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July 2014 Moms
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Any mamas with narcolepsy?

LPetraLPetra member
in July 2014 Moms
I'm guessing not... but if so, come commiserate with me!  As if pregnancy fatigue isn't bad enough... 

I feel like I am incapable to care for my DD at this point... I am so nervous about dropping her.  I have the cataplexy factor (unrelated to emotions), and with not enough sleep, I definitely notice an increase in episodes.  This is killing me.
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Re: Any mamas with narcolepsy?

  • rattlecanqueenrattlecanqueen member
    no narcolepsy, but that sounds horrible. I'm sorry you have to deal with pregnancy fatigue on top of it. I can't even imagine. I hope your energy returns quickly!
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  • hab83hab83 member
    Woah! I have narcolepsy with cataplexy, too. Didn't expect to see anyone else in this group.

    I'm such a mess. I can't function well at all most of the day. I'm so glad I work from home and only part time. I stay home with my 5 year old DD and it's so tough right now.

    My cataplexy has been gradually getting worse since I went off meds in August to get pregnant. I had an attack that made me drop to the floor last week. If that becomes regular, I may end up confined to the couch and my bed most of the time.
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  • LPetraLPetra member
    @hab83 I am so glad I SAH... I can't imagine working at this point.  Did you find that the meds you were taking really made a difference?  I opted to not go on anything, just because I knew if I got 10 hours of sleep I was pretty well in the clear.  10 hours isn't cutting it these days though... I feel so helpless.  I imagine none of the medications are pregnancy friendly, so we just kind of have to suffer through this. 

    It definitely wasn't this much of a problem with my last pregnancy, but that is because I didn't have a LO chasing me around.  I slept so much in the first trimester before.  Wahhh!  :((
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  • hab83hab83 member
    My first pregnancy is when my coffee addiction began... I wasn't diagnosed yet, so it was easy for everyone, including me, to blame my tendency to sleep all.the.time on being pregnant. I was so fortunate to have an understanding boss who would let me work from home when needed so I could rest. Back then, the cataplexy was so mild that I thought it was normal for people's muscles to go weak and their knees to slightly buckle when they laughed.

    I don't know if it was the change in hormones or the fact that I had a little person to help dictate my schedule, but I was never the same again. I'd been sleepy since my teenage years, but it seemed to get a lot worse during and after pregnancy.

    Xyrem used to be a pregnancy category B drug but was switched last year. I have heard of several women who stop it during the first trimester and then go back on it later. I don't feel comfortable doing that because I just don't feel there has been enough research into how the med may or may not affect a fetus. But two years ago we had basically given up on having another baby because we just weren't sure how I would handle everything when I was struggling so much already. Knowing I can go back on Xyrem at some point after the baby is born plus making big decisions like quitting my full time job have given is hope, so here we are. It's really damn hard, and I hate disappointing my little girl so much when I'm too sleepy to play, but I keep telling myself it will be worth it.
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  • hab83hab83 member
    Oh, do you suffer from fragmented nighttime sleep? I usually get around 9-10 hours, but I dream 3/4 of the night and am tossing and turning the rest. I wake up sleepier than I was then I went to bed, which is exactly why I was on Xyrem.
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  • LPetraLPetra member
    I actually am waiting to do my sleep study still to confirm the diagnosis.  But my consultation appointment pretty much confirmed what I had suspected.  I had read about narcolepsy in highschool when I first began having my cataplexy episodes, but my parents brushed it off saying I didn't have it bc they knew someone with it who was always nodding off and I never was like that.

    Wish I had gotten this straightened out much earlier.  I also had friends who laughed at the amount of sleep I needed... and I thought the sudden muscle loss was normal during extreme fatigue, so I brushed it off.  My cataplexy isn't linked to emotions, I imagine that must be really rough.

    I am not sure what my night time sleep actually will be like when I have the sleep study done.  I feel like I sleep soundly... I don't wake up or anything (except now with the pregnancy to pee!).  But I rarely wake up feeling that well rested.  So it will be interesting to see.
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  • hab83hab83 member
    The longest stretch of sleep I got during my polysomnogram was about 45 minutes, and I had taken Ambien. During the MSLT the next day, I wasn't sure whether or not I slept in three of the naps because I kept hearing footsteps and people talking. Apparently, those are the naps I slept and had sleep onset REM periods. I was like, oh great, so I can be asleep and not even know... Freaky thought.

    It's interesting that your cataplexy is not tied to emotion. How is your doctor sure that's what it is? Sometimes during bad sleep attacks, sleep paralysis will kick in if I'm sitting or lying down before I konk out.
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  • LPetraLPetra member
    Well, I just have all of the classic symptoms of narcolepsy, and the cataplexy can apparently be unrelated to emotions, though it is not as common.   So she isn't really sure, but is hoping to confirm it during the overnight study. 
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  • hab83hab83 member
    Will you be having the nap study (MSLT) as well? I know here in the US it is required as part of the diagnostic criteria in order for insurance to cover some meds if you end up going down the road. I'm sure you and your doctor know this, though. :)

    I have heard of some people who have cataplexy with no emotional trigger. I think that would be harder to learn to manage. Do you have any sort of warning? For me, I get almost a tingling sensation down my skull before the muscles give out.
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