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3.8 Overall Rating

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Most voted positive review

33 People found this comment helpful

I'm 28, was diagnosed with Narcolepsy and EDS 3 years ago. I have tried nearly every stimulant prescribed and finally got to this. I take 3.75x2 and it works great. I have done tons of research on this drug. FYI, this drug was used by weightlifters in the 80's as 90's as a fat burner. It boosts your metabolism while on it which is why some people get crazy hungry when on it. To alleviate...

Most voted negative review

12 People found this comment helpful

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 ...

Shared reviews and ratings

carmamer926 | 45-54 | Female | On medication for 2 to less than 5 years | Patient
1/31/2011
Condition: Recurring Sleep Episodes During the Day
Overall rating 4.0
Effectiveness
Ease of Use
Satisfaction

I stay awake longer when I take Provigil in the daytime and in the evening as well.

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SleepyRenee | 55-64 | Female | On medication for 1 to 6 months | Patient
1/30/2011
Condition: Recurring Sleep Episodes During the Day
Overall rating 4.3
Effectiveness
Ease of Use
Satisfaction

In 2006, I was diagnosed with Upper Airway Resistant Syndrome (UARS) and started using a CPAP. Fast forward to 2009 - multitude of symptoms & issues - 9 months after completing chemo & radiation. Severe cognitive & memory issues, trouble falling asleep w/daytime sleepiness, and moving body aches/pains, were just a few. 2nd sleep study showed Idiopathic Hypersomnia w/severe Excessive Daytime Sleepiness. Rheumy diagnosed fibromyalgia. Started Xyrem (Xy) 2.25gm 2x/night. Fibro pain improved & EDS improved within 1st week. Still took Provigil & Ritalin during day. Have had paralysis, but my mistake for not going to sleep right after taking Xy. So important to turn off lights & not watch tv in bed after taking 1st dose. Mistake - Changed anti-depression (AD) meds same time increased Xy to 3gm. Stopped Xy for 2 wks after heart palpitations & high BP. Went into severe depression (already depressed), increased anxiety & agitation. Too many meds; stopped all except for AD. Due to Rx sensitivity, now slowly increasing Xy dosage and new AD. Despite all of this, I am very pleased with Xy! 75% better in cognitive/memory & fibro pain. I no longer set alarm for 2nd dose as I usually wake 3-4 hrs after 1st dose. Hoping that 9gm/night will eliminate all EDS and amphetamine usage.Read More Read Less

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aitib | 55-64 | Female | On medication for 2 to less than 5 years | Caregiver
1/24/2011
Condition: Other
Overall rating 4.0
Effectiveness
Ease of Use
Satisfaction

My husband has taken Xyreme for sleeplessness from pain for years. The drug works great for him. However, he is impossible to wake. He gets up mid-night to go to the bathroom, half sleeping and half jerks awake. He has hurt himself; broken his front teeth, black eye, banged head, bruises on legs. The cost is $3,500 per month!

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GRANDBUBBA | 65-74 | Male | On medication for 6 months to less than 1 year | Patient
1/24/2011
Condition: Recurring Sleep Episodes During the Day
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

Mine was NOT just handed out, and the MD did not just wash his hands of my case. I underwent extensive testing and two sleep studies. I had tried Ritalin, Adderall, up to SIX Amphetamine tablets a day, all to no avail. You name it and I have taken it. I have had several wrecks, one even on Interstate 20. I do not even need the pillow alarm clock that the company furnished because I wake up at almost the exact time every night for the second dose. It is there by my bed ready for me to take. I wake up at 6:30 AM and am wide awake. I jump out of bed and am ready to go. Previously, I slept until about 11:00 AM and then took long naps all day long. I was afraid to drive anywhere. All of the people at the company are so very nice, genuine, and gracious. It is expensive, about $1,600.00, but with my insurance I have to pay only $40.00. I am so sorry to read about the people that have to pay the full amount. That is a disgrace in The United States of America. I still have 1022 characters left, and I could use everyone of them telling of my wonderful experiences, but it is 11:00 PM and I must run and take my first dose and start sawing logs. Pleasant dreams to all of you that take it, and don't let the bed bugs bite. God Bless.Read More Read Less

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Anonymous |
1/23/2011
Condition: Other
Overall rating 1.0
Effectiveness
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childprod154 | 35-44 | Female | On medication for 1 to 6 months | Patient
10/15/2010
Condition: Other
Overall rating 4.7
Effectiveness
Ease of Use
Satisfaction

After being in hospital 3x for extreme insomnis (awake 7 days +) no other meds would work. A sleep clinic presc. this and it was the 1st x in my life I slept without being drugged into a near coma. Dose needed only 4.5 1x a nite. I sleep all nite. My health is increasing so that I can return to working. Except insurance and all PA programs have rejected us. Cost is $1600 a month. We appealed to ins. and to the pharmacy but was told I would have to divorce my husband and apply for disability in order to qualify for assistance. My husband has a job but there's no way we can afford $1600 a month for 1 medication. So now I no longer take it - purely money and red tape issues.Read More Read Less

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Anonymous | 25-34 | Female | On medication for 2 to less than 5 years | Patient
10/9/2010
Condition: Muscle Weakness associated with Sleeping Disease
Overall rating 4.7
Effectiveness
Ease of Use
Satisfaction

I have narcolepy, along with cataplexy (muscle weakness with emotions)- Xyrem is a wonder drug for me. Have been on it for over 4 years. Before xyrem I would walk around wondering what was wrong with me, knees buckling when laughing, head felt like it was in a bubble, only to be diagnosed with narcolepsy about a year later. Started on xyrem immediately and it worked right away.I was going through all of my sleep cycles, rather than immediately to REM, and feel refreshed every morning. Buckling knees ceased, and i praise Xyrem to my sleep doctor every time I visit. Since it is liquid, kind of a pain to get it ready at night, but the outcome and results are well worth the minute it takes to get it ready!!!Read More Read Less

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Anonymous | 45-54 | On medication for 6 months to less than 1 year | Patient
8/19/2010
Condition: Recurring Sleep Episodes During the Day
Overall rating 4.0
Effectiveness
Ease of Use
Satisfaction

I have been taking this medicine for Narcolepsy for 8 months. At first it was a god send. I have never slept so well in my life. It was incredible. Then I started sleep walking. One night, I woke up holding the front door open. I was in my pajamas and the dogs ran away. Another night I woke up in my basement, standing up with my nose pressed to the wall. What a shock to wake up and see a wall in front of your face. And the stranger thing was that I woke up several times at the front door and in the basement but immediately fell back asleep, standing up. I must have done that 5 or 6 times before reality finally sunk in and I realized what I was doing. Kinda scary but I am still using it cause I love the good night sleep.Read More Read Less

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sleepysteppe | 45-54 | Female | On medication for 6 months to less than 1 year | Patient
8/10/2010
Condition: Recurring Sleep Episodes During the Day
Overall rating 3.0
Effectiveness
Ease of Use
Satisfaction

I was diagnosed with narcolepsy & cataplexy about 20 yrs ago. I've had varying levels of success with everything from Ritalin to a combination of Adderall, Provigil, and Xyrem. I have been able to reduce the amount of adderall taken daily. For a while I felt much more alert and wakeful, but I'm now getting more frequent daytime episodes. I'm hoping this is just a phase.

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Callie | 19-24 | Female | On medication for 1 to 6 months | Patient
8/2/2010
Condition: Other
Overall rating 4.7
Effectiveness
Ease of Use
Satisfaction

I've been takin Xyrem for about 4 month now for Narcalepsy... I stared at the lowest dose and worked my way up. When it got to where i was taking 9 grams a night, i worried because it was hard to wake me the first hour after takin a dose, so i asked to be moved down to 8 grams, just to ease up ssome. since doing so,i fall asleep about 30 min after my doses, and sleep well. I've had no seriously bad side effects, but i am also very careful with my meds. I make sure im done eating up to 2 hours before taking my medicine, i ALWAYS take my medicine and go straight to bed. NEVER EVER take it with alcohol... and to be honest? I've stopped drinking AND smoking completely. just decided to put the cigs down one day and it was easy. i feel healthier and happier. i have energy to burn, and im AWAKE!!!! 8 hours and i can stay awake all day! this can work for yu if you respect this drug and simply ease into it, pay attention to effects, and talk to your doctor. and if it doesnt, it's just not for you.... Read More Read Less

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cienega2011 | 13-18 | Female | On medication for 1 to 6 months | Patient
6/29/2010
Condition: Muscle Weakness associated with Sleeping Disease
Overall rating 4.3
Effectiveness
Ease of Use
Satisfaction

started off at 3mg increase to 4.5mg with better results -

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Anonymous | 45-54 | Female | On medication for 1 to 6 months | Patient
6/29/2010
Condition: Other
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

Xyrem has been a God send for fibromyalgia symptoms. Give it some time to help and if the side effects are bearable, most will go away. Check with manufacturer for help with its cost, if needed.

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Sleepywoman | 45-54 | Female | On medication for less than 1 month | Patient
6/16/2010
Condition: Recurring Sleep Episodes During the Day
Overall rating 1.7
Effectiveness
Ease of Use
Satisfaction

Scary stuff,if it works it can be a god send, but if not you may loose your mind, literally. I want to warn anyone NOT take this if they even suspect they may have manic depression. I was not diagnosed with it when I took Xryem but I went in to a full manic episode and was hospitalized for a week, it took me months to fully come down. I look back at my life and now I can see that yeah sometimes I was more energetic than others but nothing out the ordinary like this. I thought I truly could heal people with mind and was hyper times ten. The first two weeks on it were great I finally was able to sleep pain free and woke up with energy. I have found out that many people have said they experienced at least some euphoria that made them think they could quit the pain meds and go back to work. Read More Read Less

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laurieNC | 45-54 | Female | On medication for 1 to 6 months | Patient
5/12/2010
Condition: Other
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

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.

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gigi | 65-74 | Female | On medication for 5 to less than 10 years | Patient
5/7/2010
Condition: Other
Overall rating 4.7
Effectiveness
Ease of Use
Satisfaction

I was not getting REM sleep at night, so I would wake up more tired that I was when I went to bed and my body didn't get the restorative benefits of sleep. Xyrem has been a miracle drug for me. In reading the review, it seems to me that some people are not taking it correctly. You are supposed to go to bed IMMEDIATELY after taking the drug. It works for only 2.5 - 5 hours. When you wake up, you need to take a 2nd dose and go right back to bed. Dosage should begin very low and gradually increased by .25 grams. I take 2.5 grams twice a night. Read the literature!!!Read More Read Less

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GodBless | 19-24 | Female | On medication for 2 to less than 5 years | Patient
4/20/2010
Condition: Recurring Sleep Episodes During the Day
Overall rating 4.3
Effectiveness
Ease of Use
Satisfaction

I was diagnosed with Narcolepsy a few years ago. Now that I take this medicine, I receive the proper amount of sleep. Beforehand I was miserable with extreme sleepiness, but this medication has changed my life tremendously. Finally having a good nights rest in high school brought my grades back up to straight A's where they usually were. Since then I have gone on to college where I continue taking it. besides the inconvenience of having to keep it locked up, I don't think I could make it through college without it because college is hard enough as it is, if I had to go back to not sleeping correctly, I dont think I would make it through. The only downside of this medication is that it has heighten my sexual desires. I don't believe in sex before marriage and I really dont have a problem controlling that side of my life until I take that first dose. About 10 minutes after I take it it's like I have this overwhelming desire that wasn't there before I go into bed. Other than that, I have only had a positive experience with this medication. Read More Read Less

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Anonymous | 45-54 | Female | On medication for 1 to 6 months | Patient
4/17/2010
Condition: Recurring Sleep Episodes During the Day
Overall rating 4.3
Effectiveness
Ease of Use
Satisfaction

this medication has changed my life. it has made me feel so much better overall. my getting a great night sleep, and not sleeping durning the day, has made me feel healthier. i have more energy and feel a lot better. the side effects are not good. i just try to remember how much better i feel and put up with the side effects.

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Anonymous | 45-54 | Female | On medication for 1 to less than 2 years | Patient
4/9/2010
Condition: Other
Overall rating 4.0
Effectiveness
Ease of Use
Satisfaction

I can't afford the co-pays and I have my husband's insurance and Medicare.

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tired | 35-44 | Female | On medication for 2 to less than 5 years | Patient
3/2/2010
Condition: Other
Overall rating 3.0
Effectiveness
Ease of Use
Satisfaction

I have narcolepsy,I was on Xyrem for two years.My sleep issues improved,but within one to five minutes after consumption Diarrea!Also my physical fatigue during the day became unbearable.I was awake but was completely worthless.For two years I had sweat pouring out of my head to my feet,just while remaining still.I own hundreds of head covers,my hair was wet always.I decided that the Xyrem was the only thing that had changed in this time frame.I decided to stop and try something different for night time. Within two weeks my muscle fatigue diminished by half,and is still improving.It's been 6 months,no more sweating(I can actually style my hair,never thought that would be big news!My health is gradually improving, instead of going down hill.Be patient,but don't give up the fight, it's the quality of life,not just existing. Read More Read Less

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WARNING!!! | 45-54 | Female | On medication for less than 1 month | Caregiver
2/5/2010
Condition: Other
Overall rating 1.0
Effectiveness
Ease of Use
Satisfaction

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!!!!! Read More Read Less

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