Xyrem User Reviews

Xyrem User Reviews

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

The following Patient Discussions have not been medically reviewed. See additional information.


Comment from: djoylong, 45-54 Female on Treatment for less than 1 month (Patient)

I am currently participating in a study using this medication for Fibromyalgia. I take 2.25ml when I go to bed and 2.25ml 2.5 hours after I go to sleep. To date, this is the only medicine that truly helps me with my sleeping problem and relief from muscle weakness and fatigue. Published: November 29, 2007 ::

Comment from: kogeliz, 25-34 Female on Treatment for 1-2 years (Patient)

I have narcolepsy. Xyrem helps me get my real deep sleep and I can actually wake up on time to my alarms. This is amazing for me since I have never really felt how normal people do (ie: well rested). It IS a pain to get used to waking up in the middle of the night for the second dose... but worth it. Published: October 28, 2007 ::

Comment from: Montego, 45-54 Female on Treatment for 1-2 years (Patient)

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. Published: October 30, 2007 ::

Comment from: 19-24 Female on Treatment for 1-6 months (Patient)

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". Published: July 20, 2008 ::

Comment from: wyans17, 25-34 Female on Treatment for 1-6 months (Patient)

This medication landed me in the hospital. I almost died and was in a coma like stage. I had to spend a week in a psych unit because I had such bad memory loss, confusion and aggitation. This drug is not safe. From now on I have to go to therapy, take daily medication, and am unable to work, drive and do anything without the help of my husband. I was a healthy 28 year old female with insomnia before this and now my life is gone. Please stay away from this medication. It has caused the same kind of brain problems as if you were involved in a horrible car accident. Published: April 08, 2008 ::

Comment from: donna, 35-44 Female on Treatment for 6 months - 1 year (Patient)

i have fibromyalgia. I could never get to sleep, stay asleep, or wake up rested prior to this drug. Now I am a co-director for a large deveoper, very busy daily schedule, and i can honestly say finally i can keep up. And more important "get up" in the morning. Donna Published: March 12, 2008 ::

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

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.. Published: January 20, 2008 ::

Comment from: 72627262, 25-34 Male on Treatment for 6 months - 1 year (Patient)

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. Published: October 17, 2007 ::

Comment from: 45-54 Female on Treatment for 2-5 years (Patient)

I was taking for Narcolepsy for 3 years. Was on max dose, never slept after first dose, but did after 2nd. ONLY time I get a refreshing sleep! I have recently had to stop this med due to severe side effects of depression and suicidal thoughts, symptoms went away like magic after 2 days off drug, but now EDS and SP/HH are back. Love the drug, and it worked great for a while - but please be on the lookout for depression side effect. Published: May 28, 2008 ::


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