severe blood pressure drops and diagnosis

[Guest guest]

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