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Heart rate, OI and tiredness

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Madeline, Jan 25, 2016.

  1. Madeline

    Madeline

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    Hello everyone,

    I was wondering if anyone had any light to shed on the question of OI and POTS in relation to M.E.

    I was diagnosed with M.E almost 20 yrs ago, in my teens. I have struggled with it through bad and better phases ever since. Only recently did I begin to wear a heart monitor.

    Almost immediately, I noticed a correlation between my exhausted periods and my heart rate rising. It is fast upon sitting, and more so upon standing, moving from 80 at seated to 120 ish upon standing, and reaching 130 or so just standing about the house after 15 mins or so.

    I started to realise that my seeking a place to sit ,or stopping activities when I felt tired, coincided with a rise in my heart rate. On days when I am already feeling tired, my heart rate is higher before doing anything.

    I asked my doctor about this - she said there was a difference in sitting/standing, and that it was high, but not dramatic.

    I wondered what anyone else's perception of this might be! Does this sound like a familiar profile to any of you? Would it suggest that I ought to raise the question of OI with my GP again?
     
    Mel9 likes this.
  2. Sidereal

    Sidereal Senior Member

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    Hate to contradict the almighty MD but yes, although there is a difference in healthy people too, a difference of >30 beats between supine and standing is generally considered abnormal aka POTS.
     
    Thomas, jimells, Mel9 and 3 others like this.
  3. Madeline

    Madeline

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    @Sidereal, thank you for your reply. I remembered reading about POTS, OI and M.E for the first time a few years ago. Is it something that many people with M.E are now being diagnosed with, or having noted as a feature of their illness?
     
  4. Hope78

    Hope78

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    Hi!
    I know this. The more exhausted I am, the faster the heart beates and the bigger is the difference between lying/sitting/standing!
    When I am exhausted and try to ride the bicycle my pulse goes up to about 220 after less than 2 minutes. When I am not so exhausted my pulse is not higher than 110.
    I do not ride the bicycle when I feel so bad. But when I was in a psychosomatic clinic last year they said I was depressive and had to do sports :devil:. They did not believe me I was not able most of the time. I bought a heart rate monitor and showed the racing heart beat to my doctor. Immedeately they canceled every sport activity :D.
     
    Noah GB, ahimsa, jimells and 8 others like this.
  5. Sidereal

    Sidereal Senior Member

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    OI is a common symptom in ME, yes. There are different types of OI. POTS is one of them. Another common type of OI is NMH - neurally mediated hypotension.
     
  6. Snowdrop

    Snowdrop Rebel without a biscuit

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    purrsian, ahmo and ahimsa like this.
  7. Mark

    Mark Former CEO

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  8. Sasha

    Sasha Fine, thank you

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    Hi Madeline - I've probably had NMH (delayed OI) for decades and realised this with a "poor man's tilt test" (which you'll read about on the forums about five years ago. It's taken me that long to get a diagnosis and I've been turned away by several cardiologists during the course of that. Unfortunately, it can be very hard to get a diagnosis within the NHS (as you're finding), but with POTS, I think it will be easier.

    Try to find a syncope unit and get referred there, rather than to any old cardiologist. There are several such units in the UK, at big hospitals. Google on "syncope unit nhs" to start with. If you don't see one in your area, phone one of the units and ask them which is your nearest one.

    Good luck!
     
    Jennifer J, jimells, PatJ and 3 others like this.
  9. jimells

    jimells Senior Member

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    And just to make things even more complicated, there are several "flavors" of POTS:

    http://www.ncbi.nlm.nih.gov/pubmed/21947988
     
    Chrisb likes this.
  10. ryan31337

    ryan31337 Senior Member

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    Hi Madeline,

    It's a lot to digest but do look into POTS and OI further. I have a similar history and found myself here looking for answers after recent deterioration following years of high functioning. I saw POTS/OI info here alongside all the other afflictions but didn't give it enough attention until an ME specialist highlighted it during an examination, suddenly I realised it all fit very well. It took that knowledge to really pinpoint that the triggers and symptoms now are subtly different to my previous ME complaints from years ago - though I suspect POTS/OI was still present alongside the 'main event' back then too.

    Don't expect your GP to have a clue. I was lucky that I saw a Locum that had a previous POTS patient helped back to good health after a cardiology referral and Ivabradine, and guess what, they had an ME diagnosis too. Unfortunately the cardiologist I've recently been referred to considers POTS to be 'controversial'...ugh...

    Are you from the UK? I have some recommendations for good POTS specialists if you want to get in touch.

    Ryan
     
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  11. Madeline

    Madeline

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    @Ryan, thank you so much for that reply. It's very interesting to hear someone else's story being so similar. It is a lot to take in, isn't it?

    I am from the UK, from the South East. My GP told me she would like to test me for things that she had heard of which could cause these symptoms, and so I am having a battery of blood tests - again! I've also been referred to an M.E specialist, at my instigation. I've been to a CFS clinic years ago, but I've asked to go back to see a specialist, particularly in the light of newfound heart rate info / concerns. I don't know how long that will take, of course.

    I'd be willing to go outside the NHS if I thought I was going to see a doctor who could really help me. If you have any recommendations, that would be nice of you. I'm new here, so perhaps you know how to send a private message?

    Do you mind my asking, has addressing your POTS symptoms helped your health overall - do you feel much better? Do you think you had the wrong diagnosis first, or that the one has caused or co-exists with the other?

    Looking on here, the idea that 'exhaustion' might have a tangible, physical component that is explainable if not able to be cured - it is very interesting after many years of illness!
     
  12. ryan31337

    ryan31337 Senior Member

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    Hi Madeline,

    Sure - I'll drop you a PM. I'm also from the South East, there are a few of us on here. We've had mixed results dealing with the local NHS service, I was lucky enough to have a good experience but others haven't faired so well at all.

    I'm still jumping through the hoops with my current POTS-denying cardiologist and haven't been able to try POTS specific treatments as yet. Awareness of POTS has definitely helped me though, from the point of view of understanding/avoiding triggers and not exacerbating bad days into bad weeks. Its helped me dial-in pacing that bit better, which is great.

    I have little doubt that my diagnosis has been and remains ME/CFS as per the more robust criteria, I've just been lucky enough in the past to recover to a relatively mild state of the illness whereby I still have symptoms from all of the categories but they are much less pronounced and more manageable. Things have dragged me down and caused significant relapses over the years, trying to work full-time, onset of celiacs, return of POTS etc. I don't think anybody could argue that these things don't often co-exist, causation as far as I'm aware is likely but not proven yet.

    Something that has helped me be taken more seriously by the docs is high blood pressure associated with the heart rate issues - have you taken any BP readings recently?
     
  13. Thomas

    Thomas Senior Member

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    POTS has been increasingly getting worse over the years for me. Honestly, when I was well I still felt tachycardic at times because I was always on the go. Probably had a wonky ANS then as well.

    But now, I'm hitting heart rates of 175 bpm's from just a cup of coffee and a little cognitive effort like speaking to my disability lawyer or even just with common everyday stressors. Seems especially more common on those cloudy grey and wet days. Anyone else hitting these kinds of numbers? A year and half ago when I did the 2 day exercise test i was nowhere near these digits.

    As for treatment well -- lying down, salt, a beta blocker here and there but these aren't the answer, because even when POTS is better I still have considerable disability. This to me means it's a symptom or complication of my ME and not the real driver.
     

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