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ME/CFS and HIGH blood pressure

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by meadowlark, Jul 17, 2011.

  1. Valentijn

    Valentijn Activity Level: 3

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    Your heart rate is rising by 30-40 bpm when standing, so it looks like POTS is likely. It looks like the rise is more extreme when you've been standing longer.

    At one point (07:30 PM 113/88 95 standing, making supper), your blood pressure is lower than at any other time except one, and your pulse pressure (difference between systolic and diastolic) has narrowed to 25. Pulse pressure is abnormally low if it's less than 25% of the systolic value, therefore yours should have been over 28. You're also a bit low after your walk to the mailbox. So Neurally Mediated Hypotension also seems possible.

    NMH is most noticeable after standing upright and very still (not shifting or fidgeting) for 10+ minutes prior to checking your BP. If your BP monitor gives an error message at that point and you aren't moving at all, it's probably because your pulse pressure is too weak for the monitor to detect your pulse consistently. Mine craps out at about 18-20 pulse pressure.
  2. jimells

    jimells Senior Member

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    Valentijn, thanks for the analysis. I've been trying to get a tilt table for two years. I never really suspected NMH before.

    I took readings most of the night, since I couldn't sleep until 2 AM then woke up with a migraine at 5:30 AM. At night there were a number of readings around 115/75 HR 55. To my limited understanding, this doesn't seem consistent with hypertension. I've read a number of times that the highest BP is supposed to be around 6 AM. At that time I measured 112/73 HR 61.

    I have noticed low pulse pressure pretty often, and sometimes the machine shows an error, which I have always wondered about. Now I know. Thanks.

    I've decided to try the atenolol at 1/4 the prescribed dosage, since there seems to be support for the idea that it might help POTS and migraines. This is the 3rd beta blocker I've been prescribed over the years. If I can't tolerate this one, maybe they will figure out I need to try something different??

    Maybe these readings will prod the doctor into taking my problems seriously, at least to the point of ordering 'official' readings from an automatic monitor.
  3. Valentijn

    Valentijn Activity Level: 3

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    Unless the doc is a cardiologist, be prepared for him/her to have no idea about POTS or NMH. A lot of docs seem to think that the only blood pressure problems involve hypertension :p Might not hurt to print out the CDC or NIH pages explaining the diagnostic criteria for them.

    http://www.ninds.nih.gov/disorders/postural_tachycardia_syndrome/postural_tachycardia_syndrome.htm
    http://www.nhlbi.nih.gov/health/health-topics/topics/hyp/causes.html

    Unfortunately I can't find anything from the CDC or NIH mentioning narrow pulse pressure, but at least the above link mentions blood pressure dropping. It just doesn't specify that the systolic is dropping while the diastolic stays the same, thereby narrowing the pulse pressure.
  4. ahimsa

    ahimsa Senior Member

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    Link to the Johns Hopkins document on Orthostatic Intolerance

    Hi jimells,

    Here's a link to another document, by Dr. Rowe from Johns Hopkins University, describing Orthostatic Intolerance (includes POTS and NMH):

    http://www.cfids.org/webinar/cfsinfo2010.pdf (PDF file)

    I've posted this on other threads before but haven't seen it posted on this thread. This document does not address high or spiking blood pressure (which is how this thread started) or the different types of POTS. However, it might answer some of your questions. For example, it talks about the issues with blood pooling (blood not getting to the right places, as you said in your post). And it discusses some of the prescriptions that are used to treat this (e.g., beta blockers such as atenolol).

    As others have mentioned, it's unlikely that any doctor you visit will know anything about Orthostatic Intolerance (OI). I saw two different specialists during the last couple of years (sleep specialist and a GI specialist). Both of them had not only had never heard of OI but also neither of them even glanced at this handout when I gave them a copy (and I only printed out the first 10-11 pages, not the longer appendix parts).

    Even my cardiologist, who does know about OI, and who has been treating me for NMH since 1995, admits that his knowledge is limited and that he does not specialize in this field (autonomic dysfunction). Most of his patients have completely different problems. In fact, I'll bet I'm the only patient he has with OI.

    OI is very complex and can be difficult to treat. One patient may do really well with a combination of drugs along with extra salt/water intake while another may see no improvement at all, or have side effects from the drugs. And doctors are still trying to figure out all the different types of OI and agree on terminology.

    I do wish you the best of luck! I hope you find something, even if it is only avoiding those activities which aggravate your symptoms, that helps you.
  5. jimells

    jimells Senior Member

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    I've been on the atenolol a few days now. The first day I took 1/4 the prescribed dose, or about 6 mgs. A few hours later I couldn't stay awake, felt pretty bad. My BP was 89/68, that's hypertension?

    I called the pharmacist to see if they have anything smaller than 25 mg, they don't. The pharmacist said maybe I should call the Emergency Room. Will they actually talk to people on the phone? Seems unlikely. In the old days I would've called the doctor's office, the answering service would've picked up, and the doctor would've called back in a few minutes. But that was the old days.

    Anyway, the 25 mg pill is tiny, but I managed to split it in quarters, then into eighths.
    The tiny dose seems to be helping me some. Sometimes I can work in the kitchen and my pulse stays in the 70's, so that's a step in the right direction.
  6. taniaaust1

    taniaaust1 Senior Member

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    "High blood pressure is anything above 140/90 mm/Hg" (quote from wikipedia).

    I personally dont think by those readings you have that you could be said to have actual hypertension with just those occassional higher readings you are getting.. If your doctor keeps insisting ask for 24 hr BP monitoring done. That will probably show it at readings even lower then the ones you have there.

    They call that issue with the BP going up just at doctors "white coat syndrome" http://en.wikipedia.org/wiki/White_coat_hypertension

    "The debate and conflicting ideas revolve around whether or not it would be feasible to treat white coat hypertension, as there still is no conclusive evidence that a temporary rise in blood pressure during office visits has an adverse effect on health.

    In fact, many cross sectional studies have shown that "target-organ damage (as exemplified by left ventricular hypertrophy) is less in white-coat hypertensive [patients] than in sustained hypertensive [patients] even after the allowance has been made for differences in clinic pressure".[6] Many believe that patients with "white coat" hypertension do not require even very small doses of antihypertensive therapy as it may result in hypotension, but must still be careful as patients may show signs of vascular changes and may eventually develop hypertension."
  7. Caleb

    Caleb [banned as spam]

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    The best ways to control the blood pressure are:
    The use of high quantity of the water
    Daily exercise
    Use the vegetables in your life
  8. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Yes, you have to do all the right things, but many with POTS or other problems have a hard time. When the Autonomic Nervous System is dysfunctional the BP goes up and down.
  9. jimells

    jimells Senior Member

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    "In fact, many cross sectional studies have shown that "target-organ damage (as exemplified by left ventricular hypertrophy) is less in white-coat hypertensive [patients] than in sustained hypertensive [patients] "

    This appears to be the case for me. The echocardiogram showed no abnormalities.


    I don't quite understand what vegatables have to do with hypertension, or water either. The diuretics that doctors like to prescribe cause fluid loss. They gave my mom the gout.

    My BP goes all over the place, like in the chart above. But the doctors just ignore that.

    Sallysblooms, your crown keeps growing. I hope its size is in inverse proportion to your POTS. What do you use to control it? The tiny-dose atenolol is working pretty good for me, as long as I stay away from the doctor.
  10. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Diuretics with POTS can be awful, tried a tiny peice of one pill before we knew what was wrong (POTS). I was so dizzy I couldn't move for 9 hours.

    Jimells, I have to take Benicar for the BP, it got so high with POTS. Otherwise, it is all good stuff, supplements! I am much better, especially my CFS! If it weren't for POTS I would be able to do everything I want.

    I tried Atenolol, it made me cough and cough. Had to stop.

    ALA is fab for me, amazing for the nerves. I take so many supplements, hard to list.
  11. ramakentesh

    ramakentesh Senior Member

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    A large subset of POTs patients have orthostatic hypertension - not true hypertension, only on orthostatic challenge. these patients still seem to have cerebral hypoperfusion - perhaps form cerebral vasospasm.

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