Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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From POTS to bradycardia?

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Richard7, Jun 28, 2016.

  1. Richard7

    Richard7 Senior Member

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    Something odd just happened.

    Normally I have a resting heart rate in the high 40s or low 50s. There have been occasions when everything seems to go out of control and I get a resting heart rate in the 90s, but not many (that I have measured at any rate).

    Normally when I stand I get a pretty immediate jump up to the resting + 30 or more.

    Today, a couple of hours ago, I got up from a rest and took my standing heart rate and it was only in the 50s. Or rather I measured it the way I normally do (with a pulse oximeter) and the first reading was 70 and it promptly fell to the low 60s, but I felt odd so I got out my wrist based blood pressure meter and tested my heart rate and blood pressure by this point my heart rate was in the 50s and my blood pressure was +20mm for both systolic and diastolic.

    I know that the wrist based meters are only designed for sitting down, so I was misusing it, and I was not able to stand completely still, I wobbled back and forth a little, but this seemed very odd.

    I have been consuming more salt water than usual, and have been feeling a greater need than usual so that could be part of the reason I guess, But I was just wondering if someone with a better handle on orthostatic intolerance/dysautonomia could comment.
     
  2. taniaaust1

    taniaaust1 Senior Member

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    I find those wrist ones error a lot so i dont really trust them but you possibly could of had something strange going on.
     
  3. Richard7

    Richard7 Senior Member

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    oops just though I have no idea what my normal standing blood pressure is, I was comparing to sitting blood pressure. So I guess it is POTS with resting bradycardia while horizontal to bradycardia with high blood pressure while vertical.
     
  4. Richard7

    Richard7 Senior Member

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    yeah, I wish I had bought the other type.
     
  5. ryan31337

    ryan31337 Senior Member

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    Hi @Richard7,

    It's not very helpful but from my own experience I can say that my HR/BP responses can be very variable. Sometimes its possible to correlate spikes with events (exercise, dehydration, blood pooling etc.) but often I find it to be quite the mystery. One personal trend that seems to repeat more often than not is that during PEM I have decreased HRV, increased orthostatic tachycardia & increased BP.

    If the resting tachycardia is frequent & significant I'd be inclined to get that checked out, I don't think it really fits the standard dysautonomia spread that we experience.
     
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  6. Richard7

    Richard7 Senior Member

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    @ryan31337
    the resting tachycardia is rare and has not happened in months. Indeed it was not resting tachycardia but prostrate-and-unable-to-rest tachycardia.

    And yes I am in/recovering from PEM. (I walked when I should have taken a taxi.) I have spent a couple of weeks horizontal or nearly so, and have just started to get a bit more vertical, so my idea of normal is probably last month's normal or next month's normal not PEM normal.

    It just seemed so strange to be upright with a hr of 53 or 57 (the two readings).
     
  7. OkRadLakPok

    OkRadLakPok Senior Member

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    POTS is very interesting to me because I think I have it. Resting is like 40 something. Last EKG showed that but also, I am an athlete when i can, so it is maybe that.
    However, I also had tachycardia and also have low blood pressure and pass out and have Vaso vagal so bad I have seizured in blood draws.
    POTS is so strange. I really wish the Drs had a better handle on that, one lots of things about which they are all fuzzy!
     
  8. taniaaust1

    taniaaust1 Senior Member

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    its not uncommon at all for those who have ME to have resting tachycardia eg over 100.
     
  9. ryan31337

    ryan31337 Senior Member

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    Sure, but when episodic in combination with a normal state of bradycardia I'd probably want to be checked for stuff like SVT rather than assume its just ME OI.
     
  10. taniaaust1

    taniaaust1 Senior Member

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    nods of cause, i wasnt saying that people shouldnt have this checked.
     
  11. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Maybe your blood pressure spikes when you stand? High blood pressure and POTS are two ways to get the circulation going around, if the circulation is somehow compromised by factor X.
     
  12. Richard7

    Richard7 Senior Member

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    @ryan31337 SVT, new to me but I do not think so. The blood pressure metre has a symbol that is meant to light up when there is an abnormal rhythm.

    But yeah, If I had a doctor who was really good on this stuff OI and CFS I would ask, but ... well I guess we all know that story.

    In normal life there are all sorts of examples where we use the obvious set of muscles, say our dominant hands to stir a pot, and then have to switch to the non dominant hand to give the dominant one a rest. My body is probably just doing whatever it can to stand up.

    And the pressure is variable so (from what I was reading on Myhill's site) it is not atherosclerotic as atherosclerotic high blood pressure is high and consistent with a high pulse pressure. But that does not mean its OK or that the things that cause it are OK. Indeed Myhill is probably worth quoting:

    http://drmyhill.co.uk/wiki/High_blood_pressure_-_the_causes_of,_and_treatment

    I have been thinking about the workwell foundation view on physical activity. Or the parts I have absorbed at any rate. That one should stay below 100bpm, and that if it goes over 100bpm one should lie down and rest till your heart rate gets back to your resting rate.

    I do not have the kind of heart rate monitor they recommend, but have been trying to pay closer attention so I get an idea of what that means in practice. It has convinced me to wash dishes and prepare some food sitting on a stool.

    From that point of view the change in blood pressure is a nuisance as it probably makes heart rate a less useful indicator of exertion.

    Its strange but even though I really do not get all of the science behind it, their finding that the anaerobic threshold falls during PEM seems significant. I have that real sense of energy hunger in PEM. That desire to have lots of coffee or carbs or something anything that might put some energy in the tank. And it is a silly futile desire because I try creatine and it does not work; I try b complex, coffee, alcar no change; I have done the massive carb fix in the past to no effect.

    If PEM is not fatigue after doing too much but the result of some part of the aerobic system being used to failure, indeed used to a level of damage that can not be repaired for days or weeks or months.

    I guess the thing is it explains why PEM should not be seen as a normal part of CFS but something to be avoided.

    I have spent years on that rollercoaster they describe. Putting all of my energy, when I have it, into cooking or cleaning or some social thing or something, then crashing for a day or week or months. Often my thought was I just had to grab whatever moment of capacity I had and use it.

    And for a long time that energy was being put into walking for the purpose of exercise. Putting all my effort into making myself ill while under the impression that it would make things better. I guess it is a new class of self harm.

    I think I am getting the idea of the name change to SEID though. @JaimeS can I change my answers on that anonymous survey.
     
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  13. ryan31337

    ryan31337 Senior Member

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    Hi @Richard7,

    Some good info there, thanks for sharing. I have highly variable hypertension exactly as you describe and have found that low dose beta blockers do take the edge off both the immediate BP swings (horizontal <-> vertical posture) as well as damping down the longer term peaks and troughs. It limits your capability but also potentially the long-term damage you describe too.

    Re the SVT thing, just meant it as an example, plenty of other possible explanations. Really what I was getting at is that it can become easy to assume xyz is a direct result of ME/CFS and dismiss it. I think its important to remain vigilant about other potentially unrelated issues, even a cardiologist that doesn't understand ME/CFS/OI should at least be able to exclude the basics and give you some peace of mind :)
     
    Last edited: Jul 3, 2016
  14. Richard7

    Richard7 Senior Member

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    @ryan31337 yeah I get that. And shall talk to my GP about it when I next see her.
     
  15. JaimeS

    JaimeS Senior Member

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    That's when I do the high dose CoQ-10 and also Emergen-C. Seems to 'fill up the tank' or at least plug up the hole at the bottom of the tank...

    Nail, head.

    Sorry -- part of making it anonymous means you won't be able to 'find' it again. However, a change in answer would make very little difference now due to the number of responses we've received, so you don't have to worry you've skewed things.

    Personally, I still like 'ME'. Myalgia for muscle issues, encephalomyelitis for the NS issues. PEM is the cardinal symptom but it's not the only one. I like the way ME identifies the illness as a neuromuscular one.

    Not saying everyone else has to have the same view, however! :)

    -J
     
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  16. Richard7

    Richard7 Senior Member

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    @JaimeS I must say that I enjoy hitting the nail on the head more than hitting my head on the wall.

    I think I ticked ME and ME/CFS. I was quite happy with CFS until a few months ago when I heard a Leonard Jason talk on youtube in which he explained that research he had done ages ago had shown that the title CFS coloured doctors' perceptions of patients and their symptoms.

    Which would seem to make the term dangerous.

    But it is only now, that I am thinking about the workwell foundation approach to managing ME/CFS that I can imagine that someone could perhaps have this illness, manage their energy well and not have chronic fatigue and what does one call CFS without fatigue?

    I imagine that SEID might be a better title for a life lived within that energy envelope. Well the limits of that life, the mechanism of the trap that curtails it.

    It certainly seemed to make sense from the largely horizontal perspective of the last few weeks.

    But it may be only from this perspective. I really think that Jason's approach makes sense and that whichever term convinces funding bodies, scientists and doctors to take it seriously is probably the right one.
     
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  17. JaimeS

    JaimeS Senior Member

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    Can you provide a citation? THat would be awesome. :D

    It's a good question theoretically. Practically, I'm not sure I know anyone with CF, CFS, ME/CFS, CFS/ME, or ME who cannot be said to experience fatigue as a symptom. I think it's required in every criteria.

    Right on.
     
  18. JaimeS

    JaimeS Senior Member

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  19. Valentijn

    Valentijn Senior Member

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  20. Richard7

    Richard7 Senior Member

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