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POTS Associated with Significant Symptoms & Impairment -- BMJ article & pop press response

Discussion in 'Latest ME/CFS Research' started by Firestormm, Jun 16, 2014.

  1. ukxmrv

    ukxmrv Senior Member

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    http://forums.phoenixrising.me/inde...t-table-test-pmttt-for-oi-pots-and-nmh.12291/

    It was a poor mans TTT that finally got someone to take it seriously and order the full TTT for me

    If you can get them to take your BP and HR resting. Ideally lying flat on an examining table, then stand you up and take the same every 3 minutes for 15-30 minutes (if you can last that long). The nurse should be able to do it at your GP's clinic.
     
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  2. golden

    golden Senior Member

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    I am glad you finally got it diagnosed and acknowledged.

    Thankyou for the swift reply, much appreciated. I am trying the Pharmacist who I have been told will do it - :)
     
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  3. xchocoholic

    xchocoholic Senior Member

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    Hugs. I'm sorry to hear that. Sorry to hear that your ME is being trivialized. Tc .. x
     
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  4. golden

    golden Senior Member

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  5. ukxmrv

    ukxmrv Senior Member

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    xchocoholic likes this.
  6. xchocoholic

    xchocoholic Senior Member

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    How bizarre. One of my favorite movies nowadays is "Pride and Prejudice".
    I'll be looking at that in a whole new light. Tx .. tc .. x
     
    Last edited: Jun 23, 2014
  7. ahimsa

    ahimsa Senior Member

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    Sadly, I think this situation (waiting years without any answers) is common. I first got sick in Jan 1990. I got referred to a cardiologist for my first TTT (tilt table test) in 1995.

    My primary problem at that time was NMH (Neurally Mediated Hypotension, sudden drop in blood pressure) not POTS. But now, after 20+ years, I seem to have both POTS and NMH.

    On my first tilt table test there was some increase in my heart rate but not enough to be classified as POTS. However my sudden and severe drop in BP was obvious. I suddenly passed out at about the 20 minute mark. For what it's worth, I've never fainted in "real life." So just because the patient does not normally faint does not mean it won't happen on the TTT.

    As Sushi and others have pointed out, a good doctor can read a TTT and get enough information before the patient faints. No need to put the patient through all that stress of fainting.

    Thank goodness I did not have one of those borderline TTTs where only a specialist in autonomic issues could figure it out. My cardiologist is fine but this is not his area of expertise.

    Okay, enough of this. I think this went a little off topic -- sorry!
     
  8. Allyson

    Allyson *****

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    yes anyone who faints should be checked for POTS _ but 90 percent or more of doctors have never heard of POTS

    ALLY
     
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  9. Gingergrrl

    Gingergrrl Community Support Volunteer

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    This is so infuriating to me. Is POTS not taught in American medical schools? I have never fainted in my life but there are times when I stand up and my HR can jump almost 100 points and I have some version of POTS even if not the most typical presentation. It seems like this should be a standard thing that is taught (even if it is completely separate from ME/CFS.)
     
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  10. Allyson

    Allyson *****

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    yes agree - but they have not known about that long and it takes time for teaching to catch on

    that is why I advocate so much to patients Gigergirrl- we need to spread the word ourselves
    and now with the internet we have a golden opportunity to do so
    there re about 20 000 people on POTS groups on facebook already - many with pseudonyms

    My posts are being moderated so we may not get to have this discussion in real me alas as I would love to chat!
    Ally
     
  11. Allyson

    Allyson *****

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    and NO POTSs still not taught in med schools - and even many cardiologists do not know the first thing a bout it

    Ally
     
  12. alex3619

    alex3619 Senior Member

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    In my case it was a more extreme reaction. I also went from nothing wrong to unconscious and needing resuscitation in under ten seconds. It can be fast.
     
  13. Allyson

    Allyson *****

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    wow that is terrible Alex - did thy give yu IV fluids afterwards to revive you?
    does your pulse rise by 30 bpm when you stand up anyway?

    Ally
     
  14. Allyson

    Allyson *****

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    also I have found others on fb with your large hands /feet issue and POTS Alex -
    been meaning tell you
    ALly
     
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  15. alex3619

    alex3619 Senior Member

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    I don't have POTS. If anything I get POBS (which I made up, but it fits): Postural Orthostatic Bradycardia Syndrome. That is why its so fast. As soon as my bp falls, so does my heart rate, and this is a positive feedback loop.

    I do not know if POTS is that important, depending on cause. OI is the more important thing, whether tachycardic, bradycardic, or normocardic (but I am not sure normocardic is a word). Tachycardia is the reaction to the underlying problem, and probably separate from what is driving the OI.
     
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  16. Firestormm

    Firestormm Guest

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  17. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @alex3619 I love all your new acronyms POBS and normocardic LOL. In my case it is always tachycardia as if my HR is trying to catch up with the demands of my body when I stand up but it can't quite do it.
     
  18. Allyson

    Allyson *****

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    Yes my doc says the OI is the problem too Alex - and that POTS is a by -product of the OI

    I guess POTS is easier to say than OI and so gets more airtime ?

    CHeers,

    Ally
     
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  19. ahimsa

    ahimsa Senior Member

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    Yes, there are different names/categories depending on which doctor you ask. The phrase that makes sense to me is Chronic Orthostatic Intolerance as described in a Medscape article by Dr. Julian Stewart:

    http://emedicine.medscape.com/article/902155-overview#aw2aab6b3

    Here's an extract from that article:
     
  20. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @ahimsa, wow, that is really interesting and I have many of those symptoms although I do not have altered vision, sweating and a few others.
     

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