Low Blood Volume and POTS

[Guest guest]

Hi everyone!

As many of you know, I have been struggling with severe POTS symptoms for some

time now. My POTS became much, much worse following my tethered cord surgery and

did not improve following my fusion/decompression, even though we had expected

it to. I have since tried many meds, including flourinef, midodrine, wellbutrin,

cymbalta, propanolol, and others. I have also tried other methods such as high

salt/water intake, among others. Thank you all for your suggestions following my

previous post regarding POTS treatment, I have been looking into them and will

continue to do so. However, despite all of this, we have been unsuccessful in

allowing me to be upright for more than about 5 minutes at the most.

In an attempt to qualify me to use procrit for my POTS, I recently had a red

cell mass test, in which they calculated the volume of my red blood cells and

plasma as well as my total blood volume. When we received the results, we were

surprised to see that my results were less than HALF of normal. This means I am

walking around (okay, not literally walking) with less than half of the blood I

am supposed to have! Obviously, this is a large contributor to my orthostatic

intolerance (inability to be upright) and is quite significant. My doctor said

it was the lowest results he had ever seen! *jaw drops*

So, here is my question. Does anyone else on this list have low blood volume

(hypovolemia)? If so, was it attributed to your chiari and related disorders

(i.e. due to brainstem pressure)? What treatments did you pursue and were they

successful? If you have any experience with this, PLEASE respond, because I am

really getting desperate.

My cardiologist (who is wonderful, understanding, and quite experienced with

POTS because his own daughter has chiari and POTS - if you are in the Philly

area, e-mail me and I will give you his information) has referred me to a

hematologist, who will be treating the low blood volume. The current plan is to

start on procrit and IV fluids (via a port) to try to increase my blood volume.

They were amazed that I am even slightly functional with such little blood!

I don't want to make this too long, but I am just looking for anyone who has

experience with this. I forgot to mention that my blood counts (red cells,

hematocrit, etc) are all normal. This means that the blood I do have is normal,

I just don't have enough of it. Any thoughts??? I would greatly appreciate any

advice you could give me! Thanks!

Hannah )

www.caringbridge.org/visit/hannah317

Chiari, EDS, POTS, CCI, AAI, RO, BI, TCS, CS

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