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Paralyzed - PLEASE ADVICE

Blog entry posted by lnester7, Sep 6, 2013.

So, I came from work tired, I was with family in the table while having dinner. I was not symptomatic , just tired. So I put my head down in the table to rest. I don't remember if my husband moved me to the couch or if I did, All I know is I couldn't have made it to the bed upstairs. But when I am like that the first thing to go is the voice, so I couldn't ask to be put flat.

It felt like when you are sleep and you try to wake up and move but you cannot. I felt in terrible pain, I guess because of the position I was in. I tried to ask for help but I couldn't. I started crying out of desperation, apparently that did happened physically, but My husband thought I was having a bad nightmare, the last he could have imagined was that I was awake crying for help.

I cried out of desperation, the pain and craps were pretty horrible, I knew I needed to lay flat. No words would come out and I felt them leave the house to let me rest. I was pretty scared at that point, my lung started to spasm, like our legs and arms do when we are tired. I felt like a heavy elephant was in my chest. I kept going in and out of it like for 2 hours. Hubby came and woke me up and gave me electrolyte and after a bit I could go back to the bed. I was gone all night and felt "normal" when I wake up. I had my white tongue like when I get when I crash (I think is low potassium).

I have not been paralyzed in a while and I have been less symptomatic than I have ever been in 6 years. I don't understand!!!!

I need a plan of communication: lay me flat, I need pedyalite, I need to pee..... While you cannot communicate, And if I go to hospital??? Wat could they do for me? I am in such a loss here, please help me out!!!!
  1. Olena
    More looks as Guillain - Barre sindrom?
  2. lnester7
    Ever figure it out???
  3. Olena
    I have had similar attacks. It went through a half-hour. There were several such attacks ...
    lnester7 likes this.
  4. lnester7
    THey are doing an EEG but I am about sure is potassium related. I am working on the house and having a crash strategy in place. The first thing I am doing once I feel a crash coming is to PEE!!!!!
  5. MeSci
    I agree with madietodd. If there's any part of your body you can use at such times, it would be good to create a few simple codes for the things you are likely to need, with perhaps some alternatives in case you can't always do the same things.

    Have you had blood mineral levels checked at all? It would of course be better to be able to prevent such episodes from happening at all. My immediate thought on reading your symptoms was low electrolytes. I have a particular problem retaining sodium, although I am 99% sure I lose other minerals too, so I try to keep my levels high through increased salt intake and bone mineral supplements.
    lnester7 likes this.
  6. PNR2008
    I have never had this happen and it sounds horrifying. I've fainted and couldn't move my arms before a back operation but my mouth still worked even if I was swearing. Swearing is my near occasion of sin, if I start using curse words more than regular words, it's to a dark room with pain meds for me. It's as if the body uses the most effective words to get the job done, a defense mechanism. I'm so sorry for this event in your life.
    lnester7 likes this.
  7. taniaaust1
    sorry to hear you went throu an episode like that. I was in similar state a couple of months ago. if my boyfriend wasnt there to pick me up and move me that 1m out the house door, I would of peed all over my house floor.

    I ended up peeing where I was sitting on the ground outside, couldnt lift myself up to keep myself up out of the pee, I was collapsed just inside the door after a nasty collapse outside for quite a while where I couldnt do a thing, my boyfriend tried to sit me up while I was in the "can hardly move state" (on that occassion I wasnt paralsyed just had NO ENERGY at all available to move my body no matter how uncomfortable I was (hard to even have eyes open) and I just fell flat onto my face into the dirt patch of my garden and stayed there (it had been raining so I had my head in mud) . It's crazy how severe we can get even when we arent bedbound people, I can go from being okay to being in a crazily bad way in as little as 15mins if I over do it (actually on that occassion it had only been 5mins of forcing myself to do something active).

    best luck that it doesnt happen to you again and yeah unless hospital would give you a drip, going there would probably be worst for you. Best not to be moved at all except to be laid down and await for things to improve. (it took over 2 hours before I could move last time I was like that. Im my case I was like a only partly conscious limp rag doll but one who could of easily gone into a seizure with stimulation i that state, those jerks). I cant talk either when in such a state so are at whoever is around me's mercy, couldnt tell my boyfriend to not try to sit me up.

    Take care not to overdo and get that tired. If you need to put your head down on the table to rest, that probably means you shouldnt even be at the table and probably should be in bed. Watch those tiredness levels.
    lnester7 likes this.
  8. RUkiddingME
    I'm soooo sorry to hear this!! I haven't been paralyzed in a while and I remember to well how scary it is. Horrible that's it's happening now, have you had more OI lately maybe? My longest paralyzed episode was about 12 hours. Feels like what would feel like to be on a date rape drug. Hope you bounce back soon! :)
    lnester7 likes this.
  9. madietodd
    I just saw this, and I have nothing to offer. But I'm SO sorry you're going through this. Have you gotten word to your doctor?

    If you're worried about it happening again soon, maybe you could write out a list for your husband, of what you're likely to need. If you can click your tongue or blink, you could run through a short list relatively easily.

    If you can't communicate at all, the list could be always lay me flat; always offer me electrolytes (you can suck or not suck on a straw). I don't know how he could ask about the bathroom.

    Hugs.
    MeSci and lnester7 like this.