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Dysautonomia Int'l - New Evidence of Autoimmunity in POTS

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by ahimsa, Feb 27, 2014.

  1. ahimsa

    ahimsa Senior Member

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    [note - @Allyson posted this link in another thread but I thought it was worth repeating here in the POTS section]

    Dysautonomia International blog entry about recent POTS research:

    http://www.dysautonomiainternational.org/blog/wordpress/new-evidence-of-autoimmunity-in-pots/

    From the first paragraph:
    Later on in the article the Dr. David Kem does a nice job of explaining the issue. And he mentions how it might eventually lead better testing as well as treatment. Obviously, more testing is needed first.

    If I understand things correctly (and that's a big "IF" :rolleyes:), it looks like this research into adrenergic autoantibodies applies to both POTS *and* NMH (and/or Chronic Orthostatic Intolerance --- so many names for all the various orthostatic issues!). The article talks about how these adrenergic autoantibodies cause changes to heart rate and the constriction/dilation of blood vessels.

    In short, it might be interesting reading even for those without a specific POTS diagnosis.
     
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  2. Allyson

    Allyson *****

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    thanks Ahimsa,

    and it it worth pointing out for anyone without a POTS diagnosis that usually you do not KNOW if you do have OI or POTS or not ......unless you have specific testing for it - -so that is a good test to have for all of us ...

    If nothing else it is one bit of concrete medical evidence showing something medically wrong to allay scepticism.


    Ally
     
    Last edited: Feb 27, 2014
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  3. Mya Symons

    Mya Symons Mya Symons

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    Thanks Ahimsa. It would be great if someone would actually take all of us and test us for these antibodies. I would also like to be tested for anti-serotonin antibodies and anti-phospholipid antibodies.

    This is kind of off topic, but need to know-Does anyone know just how long it would take for a person with POTS pulse to get normal when they lay down. My blood pressure is normal but my pulse is always high. My doctor finally started to pay attention to what happens when I sit up and lay down. I also have the flu today. My pulse did not go down when I layed down, but he did not wait very long to check it. I am wondering what the standard amount of time to wait would be?
     
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  4. Sparrow

    Sparrow Senior Member

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    I'm not sure what the "standard" time is. If you search for the Poor Man's Tilt Table Test, I think I recall them advising waiting some minutes between each reading to let things normalize again. My heart rate goes back down immediately when I lie down, but I could be anomalous.
     
  5. xchocoholic

    xchocoholic Senior Member

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    I can't renember how long it takes for my hr to begin to lower from my pots rate upon sitting or laying diwn, but i know it goes down an extra 15? pts AFTER I've been supine for appr 45 minutes.

    I was feeling the change a few years before I knew to look for pots. I askedmy docs why I felt healthy after I'd rested for an hour but they didn't know.

    My lungs relax next, then the pressure in my head disappears. Typically this takes a minimun of 60 minutes.

    Tc .. x
     
  6. Mya Symons

    Mya Symons Mya Symons

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    Thanks for the info. He only waited a few seconds. That did not seem right to me.
     
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  7. SOC

    SOC Senior Member

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    I read several different protocols a while back. They all said 10 minutes supine and unmoving to get a true resting HR before starting a test for POTS. FWIW, mine takes longer than 10 minutes to get completely stable, but 10 mins gets close.
     
  8. ahimsa

    ahimsa Senior Member

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    I think it depends not only on the individual person but also whether it's a good day or a bad day. I think around 10 minutes of lying down and resting is usually enough time, on a good day, to allow my heart rate to slow down.

    But a lot of the time, esp. on bad days, many symptoms (shortness of breath, nausea, pain, etc.) are still there even after my heart rate has slowed down and I've rested for quite a while. Or some symptoms might go while resting but then come back the minute I get up to start the dishes or laundry or something. It's very annoying to have to take so many rest breaks just to get something done. But I've learned that I get more done in the long run, with fewer "crashes", by resting A LOT.

    I guess I'm saying that there are two things going on. There's one time period for "resting enough to slow down the heart" (good enough for a baseline resting pulse measurement before testing for POTS). Then there's a much longer period for "resting enough to feel somewhat recharged" (so I can have enough energy to do small household tasks without crashing).

    Caveat - I actually have an NMH diagnosis, not POTS. However, my cardiologist and I have discussed POTS over the last couple years since my symptoms have been changing. Plus there's so much overlap in the terms POTS/NMH/COI (Chronic Orthostatic Intolerance).
     
  9. xchocoholic

    xchocoholic Senior Member

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    I have to wait for the effects of hypoperfusion to reverse in order to feel healthy again. Getting up too soon completely stops my body from reversing hypoperfusion. Sure I can function again but my brain, etc are still compromised.

    My hypoperfusion symptoms are easily identifiable now if I have my digestion under control via digestive enzymes and diet. Limitting foods that cause heart issues helped too. Those include coffee, chocolate and certain processed foods.

    I feel best if eat my own home baked goodies. I'm assuming some of the preservatives are nailing me. I can cheat and eat a Snickers bar every few days provided I take the appropriate digestive enzymes, lysine (herpes) and calcium (oxalates). Now that I said that it seems like a lot of work just to eat something with chocolate and nuts. ;)

    Tc .. x
     

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