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In the ER on Wednesday

Discussion in 'General ME/CFS Discussion' started by vision blue, Nov 17, 2017.

  1. vision blue

    vision blue

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    Just when I started a couple of new threads here (beta alanine and taurine) and got some PMs too - it's all been interrupted. Mostly just wanting to let people know who happen to see this that I will resume as quickly as I can and thanks.

    Quick version is since sunday, having amother one of these "autonomic attacks" which feels like sympthetic nervous system highly active and wont shut off. dragged myself to an urelated doctor for a scheduled appt on tuesday, and they didn't like that my bp was 190/100; they wanted me to go to the ER, but I did not. That night though it got worse after taking some meclizine and by next morning at 5 am i thought i might be stroking out or something so had to call 911. sigh.

    but i got triaged wrong. I said my heart was pounding and figured i'd give details to the doc, which i did. but by then it was too late. from the moment you open your mouth to the paramedics, you can pigeon holed and so i was put in the "chest pain" pigeon hole and run thru the mindless one size fits none protocol before i ever even got to see the doc.

    my pressure was still at 190/100. he offered to bring it down by iv, but it wasn't clear what would happen when i got home. they oral meds they suggested for home would have killed me since had potassium in it, which makes me sick. so i had to decline. I thought they should have admitted me, as much as I don't like hospitals. So instead, having judged that I did not have a heart attack, they released me, saying to see both endocrninologist and cardiologist in the next 2 days; yeah right. we know how new patient appts go.

    so been non stop on the phone trying to arrange things. for once, people have been helpful since they all agree this is not a state I should have to stay in for long as its damaging.

    too much to say, but that's enuf since have no idea how this relates to the cfs, except that 3-4 years ago something started changing when i got these attacks. even between attacks my synmpatehetic nervous system never seems to fully close off. I was reading some threads by people here with neural autoantibodies and a simliar sounding case that also started with a herpes virus.

    lesson learned: if i have to go to the ER ever again, do whatever it takes to get put in the pigeon hole i think will be most productive for me, even if it means not mentioning symptoms at first that might incorrectly put me in a more popular but less useful bin. So i should have said "I suspect andrenergic storm", not "my heart is pounding" (I happen to hear my heart when my bp goes up but everyone thinks of bp as "silent' so they misterpreted my statement). Still can't beleive they let me go in that state.
     
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  2. Gingergrrl

    Gingergrrl Senior Member

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    I do this constantly, and feel horrible when I am slow to reply to PM's, but we are all sick and can only do the best that we can and people here understand!

    Yes, I have been through this, especially back in 2013 & 2014, when I went to the ER 3-4x, still believing that they could help me. All of my vitals were taken when I was lying flat so no matter what I said, they missed the POTS episodes that occurred when I was standing. If your EKG and chest x-ray are "normal" the ER will send you on your way.

    Did the ER doc suggest anything that you can do to lower it?

    What happens when you take Potassium? I take 20 MEQ of Klor Con (Potassium) each day b/c my Potassium is chronically low on blood tests. It's a coated, extended release tablet and works well for me so I was curious.
     
  3. vision blue

    vision blue

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    For some reason, whenever I take potassium, it makes my heart race. I discovered this at age 11 when i tasted just the tiniest amount of my mothers KCL "salt substitute". and bannanas do the same thing. So perhaps not the best test of it, but under the circumstances haven't wanted to risk. I also have such a weak esophagous, that lots of things give me dyspagia and reflux and tears up my esophogaus for a while, and potassium tough on that too. Have trouble with pills, and extened release tablets usually have MMA, which I have a documented bonafide allergy to.

    by the way though, my potassium did turn up as low at 3.1. Howerver, its only ever been low at that emergency room and there's a little footnote saying that potassium was run on plasma which can be up to 0.4 somethings less than when run on serum. I alwasy test in the low end of normal (with serum), so I suspect my real level was 3.6, which is just as the low end of normal.

    how low did your potassium get before you ever started taking the pills?
     
  4. Gingergrrl

    Gingergrrl Senior Member

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    I would not want to risk it either and you know your body better than anyone else.

    I honestly do not remember b/c I have been taking the Potassium supplement since the end of 2014 (and I do not have most of my medical records prior to mid 2015 to check). I just remember that it was very low when I was in the hospital in 2014 and my Cardio felt that I needed to take the supplement. I have no problems with it except that it is a very large pill to swallow and cannot be cut.
     
  5. vision blue

    vision blue

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    forgot to respond to the earlier part of your message. you made me laugh on the EKG and chest xray. You forgot troponin...I refused the chest xray and negotioated about the amount of blood for the troponin. I may have POTS , most likely hyperandrenergic, but at the moment am leaning towards something like psuedophechromocytoma which has some misunderstandings in there. Both are autonomic dysfunctions; mine has a positional component, but getting attacks during sleep too, so clearly not normal when supine. But i also can get my hr to be not over 100 just by lying down, and so of course when they did EKG, it was only 96 bmp, which of course they attribute to "stress" of being in ER (not so, I was quite relaxed, was glad not to be alone hopoing the alarming symptoms would just go away), and of course the non specific CT and T wave abnormalities ignored for same reason. When i was in the ER before 3 or 4 years ago for same thing, my heart would settle down when lying down, and then when I got up to use the bathroom, it quickly soared to 144. They then quickly brought back the EKG and rushed to put leads on me, telling me all the whilte to lie down again. AT which point, since I was lying down it went back to under 100...

    on the potassium, am curious because of my falsely low result i mention above.
     
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  6. vision blue

    vision blue

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    ps my autonomic nervous system still pitching a fit. Keeps varying; especially bad in early mornings and evenings. The cold air seemed to normalize it; not sure how long will last (could still be a coincidence)
     
  7. Gingergrrl

    Gingergrrl Senior Member

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    Yes, sorry I forgot the troponin (and the d-dimer) LOL. Hope you figure this out and are feeling better soon!
     

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