Blood pressure all over the place

[Jenny TipsforME]

I’m recording my blood pressure in preparation for a POTS appointment. Before my last appointment my blood pressure was quite changeable and my doctor asked me to record it repeatedly on the same day to see if we can work out a pattern.

I’m wondering if people here might have experience of interpreting this type of thing too? It might be mostly caused by the medication I’m taking, which would be expected to impact blood pressure, or a more random dysautonomia type of thing.

9.45am lying down, 87/64mmHg with pulse 76bpm I had eaten and had a decaf coffee and some electrolyte drink but just before taking medication. Some fludrocortisone was probably still in my system

noon standing 147/97 with pulse 83, medication would be working (ivabradine, fludrocortisone, Pyridostigmine). I feel better with it high than when it was low first thing

1.15pm standing just after bath before lunch 110/77, pulse 114 (good for after a bath, which I’d expect to cause higher bpm, lower blood pressure from past experience)

2.20pm lying flat before afternoon Pyridostigmine 135/72 pulse 72bpm

3.45pm standing for a couple of minutes 150/96 pulse 109, Pyridostigmine working

3.55pm lying flat 132/68 pulse 69bpm


I’ll keep going with the recording but my preliminary thoughts are:

- my blood pressure seems to be going higher when I stand so it’s perhaps revealing an hyperadrenergic style of POTS? Previously I was taking bisoprolol since diagnosis, which probably hid/treated this
- my medication combination, or one in particular is perhaps increasing my blood pressure too much?

I feel better on high blood pressure than low blood pressure but realise it’s something to be cautious about. Pyridostigmine definitely helps me, particularly to do with paralysis issues so I really hope I don’t need to stop that.

 

[Trish]

It looks like several days of recording like you have done here will provide useful information for your POTS doctor to interpret. Good luck with getting it sorted out.

 

[Wonko]

I'm not a medical type personage, and know nothing, about anything, not even about what I don't know, but....

it might be worth getting checked out, if it can be done conveniently - it seems that a difference of greater than 40 between top and bottom numbers may not be fantastic - it appears to be called 'wide pulse pressure', and could be considered as not entirely positive. A quick, mathless, glance at your readings suggest that at times you have a pulse pressure of 60 ish. As 60 is usually considered to be higher than 40.....

 

[Ryan31337]

I’m recording my blood pressure in preparation for a POTS appointment. Before my last appointment my blood pressure was quite changeable and my doctor asked me to record it repeatedly on the same day to see if we can work out a pattern.

Recommend asking for a 24hr ambulatory blood pressure monitor. You wear the cuff all day with a data recording device, it then goes off automatically throughout the day. You'll have the worst night's sleep of your life, but the results can be interesting!

It confirmed the hyperadrenergic tendencies & narrowing pulse pressure on standing for me, as well as some peaks and crashes surrounding mealtimes. Much like you I feel a lot better with higher blood pressure, I can barely function below 110/70 and would feel very hypotensive.

The advice I get from the specialist autonomic/hypertension POTS clinic I go to is that these hypertensive spikes are less concerning than any sort of sustained high blood pressure. Though since taking Ivabradine and being careful around mealtimes I tend to average around 135/85 and don't see above 155/100, whereas unmedicated it'd peak at 220/140 at times with some interesting sensations alongside...

 

[Jenny TipsforME]

Recommend asking for a 24hr ambulatory blood pressure monitor

I suppose that’s sort of what he’s getting me to do on the cheap! It does seem like the more formal recording could be worthwhile though. But an advantage with our current method is I’m noting down the situation each time (lying, sitting, standing, timing of food and medication) so it’s easier to interpret cause and effect?

hypertensive spikes are less concerning than any sort of sustained high blood pressure

I was wondering this - usually high blood pressure is a sign of other bad stuff going on which is less straightforward to measure, but if I’m starting the day 87/64 that’s not the story for me. This autumn I have been constantly in ketosis with the high fat diet associated with that, so raised blood pressure could become a repercussion of that.

Because my blood pressure can be really low (the 87/64 is more what I’m used to seeing on a blood pressure monitor), perhaps what’s happening is the medication is over correcting? Tomorrow I might try to delay taking morning tablets a bit longer and see if it remains low. It might be a dosage issue.

 

[Jonathan Edwards]

Those look like reasonably normal variations in BP, given the pulse rates, assuming that the higher levels on standing probably reflect the exertion involved. But if you are on medication I think it would be pretty impossible to interpret the figures in terms of any underlying abnormality.

Blood pressure levels vary a lot during the day for anything other than sitting quietly - which is the normal situation for BP checking.

 

[Dx Revision Watch]

Might be of interest:

https://www.ncbi.nlm.nih.gov/books/NBK482408/

Physiology, Pulse Pressure
Travis D. Homan; Stephen J. Bordes; Erica Cichowski.

Author Information

Authors
Travis D. Homan1; Stephen J. Bordes2; Erica Cichowski3.

Affiliations
1 Creighton University
2 Department of Surgery, Louisiana State University Health Sciences Center
3 Creighton University
Last Update: July 12, 2022.

 

[Jenny TipsforME]

A twist was that on the evening I started this thread I started vomiting and came down with a nasty virus. This makes me think that day’s blood pressure readings probably aren’t very representative and I need to start over. Hopefully I get a fairly typical day to try again before the appointment, but I’m not shaking this off easily. Has anyone had a virus which starts as if its food poisoning with repeated vomiting, no typical viral symptoms, then morphs into being flu-like with a cough? My LFT is clear and it doesn’t feel like my previous experience of covid. It’s a new one in the unpleasant collection of Viruses I Have Known.

NB my experience made me think of the pwme phenomenon of having a symptom holiday on the day before a new viral infection (I was having an unusually good day, an hour until I very much wasn’t). My hunch has always been that this indicates autoimmunity but could it be that raised blood pressure just before an infection relieves some ME symptoms?

But if you are on medication I think it would be pretty impossible to interpret the figures in terms of any underlying abnormality.

My medication is partly intended to correct low blood pressure, we know without medication my blood pressure is low (or it was last time I wasn’t taking any prescribed medication). I expect the 87/64 is something like my natural blood pressure, though fludrocortisone should have been working a bit at that point so it could even be lower.

What has been a change is sometimes having relatively high blood pressure, or changeable within the day. So this is more of an evaluation of my current dosages really, which have increased in an attempt to control increased symptoms.

Blood pressure levels vary a lot during the day for anything other than sitting quietly - which is the normal situation for BP checking.

I thought blood pressure would be expected to fall a bit standing up? I was just standing still, not doing anything. You think these readings are fine then, they’d only be high if in the standard sitting upright method of measuring? I still need to redo a full day measuring though, to take to the appointment.