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Narcolepsy and dialysis

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  • FMBK
    started a topic Narcolepsy and dialysis

    Narcolepsy and dialysis

    Hi. I've been a member of the forum since 2008 when I first started dialysis. I haven't checked the forum in a long time and I'm unfamiliar with the changes/new ways of posting, etc. So, I hope this is posted in the right section.

    I wanted to ask if anyone has experience narcolepsy since starting dialysis (falling asleep while talking to people, and other unexpected, uncontrolled times.) A friend in my clinic has been going through this since starting dialysis. We'll be talking and she suddenly nods off. The dangerous part is when she is not with people. She has fallen down several times. Once, just recently, she was sitting on a bed (hotel room) and suddenly fell asleep, falling forward onto a table. She has bruises now on her face. I told her I'd ask in the forum if anyone else has experienced this. (My sleep issues since dialysis are generally NOT falling asleep...even when I'm really tired.)

    Thank you!

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    replied
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  • AngieOnDialysis
    replied
    Originally posted by FMBK View Post
    Hi. I've been a member of the forum since 2008 when I first started dialysis. I haven't checked the forum in a long time and I'm unfamiliar with the changes/new ways of posting, etc. So, I hope this is posted in the right section.

    I wanted to ask if anyone has experience narcolepsy since starting dialysis (falling asleep while talking to people, and other unexpected, uncontrolled times.) A friend in my clinic has been going through this since starting dialysis. We'll be talking and she suddenly nods off. The dangerous part is when she is not with people. She has fallen down several times. Once, just recently, she was sitting on a bed (hotel room) and suddenly fell asleep, falling forward onto a table. She has bruises now on her face. I told her I'd ask in the forum if anyone else has experienced this. (My sleep issues since dialysis are generally NOT falling asleep...even when I'm really tired.)

    Thank you!
    I know this is old but this is the ONLY thing I could find that is what I am trying to find. I have been having these exact same symptoms and my dialysis team is confused. No one can offer me any help. I have been on dialysis before my last transplant but never had these issues. For some reason this time around I am having this very serious Narcolepsy! I have already fallen asleep TWICE standing UP in the past month. I told the rotating Nephrologist on rounds who I have known for 2 decades and he didn't seem too concerned but said perhaps I was just fighting something. And that was all. I have fought a LOT of things and never had this strange side effect. I was hoping the Nephrologist would not just guess but want to find out why his patient is randomly falling. That first time I ended up with a huge bruise on my leg, knee, and a bump on my head and chin (under the chin to one side) and a cut on my knuckle. The 2nd time I was lucky that I fell backwards instead of forward and landed on my bum. I am in Canada and live alone. My blood pressure is not low and my hemoglobin isn't too low neither (11.5)

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  • IHaveFaith
    replied
    Originally posted by DevonTexas View Post
    Goof advice, IHaveFaith. The condition may have been coincidental with dialysis and not associated with it. She needs to raise this with her docs.
    Uhmmmm........ Was that "Good" advice or "Goofy" advice? eheheh......

    I'll be replacing the strength of my lenses soon, perhaps I could donate my old pair to you, but ur eyz r prolly bdr thn my 2 r, uh????

    PS DEVON, u gna b my frnd? Did you get my friend request? Or my message, lemme know with PM if u can!
    Last edited by IHaveFaith; 08-14-2012, 10:41 PM. Reason: psnl msg to Devon

    Leave a comment:


  • DevonTexas
    replied
    Goof advice, IHaveFaith. The condition may have been coincidental with dialysis and not associated with it. She needs to raise this with her docs.

    Leave a comment:


  • IHaveFaith
    replied
    Hello,

    Welcome back! Sorry you haven't received a response to this thread. How are you doing on dialysis?

    Boy, I sure feel for your friend! Seems like if she didn't have this medical condition prior to dialysis, that it would be somehow related, but this is something that needs to be looked into by her doctors because she could surely cause herself some serious injury!

    It is very kind of you to try and help.... the best thing you can do for your friend is encourage her to see her doctor as soon as possible so she will not bring serious harm to herself and/or others.

    Please, keep us posted. And thanks for being such a "good" friend.

    Leave a comment:

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