Here is my dilemna. I have been having problems for the past year and a half. I feel like I am in a haze/spaced out pretty much all day. Almost to where I have no point to exist. I actually have trouble going to sleep but still extremely tired. Provigil has not been effective at all. I was prescribed Xyrem by a previous doctor and have it in my possession. This doctor wanted me to take it with a CPAP as a precaution because I had very very mild sleep apnea. I switched doctors for geographical reasons and this doctor said to wait on the xyrem but he would also see no need for a cpap as the apnea is very minimal. I am miserable currently and really wanting to take the xyrem and cannot get into my sleep doc until the 28th. I have no CPAP and debating on whether I should start the xyrem before I see him. Is anybody else spaced out all the time? Almost like you are disconnected from everything?
Posted 14 January 2013 - 08:38 PM
It's hard, I know, but in this case I'd follow your doctor's advice and wait until you talk to the sleep doc before starting the Xyrem.
I understand the Provigil isn't working. Is it possible to take one or more scheduled naps during your day? I work a 12-hour graveyard shift, and I'm supposed to take a 20-minute nap every 4 hours, which means two while I'm at work. I sneak* out to my car, curl up in the back seat, lock the doors and set an alarm on my phone. When I don't get either (or both) of my naps for some reason, it kills me. Not just in a haze, but sleep attacks, fighting to stay awake and concentrate on anything ... And that's with taking my Nuvigil before my shift starts.
*And by "sneak," I mean that my co-workers don't know about it. I did, however, make arrangements with my supervisor and HR to allow it. Of course, I got a lecture from my HR rep for talking to my supervisor first, instead of going directly to them--something about not wanting my supervisor to think about me having narcolepsy, even subconsciously, when opportunities for promotions and such arise. So, my supervisor and HR know. Since I get an hour for lunch, I just count my naps as my lunch hour, broken in two. Always eat lunch at my desk, anyway. Where else am I gonna go at 3AM?
Posted 18 January 2013 - 03:53 PM
I think the spaced out/disconnected feeling is common with people with narcolepsy. It's common with me, anyway. I still feel that way pretty frequently, though medication helps some of the time. Taking a nap helps a bit, too. I guess my brain is just really tired? I don't know about the CPAP thing. But do be careful. I don't have sleep apnea, but I think something that happens to me with the xyrem might be kind of similar. The xyrem really knocks me out, and according to my boyfriend, sometimes I get into positions where I can't really breathe, so I start kind of hyperventilating and he has to move me so I can breathe. He just told me that the other day. That's pretty scary. I don't want to get brain damage or something while I'm sleeping, and that can't be good for restful sleep either. I know it sucks to wait, but it may be worth it.
Posted 20 January 2013 - 02:31 PM
I appreciate the advise. I talked to my Xyrem nurse and she said I would be fine taking the drug. I have two nights under my belt. And they are the tale of two cities. First night I was extrememly nervous. Took both doses woke up feeling great all day. More energy than ever before. Day 2 I was completely exhausted. Opposite of day 1