• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Blood Pressure Going Very High With Almost No Effort

Messages
76
Hi Guys,

OK normally my BP is healthy when it's taken by a medic. When younger I even had a low BP at one measurement.

I bought one of those wrist BP machines and took my BP after I had been standing up hanging washing up on a clothes airer for about 10 minutes. It was 156 over 85 which my research tells me is classed as a high BP. So I retook it after I had been seated for a while and it was 99/71 (a great one). Is this too large an increase for very little effort, is deconditioning enough to cause this or is it a CFS type symptom?

I do have tendency to neurally mediated syncope, which comes on from standing too long, but I thought that was associated with low BP. I previously had the tilt table test done, which is where the finding was from. I started a full faint when the table was upright after I think it was 18 minutes. But their finding was not wholly conclusive, only that I apparently didn't have PoTs. I have also read that there can be false negatives on TT testing.

It may be that this rise in BP is fine, I just have no idea and wondered if anyone else knows.
 

confetti11

Senior Member
Messages
279
My BP is high (used to be low years ago), and I have one of those molecular medicine/cfs doctors. He says it's because my adrenals are weak and can't hold a steady pressure. That's my very generic explanation.
 
Messages
76
The UK establishment doesn't seem to hold much with things like adrenal fatigue as being a real medical condition. I wondered if my readings are to do with my body needing to exert too much effort for little activity, which might correlate with the extreme fatigue I feel.
 

Hugo

Senior Member
Messages
230
Hi Guys,

OK normally my BP is healthy when it's taken by a medic. When younger I even had a low BP at one measurement.

I bought one of those wrist BP machines and took my BP after I had been standing up hanging washing up on a clothes airer for about 10 minutes. It was 156 over 85 which my research tells me is classed as a high BP. So I retook it after I had been seated for a while and it was 99/71 (a great one). Is this too large an increase for very little effort, is deconditioning enough to cause this or is it a CFS type symptom?

I do have tendency to neurally mediated syncope, which comes on from standing too long, but I thought that was associated with low BP. I previously had the tilt table test done, which is where the finding was from. I started a full faint when the table was upright after I think it was 18 minutes. But their finding was not wholly conclusive, only that I apparently didn't have PoTs. I have also read that there can be false negatives on TT testing.

It may be that this rise in BP is fine, I just have no idea and wondered if anyone else knows.


What did your heart rate and blood pressure measure to on the tilt table test?
 
Messages
76
They didn't give me the readings on the TT test Hugo. They just said I had normal BP and HR. Before I had the TT test though two different specialists had said it was likely I had PoTs when they took laying and standing BP and bearing in mind the symptoms I had during the testing I was amazed they said everything was normal.

Not done that TigerLilea but those two readings were done on the same wrist machine of mine, so even if the calibration is different to the GP machine, the variance between the two readings is accurate I would have thought.
 

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
I have the same, it was really freaking me out early in the illness. Well two years later and I still live, no heart investigations shone light upon why the difference is so huge between standing and supine
 

TigerLilea

Senior Member
Messages
1,147
Location
Vancouver, British Columbia
They didn't give me the readings on the TT test Hugo. They just said I had normal BP and HR. Before I had the TT test though two different specialists had said it was likely I had PoTs when they took laying and standing BP and bearing in mind the symptoms I had during the testing I was amazed they said everything was normal.

Not done that TigerLilea but those two readings were done on the same wrist machine of mine, so even if the calibration is different to the GP machine, the variance between the two readings is accurate I would have thought.
Your blood pressure will be higher right after you have exerted yourself. That is why doctors usually have you sit for 10 minutes before doing a reading.
 

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
Your blood pressure will be higher right after you have exerted yourself. That is why doctors usually have you sit for 10 minutes before doing a reading.

Not supposed to go that high from merely standing though
 
Messages
76
Yes that's what I thought. Literally just standing picking washing up to hang it up almost on the spot, is not running a marathon and it seemed high to me.
 

NelliePledge

Senior Member
Messages
807
There is a version of orthostatic intolerance called orthostatic hypertension. It is not well known compared to orthostatic hypotension. I have Hypertension anyway and it can be worse when I stand up and BP is lower when lying down but I haven't talked to my GP about it as I've not had dizziness or fainting and I'm not convinced they would do anything as they are discouraged from referring people for tilt test by NICE guidelines. I keep meaning to get a set of data together to take to her but haven't done it yet.

This info from Dr Bell http://www.oiresource.com/tresults.htm
 

ryan31337

Senior Member
Messages
664
Location
South East, England
Hi @Complex CFSer,

Did you have your Tilt Table Test performed by a specialist in orthostatic intolerance? You'd be very lucky if a run of the mill cardiologist knew how to run the tests properly and interpret/treat well. I went through 2x useless cardiologists before self referring to one that specialises in POTS.

For starters, was it conducted first thing in the morning before fluids? Can make a big difference.

NMS and POTS can go together frequently. I have POTS presentation on the TTT + syncope at about 8 minutes. My BP also rises significantly. Don't let them fob you off with 'water and salt' treatment, midodrine might be uncomfortable given the tendency to hypertension, but there are several other drugs out there that might really help.

upload_2017-10-12_0-17-26.png


If you need details of a really good team of consultants in London that understand OI/POTS and don't roll their eyes at a CFS diagnosis let me know.

Ryan
 
Messages
76
Thanks for that information NelliePledge, interesting.

Hi ryan31337, it was done at the Autonomic Unit at UCLH so they're the experts I think. I've had a previous ECG trace and it said 'normal variant of ECG which was sinus arrhythmia. I had a more recent heart check which showed only some mild and trace regurgitations which are apparently very common in the general population. I have rummaged around and now found my Autonomic Unit results (from Jan/2016), during 60 degree head up tilt:

1 min 113/64 93bpm
4 min 110/71 94bpm
7 min 115/69 91bpm
10 min 104/68 96 bpm

which do look OK.

Isometric exercise 120/73 & 74bpm before and 127/75 & 74bpm during
mental arithmetic 124/73 & 73bpm before and 128/74 & 78bpm during
cutaneous cold 121/67 & 74bpm before and 120/90 & 76bpm during (I couldn't tolerate this anywhere near how long I was supposed to, it was the hand in the bucket of icy water! I managed 30 seconds only)
hyperventilation 119/67 & 74bpm before and 111/72 (unknown bpm) during (I started to faint during this and had to stop at 20 seconds)
it says "respiratory sinus arrhythmia was present during deep breathing" (63-68bpm)
valsalva manoevre "was well performed" (can't remember what that was) and says BP profile was normal
said I had "minimal pooling in the feet only on head up tilt"
when they removed the cannula I had drop in BP and HR. Minimum HR and BP were 80/40 and 61bpm

Said I have no orthostatic hypotension, rise in HR for 20 seconds in hyperventilation, no evidence for PoTs or cardiovascular autonomic failure. So they said because of what happened when they removed the cannula it was suggestive of autonomic mediated syncope. But the 'diagnosis' was "tendency to autonomic mediated syncope" which isn't a firm diagnosis really and is unexplained.

Yes, they did give me the standard recommendations to take away, such as salt intake and all the usual!

Bearing in mind the above results, do you think I don't need further evaluation for PoTs? The testing was done at about 12.30pm-1pm BTW.
 

Chris

Senior Member
Messages
845
Location
Victoria, BC
Wrist BP using an optical sensor route rather than a chest strap can be way off, particularly if you are actively moving the wrist that carries the watch; I have a MIO Alpha, and though the readings when I am resting are accurate, they can be way off if I am rowing or walking using Nordic walking poles.
 
Messages
76
Thanks Chris. I was seated and still for both measurements however. I followed the instructions which said to hold the wrist at heart level which I did. Because the second reading was in line with my more typical measurements, and the high one was right after the mild activity, and the second one a while later, I think that indicates the readings were likely correct.

The technical information on the device says it uses oscillometric method and accuracy = pressure: +3mmHg and pulse: +5% of reading. Although that means little to me!
 

ryan31337

Senior Member
Messages
664
Location
South East, England
Hi @Complex CFSer,

Thanks for sharing the results from the autonomic unit, pretty cool! I don't know what the docs there are like, I suppose there's always the chance they only concern themselves with 'serious' stuff like autonomic failure and look down their noses at POTS, but the fact they drew attention to it suggests otherwise I'd think.

Do you know what your HR was at rest before tilt? If it was around 70bpm as per your other tests, you would actually be quite close to meeting the clinical definition of POTS. Certainly if it were me, a morning test would make a difference and push me over the threshold. Not to mention that POTS severity can wax and wane quite a lot over days/weeks, depending on whats causing it.

There is no sign of orthostatic hypertension on the tilt test, so again perhaps this is something that comes and goes (it is linked to dysautonomia, as per POTS). Equally it might be your own BP machine is a bit naff, the wrist machines don't have a great rep for being particularly accurate.

Ryan
 
Messages
76
At the approximate period of time I went for the TT testing, I had been so dizzy so frequently, that even sitting down upright was often too much for me and standing up to walk was worse. I would need to stop several times to climb the stairs. Since I have been taking a massive amount of supplements including methylated B12, the dizziness isn't so bad and I can manage the stairs better (still not normally though). But some days are. and always have been since this all started, been worse than others. So it's possible it comes and goes. Another thing I wonder, is because I've had low BP in the past and my resting BP looks health , whether in fact I might have high BP for little reason, in relation to my own readings, because my baseline is lower than 'normal'. So it could be a 'hidden' issue if you know what I mean. I know people can drive themselves crazy wondering all sorts, but I'm a very analytical person and try to get to the bottom of things. Especially when I have these symptoms and there is no firm diagnosis (plus of course had the brush off from medics like many here probably have too).
 
Messages
76
Interesting @gregh286, I didn't know that was the case. Wow, that's a massive reading! Maybe that's it, abnormal fluctuations then, rather than a permanent state of it.
 

ryan31337

Senior Member
Messages
664
Location
South East, England
Wow, that's a massive reading! Maybe that's it, abnormal fluctuations then, rather than a permanent state of it.
Ideally you want a 24hr (or longer) ambulatory recording...don't expect to get much sleep with it on tho!

Here's a fun one from before I received any treatment, funnily enough it finally made the docs sit up and pay attention for a change :D
upload_2017-10-12_14-35-4.png


The 224/156 evening peak was after I took myself out for a 5 minute walk (hey, exercise is only ever good right!?). Naturally by the end I was drenched in sweat, had a pounding headache with pulsatile tinnitus. The previous recordings at avg 195/115 were sitting down relaxed and watching TV - suspect postprandial issues played a part with this. The peaks the next day were from walking 5 mins to and from the doctors surgery to tell them their machine was broken (it wasn't!). I also quite enjoy my bradycardia in the 30bpms dropping off the bottom of the chart :rofl:

I started on a low dose of bisoprolol immediately after this and rarely saw readings above 160/90 again.