s-pot Posted November 8, 2011 Report Share Posted November 8, 2011 Hi all.Quick question for all you wise Potsies Ive ended up in hospital this week, but they have been excellent I havto say and have sent 10 vials of blood off to test for various diff things! Also on telemetry at mo and IV saline.I would have been happier to have a 24 hr BP monitor started but consultant seemed happy enuf to rely on nurses to do sitting and standing BP regularly . I believe my biggest problem at mo is BP not the tachy.On the v few times this has been done....im surprised to see my bp is low whilst sitting/lying and is increasing (v slightly) on standing i.e 102/68 lying 110/74 immediately aftr standing.I know my BP defo dips but I think it must be several mins AFTER i stand up.Yday this happened, it resulted in me running to the loo (i dont faint..dizzy/vomit/dry wretch always) and my BP when i got bak to the bed was 82/55. They dont seem to be taking me too seriously about the BP thing and the records from jst lying-standing BP's dont show the episodes of Hypo. The nurses dont take my BP when these episodes occur.Hard to try nd get your voice heard sometimes!!Does anyone know does this generally happen with POTS. It doesnt really fit criteria for Orthostatic Hypotension does it? Seeing as the BP dips a good while after I stand up.Im confused! fed up trying to suss it all out too!! Quote Link to comment Share on other sites More sharing options...
Alyssa Posted November 8, 2011 Report Share Posted November 8, 2011 I had this problem for awhile and the doctors never saw it. Finally, my cardiologist figured it out. Lay down for 2 minutes, and then stand. She took my BP readings every 2minutes for 10minutes while standing. Towards the end of the 10 minutes (6ish mins) is when my BP started to go down. I only fainted the first time, after that, she has always been sure to have me sit when BP hits a certain point.With orthostatic hypotension, it doesn't always immediately drop. With mine, it would initially go up pretty high and then begin to plummet.These days I'm having all sorts of different results with readings, likely due to the meds I'm on. Quote Link to comment Share on other sites More sharing options...
Katybug Posted November 9, 2011 Report Share Posted November 9, 2011 s-pot,Sorry to hear you are in the hospital. By the strict definition of POTS, you BP does not fluctuate. However, you can have POTS and Neurocardiogenic Syncope at the same time. NCS is another form of dysautonomia and it is not unusual to have both POTS and NCS. Basically your heart racing when you stand up is the POTS and your BP dropping when you stand up is the NCS. NCS can happen at any time so that's why they run standard tilt table tests for a whole 45 minutes as opposed to the "within 10 minute requirement" for POTS. If you go to the dinet.org home page, there is a link in the middle of the page that explains NCS.Have you had a TTT? Hope you get well enough to leave the hospital quickly!Katie Quote Link to comment Share on other sites More sharing options...
s-pot Posted November 9, 2011 Author Report Share Posted November 9, 2011 Hey guys Thanks for Posts.....well now i really do think that its dipping well after I stand up! Gettin them to do BPs at the right time and listen to me is another case entirely. Gettin frustrated now.There is some level of orthostatic intolerance going on...im sure of it!! Ill keep trying to get em to listen!Sometimes knowing too much is an injustice thou...cos they are looking at me now in that suggestive way that I am 'over anxious about my health'! grrrrrrrr!!!A young doctor that was sent to look at my telemetry reading, obviously looked at it very narrow mindedly, (prob not knowing anything about pots) and said oh her heart rate was 68 until we came into the room and now its 120...giving the consultant that knowing look i.e Its anxiety!!! But i Have defo bin tachy in the 36 hours since it went on, when i check my own pulse its tachy on standing so how that wasnt picked up on telemetry is beyond me (unless a very narrow minded doc chose only to look at the last 5mins of telemetry!!!)Sorry guys im ranting....very frustrated!!!Also pituitary abnormality was picked up on an MRI months ago but not reported until today.The endocrinologist said, yes its an abnormality but he's 'not concerned' will wait until all my bloods come bak and bring me bak to clinic in 3months....grrrr I hate all the waiting and dismissiveness!! I have a huge family history of neurological/autoimmune problems...i dont believe anything like that should be put down to 'a common abnormality!!!' Quote Link to comment Share on other sites More sharing options...
Katybug Posted November 10, 2011 Report Share Posted November 10, 2011 I totally get your frustration. Hang in there... Quote Link to comment Share on other sites More sharing options...
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