XYREM - tried it?

[Guest guest]

Hi. Newbie poster, long-time lurker here. Sorry for the long post, but I finally have something of value to contribute to the group. Have any of you been offered a chance to get into the Xyrem (prounouced ZIE-rem) program? Let me start at the beginning of the Xyrem story as I understand it.

GHB was taken off the market because college guys discovered in the right dosage this "muscle builder supplement" they found at the health store would make a girl suitable for date rape - and thus it was labeled a date rape drug and totally banned from manufacture in the US.

Mind you, when it was sold over the counter it was dirt cheap. My dog could afford it.

But the reason it worked for muscle building was that it promoted fantastic sleep - it does nothing for actual muscles. More sleep, more ability to build muscle if you are trying to do that.

Doctors, however, complained about it being banned because there was hopeful research being done with it for Narcoleptics. So the FDA in its ultimate wisdom brought it back as Xyrem, or Sodium Oxybate Oral Solution, a "Class A" drug (I think it's "A") - which means it is considered a highly regulated drug and is not available to anyone outside of a certain program. Even the average doctor does not have access to information on it. Only one drug company can make it, and only one pharmacy in the US distributes it, and they do so by mail if you are accepted into the Narcoleptic program.

And lo and behold it is now one of the most expensive drugs on the market. Can you say drug company profits?

THEN they found that people with Fibromyalgia, just like Narcoleptics, do not drop into Delta Wave sleep and stay there. They spike all night into the waking Alpha Wave state, so they never get recuperative sleep - if they can get to sleep at all. So the Narcoleptic program was opened up for people with Fibromyalgia.

God bless him, my doctor is on the cutting edge of Fibro research, and he got me and other patients of his into the program. It is not a narcotic, it is actually closer to an anesthetic - it wears off fast. It comes in liquid form with a measuring syringe. You take so many ml's in a pill bottle full of water. Then you get great sleep for 2-4 hours. Then you get up and take it again, and then you get more sleep. You can be woken up in an emergency, although you will feel slightly drunk, and it is not addicting and can be stopped at any time. You can average a good 6 to 10 hours a night, and you won't believe the change getting a good nights sleep makes in your life.

It does have side effects. It can enhance anxiety during the day in some people. It did that for me, but once I realized it was the drug, I decided a little more anxious was worth more brain power and functionality and now I hardly notice the anxiety. Others have had to get off it. Once I wet the bed because I was coming home from a trip and extremely exhausted to begin with - that taught me not to take a pain killer too close to bedtime or I would sleep so well I'd regret it. FYI - I actually woke up thinking I had to pee, and was too tired to get up and kept putting it off until I realized I had waited too long and suddenly awoke in the act - whoops! (I didn't just zone out like the dead and sleep through it.) And there are other minor ones like that.

If you have medical insurance which pays for your medications, you might want to bring Xyrem and this program up with your doctor. He can send away for information about the drug and the program, as well as a series of quizzes you have to take to see if it is right for you (you can't have sleep apneia or other contributing conditions to lack of sleep - you have to have them addressed first).

The Xyrem Patient Success Program can be reached at 1- by your doctor. You can't call and sign up yourself. Remember, this is a research program. One of the things that they found out this year is it takes Fibromyalsia people up to 45min to fall asleep, rather than the 5 to 8 minutes for other folks. My doctor kept increasing my dosage based on the original thinking, and I ended up in the emergency room one night because I literally fell asleep sitting on the edge of the bed and my husband freaked out and called 911. I had a long talk with the program pharmacist and he said they were revising the literature. My doctor and I dropped the dosage dramatically and I got the same good sleep, just have to take my "goop" as we call it here, earlier to account for the time it takes to work on me. So be very careful to make sure you report everything to your doctor, and if you have concerns call the Xyrem pharmacist.

I tried Ambien. I tried three flexeril AND an Ambien. I tried many other sleeping drugs I've forgotten the names of and none of them gave me enough sleep to bring me out of this total fog I live in. I still have foggy brain issues, but my husband says what it did for me was to bring ME back. My personality came back. My interests. My daytime alertness. I have more energy when I am not in an CFS fatigue. I wake up at 8 or 9 and I'm AWAKE. I get up and get dressed more often than I have in the last three years.

Just thought I would pass this along. I am not a doctor, and I can't say this is the right drug for you. But if you have a sympathetic doctor and like me, you NEVER sleep (no naps, no nodding off in front of the tv, just a virtual collaspe every few days or so) you might want to have your doctor look into the program.

If anyone in the Northern Virginia area wants to know which doctor I see, let me know at mrsgottrocks@.... I like him so much I pay cash to see him even though I belong to an HMO.

Sheryl in Manassas, Virginia