis

[Guest guest]

In a message dated 5/22/2004 2:33:31 PM Eastern Daylight Time,

lrh@... writes:

> blood pressure drops suddenly, so her body wants to lie flat.

Can you get a automatic BP machine. You want to anticipate the BP drop and

try to " catch it " . I was able to prove I have low BP with my own records. All

the hospital and doctor office manual machines are too slow.

> And what are your EDS types, and symptoms?

I have an unusal type of EDS but I am suspected of being VEDS. I will be

tested soon so I do not the type yet. My main symptom is I have severe autonomic

dysfunction as seen in my chronic autonomic dysreflexia. The dysreflexia causes

BP drops and BP spikes. I also heal fast rather than slow ... most likely due

to the dysreflexia induced hyper-metabolism.

> blood pressure drops and EDS?

>

See Pots and dysautonomia.

POTS Place: A Guide to Postural Orthostatic Tachycardia Syndrome - ...

dysautonomia, with a focus on the following: Postural Orthostatic Tachycardia

Syndrome Often more simply referred to as postural tachycardia syndrome, or

POTS,

....

http://www.potsplace.com/

[Guest guest]

Dear Lenore,

I have the blood pressure dips that make you dizzy when you stand up but

nothing like what you are descibing. (oh have Hypermobile EDS).

Did want to comment though on someone being so strong and having EDS. I was

in quite good shape up until my mid 20's. Yes had a few minor incidents but each

was brushed off as an individual incident and not bulked together till later. I

was told it was like the straw that broke the camels back. Basically as I aged

my joints got more wear and tear than normal people and at some point even

though my physical condition was good they finally gave way.

I also believe that my being in good shape helped keep my joints from being

a problem for so long. Also that my good muscle structure still helps me now.

Even though my joints are very bad, they could be a lot worse if my normal

muscle structure wasn't so good.

So I believe it is possible to be string and in good shape and still have

EDS lurking. But it could also be that she has something else entirely going on.

Wish you the best of luck in helping her!

Hugs,

B.

HEDS, New Jersey, USA

[Guest guest]

In a message dated 5/23/2004 2:11:21 PM Eastern Daylight Time,

jbmohr@... writes:

> night (tired when you go to bed, but as soon as you lie down you get a

> burst of energy as the blood pressure goes up)

Would you say this explain the activity of the mind. I have what you

describe. After about ten minutes in bed I can become suddenly totally rested.

[Not

always.] Then the mind gets so active that I get up.

[Guest guest]

Yes, you can be in good physical shape and have EDS.

I'm at the begining of my research on POTS and dysautonomia problems,

but I do know that seizures, blood pressure drops, blackouts,

shaking, incontinence are all symptoms. However, that doesn't rule

out other problems.

Yes, it is all very confusing because the symptoms of many

disorders/diseases overlap with others. Also, the medical community

still has a lot to learn about our nervous system.

The symptoms in my family are fluctuating blood pressure, dizziness

upon standing and faiting when standing for prolonged periods, blood

pooling in legs, fatigue, trouble going to sleep at night (tired when

you go to bed, but as soon as you lie down you get a burst of energy

as the blood pressure goes up) - among others symptoms.

My MD didn't care at all, told me my blood work was fine and it was

good to have low blood pressure. I just went to a new doctor last

Thursday - he is DO. He has ordered a few tests and suggested tests

for the Ped to run on my daughter.

Wish I had more info to share - wishing your sister good luck.

> Hi all,

> I wonder if those of you who have some experience with sudden drops

in

> blood pressure could give me some advice/share symptoms.

>

> I have EDS classic type. I have 5 siblings, none of whom has ever

been

> diagnosed with EDS, and so far, none of whom are interested in even

> looking at the sources for various medical problems. However, my

> youngest sister, who has always been the strongest (surpassing her

army

> colleagues in physical feats, participating in triathlons and

Ironman

> competitions), has been having 'seizures' recently. The

neurologist,

> who has already done an EEG with no results, says that what she is

> having are actually episodes where her blood pressure drops

suddenly,

> so her body wants to lie flat. My sister says she also shakes and

seems

> to black out, and has even become incontinent. The neurologist was

> quite interested in hearing that someone in her family has EDS, and

was

> going to find out more. He seems to be a good doctor who also

practices

> Chinese medicine, at the hospital where my sister works as an ER

nurse

> in Fayetteville, NC.

>

> From what I have been reading here on the CEDA board, those of you

who

> have severe blood pressure drops have found that diagnosis and

> treatment has been very difficult to obtain.

>

> Can you share with me some of the process you have had to go

through?

> And what are your EDS types, and symptoms? Does it even sound

possible

> that someone so very strong and active can have EDS? And who are

the

> doctors who have supported you in looking into this problem (I

think

> Dr. Francomano has been mentioned in connection with this--is that

> correct? Where is she again?) Will the neurologist find anything in

the

> literature related to blood pressure drops and EDS?

>

> Any information will be helpful. I am worried about my baby sister

> (she's 35).

>

> Thank you, my CEDA family.

>

> Lenore in Seattle

[Guest guest]

I sure do think they are related

I've even noticed in the evening, after I've been going on my feet

all day, I'll sit down at the computer or to do some prep work for

the next day and I end up with more energy than I've had all day - of

course then I can't sleep even if I go to bed, and I don't want to go

to bed because I finally have the energy to get all those things done

that need doing - and my mind becomes clearer.

What I'm trying - and it seems to be working - is that if I have a

chance during the day when I feel that incredible energy drop - I go

lay down for a short time - then I get my energy increases earlier

than normal - and I get to use that energy in the late afternoon

instead of late into the night.

> In a message dated 5/23/2004 2:11:21 PM Eastern Daylight Time,

> jbmohr@n... writes:

>

> > night (tired when you go to bed, but as soon as you lie down you

get a

> > burst of energy as the blood pressure goes up)

>

> Would you say this explain the activity of the mind. I have what

you

> describe. After about ten minutes in bed I can become suddenly

totally rested. [Not

> always.] Then the mind gets so active that I get up.

>

>

>

[Guest guest]

I sure do think they are related

I've even noticed in the evening, after I've been going on my feet

all day, I'll sit down at the computer or to do some prep work for

the next day and I end up with more energy than I've had all day - of

course then I can't sleep even if I go to bed, and I don't want to go

to bed because I finally have the energy to get all those things done

that need doing - and my mind becomes clearer.

What I'm trying - and it seems to be working - is that if I have a

chance during the day when I feel that incredible energy drop - I go

lay down for a short time - then I get my energy increases earlier

than normal - and I get to use that energy in the late afternoon

instead of late into the night.

> In a message dated 5/23/2004 2:11:21 PM Eastern Daylight Time,

> jbmohr@n... writes:

>

> > night (tired when you go to bed, but as soon as you lie down you

get a

> > burst of energy as the blood pressure goes up)

>

> Would you say this explain the activity of the mind. I have what

you

> describe. After about ten minutes in bed I can become suddenly

totally rested. [Not

> always.] Then the mind gets so active that I get up.

>

>

>