Narcolepsy

by **pugmom** on Mon Nov 03, 2008 8:58 pm

Hi everyone!
I was recently diagnosed with narcolepsy with cataplexy and have just started taking Xyrem (two nights ago). I am taking 2.25g at bedtime and 2.25g three hours after the first dose. I still lie awake for 30 to 40 minutes after taking my first dose. I still wake up tired in the morning. What should I expect when taking Xyrem? How do I know that it's working? How should I feel after I take my first dose?
Any info would be greatly appreciated.
Thank you!

by **hutson** on Fri Dec 12, 2008 11:16 pm

Is Xyrem a new drug that is being used to treat narcolepsy? I have narcolepsy and sleep apnea. I take imipramine at night and provigil during the day. I didn't know of any new treatments.

by **Hibit** on Sun Dec 14, 2008 1:52 am

Xyrem is supposed to help you feel awake in the morning, I have heard people talk about the ''xyrem wake up'' where you just pop awake in the morning...
I was just Dx with Narcolepsy and Xyrem was prescribed and I will be starting it this week. I'm a little worried about it, do you have any side effects?
Oh, and most meds take a few days to get working, or give it a week at least.

by **celticfyr** on Tue Mar 17, 2009 9:19 am

When I took Xyrem, it worked fine for the first four nights. I had to discontinue Xyrem due to major side effects. But that's me. Anyone is different. The other side problem is the PRICE.

by **Hibit** on Tue Mar 17, 2009 11:21 am

[quote="pugmom"]Hi everyone!
I was recently diagnosed with narcolepsy with cataplexy and have just started taking Xyrem (two nights ago). I am taking 2.25g at bedtime and 2.25g three hours after the first dose. I still lie awake for 30 to 40 minutes after taking my first dose. I still wake up tired in the morning. What should I expect when taking Xyrem? How do I know that it's working? How should I feel after I take my first dose?
Any info would be greatly appreciated.
Thank you![/quote]

It takes a while to adjust to the medicine. You have to start on a low dose and gradually increase it to a more effective one. Make sure you communicate with your doctor, he may want to inrease the dose quicker if you are having no ill effects from it. I was told the therapeutic dose was 4 g twice a night, and I started at 1.25. It should make you feel numb and kind of drunk, and you would wake up pretty quickly after it wears off. I still wake up feeling sleepy, but the difference is I can actually get out of bed if I want to. As I have increased my dose I have found that I only have to sleep 9 hours instead of 12 and have less pain from my Fibromyalgia. Unfortunately, it just takes a while to get up to the best dose, and you have to be patient and continue taking it.

Good luck! :D

by **Petrea** on Sun May 24, 2009 12:10 pm

I've never heard of Xyrem but will ask my dr. about it when I see him next. I take Ritalin LA 40mg and 3 Provigil and Vivactil 20 mg at bedtime to help me wake up in the morning. I'm still groggy but I can wake up by myself in the mornings now. The Vivactil helps take away the really bad headache and "drugged " feeling I get in the mornings.

by **celticfyr** on Sun May 24, 2009 1:06 pm

[quote="hutson"]Is Xyrem a new drug that is being used to treat narcolepsy? I have narcolepsy and sleep apnea. I take imipramine at night and provigil during the day. I didn't know of any new treatments.[/quote]

Xyrem is Sodium Oxybate. It is the salt extract of GHB. It is listed as an Orphan drug and is very expensive. the 9.0 gram dose per night will cost you over $1300.00 per month. Xyrem has major side effects, which include, but are not limited to, Death.

It is MY humble opinion, that Xyrem is not worth the risk. So, get a passport. Go to Canada and see a Sleep Doc and get a scrip for GHB.
GHB is not available in the US because the idiots at the FDA see it as the DATERAPE DRUG.

by **kaypea12001** on Mon Jun 01, 2009 9:29 am

I have been on Xyrem for almost 6 months... off and on. I am prescribed 4.5g twice a night (the max dose) at a cost of $1250.00 a month but I am very fortunate that my co-pay is only $12.00!

I have to say that I hoped it would be the miracle cure but it has some limitations.. to say the least. First, it tastes so disgusting that I have to do all sorts of things to get it down and keep it down. I didn't understand why it tasted like pure salt (worse than drinking a salt shaker in my opinion) until the previous post (thanks). I often get into bed, hesitate before taking it because of the taste and then fall asleep before I drink it. Second, I don't usually wake up after the 1st dose in order to take the 2nd. Finally, although I do get much better sleep when I do take it, I have to take it consistently over a long period of time in order to feel significant effects. So, its hard to be motivated to gag the stuff down in hopes that I will take it often enough to really feel a difference.

All that said, I am thankful to have an option to battle with. I also take Ritalin and Provigil during the day and still struggle to stay awake. So, I am continuing to battle with the Xyrem. I am interested in knowing more about GHB! I previously thought that Xyrem was the same thing... I obviously need to do more research.

celticfyr or anyone else, any info. you have on the benefits of GHB would be appreciated. Maybe I need to pack my bags for Canada.

by **WYNNE** on Sun Nov 08, 2009 11:34 pm

keep in mind ghb is not something you want the cops to find on you or even in your house because it is illegal to have in the usa because of the dumb axx pepole who can not stop themself from hurting other pepole they would also be on the look out for the pepole who get for narc. problems so just be carefull

by **Tonya36** on Wed Dec 23, 2009 1:40 am

I have never heard of Xyrem either it sounded interesting maybe when I get insurance I can try it. I currently take Adderal 20mg x2 twice a day. I have gone back 'n forth with the IR version and the XR (extended release). I think when i take it for to long it stops working. I definitely get an immediate benefit from the Adderal IR but it doesn't last that long, maybe 2-3hours! I use to take dexedrine that work okay as well. All kinds of sleep medications most give me a headache, don't work or make me feel drowsy in the am. Right now i have to switch back 'n forth one day 2pills of restoril or 2 pills of trazadone along with 1 ambien! When ambien first came out it was awesome!!!! but now it really doesn't do much atleast not by itself!!