Other than the ibuprofen you mention, which I use to combat side effects of Betaseron, I'm not on any other meds...so can't specifically be helpful. But here are some general comments. I'm always wary of taking drugs to help me sleep (like Lunesta), and then needing a drug to help me stay away (provigil). And falling asleep without being aware of it is scary. Mix in the migraine medicine...and I wonder if there isn't some medicine mixing there that isn't helpful?
Have you ever had a sleep study done? There are lots of sleep disorders, and MS can cause some of them. And of course they (sleep disorders) in themselves can cause drowsiness during the day. The suddenly falling asleep without being aware of it isn't in my MS-fatigue related experience. For me, the MS fatigue can come on suddenly -- I'll be fine, rocking along, doing something...and then realize that if I don't go lie down NOW I'm going to be REALLY cranky, I'm REALLY tired, and the only thing I can do is go lie down. I'll get shaky, fretful, even teary..and the only "solution" is to stop what I'm doing and go lie down. Not a "passing out" (that's not a coma, by the way..but could be a seizure disorder, or narcolepsy -- both of which would become apparent in a sleep study) but just an awareness that I'm WAY tired.
I do lie down during the day -- usually a half-hour or 45 minutes in the mid afternoon. I get up early -- around 5:30 or 6 a.m., then there's that 45 minute nap (I don't always fall asleep, more just "zone out" with CNN droning in the background), then I climb in bed around 7 p.m., watch a couple hours of tv..sometimes til 10 p.m, then go to sleep. When I DO go to sleep..I am out. I don't even move in bed (and so I do wake up stiff and clumsy, as I've been in EXACTLY the same position all night, or at least for however many hours I've been sleeping..usually at least 4, and then occasionally waken for a bathroom break). Then back to bed and again, won't move until I wake up in the morning. So sleeping isn't a problem for me.. :)
The foot..just sounds like another way spasticity is rearing it's ugly head... It can occur in any muscles, and you do have muscles on top of your foot.
I gotta go for now..heading out for the evening. I'll check back in later.
Wow that is truly frightening. I hope you are no longer driving or at least no driving until you figure this all out. Keep in mind the safety of that precious little child you have. Good luck with finding answers on this and some resolution. I cannot imagine that your conking out is considered a normal form of MS fatigue. Be assertive until you get those answers.
Love and prayers,
Post Edited By Moderator (Gretchen1) : 2/2/2008 8:59:20 AM (GMT-7)
Have your docs ever considered narcolepsy as a possible source of your sleep issues?
Here is some info on it:
I didn’t mean to scare you with that link on narcolepsy, and I’m sorry if that was the case. It really does sound like there is something going on that needs to be addressed though (not necessarily narcolepsy), so hopefully that information helped clarify some of what’s been happening to you. I’m really glad you are going to pursue this…with proper treatment you could very well see an improvement in your quality of life! Best of luck with this, and let us know how it goes.