POTs Active Stand Test - Anyone Know...

[RockinHippy]

About this test please...

I've just had it done with the practice nurse at our surgery - testing for Postural Orthostatic Tachycardia, as a symptom of EDS - mum was & my daughter is diagnosed with EDSH, my EDS clinic referral was a cock up so didn't get diagnosis, so GP now looking at other linked conditions before re referring me

Nurse did seem inexperienced in this test & was following a list written by the GP - she pretty much owned up to this & couldn't really give me any answers & seemed more interested in my BP ( which was good)

Just been trying to find out what if anything my high resting pulse rate of 100 sitting (according to nurse it was high) raising to 107 - 111 when standing means

just read that POTs UK say this test is done from lying down to standing, not sitting

Will this affect the results badly ??

Would this result mean POTs anyway or is it normal range ??

TIA

Hi, I had this test done at my GP surgery too. The nurse who did it with me also did not really know how to do it - she wasn't going to record my heartrate until I prompted her to do it. However she did make me lie down fully for 1/2 hour and then took a reading sitting, then standing, then after ten minutes of standing. My understanding is that you need to see the difference between the heartrate when lying and standing.

I've subsequently seen a consultant privately and had full autonomic testing. Part of this was an extending tilt table test - at the place where I went they have you stand on the tilt table for up to an hour. You can have this testing done on the NHS but in London there seems to be about a 10 month waiting list.

What are your symptoms?

Thank you fivecups

That pretty much confirms my understanding of what I read on POTsUK & that my test wasn't done properly - I was sitting, not lying down & I would expect worse still, I had practically just walked into the surgery, signed in & she saw me straight away - so not time to even sit & rest much, let alone lie down for half an hour.

My symptoms are pretty much everything listed on POTsUK, bar black outs, though I have passed out a few times in the early days of things getting worse, but I've learnt to move more slowly to avoid that.

I also have other symptoms/diagnosis linked tho Ehlers Danlos, which POTs is a symptom of - my Dd has it to as a symptom of EDSH - but there was a big cock up with my London appointment, partially my notes 20 years out of date, partly I don't know what, as the Consultant stated in the letter to my GP that I had never had any dislocations/hyperextension injuries, when like DD I had a lot when young & some since. So all very confusing & I didn't get a diagnosis - so my GP has suggested this route first, before re- referring me to another EDS Rheumatologist

Thanks for your help, I will mention it when I see my GP