Disabled Sleeper Seeks Advice
January 8, 2011 11:14 PM   Subscribe

Help a narcoleptic get up for work in the morning! May be impossible.

This actually might be impossible but I'd figure maybe some of you have ideas I haven't tried.

I've read past posts with a similar question...
I guess I'm re-asking this question to find out if anyone has some other ideas.

I am actually diagnosed with Narcolepsy and my last neurologist also mentioned Delayed Sleep Phase Syndrome because I've always been nocturnal.
I can sleep for up to 16 hours straight, I can sleep through my boyfriend's "band practice" in the next room.

So I guess my issue is more extreme than the average person.

I was taking my "night time" medication for a couple of years which helped about 70%. Its hard to obtain and most regular doctors are unfamiliar with it and the process to obtain it.
I moved out of state last year and haven;t had health insurance through my job. I make "too much money" (laugh) to qualify for our health department. They don't have many services offered there anyway.

Anyway, my issue is that my boyfriend is starting second shift at his job this week. Which means I'll usually be on my own to wake up.

Here are some things that I have tried and don't work... or things that wouldn't work:

1. Opening the blinds (I have to wake up when it's still dark out plus light has never woken me up)
2. Drinking fluids before I go to sleep (I apparently can hold my pee forever)
3. Using a hearing impaired alarm clock "sonic boom" - very loud and has an attachable vibrator thing. I usually sleep right through it. And sometimes I shut it off while I'm still asleep.
4. Going to bed earlier. I can do this and it doesn't help. I do feel like my personal bed time is around 2am and always has been but I can go to sleep at a normal hour. My medication helped me with that. I currently try to go to sleep at a normal time but sometimes wake up for an hour or two in the middle of the night, though.
5. Setting the coffee timer. I don't understand why people suggest this. Anyway, I don't have a coffee machine and don't drink coffee.
6. Not drinking caffeine before bed (i don't)
7. Having a dog/cat that wakes you up (can't have pets here and I don't want to take care of one)

Somethings that sometimes help:

-Living with someone who gets up at the same time. Unfortunately this is coming to an end this week.
-Setting 4-5 alarms at all different times within an hour span. Having them all over the room. Not helping as of late, though :/
-Going to sleep when I get home and waking up at 2am and staying awake until it's time to go to work (doesn't always work. Usually I just end up sleeping through)

I've heard of light therapy... but I have my doubts. Light sure doesn't wake me up. Plus they seem pretty pricey.

So, any hope for me? I really don't want to mess up this awesome job that I have by showing up late almost everyday.!
posted by KogeLiz to Health & Fitness (16 answers total) 3 users marked this as a favorite
 
If you're not already on it, I've heard that Modafinil is great for helping you wake up in the morning, while allowing you to sleep normally. You just wake up feeling alert and ready to go. Talk to your doctor, as they say.
posted by Dasein at 11:31 PM on January 8, 2011


IANAD, and have no experience with this, but I've heard people discuss this as an option - Brainwave Entrainment. Again, I have no personal experience or opinion about this, but it's a different approach than the usual, so perhaps you can bring this up with a qualified doctor. I assume you've consulted with the sleep study people, because in your case this is not the usual "hard to wake up".
posted by VikingSword at 11:34 PM on January 8, 2011


I wonder if this would help, it seems like a big investment for a long shot, but who knows.
posted by Felex at 11:43 PM on January 8, 2011


What about drinking a lot of water before going to bed? Or tea even, so that the diuretic effect makes your bladder even fuller. Do you wake up when you really need to pee? If so, you just need to time it right so that you get the urge to pee around the time you should be waking up.
posted by lollusc at 12:18 AM on January 9, 2011


I'm so sorry - I didn't see number 2 of your list of things you had tried.
posted by lollusc at 12:19 AM on January 9, 2011


Trade in your bed for a hammock.
posted by paulsc at 12:29 AM on January 9, 2011


Can you pay someone such as a neighbour you trust to come in and wake you up every morning? I'm thinking an older teenager or college student, or maybe a retired "mom"-type person who lives in your complex. Maybe $10 a morning? Ask around to see if anyone knows someone who would do this.
posted by hazyjane at 1:19 AM on January 9, 2011


I have a relative (I use the vague term to avoid accidentally outing somebody's medical history) who has narcolepsy, and all I can say that seems to have worked for them is modafinil, an SSRI, regular exercise, and incredibly rigid sleep routines. Same time up every single morning, same time to bed every single night, no sleeping in weekends, no options to snooze the alarm.

Also, you have a disability, make sure it's documented and HR is aware of it and is working with you.

The light thing might help with the delayed sleep phase part. There are cheaper ones. Amazon had one for like $50. (Been thinking about getting one myself.) It's not about waking you up with light, but somehow basically reprogramming your brain to remember that daytime is time to be awake, and nighttime is time to be asleep, and that 4:20am is not the time to be answering questions on AskMe. (Cough.)
posted by gracedissolved at 1:23 AM on January 9, 2011


I sleep in a hammock.

Like today, I slept through three alarms and woke up 9 hours later.

I LOVE my hammock. I could sleep through the day in it. And do! Hammocks are SO hard to get out of, once you're in them. Literally, hard to get out of.

I'm not sure if I'd suggest hammock sleeping to someone like the OP. I think I'd suggest a mat on the floor - like a thermarest. Something almost slightly uncomfortable.
posted by alex_skazat at 3:22 AM on January 9, 2011


I tried the sleeptracker that Felex suggested. It didn't help me get up but it did make me realise I go to bed too late and that I almost wake up a lot of times in the night, and then I found some ways to address that. Doesn't sound to me like it would help you. I also have a Lumie alarm and again this doesn't help me and it doesn't sound as if it would help you - sorry, this is a bit of a non-answer but as these things have been suggested I thought further comments might be useful.
posted by paduasoy at 3:35 AM on January 9, 2011


Since the one thing you know that works is having someone wake you up, could you hire someone to do this? It would have to be someone you could place a lot of trust in, obviously, like a relative or a close friend. Maybe you could pay that person to come over, let themselves into your house and wake you up.

The other idea I had was to use an electric blanket in reverse. I know you can program some of them to come on before you go to bed, to preheat the bed. Maybe you could program one to come on at its highest setting for a few minutes before you need to wake up. You'll get so uncomfortably warm that you'll wake up .. maybe? Or maybe you could set up a fan on a timer near the bed so that the fan would come on and blow cold air right at your bed. Would that wake you up?

Think about the "something on a timer" idea. You know better than anyone what would make you uncomfortable enough to wake up. I'm trying to think of which of your five senses would respond best to some sort of stimulation. Sound doesn't seem to do it and taste is probably out .. You need the equivalent of a bucket of water over the bed but with less mess and distress.
posted by Kangaroo at 5:03 AM on January 9, 2011 [1 favorite]


I have a VERY bright light directly over my bed that turns on three hours before I need to be up. I have a laptop set to play individual songs of varying emotional intensity VERY loudly into speakers right by my head. I spend about an hour before bed in various ritual behaviors (taking meds, preparing tomorrow's clothes, cleaning, prayer, all alternating with a mantra of "I MUST GET UP AT SIX. SIX A.M. SIX SIX SIX SIX SIX. UP UP UP AT SIIIIIIIIX. WHEN DO I NEED TO BE UP? SIX!" I drink a LOT before bed - probably 30oz. I have dinner about 12 hours before I want to be awake.

Which is to say, it's a bit like a warzone in my head/bedroom at times. But I generally get up within 45 minutes of when I mean to, and the scramble-panic thing in the morning is greatly reduced. Still a work in progress, though; I shall watch the thread with interest.
posted by SMPA at 6:04 AM on January 9, 2011


Try this comment, as well as the thread. Regimentation may help; go to bed at the same time every day, get up at the same time every day. You may benefit from trying lots of the suggestions, not 1 at a time. I wake up to NPR, 15 minutes later an alarm clock that starts w/ flashing lights, then rings the alarm. A 2nd clock on NPR goes off 1/2 hour later. That's 3 alarm clocks. I still have days when I have to pry myself out of bed.
posted by theora55 at 8:50 AM on January 9, 2011


I have narcolepsy and have never had a problem getting up. In fact, narcoleptics should have an easier time getting up in the morning because 1) we can sleep pretty-much anywhere, anytime, and 2) there isn't as much of a continuous sleep urge that "normal" people have where they'll sleep for 8 hours straight. I personally find it almost impossible to sleep for 8 hours continuously. Even on weekends, even after a night of revelry, I will still get up around the same time every day.

Basically what I'm saying is, I think narcolepsy might be a red herring here.
posted by Civil_Disobedient at 9:56 AM on January 9, 2011


Basically what I'm saying is, I think narcolepsy might be a red herring here.

As you may know, everyone is different. I've attended multiple support groups (on-line and in person) and conferences; I have met quite a few people with the same issue as me. Because our sleep cycle is not normal, some of us get only 4 hours of actual deep sleep instead of the 8 we were actually asleep for. Or it's fragmented which results in a chaotic sleep. Hence why Xyrem has worked for cataplexy because it mimics a normal person's sleep cycle - the amount of deep sleep. Which results in waking up on time, being less tired throughout the day, having less of a chance of sleep paralysis when waking, cataplexy and hallucinations. All which were greatly reduced when I was taking this medication.

Like I mentioned in my post, I had a neurologist also mention that he thinks I also may have DSPS which could be enhancing my inability to wake up in the morning. . You would think I would get used to it over the last 30 years, but I never really have.

As for extended sleeping - that's something I've only had in common with maybe 4 narcoleptics I've talked to.

So anyway, I do understand that are narcoleptics that don't have problems waking up - but like I said, I've talked to a lot more who do.

Thanks for the advice?
posted by KogeLiz at 11:05 AM on January 9, 2011 [1 favorite]


Hence why Xyrem has worked for cataplexy because it mimics a normal person's sleep cycle - the amount of deep sleep.

Uh, what? Cataplexy has nothing to do with your sleep cycle. And while drugs like Xyrem & Rohypnol are certainly used to treat cataplexy, they don't typically do anything for narcolepsy. But feel free to discount the recommendations of a fellow sufferer because what do I know, right? After all, "everyone is different."

Thanks for the advice?

Right.
posted by Civil_Disobedient at 12:40 PM on January 9, 2011


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