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Feel on the verge of death

Discussion in 'General ME/CFS Discussion' started by Xhale19991, Feb 19, 2014.

  1. Snowdrop

    Snowdrop Senior Member

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    @Xhale19991

    Hi Xhale

    I too am so sorry to here that you are feelings so badly and I hope you hang in there and that you find some relief.

    I was wondering, have you been to a Dr for any blood work and MRI/cat scans etc to eliminate possible reasons other than ME for your symptoms? It's good you have an appointment with OMI, meanwhile since some of your issues seem to be related to POTS perhaps getting some electrolytes into you would be helpful. Avoid the ones with lots of sugar and sodium. And of course there are threads here for which electrolyte mixes are good. Like this one:

    http://forums.phoenixrising.me/index.php?threads/making-your-own-electrolyte-mix.19594/
    take care.
    SD
    justy, Xhale19991 and SOC like this.
  2. Allyson

    Allyson Senior Member

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    lots of POTsies complain of this too though xks,....it is not known if it is a cause or effect of POTS

    no-one is really looking into it yet that I know of


    ALly
  3. Allyson

    Allyson Senior Member

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    Hi Minkey girl not sure what you mean here sorry - do you mean you don't have POTS?
    Have you been properly tested it if so ?
    It IS a common ME symptom but few get tested for it
    You do not know until you have ha a specific test for it
    It is one of the few concrete tests we can have that provide some medical evidence for the illness
    SO it is a good one to have done too
    cheers

    ALly
  4. minkeygirl

    minkeygirl Senior Member

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    @Allyson. I don't have POTS, I have been tested. Yes I know it is common in ME but not everyone has it. Once again, sometimes you just feel like shit.
  5. Allyson

    Allyson Senior Member

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    I stll don't understand what your comment referred to

    I was trying to suggest it Xhale as a way of feeling better t times

    many people say they don't have POTS but have never had a tilt table test or QSART test

    so I wanted to clarify that for X hale as treating POTS can help a lot

    one woman said she did not have POTS as "her cardiologist did not think she had it" !!!

    someone else said she" did not have the markers for it " - which does not even make sense so there is a lot of ignorance out there
    many cardiologists still do not know what it is
    and most doctors do not know about it either,



    ALly
  6. Radio

    Radio *****

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    I would look into finding a good Functional Medicine Doctor, ME doctors could be hard to locate. If you do end up going to the emergency room. Do not ask for any drugs...Drugs are not tested or regulated for mitochondrial toxicity. I would recommend asking for a saline IV drip (for dehydration). Intravenous therapy can increased blood volume and pull you out of a flare.

    Intravenous therapy
    http://en.wikipedia.org/wiki/Intravenous_therapy
    Allyson likes this.
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    On the other hand... though many of us have had bad experiences with ERs, I have had good ones and they gave appropriate (and needed) emergency meds as well as a saline IV. I guess it is Russian roulette with ERs.

    Sushi
  8. Allyson

    Allyson Senior Member

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    would love to try it
    I hear there are special IV clinics in the US where you get plain IV one week or fortnight and vtitamin iv the next which works well for some POTsies

    meantime I rehydrate with coconut water, lie flat, stay very cool ( cold)) and wear light compression clothing an that usualy helps some.

    \Ally
    rosie26 and Radio like this.
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Allyson, most any IV clinic in the States will give IV saline with a doctor's orders. My autonomic doc, Dr. Randy Thompson (the one in the Dysautonomia video Changes) used to leave standing orders for saline IVs for us at the local hospital IV clinic.

    Sushi
    SOC and Allyson like this.
  10. Xhale19991

    Xhale19991

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    What about the IV helps you?

    Can't you just drink a bunch of water or coconut water and receive the same effect?
    Allyson likes this.
  11. Allyson

    Allyson Senior Member

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    yes It helps me Xhale - but ineed the compression clothing and to and to lie flat as well

    staying cool is also important - so cold coconut water is best I Find

    ally
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    IV saline is works better to increase blood volume, so most immediately feel better. But yes, all this is a temporary fix--it doesn't solve the problem!

    Sushi
    Allyson likes this.
  13. Sea

    Sea Senior Member

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    For those whose bodies 'decide' to keep our blood volume low (hypovolemia, quite common in ME/CFS) drinking more with electrolytes may help a little, a lot or not at all. It all depends on whether your body is effective at using oral hydration to raise blood volume. Many just pee it out again too quickly.

    The IV saline will raise blood volume for a longer period, though again individual responses vary and the benefit will range from a day up to a week.
    SOC and Allyson like this.
  14. Allyson

    Allyson Senior Member

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    yes I think and IV infusion would work quicker and for bit longer - but I would have to get toe a clinic or hospital and that would take extra effort

    If I could get one done at hoe I think that would help...I hear they help some and not others though....

    A
  15. Allyson

    Allyson Senior Member

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    this sounds like me Sea - Polyura and nocturia...and polydipsia

    And my blood volume DID test low indeed

    IM vitamin B12 shots stop this - a day after I have one I stop running to the loo constantly and it lasts about 7-9 days

    then I sleep better too

    Ally

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