Do My Numbers Suggest Pots?

[Batik]

I'm still waiting for diagnosis, although I gave my GP a leaflet on POTS recently and she said she's looking into it. Hopefully I'll eventually manage to be referred to Julia Newton and there will be a TTT, and in the meantime I've requested a 24 hour ambulatory blood pressure monitor, although I'm now wondering whether it should be a Holter monitor instead.

So far I've been attempting to do home tests from lying or sitting to standing. Mostly it's sitting to standing as I'm rarely in a fit state to mess around with a BP monitor when I'm in bed. I try to move minimally while I'm doing the test, but I know that I clench my leg/buttock muscles at the least, probably sway a bit, and I only recently got the hang of positioning myself so that I wouldn't have to move when I pressed the button. I'm aware that a home blood pressure monitor isn't a very good way to measure heart rate, too. Here are some of my results. A lot of them aren't immediate in the conventional way, e.g. sitting - then standing - then lying.

Aug 11 - sitting or lying HR ranged from 76 to 89, a couple of readings shortly after standing were 104 and 101. BP ranged quite a bit, including 97/67 while sitting, 119/60 sitting, 122/81 and 105/75 standing.

Aug 15 - 110/59, 84, while sitting, not long after lunch (which had made me sweaty). 112/74, 103 just after standing, then 100/75, 100 after walking about for a minute or two.

Evening of Aug 15 - 110/65, 78 while sitting, then 114/84, 103 after 5 min of standing.

Aug 16 - while lying in bed first thing, bit jittery, got 94/61, 76. Got up a minute or two later, got 111/85, 98 after 2 min standing. Random standing reading that morning after a bit of moving about was 109/86, 104. Standing reading straight after lunch, while sweating, was 111/69, 103. Kept standing at that point and the reading 2 min later was 95/72, 94.

Aug 17 - this is the day when I was later rushed to hospital after a collapse, and diagnosed with a UTI. Reading while lying in bed in the morning was 97/61, 74. A couple of hours later, also lying down, it was 94/52, 79. A reading just after standing later that morning (probably after sitting) was 109/90, 104. Shortly afterwards I got 109/70, 87 while sitting, then stood up, and amongst the readings were 120/86, 114, which was after being upright for 5 min and standing dead still for 3 min.

Aug 18 - 92/59, 75, lying down after nap.

Aug 19 - 101/60, 66, been lying down for a while. Stood immediately and readings were:

After 7 min standing - 107/79, 85

After 15 min standing - 112/79, 99, sweaty

A few hours later, lying down after nap - 98/58, 71

Aug 27 - lying in bed in morning, 108/72, 78. Then stood and:

Standing 8 min - 99/74, 102

Bit later: 106/72, 81, while sitting

Not long after, after going to the toilet and then standing:

7 min after standing - 90/75, 100

15 min after standing - 108/72, 109

17 min after standing - 116/66, 107

3 min later, lying down again - 108/66, 76

18 min after the last, still lying down - 105/74, 72

Do these count as appropriate rises, considering how muddled the figures are? Does it matter if it takes longer than 10 min a lot of the time? I only did a few tests where I stayed up for long enough to see a big result, the rest of the time I had to give up because I couldn't stay on my feet. The main thing I notice with the BP is that it zooms all over the place, but that I often get low pulse pressure readings after standing. I've had readings such as 19, 15 and 13. When I mentioned this at the hospital after collapsing, they didn't even seem to know what pulse pressure was and told me that 109/90 was a perfectly normal BP. They also recorded that I was tachy in the ambulance but didn't look into it in the hospital.

My GP's coming around this afternoon - what sort of tests should I ask for, as an interim measure before I ask to be referred to Prof Newton?

[jangle]

I would say it warrants a tilt table test, yes. You're getting near 30+ bpm rises just from standing.

[Batik]

Some of them are over 30, but not always within 10 min. Though the 114 reading was pretty rapid.

[Batik]

By the way, a TTT is a massive thing to ask for, as it will involve referral to a specialist outside my district and thus extra funding. So I'm wondering whether an interim test would be a good idea in order to make my case.

I think this is all milder since I've been on antihistamines, too (and no, I can't get them to look into mast cell problems, I've tried), so without the antihistamines I think my readings would be more marked.

[westernmass]

I would think a Dr could perform a "poor man's TTT", which is basically what you've been doing. They monitor your stats while laying, and standing, similar to a TTT. Have they done that for you?

[Batik]

Not as yet, no. The GP arrived today, said she'd looked at the leaflet I sent her a while ago and agreed that POTS sounds like me and is worth investigating. I gave her the carefully-chosen article by Julia Newton and she's looking into whether she can refer me there, plus she's also talking about doing a 24 hour blood pressure monitoring test and/or a 24 hour ECG (Holter monitor).

Is it necessary to get the 30bpm rise every time, and does it have to be within 10 min?