Narcolepsy Support Group

Insomnia is actually one of the biggest problems (along with the related exhaustion) I have. I actually haven't fallen asleep while doing something unrelated, and can't take naps. Without the Xyrem, I sometimes went days in a row without being able to sleep at all. Even when I could sleep, it wasn't very restful, so I'd wake up as bad or worse off than when I fell asleep. It still isn't perfect with Xyrem, though, and times I can't fall even asleep until the second dose (four hours after the first), or at all. However, it rearchitects your sleep state, so when I wake up now, I'm more rested. "More" being a relative term, as I'm still kind of out of it, but much much better off than without it; I can actually do some things during the day now, and carry on a coherent conversation, etc.

My two biggest problems have been EDS and problems going to sleep at night and staying asleep. Since being on Xyrem (10 months) I feel I sleep pretty good most nights, but there are only a few times I can say I actually felt refreshed when getting up. Like Frozen Trout there are some nights I have a hard time going to sleep even with the Xyrem, only it happens to me with the first dose. The EDS has been helped some by the stimulants but in reality I am only applying a band aid, and not by getting the restortive sleep you are suppose to get from Xyrem. I also have developed a very rapid heart rate, and major tremors lately, that I have decided to not take Xyrem for a few nights while recovering from my surgery to see if it makes a difference. I just don't know any more if Xyrem is worth taking, if it does not do what it is suppose to do.

My name says it all. xyrem does much more than mske you sleep. It CORRECTS your sleep. I had lost some of my memory and sex drive and consentration, because I was only sleeping in rem and knot in the other stages of sleep. Between the narc. and restless legs,and kids, I was very sleep deprived.

It took me about 2 months to get used to xyrem. It felt like I was not even sleeping. The sleep was so light. I don't dream much anymore. But I don't nap, Ifeel some what rested. And everything has come back. I have reset me bonderies about extra projects, cleaning, and working on rental homes. This is the best that my consontration has been in my hole life.

Thank you all for your responses.

I have an appointment with my sleep specialist. I just moved to a new city, so I met with him once when I first moved here, and we decided that once I settle in, and have a better idea of what my 'normal' is, we can look at readjusting my meds, because I have been struggling with all of the EDS and 'brain mush' as I refer to it.

I think I will mention xyrem to him, because my sleep at night feels like I am busier than during the day, because I dream non-stop.

My experience on xyrem is close to FrozenTrout's. I had been taking Melatonin for decades prior to diagnosis which did hep me sleep, but didn't do the sleep stage correction that Xyrem does. I do have to admit I almost kinda miss by vivid dreaming world...I think I only really dream now during the couple of hours after the second dose wears off and I get up. About 4:30 am to 6-7 am.

I went through a stage that I was not getting the vivid dreams, and I kinda missed them too. Now that they are back and worse, I would give anything to slow them down.

I'm jealous. My HC won't give my Xyrem. She freaked when she learned it was "ghb" or whatever. *le sigh*

HCP* Healthcare Provider.

I have no idea if my doctor will prescribe it or not. My appointment is in 10 days, so I will find out then. Hopefully he will.

Have a lot of people had problems with getting rx's?

The last thing any of us needs is unsolicited advice from people who don't have narcolepsy but think they have all the answers. Or worse, think they even understand it.

Yes, many of us have a lot of trouble going to sleep. Others have no trouble falling asleep, but staying asleep, getting up every hour or so. That is what we call disrupted nighttime sleep.

The Xyrem does help us sleep and get a better quality of sleep, but it's really a very individual thing. What works for some might not work for others. I generally fell asleep quickly on Xyrem, and awakened on my own for the 2nd dose. My problem was with the side effects being so severe that after 18 months on Xyrem, I had to quit.

It does boil down to us not being able to get consolidated restorative sleep. Now that I've gone literally decades without consolidated restorative sleep, I am so sleep deprived I can barely function at times.

And yes, as someone said, our stimulants are only a band-aid. Still some help is better than no help at all. I had to go to the cardiologist for lots of tests, ie: stress test, echo cardiogram, etc. and could not take my stimulants. Plus I had to be there in the morning (even on meds, I don't 'do' mornings)

I walked in there clinging to my son as it was so hard to stay awake, I needed his help keeping me upright. I couldn't even sign in. I told my son to sign me in. The girl at the desk looked at my funny and I realized sweat was just pouring down my face. I was so desperate for sleep. She asked if I was okay and I asked her if there was anyplace at all where I could lie down.

They quickly led me to the room where I'd have the stress test. Ah, at least I was lying down. A tech. came in to get things in place for the test, and I kind of mumbled something about me having cataplexy attacks. She clearly had no idea what I was talking about.

I knew my body was wholly stressed out, trying to function without any stimulants, and sure enough I had one heck of a cataplexy attack. Boy, that place really came to life. Long story, but basically, everyone, even the cardiologist, was in a panic, even though she knew about my cataplexy.

I came out of it, spoke to the doctor, then the medical director for a few minutes and wham! I went back into another C attack. Lesson learned. Do NOT leave my house without my stimulants and try to function - ever.

Hmmm . . . got off topic there. Sorry.

Krazeekat - if your doctor won't give you Xyrem, it only shows his o r her ignorance on the subject. If your doctor isn't a sleep specialist, it probably would be best for you to find one. Xyrem people would be more than happy to enlighten your doctor though.

Xyrem, or GHB, is not like the street drug. It is manufactured under very controlled conditions, is strictly dosed, and if they would do a little investigating, they would discover that it has been around for a very long time, and years ago was even used as an anesthetic. People hear only of the illegal uses of drugs and make assumptions.

Take methadone. My son is on methadone, but when the doctor first suggested it, my son flipped out and couldn't imagine why the doctor wanted to give him something that heroin addicts take. The truth is, methadone was created as an extremely effective pain killer to be given under very controlled circumstances. My son has had numerous back surgeries, and the typical pain killers no longer work for him. Without his methadone, he wouldn't be able to function at all.

Oops, again, off topic. Well, I'm told that is a narcoleptic trait, that we tend to go off on tangents. It is something I seem to excel at.