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Just want to share with you wich helps my O.I.

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by funkyqueen, May 8, 2015.

  1. funkyqueen

    funkyqueen Senior Member

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    South of France
    It's been proven that we have concerns (big problems) with orthostatic intolerance. The low blood volume, poor cardiovascular function and CNS are in causes ...

    I wanted to share with you how receiving infusions of NaCl 0.9% help me by adding me blood volume ... And improves my O.I. (Orthostatic Intolerance) :)

    The first infusion, it was to give me some magnesium by veins.
    I noticed that the 9 days that followed this first infusion, my very severe orthostatic intolerance (while bedridden 23h-24h / 24h) had improved! I immediately understood that I was helped me, not by magnesium, but by adding a liter of liquid in my venous circuit.

    It was seven months ago.
    Since I have received a lot of NaCl 0.9% infusions (lightly salted sterile water). This is not so much salt that helps (although, yes, a little anyway), but especially the fact of adding blood volume by VEIN, that keep liquids in the body much more than drinking water ... which will immediatly end on the toilet, you see what I mean ;-)

    Since I control the dose, infusion time, how much I need, etc.
    I can only really advise you, that it will add you blood volume, helping your heart, reduces tachycardia, better irrigate your brain (cognitive improvement, not very much for me, as I am severe, but improvement nonetheless) ... it may even prevent Transcient Ischemic Accident, like some severe/very severe ME sufferers like me can have
    ...

    Taking some desmopressin helps too, helping to conserve liquids more longer in body ( if test said you need it - if you have very poor /undectable ADH) - but be carefull, Desmopressin contains vasoconstrictors, which can be very dangerous for us)

    I recommend infusion of 1 liter per week, done in 3 / 4h for moderate achieved and 2 to 5 infusions weekly for severe, very severe.

    Thoughts <3
     
    Last edited: May 8, 2015
    RL_sparky, ahimsa, SDSue and 7 others like this.
  2. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Cool! Im going to ask my doc for this, I`ll get back to you with my results:)
     
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  3. lnester7

    lnester7 Seven

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    This definitely works. If you see the last videos on OI they accept that, The issue is that it is not un-sustainable since veins can collapse.
     
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  4. funkyqueen

    funkyqueen Senior Member

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    True story, Inester7. Because of that , my nurses and I have to choose different veins each time ;-) ( it's very difficult , as my veins are veryyyyyyyyy small ( as small and thin as my POTS / O.I. is big ;-) )

    Marky90, if you really have hypovolemia generated by ME, then it will work for you too, and you 'll bring me some good news . If this can helped even one person, then I'm glad to have shared it :) It helps a lot, you'll see! Let me know! :)
     
  5. funkyqueen

    funkyqueen Senior Member

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    Important detail: I mentioned that i have taking desmopressin (if you tested ADH, and this one was very low / undetectable, you should try it), could help to ensure that the body keeps liquids,
    I 'personally had to stop this hormone substitution because as' severe ME, my cardiovascular is reached, and it was not compatible with taking Desmopressin.
    I will try to try to keep a little better now liquid (I drink 3 sips, 10 seconds to 7 minutes later: pee), I'll try a kidney hormone support : florinef.
    I'll read about it, I guess some of us talk about it in PR ;-)
     

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