Re: about severe blood pressure drops and diagnosis

[Guest guest]

Lenore,

On first quick reading this looks like a pretty good summary - esp

if 'the reader' goes on to the website (where you can spend quite a

bit of time reading and digesting).

As more questions arise - please post here so we can all figure this

out - I know there is so much left for me to learn.

Hope this gives your sister some help.

> Thank you , , and Caro for your contributions about

> POTS, blood pressure, etc.

>

> I want to send my sister a summary of what I've been learning, and

> thought I'd post it here first to see if anyone could add anything

> more.

>

> It is possible for someone with a very strong physique to develop

EDS

> symptoms as they grow older because, for example, as the joints and

> tissues start to wear out the genetic disposition to stretch and

> overextend will then kick in. It is also not uncommon among people

with

> EDS to have low blood pressure (in fact most people on the CEDA

list

> have low BP it seems, myself included), usually with blood pooling

in

> the legs, needing to lie down in order allow the blood pressure to

rise

> and resupply energy.

>

> Some people with EDs also experience POTS and dysautonomia, though

> whether these go with specific types is not clear (at least not to

me).

> Symptoms of POTS can include seizures, blackouts, shaking and

> incontinence, though I gather noone with POTS shares the severe

> seizure-like symptoms of my sister. However, there is very little

> research out there on the relationship between POTS and EDS; the

people

> on the CEDA list who have it have had great difficulty getting it

> recognized as a problem and then having it diagnosed and

connections

> made with EDS.

>

> 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/

>

>

> Thanks again for your help.

> Lenore in Seattle

>

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