XYREM

tbrown1 · Post by **tbrown1** » Thu Nov 09, 2006 1:35 pm

Anyone taking it and do you like it? I was thinking about asking my doctor about it to get me over the weird vivid dream stage of REM rebound hump. Any pros/cons? yes/no? bad idea or experiences

NyNurse33 · Post by **NyNurse33** » Thu Nov 09, 2006 6:44 pm

Correct me if I'm wrong, but I thought this was being used for people with narcolepsy/cataplexy? At least it was last year, for the patient I was using it for. This poor woman had OSA and narcoplepsy with cataplexy. It was a pain in the ass to have to wake her up an hour after the first dose is given to give her the second dose. It was hard to wake her up. Don't know how someone could do it themselves, I guess with an alarm. It did decrease her falls from cataplexy though.

tbrown1 · Post by **tbrown1** » Mon Nov 13, 2006 9:39 am

bump - anyone out there with personal experience taking Xyrem... good, bad no matter. Your opinions matter to me. This forum is great!

birdshell · Post by **birdshell** » Mon Nov 13, 2006 3:33 pm

I know that several of us on the forum use Provigil, which is a narcolepsy drug. It has also been approved for ADD/ADHD. This makes some sense, as it tends to make ME behave a little ADD. I can no longer concentrate on printed materials for a long time, but the computer is not a problem. In my experience as a teacher of 31+ years, this is a common trait in the ADD/ADHD individual.

Because of the narcolepsy relationship mentioned by NYNurse, I thought I would point this out.

Provigil does not require a second dose one hour later, but I do take it twice a day: morning and mid-day. It does not seem to have any adverse side effects, and fights that "I need a nap!" feeling in the afternoon.

Of course, every person's situation is different and I am CERTAINLY not a doctor. This is not a recommendation of ANY KIND. I've not a clue as to the contraindications of using Provigil. It just seems to be working for me.

christinequilts · Post by **christinequilts** » Tue Nov 14, 2006 11:44 am

Xyrem (GHB) is not a typical sleeping med that can be prescribed lightly. It is a highly controlled drug that can only be dispensed from one central pharmacy and isn't usually prescribed for short term use like that. If your doctor even agreed and if he was already on the list of doctors who can prescribe it, by the time the script was written, sent into the central pharmacy that handles Xyrem, all the insurance issues dealt with and you completed the patient education aspect, you would probably be over REM rebound from starting xPAP. If its really an issue, a more normal sleep medication, such as Ambien or Lunnesta, may be helpful for a a couple weeks, as may seeing a psychologist who specializes in sleep disorders to help address anxiety regarding vivid dreams.

neversleeps · Post by **neversleeps** » Tue Nov 14, 2006 1:15 pm

tbrown1 wrote: anyone out there with personal experience taking Xyrem... good, bad no matter. Your opinions matter to me. This forum is great!

I recall Janelle used Xyrem with great success. It was prescribed for her to increase stage 3/4 sleep. You could try sending her a PM to learn more about her experience with it.

Guest · Post by **Guest** » Thu Nov 16, 2006 6:50 pm

[quote="NyNurse33" It was a pain in the ass to have to wake her up an hour after the first dose is given to give her the second dose. It was hard to wake her up. Don't know how someone could do it themselves, [/quote]

I'm a narcoleptic with cataplexies, and I've been taking Xyrem for two years now. One hour after the first dose seems too soon, I take my second dose two to three hours after the first. I always wake up by myself, with no problem.

One thing to keep in mind, don't eat anything fatty for a couple of hours before you go to bed. Fat absorbs Xyrem and cuts down on its effectiveness. Before Xyrem I liked to snack right before bed, I found it helped me to sleep; it was a hard habit to break, but well worth it.

Xyrem has absolutely changed my life. I no longer have cataplexies and I'm generally well-rested with plenty of energy. I still haven't started driving, but that's only because when you are 33 and have never driven it is sorta intimidating.

I still take Provigil, but have dropped from three 200 mg pills a day to one 200 mg pill.

Also, it feels great which helps compensate for the fact you can't drink. Well you can drink, but not if you plan to take Xyrem that night.