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Share your experience: submit a drug review
Below are Xyrem (Sodium Oxybate) reviews, ratings, comments submitted by patients and caregivers. Based on a total of 9 ratings/reviews, Xyrem has an overall score of 6.89. The effectiveness score is 7.78 and the side effect score is 6.22. The scores are on ten point scale: 10 - best, 1 - worst. This information is not vetted and should not be cosidered as clinical evidence. | | Xyrem review by 57 year old female patient | | | Rating |
| Overall rating: | |   |
| Effectiveness: | | Marginally Effective |
| Side effects: | | Mild Side Effects | | |
Treatment Info |
| Condition / reason: | | sleep disorders |
| Dosage & duration: | | 400 mg taken nightly, 2 does for the period of one week |
| Other conditions: | | none |
| Other drugs taken: | | Ritalin, Mirapex, C-PAP machine | | |
Reported Results |
| Benefits: | | I ahve three sleep disorders: sleep apnea due to closing up of my throat (anatomical), restless leg syndrome and the worst one, hypersomnia -- tired much of the time with no explanation. I tried this drug - sent directly to the home and only with approved diagnosis (I am just short of narcolepsy) - to see if I would feel rested when I awoke. I did for one day but then the effects did not continue with each successive night. Sounds strange, I know, but that is what happened. |
| Side effects: | | I did not have any side effects except that if I got less than 4 1/2 hours of sleep after waking to take the second dose - I would stillfeel the effects -- as if drugged a bit. |
| Comments: | | I think I have included everything above. I tried a second week and felt a slight refreshed feeling upon awakening - but not significant ewnough to keep taking it. Understand, I only remember awakening refreshed 3 times in my life. one of them after that first night I used Xyrem. I have enough to try a third week and probably will -- since I am desperate for my former qualilty of life when I didn't struggle with feeling tired as I do now. |
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| | Xyrem review by 34 year old female patient | | | Rating |
| Overall rating: | | |
| Effectiveness: | | Highly Effective |
| Side effects: | | Moderate Side Effects | | |
Treatment Info |
| Condition / reason: | | insomnia |
| Dosage & duration: | | 3mg taken daily for the period of 6 months |
| Other conditions: | | bipolar disorder |
| Other drugs taken: | | prozac, seroquel, lamictal, topamax, trileptal | | |
Reported Results |
| Benefits: | | While taking Xyrem, I slept exceptionally well at night, woke up rested, and strangely, within months of starting the medication, lost fifteen or more pounds. |
| Side effects: | | Some nights I felt significant joint pain, primarily in my elbows and my shoulders. Other nights I suffered night sweats so severe that I would have to change out of my wet pajamas. On occasion when falling asleep I would feel very giddy, almost "high." |
| Comments: | | Lack of sleep severely impacts my mood and none of the other sedative medications that I had tried worked, so I tried xyrem with beneficial effects. |
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| | Xyrem review by 26 year old female patient | | | Rating |
| Overall rating: | | |
| Effectiveness: | | Highly Effective |
| Side effects: | | Moderate Side Effects | | |
Treatment Info |
| Condition / reason: | | Fibromyalgia |
| Dosage & duration: | | 6 grams divided into 2 doses (dosage frequency: twice at night 2.50- 4 hrs apart) for the period of 1 year |
| Other conditions: | | Chronic Fatigue syndrome |
| Other drugs taken: | | none | | |
Reported Results |
| Benefits: | | For the first time in years I woke up without widespread flu like pain throughout my body. I woke up feeling rested, awake, alert. Some days were still worse than others, but overall a dramatic difference. I could function throughout the day, wasn't almost falling asleep all the time. If work got crazy and I had to pull 14-16 hrs - which was quite frequent - I didn't get immediately sick. I actually flew on planes multiple times without getting sick. I used to blink and get sick because my system was so run down despite many hours of sleep a night. When I take xyrem I need only 6-8 hours of sleep and I would wake up and feel great throughout the day. It was an absolute lifesaver for me. |
| Side effects: | | I had a moderate number of side effects that were bothersome but not serious: Oily skin and hair, acne was worse in the beginning, excessive night time sweating - i would wake up drenched every night, acid reflux - this was on and off - tension and anxiety was increased during waking hours. I had teeth sensitivety that developed after starting the drug, rapid pulse (this was weird but it was never a bother), I lost a few lbs and I could eat whatever and not gain much weight. My testosterone levels went way high - not high enough to turn into a boy, but high enough to grow more body hair in places I didn't want and had some hair loss at the temples. I also had problems with short term memory, though I did before when I was in a fibro-fog too. So off the medicine I have a heck of a time still because it is back to fibro fog. It is a shame because i used to have a great memory. |
| Comments: | | I would take 3 gms before bed. Wake up 2.50 to 4 hrs later for second dose. It was easy to wake up, many times I would wake up on my own. Sometimes I would try to wake up too early and would just sleep through my alarm and then wake up closer to the 4 hr mark. If I didn't have a busy job it would just be ideal to try to get closer to 8 or more hrs of sleep every night. That was not always practical for me. I started off at the 3 gms dose twice per night and never had to change. Sometimes, depending on the time of month I got less sleep with the dose - i would awake after only 2.5 hrs later and get around 5 hrs of sleep a night. Depending on where it was with my cycle, sometimes I couldn't wake up so I would lessen my second dose to 2.25 gms so I could wake up at 4 hrs after the dose. |
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| | Xyrem review by 35 year old female patient | | | Rating |
| Overall rating: | | |
| Effectiveness: | | Highly Effective |
| Side effects: | | Moderate Side Effects | | |
Treatment Info |
| Condition / reason: | | Narcolepsy |
| Dosage & duration: | | 3 ml and 4.5 ml (dosage frequency: 2x) for the period of One year |
| Other conditions: | | Depression/anxiety |
| Other drugs taken: | | Zoloft, Provigil | | |
Reported Results |
| Benefits: | | Xyrem has been life-changing for me and more than I could have ever hoped for. I spent most of my life completely exhausted and desperately tired. The worst part was, I always just thought I was lazy. Even after I was diagnosed, and was on Provigil (I was taking Provigil only for years before Xyrem)I still questioned if I really had a sleep disorder and thought that perhaps I was just lazier than everyone else. Now that I take Xyrem, I know that I really do have a sleep disorder because Xyrem has changed my life so much. I could have never imagined how much better and easier life is with a good nights sleep. Without Xyrem, I spend most too much time in REM sleep. I would dream constantly, beginning almost immediately after I would fall asleep. Almost every morning I would wake up and still be in a dream. Xyrem forces me into NREM sleep and it has made all the difference for me. |
| Side effects: | | Im sure it causes night sweats and significant weight loss. Other side effects that may or may not be related that I experience (although I also started taking it after the birth of my first child and may be related to that rather than the Xyrem)were receeding hairline, short term memory impact, some decrease in cognitive function such as difficulty with word recall, following a more complex line of reasoning, etc.., and increased anxiety. Even given the side effects, my life is so much better now that I am not so exhausted and I can't imagine going back to life before Xyrem. |
| Comments: | | 1 dose right before bed and another 3-4 hours later. |
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| | Xyrem review by 39 year old female patient | | | Rating |
| Overall rating: | | |
| Effectiveness: | | Ineffective |
| Side effects: | | Mild Side Effects | | |
Treatment Info |
| Condition / reason: | | unrestful sleep, narcolepsy? |
| Dosage & duration: | | 3g (dosage frequency: 2 times a night) for the period of 2 weeks |
| Other conditions: | | insomnia |
| Other drugs taken: | | none | | |
Reported Results |
| Benefits: | | I sometimes wake up refreshed although with xyrem I only sleep for about 5 hrs every night |
| Side effects: | | Night sweats. waking up too early. Getting unrefreshed sleep every other night |
| Comments: | | I have been taking Xyrem for about 2 months. I sleep about 5 to 5 1/2 hours every night. I wake up between 3 to 3 1/2 hour after the 1st dose and then I sleep for about 2 to 2 1/2 hours after the 2nd dose and am unable to fall asleep. The weirdest thing is that I get a refreshing sleep every other day. On the days that I wake up exhausted, I am barely able to make it through the day and am hungry all the time. The next night, I usually sleep well and have a better day there after. I am going to stop taking it and I am going to explore other options such as Rozerem or Trazodone |
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| | Xyrem review by care giver of 55 year old female patient | | | Rating |
| Overall rating: | | |
| Effectiveness: | | Considerably Effective |
| Side effects: | | Extremely Severe Side Effects | | |
Treatment Info |
| Condition / reason: | | trouble sleeping at night, tired during day |
| Dosage & duration: | | once when went to bed at 9:30,later at12 (dosage frequency: every night) for the period of a month |
| Other conditions: | | none |
| Other drugs taken: | | none | | |
Reported Results |
| Benefits: | | The patient did wake up more refreshed in the morning and didn't have to take the usual hour - 2 hour naps after work. They didn't feel tired during the day anymore |
| Side effects: | | The treatment had very severe side effects : Extreme confusion - getting lost on the way home from work, mixing days up, not remembering how to do easy tasks like checking email. Emotional Changes - she would say "I think I am crazy" and cry. |
| Comments: | | Everything noteworthy has been described above. |
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| | Xyrem review by 32 year old female patient | | | Rating |
| Overall rating: | | |
| Effectiveness: | | Highly Effective |
| Side effects: | | Moderate Side Effects | | |
Treatment Info |
| Condition / reason: | | Narcolepsy/Cataplexy |
| Dosage & duration: | | 3.0 g (dosage frequency: twice at night) for the period of 2 months |
| Other conditions: | | none |
| Other drugs taken: | | none | | |
Reported Results |
| Benefits: | | Before taking Xyrem I had to take a daily nap to feel refreshed. I had vivid hallucinations and I had to control my emotions.I would also get up to use the restroom approximately 10 times at night. Since i started taking Xyrem, I stopped taking those daily naps, no more hallucinations and I am able to laugh;cry more with less muscle weakness. Eventhough I only sleep for 6-7 hours max, I wake up feeling refreshed. |
| Side effects: | | When I take the first dose I noticed that I dont have trouble falling asleep. When I take my second dose 3-4 hours later,I am super dizzy. If I need to use the restroom I have to hold on and hurry back to bed. |
| Comments: | | I take my first dose (3.0 g) around 11 pm. take second dose around 3 am. I wake up like around 6 am. I want to stay in bed for more but cant. I am not sleepy. There are mornings were I am still feeling groggy, and by noon i would be okay to do my daily chores. |
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| | Xyrem review by 32 year old female patient | | | Rating |
| Overall rating: | | |
| Effectiveness: | | Moderately Effective |
| Side effects: | | Moderate Side Effects | | |
Treatment Info |
| Condition / reason: | | Narcolepsy, Fibromyalgia |
| Dosage & duration: | | 6mls. per night (dosage frequency: daily) for the period of 3 Years |
| Other conditions: | | Depressio, anxiety |
| Other drugs taken: | | Tramadol | | |
Reported Results |
| Benefits: | | Woke up feeling a little less like a zombie, No more insomia. |
| Side effects: | | Out of sorts, falling if I get up when medication has taken affect. |
| Comments: | | I take this medication for severe narcolepsy. It has helped with the feeling of not sleeping at all when I would wake up the next morning. However, if you do not get into bed and STAY for about 3 hours you can fall and do things you don't even realize you are doing. I got up to use the bathroom a few times on this medication and once I fell into the bathtub and also have fallen asleep on toilet if I have gotten up to use the bathroom. It can take affect VERY quickly if you have an empty stomach. There was a time I thought I had at least 15 minutes before it put me to sleep but I hadn't eaten much and it kicked in in 5 minutes. I fell asleep talking to my Fiance. It literally knocks you out like when you are put under anesthesia for surgery. It can be very dangerous but it is quite affective for helping you sleep and go into the refreshing cycles of sleep. |
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| | Xyrem review by 40 year old male patient | | | Rating |
| Overall rating: | | |
| Effectiveness: | | Highly Effective |
| Side effects: | | Mild Side Effects | | |
Treatment Info |
| Condition / reason: | | Insomnia |
| Dosage & duration: | | 6g nightly (3.25/2.75) (dosage frequency: nightly) for the period of 3 months |
| Other conditions: | | Depression & Anxiety |
| Other drugs taken: | | None | | |
Reported Results |
| Benefits: | | After suffering with chronic insomnia for the majority of my adult life, and after all of the popular sleep meds failed, I found Xyrem and it has changed my life. I am now in control of when I go to sleep and when I wake. The depression (Beck Index: 28) vanished after 3 weeks of treatment (Beck Index: 5). Anxiety has also abated. Loss of fat, increase in muscle size and strength. Improved energy. Improved interaction with friends and family. |
| Side effects: | | During the first 2 weeks there was stomach irritation, increased sweating at night, and diminished appetite. All have abated now. |
| Comments: | | I take 3.25g at bedtime, usually 10:30 PM. This normally produces sleep until about 2:00 AM. I then take another 2.75g dose and sleep until 5:30 AM. On average, I get 5.5 to 7 hours of sleep and it is the best sleep I have ever known. I no longer stay awake for days on end and I never have to come home on my lunch break to nap.
With the exception of the outrageous price, Xyrem is an amazing treatment for insomnia. It is a shame that the media has turned such a wonderful treatment into an evil 'date rape drug'. |
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