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Hypertension, POTS, and White Coat Hypertension

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by debored13, May 19, 2018.

  1. debored13

    debored13 Senior Member

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    So, up until this past six months or so I've had perfectly normal blood pressure. I tend to get anxious when taking it at the doctor so a couple of slightly high readings but averaging around 120/70. In the past five months, I've had some fairly high readings. At first I thought it was anxiety, then perhaps low dose naltrexone.

    Then I went to a doctor appointment in nyc. They took my blood pressure and pulse and my bp was 140/? and my pulse was like 130. They gave me a vaccine and iv saline and took it again and it was 150-155/?
    I should note that when they took it I was basically having a panic attack. I've gotten anxious about blood pressure for some reason. Its a totally irrational response, but I can say with confidence that the anxiety must have had some effect on it.

    But my doctor thinks that it might be cardiomyopathy/due to POTS issues. When I take my pulse at home, it's normally about 70, but was 130 at the dr office so I do think I have anxiety + heart rate variability issues.

    I'm also very young so I'm wondering what the root cause is and how it relates to CFS. I don't wanna just be on blood pressure meds like beta blockers the rest of my life. frankly I think they make my cfs worse, and I'm wondering if slightly high blood pressure is an adaptation due to cfs. It developed so suddenly, too!
     
    pibee, pattismith, alkt and 1 other person like this.
  2. debored13

    debored13 Senior Member

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    I also wonder about good home blood pressure monitors and tips for taking it at home while being anxious
     
  3. debored13

    debored13 Senior Member

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    I also have been having consistent adrenergic symptoms like feeling "wired but tired" and sweating really, really intensely
     
  4. Ravn

    Ravn Senior Member

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    The white coat effect is a Thing so your high readings could very well just be a reaction to the situation, and not your normal BP. But since you'd want to be sure - and reassured – your idea of testing at home is a good one.

    The wrist devices aren't quite as accurate as the upper arm ones but they'll give you a good enough idea and are much easier to use. You could identify a few places at home where you can sit comfortably with your arm supported and about chest height. Then you could wear the monitor all day and just press the start button from time to time when you're feeling relaxed. Dozens of times the first few days without paying too much attention to the results, just to get used to the feel and, hopefully, get over the anxiety.

    Most devices record your readings so you could just look once a day so you don't get nervous about the results at every reading. Plus you could take the readings to your doctor to discuss.
     
  5. TenuousGrip

    TenuousGrip Senior Member

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    It might be worth seeing a cardiologist. An ambulatory BP monitor would let them see your BP over time, and at home. An echocardiogram and an EKG probably couldn't hurt either.
     
    alkt likes this.
  6. debored13

    debored13 Senior Member

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    I might just buy a bp monitor because i feel like even in the two day span of an ambulatory reading I would get nervous, I might have to wait longer for the anxiety around it to iron out, and having a home monitor might be useful. But yes, I will go to a cardiologist for an echo soon. Have had ekgs before I was very sick but not recently
     
  7. debored13

    debored13 Senior Member

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    Idk if I mentioned but the beta blockers just make me very tired, depressed, and i get crazy dissociation. I'd like to find the "root cause" of this if there is one, because I don't want to be on beta blockers for rest of my life. I don't think that hypertension just happens suddenly for no reason like this.

    I also get what seem like some other adrenergic symptoms, occasionally just extremely wired/uncomfortable feeling combined with very very extreme sweating when doing no activity--just sweat buckets. this never happened before cfs and only started happening like five months ago, seems to get worse around the times i get poor bp readings tho
     
  8. debored13

    debored13 Senior Member

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    I seirously think some heart drugs like statins and beta blockers aren't actually good for u even if they treat symptoms so I'd love to be able to tease out the root cause here
     
  9. debored13

    debored13 Senior Member

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    So I got a home blood pressure monitor, and my readings were basically normal. Hopefully I'm doing the readings right but I think I am.

    The highest was 144/95 but that was when i was basically nervous (I know, even at home) and hyperventilating, the first reading. When I sat and breathed for awhile I got it down to 130/90 and finally to like 120/85. But these were all when on (the lowest dose) of atenolol. The second day I did the readings without atenolol, when I woke up, and got 125/85, and they all hovered around that. And that was even while a little bit nervous! I'm super glad I got the home bp monitor because my doctors were really concerned because my bp was apparently crazy high in the dr office... like 160/100 or something idk... I do basically have panic attacks in the doctor's office
     
  10. debored13

    debored13 Senior Member

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    this certainly doesn't rule out cardiac dysfunction, which I'm sure I and most CFS people have to some extent e.g. I wouldn't perform well on a stress test, but it does mean that perhaps my doctor will be less nervous about certain treatments, like IV saline... and not think that I have to be on beta blockers which make me feel bad
     
  11. debored13

    debored13 Senior Member

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    Anyway I'm pretty sure that my blood pressure isn't baseline crazy high, which is good because I think that unfortunately if it was my doctor would feel less comfortable about trying certain things like iv saline
     
  12. Countrygirl

    Countrygirl Senior Member

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  13. debored13

    debored13 Senior Member

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    my readings at home have continued to be very normal. i think stopping the LDN might have helped.
     
  14. alex3619

    alex3619 Senior Member

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    You might like to watch this - It will not apply to all of us, and does not cover elevated BP at all, but it gives some flavour of where the research is at.

    Currently I have increasingly high BP I am trying to get under control. I am aware of some older ME patients who have elevated BP, plus orthostatic intolerance, and there seems to be a tendency for long term high BP problems.
     
  15. debored13

    debored13 Senior Member

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    thing that's bothering me is because of a couple high readings in office, my dr is hesitant to have me do isotonic or hypertonic saline at home. i have been taking bp religiously for awhile at home and it's consistently very normal! usually around 120/80--basically perfect. This doens't mean i don't have autonomic/cardiac issues but i would think it would reassure the doctor that i'm not gonna have a stroke from a little saline! she's worried about losing her license, I understand that. I'm a lot less risk averse than any doctor at this point because if I don't make some quick improvments, the psychological consequences will be dire. i wish one could just sign something saying they won't sue for malpractice etc...
     
  16. pibee

    pibee Senior Member

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    I have only orthostatic hypertension.When I lay and sit it was always good so nobody spotted the problem , but on tilt test avg was 175/135 and 200/160 was highest score.

    :-/
    I walk around w HR 150+ for 10+ years without feeling any chest related symptoms or heartbeating... and nobody ever referred me to cardiologist even.
    Only way to know I have POTS is when my CellTrend came extremely high and because I lay whenever I can, and then in the end accidental tilt up testing I did, by accident in a way, not planned.

    :-/
     
  17. Sherlock

    Sherlock Boswellia for lungs and MC stabllizing

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    There is also white coat hyperglycemia, also anxiety-caused. Some docs disregard high office readings for blood glucose for that reason.

    You can take your wrist monitor to a doc and have them check it for accuracy against whatever they use and is known to be good. Well, you'd be looking for artificially high readings to be very similar from both.

    Some docs would not want to treat white coat HTN. Others would say that anxiety-caused HTN would be present all through the day at work etc. anyway, so they would want to treat it.

    There are some people who are called "hot reactors" in past hypertension studies. When their elbow is put into very cold water, their BP skyrockets. That specific term probably hasn't been used much, though, and I saw it years ago. Ice water was just easier to work with than causing emotional stress, but the results should likely be the same.
     
  18. debored13

    debored13 Senior Member

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    I totally refuse to take bp meds for this. It's fine most of the day, all day, every day. Some things might make it spike (LDN) but even then it doesn't get to dangerous/stroke levels. Heart medicine and bp medicine seems like an area in modern medicine where the meds are actually counterproductive and illuminate some kind of failure in the dominant theory. I got bad air hunger from these meds (beta blockers) and it didn't even help my bp much. I consider exacerbating air hunger a very bad sign with a med, seems like a sign it's terrible for metabolism.

    Now I feel a lot less anxious about my bp. But can i get my doctor to be, that's the question. I showed her all the readings and she still is anxious about me having a stroke. they're all around 120/80!
     
  19. Sherlock

    Sherlock Boswellia for lungs and MC stabllizing

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    Well, since you mention problems: I remember from years ago, a top U.K. researcher named Cockroft who was looking into whether atenolol actually results in more death.

    There was also a big meta study ~2010 which said that aggressive lowering of BP through meds didn't actually reduce cardiac events anyway.

    But if you ever get visual distortions, take your BP for prudence sake since that can be a sign of dangerously high BP.
     

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