Worried ... who else? ... this time, I AM the only one :-< ... venting

November 22, 2003

Hi all,

Yep, here I go again. I am scheduled to see my EDS GP early this week. And,

from what I've read and heard so far, EDSers with severe hypertension is rare.

Plus, it appears that my stretchy blood vessels can lead to Aorta problems if

you have severe hypertension. So, I fail to see why my new EDS knowledgeable

doctor is relaxed over me having BP up to 300/200 spikes. He agrees I have

autonomic dysreflexia and have BP drops and spikes. But, he commented last month

that I am stable :-<. We do have a plan for treatment, but, I wonder.

Shouldn't he be concerned that my stretchy EDS vessels might rupture?

This doctor has other EDS patients. But I suspect each and every one of us

are totally different.

I would like to know, is there anyone else out there having malignant level

Blood pressure surges. I plan to present to my doctor that my brain blood

vessels, heart and arteries need to be looked at regardless of me having no pain

.... anywhere. I seem to be incapable of having any significant headache and/or

other pain. Yet, the doctors sit there waiting for me to have my big crisis.

Any comments letting me know I am NOT the only hypertensive EDSer would be

appreciated. Last week at the ER, my BP was 247/130. I had been told by this

doctor to tell them that EDS was the reason. So, my BP was ignored. This is good

except, if the rest of the world is expected to have low BP, being this

different feels, well, weird. Caro :-).

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