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Saw My Pcp

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Hi all,

I saw my PCP yesterday about the florinef .3mgs/day i'm on.....i think overall i'm doing better on the florinef, but i am getting very ABRUPT out of nowhere sensations of blacking out. before going on florinef, those sensations were gradual. anyway, the doc did orthostatics on me and these were the numbers (mind you this is on 120mgs beta and .3mgs florinef):

supine: 130/60 HR 72

sitting: 120/50 HR 80

standing: 90/80 HR 120

i had only been standing for 2 minutes when they got the reading of 90/80 and HR of 120 ......two hours before i went in for those readings, i ate two pieces of greek olive pizza and i actually added table salt TO the greek olives (heh, you know you have a BP problem when you're adding salt to greek olives!) along with pounding two 12 ounce glasses of water. i was shocked that my BP hit a 30 point drop like that from sitting to standing and i am a little concerned it would have dropped out more if i had stayed standing...........

anyone on florinef at such a high dose still get fairly low readings? i was put on florinef because my BP was hovering around 80 systolic......i dont see much difference from 80 to 90 and considering that was only after two minutes of standing, that is concerning to me. the symptoms are there as well which can be quite dramatic (sensation of blacking out)........

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hi there,

yeah it is a hefty dose of beta, but i have been on a lot higher dosages with no problem in my BP in the past....and i've actually dropped out my dosage by 80mg's over the past two months....i dont think they want to drop the dosing out anymore with the beta cuz as you can see i'm still tachy standing. ...and the majority of people with pots on beta i believe have fairly normal heart rates in any position, but i still struggle to keep mine below 130's ON beta.

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A pulse pressure of only 10 mm Hg (bp of 90/80) means that you are getting no blood to your brain when you are standing. It's not surprising that you feel like blacking out. It's astonishing that you don't black out.

The fact that your diastolic pressure (the low number) went from 60 to 80 when you stood up suggests that you are still hypovolemic, or at least not getting venous return to the heart when you stand up.

Have you had a blood volume determination? Do you use pressure stockings? If so, what are your pressure numbers like when you have them on?

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hi lthomas,

yeah, i thought it was pretty bizarre to see my systolic and diastolic so close together. i am questioning whether the medical assistant got a proper reading as she seemed to struggle to get a standing BP to begin with on me (last time i was in my docs office, she was having a hard time getting my BP standing so she called in the doc and EVEN the doc had a hard time gettting it, they eventually did and last time the systolic was in the 80's, but the doc basically guessed with both the diastolic and systolic numbers)..........

i was wearing compression hose for awhile, they seemed to help a little with blackout sensations but that was only when i wasnt at work and constantly rushing around the hospital. if i wear them at work and am busy, they tend to make me very sweaty and hot, which aggravates the pre-syncopal sensations even more....so..... not sure what my pressure numbers are like with stockings on....i dont think i have ever taken, or had someone else take a BP reading while wearing them - a good idea though for sure! thanks for mentioning it.

i have had the green thermodilution test (i think that's what they call it) to determine hypovolemic state and the test was negative for me being hypovolemic.....

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