Can anything help people with narcolepsy to wake up?

By sarahitt429 Latest Activity January 13, 2011 at 3:32 pm Views 5,891 Replies 5 Likes 1

sarahitt429

I was recently diagnosed with narcolepsy and have been struggling with it for years. I am taking Concerta and it helps to keep me more awake during the day, however it does nothing to help me wake up. I've tried taking it before bed and it really helps a lot, but my doctor advised me not to and since I only get enough for the month I can't take it before bed. Nothing helps me wake up. I take my Concerta at 6 and go back to bed with hopes of at least waking up by 730, however it barely helps and most times I could continue sleeping for the rest of the day. I feel like at this point, this is completely hopeless. I want SO bad to wake up on time and get to school before 4th period but it's just not happening. Is there ANYTHING I can do??

  • Report Report as inappropriate
  • Share
    Email Email
    Print Print Twitter Twitter
    Facebook Facebook

Replies (5 replies)

Add your reply Reply Down
  • tiffizhere
    tiffizhere February 26, 2012 at 6:16 pm   

    I feel ya man I take medication but I still feel like I'm in a dream like state I'm physically energized but mentally I'm in la la land it's extremely annoying

  • Amanda_Leanne
    Amanda_Leanne April 21, 2011 at 9:09 pm   

    I started Xyrem about 4 weeks ago and for me at has been amazing and I am now able to wake up. It has also helped a lot with the day time sleepiness too. I go up on the dose one more time and they say to give it 6-8 weeks to really kick in so I'm hopeful it'll keep getting better. Just a thought if anyone is considering it.

  • tSquare
    tSquare January 23, 2011 at 12:12 pm   

    I've tried a lot of what Dreamer notes in his remarks. Being a narcoleptic too, and a night person by nature, I can sleep any time of day so bright lights or not Zzzzzz… Setting multiple alarms around works most days, but if I'm in a 'wanna sleep' mood I'll sleep walk and turn the dang things off before they go off, or turn them off without waking up. Dinking enough fluids before I go to bed to need to pee 'urgently' to wake up has backfired as I'll dream I am in the bathroom (while asleep in bed) and you can guess that disaster. So not trying that trick anymore. Having a pet who 'insists' on being fed at a certain time, and determined to wake you, works about as well as the alarms most days but screw it if my mind is determined to sleep. The best overall for me has been to keep to a routine every day of the week of when I take my meds, go to sleep and so on. I actually get up an hour before I 'need' to get up so I take my meds. Zonk, back to sleep and then about the time the alarm goes off (2nd unit) then I'm awake usually.

    I have also found I need to respect my body's nature and let it have a sleep-day every few weeks. I just don't take the 'alert' meds in the morning at the usual time and allow myself to sleep 16-18 hours, get up for dinner and then go to bed normal time and start the everyday routine again. The day after a sleep day is usually non-productive so I often just tell people its my 'sleep weekend' and forget trying to do anything else that weekend. I have found this more helpful to aid in dealing with my 'sleepies' over time than forever battling it. Nature eventually wins, or she makes life poopy until she does, is what I've learned. Yes, loosing an all too precious weekend sucketh too. Don't get me wrong there.

  • TheDreamer
    TheDreamer January 18, 2011 at 5:48 pm   

    Well, there's the story about sleeping beauty who uses flumazenil to wake up and stay awake.

    http://www.emory.edu/EMORY_MAGAZINE/2008/wint...

    IIRC, she has it applied as a cream before she goes to bed, so that it gradually absorbs until it'll wake her in the morning.

    Might try to find out if they've come up with an alternative solution yet. I know they had two clinical trials pending last fall (one with flumazenil and another with biaxin).

    I've heard other people, who are on provigil, say that they take their morning dose first thing when their alarm goes off in the morning, so that they'll eventually wake up… but, guess you're already doing that.

    Right now, I use 3 alarms in the morning…and almost always go on to the third, though it doesn't take too much effort to sleep through the 3rd when I want to. I suppose I should move the alarm clocks to be further away from the bed.

    I have a dual alarm clock radio…it plays radio first and then it beeps. Often the radio part and sometimes the beeping will penetrate my dreaming before I wake up. It sits on the nightstand on the far side of my bed, where it used to be just out of reach. Though the mask I use now has a little bit of hose to it, that gives me just enough reach to it now.

    A design flaw is the off button is next to the snooze button, so usually it would get turned off instead of snoozed.

    Meanwhile, years ago I had gotten a light box and put that on a timer…so that it would suddenly become daylight in my bedroom. I think the bulb is old, because it seems takes a few minutes to reach full brightness now. Plus, if I work at it, I can sleep through it.

    Me, I'm in a fog for quite some time after I get out of bed…and after I get coffee. Though it did kind of wake me up that morning where I walked into a box on the floor by my coffeemaker and broke my toe. It also seemed to make me less sleepy in general for about 4 weeks.

    Though laying there in my brightly lit bedroom, with my eyes open, for a while, does seem to help on waking me up enough to get out of bed. Now that my OSA being under control doesn't require me to make the mad dash to the bathroom upon waking…sometimes it isn't among the top things I do after getting up.

    I got a blue-light box on order that I plan to put by my computer where I check my email in the morning. I should probably see about getting the daylight bulb replaced.

    The Dreamer.

  • Avera
    Avera January 13, 2011 at 11:37 pm   

    I found a very good site where someone asked the very same question that you posted. There are some excellent suggestions there. The site is just a place where people ask all sorts of questions and others with the same problems answer. It is not a Sleep Disorder site. Here is the link:

    http://ask.metafilter.com/175207/Disabled-Sle...

Hide the Social Toolbar Show the Social Toolbar