Narcolepsy Support Group
A sleep disorder (somnipathy) is a disorder in the sleep patterns of a person or animal. Some sleep disorders can interfere with mental and emotional function. If you are having trouble falling asleep or having some other kind of sleep disturbance, this group is for you.
In 'normal' sleep there is a 15-min stage after REM which is restorative sleep, it should erase your memory of the vivid REM sleep. if you wake up after this, you should feel more refreshed.
Unfortunately with N, we tend to have more REM episodes, be stuck in REM sleep for longer, and we wake up while still in it, which is why we remember our dreams and we do not feel refreshed.
Those people who occasionally wake up refreshed and saying 'ooh i had a lovely dream' have had an occasional instance of waking up in REM sleep, and that's fine for them because they are not doing it all the time, and are not suffering from the long-term effects of chronic N and sleep deprivation.
As long as you are waking up refreshed on xyrem, it is doing it's job. I would so love to know how that feels. Congratulations to you on achieving that! :-) Are you missing your dreams now though? lol
I'm not on Xyrem, but I take Effexor XR, which has suppressed REM for years. But recently, I've been having a LOT of dreams again. I'm curious if anyone can think of why that might be? Do SSRI's and SNRI's work like the stimulants in that you can build a tolerance?
I hope not, because I'd rather not discover I have moderate or severe Cataplexy, too.
Now, xyremhappy, why do you say you sleep lighter on xyrem than without? I would have thought it would be the other way around, simply because to remember a dream, you have to wake while dreaming.
The most likely reasons your doctor has for wanting you to try but putting it off are good ones: insurance companies consider it a last resort. They want documentation that just about every other option has been tried and has failed before they will consider paying for this VERY expensive medication. I've heard people on this board mention COPAYS for Xyrem of around $300/month, depending on their coverage.
Xyrem is essentially GHB. Now, it's not what some teenager whipped together in a 5-gallon bucket in his bathroom, but you can imagine the strict controls put on it. It has potentially severe side effects (just like any medication), nearly all users experience some sort of side effect, and although studies show a nearly nonexistent abuse/addiction rate, doctors fear putting patients in that position, which is understandable.
It is also relatively new, so there is not a great deal of data built up regarding long term use or the numbers to be able to comfortably (IMO) make any generalizations about it's use in the general narcolepsy population.
However, Xyrem shows promise for most patients who can deal with any side effects, as it is the ONLY medication so far to actually help regulate the stages of sleep and improve sleep quality, which traditional sedatives and sleeping pills do NOT do. They are not sure why, whether it is cause or effect, but people experience major improvements in cataplexy on the medication as well.
You can get more info from your doctor, or direct to xyrem.com
Jazz pharmaceuticals runs the whole program and from what I hear, the program staff is wonderful.