1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The Pathway to Prevention (P2P) for ME/CFS: A Dangerous Process
Gabby Klein gives an overview of the P2P process, shedding light on the pitfalls with advice as to what we can do in protest ...
Discuss the article on the Forums.

Autonomic or ...weird symptom

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Quirky, Mar 14, 2013.

  1. Quirky

    Quirky

    Messages:
    90
    Likes:
    0
    Very hard to explain. Its a wave of what feels as dysfunctional ion channels or cellular, feels horrible, in the whole body, unable to stand, turn pale, unable to do anythying whilst it lasts. Its not as if you are fainting, uncomfortable sensation in the body, not muscle, not bones, not organs...can't quite explain. I suffer no panic attacks, no depression and take no meds. I have not had this symptom for a few years, then, suddenly, it reappeared, along with other symptoms.

    Many thanks for your input.:thumbsup:
  2. lnester7

    lnester7 Seven

    Messages:
    1,226
    Likes:
    1,101
    USA
    I saw your chat and I see much of you in me.I thought I was the only one that had to be careful not to pass out during a bowel movement:aghhh: .
    I used to go paralyzed a lot due to weakness and feeling like you describe, I am on midodrine and florinef for OI. It has taken all that away (except when I skip to many times the meds). You should look into OI, EVEN when the TTT is negative.
  3. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,845
    Likes:
    925
    US
    How long does a wave last for you? How often do you have them? I have some kind of wave that I hate which I think matches your description. Mine are very brief.
  4. lnester7

    lnester7 Seven

    Messages:
    1,226
    Likes:
    1,101
    USA
    Ahh I remember now the Doctor called it presyncope.
    ahimsa likes this.
  5. Quirky

    Quirky

    Messages:
    90
    Likes:
    0
    Thanks, I will look up OI and EVEN. I didn't do the TTT, too ill for this. Do you at times feel as if you are passing out, hot and sweaty, and weak?
  6. Quirky

    Quirky

    Messages:
    90
    Likes:
    0
    Hi -- waves come and go, does not last long, but the uncomfortable feeling of feeling unwell can last sometimes an hour. The waves comes on for a few minutes.
  7. lnester7

    lnester7 Seven

    Messages:
    1,226
    Likes:
    1,101
    USA
    Yes the about to pass out is presyncope. I do not get hot nor sweaty. I get cold like shivering and I NEVER sweat. I have sudomotor issues, but w OI some people don't sweat some sweat too much.
    ahimsa likes this.
  8. Quirky

    Quirky

    Messages:
    90
    Likes:
    0
    Pre syncope simply means before fainting...What is OI???
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,915
    Likes:
    5,772
    Albuquerque
    Quirky

    OI is orthostatic intolerance. You do not tolerate standing.

    Sushi
  10. Marco

    Marco Old blackguard

    Messages:
    1,291
    Likes:
    974
    Near Cognac, France
  11. Shell

    Shell Senior Member

    Messages:
    477
    Likes:
    613
    England
    I get this with standing up. Not all the time but it comes in waves. My GP says is pre-syncope and I know it's related to OI. It is utterly yuk and completely random for me. Sometimes I can be standing and only get tacky (120+) and sometimes this blacking out and lose of hearing happens. Not fainted yet thankfully.
    ahimsa likes this.
  12. SOC

    SOC Moderator and Senior Member

    Messages:
    5,297
    Likes:
    6,283
    USA
    I used to get like that. For me, it appears to be related to exceeding my anaerobic threshold (which I can do just by standing too long) and low blood volume. It's mostly the low blood volume, I think.

    Fluid loading (3-4 litres of electrolyte drink daily) and fludrocortisone (Florinef) have helped me quite a bit. And pacing, of course. :)

    Have you seen this article here at PR? http://phoenixrising.me/treating-cfs-chronic-fatigue-syndrome-me/problems-standing
    ahimsa likes this.

See more popular forum discussions.

Share This Page