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: Montego, 45-54 on Treatment for 1-2 years (Patient) Published: October 30

I have narcolepsy and have found that this drug, along with short scheduled naps during the day, has changed my life. However, the larger the dose, the more effective the results.

Comment from: 72627262, 25-34 Female on Treatment for 6 months - 1 year (Patient) Published: October 17

I am very satisfied with the drug; in fact I can say it has changed my life. The issue is I can not live without it. I am not physically addicted to the medicine but if I don't take it, I can't sleep. I work for myself and if I ever get dropped from my idividual carrier it could be disasterious.

Comment from: laurieNC, 45-54 on Treatment for 1-6 months (Patient) Published: May 12

This medicine has helped my with my fibromyalgia pain by reducing my pain from a daily 7 out of 10 down to a 2 out of 10 on the pain scale. I wake refreshed and rested. I take less pain meds during the day. No other medicine has worked for me like Xyrem. Warning - Take this medicine while in bed since it is fast acting.

Comment from: sleepytymegal, 65-74 on Treatment for 1-6 months (Patient) Published: January 20

Took for 3 mos. Had maybe 3 great nights of sleep. Usually no sleep first dose; instead very painful restless legs, jaw and sometimes chest pains. Felt heavy and virtually paralyzed. @nd dose sometimes gave a few hours of sleep. Not uncommonly, there was NO sleep all night, but lots of dizziness, headaches, shallow breathing, pain, and semi-paralysis. Others report wonderful results. Wish it were so for me. Tried it in hopes that Narcolepsy would improve..

Related Reading: dizziness

Comment from: 35-44 on Treatment for 6 months - 1 year (Patient) Published: October 15

I have been on the medication since late April 2007 and felt that it was a God-send, however every 6-8 weeks, I need to call the doctor for an increase in dosage as I begin waking up in the middle of the night unable to fall back asleep. I am now past the maxium recommended dose and not feeling any effects any longer. I fear that I will need to stop the medication and possible switch to a sleeping pill, which may or may not have the same positive effects that I started with the Xyrem. For the few months that it was effective, it worked VERY well and was a positive in my life.

Comment from: fibropatient , 35-44 on Treatment for 1-2 years (Patient) Published: January 08

I have Fibromyalgia and do not sleep deep enough, stage 4 Rem. I have taken this medication for a least a year , on and off. My muscle spasms and pain level are greatly reduced when I am taking this. This medication has such a stigmatism from people misuse, however taken properly and under medical supervision it can help greatly.

Related Reading: muscle spasms

Comment from: Janet, 45-54 on Treatment for 6 months - 1 year (Patient) Published: September 19

I was taking this medication to treat Narcolepsy. At first I thought I had finally found the answer to my sleep problems. Then I gradually developed full blown psychosis, depression, hallucinations etc. It was REALLY bad.

Comment from: 19-24 on Treatment for 1-6 months (Patient) Published: July 20

5 months on this stuff...my doctor says I just need to work my way to the full dosage before I see any improvement. I honestly hate this medication. I started on 2.5g 2x/night and am now at 6g 2x/night (actually, I never wake up to take the second dose). The side effects are frustrating and humiliating. I've wet the bed twice, slept walked several times, and vomited a couple of times. What's worse is that while on it, I'm catatonic. I can't move whatsoever when awake. The educational materials state that in case of emergency the patient can get out of bed, but I don't buy it. I had once gotten out of bed stupidly after a sleep paralysis attack before the medication took full affect. A couple of moments later, I couldn't move. I was in and out of consciousness, but could not get out of my seat. My panicking sister was there to make sure I didn't fall out of the chair, but I was in this state for over an hour. That said, the folks at the "Xyrem Success Program" are useless. No help there. I wake up feeling groggy and terrible in general. It's just more hassel than its worth. I had high hopes for this one, but I've seen nothing that could be deemed "beneficial".

Related Reading: sleep paralysis

Comment from: 25-34 on Treatment for 1-6 months (Patient) Published: July 15

I began taking Xryem after being diagnosed with Narcolepsy about 5 months ago. After about a month or so of taking 2.5 to 3 grams 2x per night, I noticed I really started losing interest in just about everything, finding joy in nothing. I decided it must be the Xyrem, so I didn't take it one night & the next morning I immediately felt better!! I knew I still needed the deep sleep that Xyrem provided, so I then took it upon myself to take 3 grams only once/night. It has worked out wonderfully for me. I get to the deep stages sleep and wake up feeling well rested (most of the time), usually before the alarm goes off (I've NEVER done that.)I actually feel "normal", which I haven't felt in a very long time. I don't know if it's related to Xyrem or something else, but I have also lost 25lbs without dieting or exercising. The only thing I can figure is that by actually getting the deep, restful sleep my metabolism has begun to function normally.


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