POTS Negative, Possible Other OI – Postural High Blood Pressure

So my Lovely GP administered a proper POTS test in her office as promised for me at the end of her surgery so we had enough time. My ECG hadn’t shown anything abnormal, other than having a very high heart rate (about 117-122bpm resting sitting down).

I was careful not to over exert in the morning before we arrived so that my resting heart rate wouldn’t be too bonkers to begin with and the increase all the more dramatic.

Except when we did the test my heart rate did not spike as dramatically as I had thought it would. It raised from a resting rate of around 107bpm to 116bpm standing after a few minutes and then there it stayed for the next 10 minutes. My heart rate was consistently high, but not high enough or a large enough increase in bpm to confirm a POTS diagnosis.

11oct2007 swirly headWhat did happen however was that my blood pressure climbed from lying resting to standing. And it continued to climb over the next 15 minutes. It’s a little high when resting for my age but once I was standing it was a cause for concern and further investigation. My GP took bloods there and then, then requested they be repeated once the results came in.

I’m going to have a 24 hour blood pressure monitor from the surgery next week when they’ll also take the repeat bloods for testing.  I’m trying to work out a timetable for the day so that I can get a variety of measurements as it goes off every 30 minutes during the day and every hour while you sleep.  So I’ll need to have some reading sitting relaxed and then for others begin standing or moving around a few minutes before the monitor goes off.  Otherwise I’ll only show fairly normal readings for the sitting down and sleeping parts, when it’s being upright that seems to make it climb.

I repeated the POTS test using my home blood pressure monitor the day after I saw my doctor (BP monitor very similar to the doctors) and I pretty much replicated the results of the previous day.  My heart rate did climb bit only to around 115bpm over 10 minutes of standing still, while my blood pressure rose and then after 3 minutes of sitting back down my blood pressure dipped.

RESTING  Start of test:   BP 128/96, Pulse 96

STANDING 3 mins:          BP 130/92, Pulse 106

STANDING 10 mins:       BP 132/95, Pulse 115

RESTING 3 mins:              BP 112/84, Pulse 90

Out of interest one weary evening I measured my blood pressure having climbed the stairs at bedtime. I felt shattered, my heart was thumping inmy chest (which it doesn’t always do when my HR is fast), I felt headachey and light headed. When I measured my pulse it was 124bpm but my blood pressure was up to 137/99 compared to 87bpm and 127/87 sitting on the sofa.

Postural Hypertension or Orthostotic Hypertension (high blood pressure on standing up) does exist but is even less well known that Postural Hypotension (low blood pressure on standing up) which is not particularly well known itself!

Unless my blood tests reveal an possible underlying cause, or perhaps even if they do, a referral to a cardiologist is likely the next step. Unfortunately my Lovely GP doesn’t know much about local cardiologists so doesn’t have someone lovely in mind she can send me to so it might be a bit of pot luck. If the cause is OI related will I find a cardiologist who knows about it or is willing to be open minded?

Dr Bell defines 5 kinds of Orthostotic Intolerance

There are five separate abnormalities than can occur during quiet standing:

1. Orthostatic systolic hypotension where the upper number (systolic) blood pressure drops. The normal person will not drop BP more than 20 mmHg on standing up. One patient I follow with CFS had a normal BP lying down (100/60) but it fell to 60/0 on standing. No wonder she was unable to stand up – a blood pressure that low is really unable to circulate blood to the brain. In any ICU [intensive care unit] they would panic seeing a BP like that. And she was turned down for disability because she probably was a hypochondriac.

2. POTS stands for postural orthostatic tachycardia syndrome. A healthy person will not change their heart rate standing up for an hour. In a person with POTS, the heart rate increases 28 beats per minute (bpm). Some experts say the heart rate should exceed 120 bpm to have POTS. But either way, this increase occurs frequently in CFS. I think the increase in heart rate is linked to the decrease in blood volume. (Orthostatic intolerance has been called Idiopathic hypovolemia in the past.)

3. Orthostatic narrowing of the pulse pressure. The pulse pressure is the difference between the lower number of the BP from the higher number. For example, a normal person with a BP of 100/60 would have a pulse pressure of 40. It is actually the difference between the upper and lower number of the BP that circulates blood. If the pulse pressure drops below 18, it is abnormal and blood would not circulate in the brain well. We routinely see in our patients with CFS blood pressures of 90/80, thus a pulse pressure of 10. The current record holder is a young woman with CFS whose pulse pressure fell to 6 mmHg before she passed out.

4. Orthostatic diastolic hypertension. The lower number of the BP often reflects the systemic resistance, and while standing many persons with OI and CFS will raise their lower BP number (diastolic) in an attempt to push blood up to the brain. Sometimes this is dramatic. One patient being followed with CFS had a low blood volume, about 60% of normal. While lying down, his BP was 140/80. After standing, his BP rose to 210/140 before we made him lie down. His pulse went up to 140 bpm. He felt rotten but refused to sit down by himself…

5. Orthostatic diastolic hypotension. This represents a fall in the lower number of the BP, and seems to be the least frequent abnormality in patients with CFS I have tested.

My variations in BP are not as dramatic as the patient Dr Bell talks about but they’re enough to give me concerns. Especially with an illness where many experts already believe that the heart is under a lot of strain.

20080224_selfIt might account for why since I’ve been taking LDN I’ve felt I have more energy but haven’t been able to maximise on that – probably because everytime I am on my feet for longer than a few minutes my BP is rising and my heart rate is too fast (I’ve measured my HR on the go up to 160bpm just doing very light physical activity like climbing a few steps slowly).

Of course the high heart rate could be as my Lovely GP suggests due to enforced sedentary lifestyle and a bit of deconditioning but it doesn’t feel like it to me. I’ve stayed relatively mobile and over the last year tried to gently increase activity but keep hitting brick walls that I feel are down to tachycardia.  I can’t prove it because I can’t exercise my way past my high HR :/ And of course the high BP could have an underlying cause not yet diagnosed but the postural/OI thing is somewhat intriguing.

Hopefully the 24 hour monitor will demonstrate some juicy results.

This is a good research paper on postural high blood pressure (one of the few I’ve found) in PDF about Orthostatic hypertension: when pressor reflexes overcompensate by Joshua Fessel and David Robertson – or here is a web page version of the article

Since I’ve not presented in the clincial test with classic POTS  I’ve sometimes felt in danger of other ME/CFS people saying I haven’t got real ME because I don’t have POTS or a drop in blood pressure like Orthostotic Hypoptension. These are classic signs that typically accompany ME/CFS. But Dr Bell’s article re-assures me that there are different forms of OI and a rise in BP is as valid in an ANS autonomic sense as a drop in BP or big HR increase like POTS.  Standing up sure can have some odd effects on ME/CFS people.


9 Responses to “POTS Negative, Possible Other OI – Postural High Blood Pressure”

  1. 1 Dominique June 7, 2011 at 7:48 pm

    Thanks Rachael. I’m book marking this and re-reading it over and over until I understand this. I think I will have my Personal Assistant help me do a ‘mock’ test so I can see where I fall. I think I am having both but your explanation is very clear so I think I can now figure it out and then go from there. I think I will post on my experience as well.

    Good luck on your future tests!

    Thanks for doing this regardless to what other’s think or say. It is important to know where we stand and where we can make changes to help us feel better.


    • 2 rachelcreative June 9, 2011 at 9:59 am

      Hi Dominique. Do be careful as the testing can lead to crash or relapse. The key is to stand perfectly still, no moving arms or talking or moving your feet. You may see blood pooling in your lower legs which is shown by lower legs going a blue tinge. For some it can take 10 minutes for the OI response to show. Others it can take up to 30 minutes but I’m sure you won’t be standing for that long!

      I have links if you want more info on testing. But basically rest, preferably lying down for 10 minutes first. Then stand still for 10 minutes and take readings at say 3, 6 and 10 minutes. Then I sit (or lie) back down and take my readings again at the same intervals out of interest. It helps if you have someone to take the readings for you then you can avoid moving during the test.

  2. 3 greenwords June 8, 2011 at 8:18 am

    You prob know this after all your reading, but there is a subset of POTS called hyperadrenergic POTS, characterised by raised rather than lowered BP on standing. I’m not an expert, just mentioning in case it’s something else to look into?

  3. 5 molly June 15, 2011 at 5:49 am

    I was diagnosed with POTS in August 2008, and have since been diagnosed with Lyme disease and multiple co-infections. I wanted to share this with you (as I accidentally came across your blog looking for something different!) because I am absolutely convinced POTS is nothing more than Lyme disease symptoms, after my personal experience. Many people also hypothesize that CFS may be caused by Lyme disease.

    I wanted to pass this along to you so that you can do some research if you are so inclined. Best of luck!

  4. 6 tiannafonz March 21, 2012 at 3:57 am

    The proper testing for POTS is a tilt table test. Have you had this test?
    This is the test that is required for proper diagnosis and is done through a cardiologist. If you have OI or POTS should be under the care of the proper type of cardiologist and not just a GP. This was my problem for 16 years. Once I got to the right specialists, my illnesses were finally properly diagnosed and treated.

    • 7 rachelcreative March 30, 2012 at 8:59 am

      Tilt table testing is not always a good idea for those people with ME as it can trigger a severe worsening of their overall condition. As you know it’s difficult to get access to those specialists when the GP’s don’t know much about ANS problems.

      • 8 tiannafonz April 18, 2012 at 9:03 pm

        The tilt table test was a risk for me but they said it was the best way to truly identify the issue. Not only did I pass out, but then they gave me nitroglycerin and I went into SVT. It took me years to find the right doctor and each time I go to a new specialist or to the “clinic” for a cold – I have to explain to the doctor what POTS is and what it means, etc. Crazy! 🙂

  5. 9 ChemicalRefugee April 11, 2013 at 10:02 am

    I have CFS/FMS and Multple Chemical Sensitivity and all sorts of other pain syndromes. So does my wife and she has Elhers Danlos as well. I also have lymphy legs with veracious veims and venus insufficiency. We also have both had positive rickettsia testing (several times) and went thorugh antibiotic therapy. Unfortunately this left me very allergic to doxy (so flagyl instead). I also have polycythemia (ovef twice the normal red count…they were trying to get me BLED every month, but NOBODY would do it or supervicse it…so I did research and found an herbal way to lower my counnt (since it is caused by low oxygenation, Schisandra helps loads).

    Anyway – my BP – In 1999 my BP was measured a bit worryingly high on a physical for migrating to Australia (back when I was essentially well). . A decade ago they found it up at 170/95 (and higher) every time I went into the docs, so I went on meds. It took 2 years to find a meduication that did any good.(I asked my mom what she was on – VERAPRAMIL). Even on the meds, if I bend over my face turns very red; when I am standing my feet puff up and go purple – and my hands are always red if in a “down” position from my head.


    AND – whenever I go ANYWHERE polluted (not in our controlled house) it is FAR WORSE. Anyplace with a high petrochemical or VOC level (car exhaust, perfumes, etc) my BP spikes VERY high for several days. Same thing happens if pollution drifts in form another house in our tiny town. We only do one shop trip per month for food and doctoring (we live out in the country where we can breathe and are too ill to travel more than that)). I spend about 4 to 5 days afte EVERY trip out with my BP up at 175/90 (on my meds) and if I move around it gets far worse. Then it ddrops back down again.

    Nobody has EVER looked into the idea that people can react badly to common chemicals in our air (etc) and that *this* could easily cause BP problems. From my reactions it is obvious that it DOES cause this reaction.

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Push It 11 Sep 2011

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