Has anyone made improvement with narcolepsy nighttime symptoms? - Sleep Disorders Message Board

ckc27 · 06-26-2008, 04:32 PM

From my recent research, one of the most important symptoms of narcolepsy is that REM sleep occurs at or shortly after the onset of sleep, instead of REM happening approximately ninety minutes after falling alseep. Also someone with narcolepsy tends to awaken often at night. I definitely have these two problems and it occurs every night, not to mention an overwhelming need to sleep during various times of the day.

Has anyone received any help through medication, etc., that has delayed the REM sleep to any degree? Do sleep studies show REM episodes?

I'm aware of adderall and other meds helping with the daytime drowsiness, and will resort to something of that nature if needed, but I'm hoping to first make improvement in the cause of the drowsiness - improper REM sleep (or it seems so from my research so far). Thanks, Chris

sleepyk85 · 08-06-2008, 05:07 PM

Hey Chris,

From my understanding, they have not figured out a way to re-order the REM sleep. That would be ideal, of course, but as for now, the only way to deal with narcolepsy is to treat the daytime symptoms with medications, and to self-medicate with naps.

I've been on Concerta (18 mg, long-acting) and two doses of methylphenidate (10 mg, short-acting) for the last few months, and I can't tell you how beneficial it has been. I still have to medicate with a nap here or there, but for the first time ever, I feel awake enough to live. I don't feel jittery, and have experienced no side effects so far. This is the 3rd set of meds I've tried--I first tried Provigil, which I hated (it made me stupid, gave me headaches, and didn't keep me awake), and then I tried a combination of the Concerta and two 5-mg tablets of methylphenidate (which wasn't strong enough). This new combination, though, is working wonders. I highly suggest looking into daytime medications--it's made a huge difference for me, and I hope it can for you, too.

Quote:

Originally Posted by ckc27

From my recent research, one of the most important symptoms of narcolepsy is that REM sleep occurs at or shortly after the onset of sleep, instead of REM happening approximately ninety minutes after falling alseep. Also someone with narcolepsy tends to awaken often at night. I definitely have these two problems and it occurs every night, not to mention an overwhelming need to sleep during various times of the day.

Has anyone received any help through medication, etc., that has delayed the REM sleep to any degree? Do sleep studies show REM episodes?

I'm aware of adderall and other meds helping with the daytime drowsiness, and will resort to something of that nature if needed, but I'm hoping to first make improvement in the cause of the drowsiness - improper REM sleep (or it seems so from my research so far). Thanks, Chris

ckc27 · 08-09-2008, 10:21 PM

Sleepyk85,

Thanks for the response. I'm currently trying a new drug called Vyvanse. I'm sure the doc is getting some sort of incentive for prescribing it. It's mostly used for ADD. Reports are showing four times more side affects than Adderral but it's still being experimented with. My side affects are stupidity, forgetfulness, disorientation, jitteriness, self-consciousness, paranoia, zero appetite and zero sex drive. Other than that, it's been a fine drug... lol.

Seriously, the stuff does keep me awake, holy cow! I have to take it very early in the morning or I won't be sleeping until at least midnight. I've easily decided, though, that this drug isn't a good idea for me, and will suggest to the doc on my follow-up the meds that you are taking.

My insurance doesn't cover meds for narcolepsy. Do you know the monthly cost for the ones that you're currently taking? I'm on a free montly trial, but from what I've read on other forums that the cost for Vyvanse is around $150.00 per month. Thanks, Chris