Xyrem User Reviews

Xyrem - User Reviews

Xyrem User Reviews

Now you can gain knowledge and insight about a drug treatment with Patient Discussions.

Here is a collection of user reviews for the medication Xyrem sorted by most helpful. Patient Discussions FAQs


Comment from: Terri, 45-54 on Treatment for 1-2 years (Patient) Published: March 24

In '06 I crashed and burned, and went to a sleep clinic. After 9 months of sleep studies and eliminating everything else, I was diagnosed with Narcolepsy. I began taking Xyrem in March '07. The first morning I woke up EARLY and feeling more rested than I could ever remember feeling!! I have always slept more than anyone I knew, and have done so my entire life. No more sleeping 18+ hours a day and not functioning the other 6! To get a good 8 hrs of sleep, it takes 3 doses; 3.75gm each, but WELL WORTH it. I don't really even have to set an alarm. When the meds begin to wear off, I wake up! I awake about 2 hrs after the first dose and 3 after each of the others. My biggest complaint is the high sodium content. Would NEVER want to go back to where I was without Xyrem!!!!

Comment from: WARNING!!!, 45-54 on Treatment for less than 1 month Published: February 05

My Mother was diagnosed with chronic Lyme years back which is accompanied with severe insomnia. A few weeks back she started taking this medication in hopes of being able to sleep and also to get off of other sleeping medications. Last Thursday she became delerious and manic. She had major hallucinations and paranoia. This lasted a few days and on Tuesday morning we found her in the bathtub screaming like she was dying. She was having a complete break down. It made her confused and out of touch with reality. Because of the dilerium she started taking the sleeping meds that she took before the Xyrem. This put her into complete psychosis. We took her to the Emergency room that morning and she was sent by ambulance to a more apt hospital. The whole family has been completly traumatized by this experience. Last night she finally started coming back to reality but is still very confused on what happened. I think this medication is given a little too leniently. The effects are so great on some people that they should not just hand it out and wash there hands of it! No sweat off their back right? If it works for most than just keep handing it out. Please be cautious of this drug. If you have a family member or friend begining to take this please keep a close eye on their behavior. I did not do this and it almost cost me the life of my mother. I stayed up crying last night and thanking God that she is still with us. Please please be careful in taking this medication. I am writing this because what she went through and what our family went through was the scariest experience we have ever been through. WARNING!!!!!

Comment from: AshleyKJ, 25-34 on Treatment for 1-6 months (Patient) Published: December 29

I took this med for a few months, and it truly did help me with my narcolepsy. I was able to fall asleep and stay asleep, 2 things i hadnt done in years. However, I had the "midnight snack" attacks as well, and that was eventually frustrating enough that i asked not to take it anymore. However, I have not been able to take any other drug with effects nearly as posistive and the Xyrem. Even large doses of xanax don't always put me to sleep, and then you have that "hangover" feeling the next day from taking so much, which totally defeats the purpose when you have narcolepsy. So, while Xyrem is not for everyone, if you can handle the side effects, I would definitely say go for it!

Related Reading: xanax

Comment from: sunshine, 55-64 on Treatment for 1-2 years (Patient) Published: July 17

I was prescribed this med for severe insomnia and when i was taking it i got the sleep i needed, was not hung over in the am and was able to keep my CPAP on all night. I felt the best i had felt in years. Then the md prescribing it retired and it has taken me at least 6 years to finally find a shrink who is willing to try it again. I am really lookin forward to feelig better again and not staying up playing hearts on the computer to keep me sane. It has its risks abut right now i am willing to try it again. I usually did not take the second dose but slept all night. If i woke up, once in a while i would take second one but only one helped. I probably shouldn/t say this but it also inhanced our sexual life as it relaxed me. I am hesitant cuz i don/t want to get addicted but i really need some sleep.

Related Reading: sexual

Comment from: MaleaCpr, 35-44 on Treatment for 5-10 years (Patient) Published: October 27

I have been taking Xyrem since 2004 for Fibromyalgia. This drug is a miracle for me, and my doctor also believes it is the main key to my treatment. I am closely monitored by a pain specialist monthly, due to multiple medications. I have had no side effects or problems with its use. I did get pregnant in 2005, and luckily, the Fibromyalgia went into remission during my pregnancy, and I went off of the drug with no withdrawal symptoms or other adverse side effects. Unfortunately, as my doctor predicted, it came back with a vengeance after the birth of my daughter, and I have been back on the medication ever since. I get good sleep for 4 hours, wake up like clockwork, take my 2nd dose, and get my remaining four hours sleep, and wake up refreashed with to drowsy after effects. According to my doctor, this is becuase Xyrem is metabolized through breathing, and bypass the liver unlike most other drugs, so it exits the system much quicker (thus the need to take a second dose halfway through the night). I have noted that without Xyrem, I sleep much more and experience much more fatigue due to the fact I do not get the proper type of restful sleep, as most Fibro patients have many waking episodes during the night, most that they are unaware of. Because of this restful sleep, my muscles get time to heal, and it decreases pain during the day as well. My doctor stated that she has had much success with this drug with all of her Fibro patients, and I highly recommend exploring the options of this drug to anyone suffering with Fibromyalgia. The only bad side I have found is the cost of the drug-it is downright criminal. My insurance switched briefly to a copay of 50% of retail, and i had to pay nearly $400 per month. The cost has gone up significantly even since then, luckily my plan changed, I would not be able to afford that now, and it was a hardship then--but that is how worthwhile this drug can be for the pain, fog, and fatigue of Fibromyalgia.

Related Reading: pregnancy | liver


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