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User Reviews for Xyrem

The following information is NOT intended to endorse drugs or recommend therapy. While these reviews might be helpful, they are not a substitute for the expertise, skill, knowledge and judgement of healthcare practitioners in patient care.

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Condition Avg. Ratings Reviews Compare
Cataplexy
9.4
   
4 reviews 1 medications
Narcolepsy
8.0
   
72 reviews 15 medications
Summary of Xyrem reviews 8.1 76 reviews

Reviews for Xyrem

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For Narcolepsy "This medication might have ended up being effective for me if I could have tolerated it long enough enough to get to an effective dose, but I quit taking it because of the side effects. My blood pressure increased from 110/65 to prehypertension, up to 138/90. It also caused mild tachycardia (rapid heart rate). My normal resting heart rate is between 64 and 68. On Xyrem it was in the 80s and 90s the entire time. I also had anxiety in the morning hours, including s couple of panic attacks. I quit taking it when I became severely depressed."

   
3.0

80sMusicLover74 (taken for less than 1 month) October 20, 2018

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For Narcolepsy "I've been taking Xyrem for about 6 months now. First dose is 4.25 and second dose is 5.0. I usually don't fall asleep for around 45 min after the first dose. It takes even longer for me to fall asleep after the second dose. I'm averaging 12% deep sleep. I don't eat anything past 7 and usually take the medication around 11 so I know that's not the issue. I recently started taking 150mg Armodafinil and my sleep has been worse and I'm exhausted through throughout the day but this new medicine prevents me from actually being able to take a nap. Xyrem is my nemesis."

   
2.0

Coco (taken for 1 to 6 months) August 10, 2018

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For Narcolepsy "REM, REM, REM day and night, absolutely comatose 24 hours a day, terrible muscular weakness and fatigue, inability to think or move around actively for more than an hour or two on any day - all of this for two years. Then I began taking the low dose of Xyrem 12 days ago and my life is already turning around. I still get only five or six hours of sleep a night, but I'm no longer in bed all day. I can stay active for four or five hours now, and my creative juices have begun to flow again. Thank you, Xyrem, for saving my life (for I had almost decided to end it)!!!"

   
10

Dedeno (taken for less than 1 month) July 30, 2018

4 users found this comment helpful.
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For Narcolepsy "Xyrem helps me get restorative sleep."

   
9.0

Ed July 3, 2018

0 users found this comment helpful.
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For Narcolepsy "I have been on this medication for 10 years. It has changed my life. I recently had to be off of it for a week for some insurance prior auth issues and the difference was huge. I was basically useless during the day with increased fibromyalgia pain and daytime sleepiness. 10 years"

   
10

Depressed May 24, 2018

3 users found this comment helpful.
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For Narcolepsy "XYREM will ruin your life. I don't care how many people say it has helped them. You cannot maintain taking this drug for your entire life, it is not safe. "

   
1.0

Slick (taken for 2 to 5 years) May 15, 2018

5 users found this comment helpful.
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For Narcolepsy "I had to ramp up to the highest dose before it put me to sleep - before that, I'd be in a weird state but not asleep. When I did get to a dose that would put me to sleep, I would take it (10 pm), sleep for 2 hours and wake up (12 am). Then I'd have to wait an hour for the 3 hour minimum before I could take the second dose (1 am). Then I'd wake up after 2 hours again (3 am). I would be in a state I describe as somewhere between a panic attack and a hangover. I couldn't read or really do anything - I'd just have to sit there and wait for it to wear off around dawn. It didn't work for me."

   
1.0

MC (taken for 1 to 6 months) April 22, 2018

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For Narcolepsy "Have only been on this drug for a very short time (a few weeks). Thought I could share my experience so far for new prescribers. Besides having to eat dinner earlier in the night and having a bedtime at 20 years old this medication has been amazing. I take my first dose while laying in bed ready to sleep and the second 3 hours after that, Making sure I don’t eat anything 3 hours prior to first dose. I wake up around 4 hours earlier than I used to feeling ready for the day and very well rested. I have experienced very few side effects besides my limbs feeling numb for a few minutes after first dose and a pretty bad headache only right after I take my doses. I plan on increasing my dose as prescribed and really hope this stays as successful as it has been. Honestly feel like this has changed my life and I’m finally feeling like I get a normal nights rest every night."

   
9.0

SleepyAud (taken for less than 1 month) February 27, 2018

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For Narcolepsy "Diagnosed at 27 and changed my whole life using this drug.....never knew what life was."

   
9.0

EllatheCanadian January 7, 2018

4 users found this comment helpful.
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For Narcolepsy "My daughter was diagnosed with narcolepsy when she was 12. Severe and accompanied by cataplexy, hallucinations in REM within 90 seconds, all facets of sleep disorders seemed concentrated in her young body. She never got to drive a car. Narcolepsy dictated her quality of life. On methylphenidate, which increases heart rate, for 27 years, she convinced her Dr to help her get in a sodium oxybate program. Sodium oxy dosage increased per instructions over time, had delusional, withdrawn effects and slowed speech. 4 months after starting sod oxy she was found dead in her apartment from a massive heart attack. Accumulated effects from yrs of stimulants? A sudden jolt from sodium oxybate ? Congenital defect? She did not abuse meds. CAUTION"

   
1.0

Shakespeate November 3, 2017

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For Cataplexy "I have narcolepsy with cataplexy and also sleep apnea. I started taking Xyrem about 3 years ago, and the difference in my ability to function is phenomenal. No more hypnogogic/hypnopompic hallucinations, drastically improved cataplexy, very few episodes of sleep paralysis. And for about 5 minutes before it knocks me out, I get a buzz of epic proportions. Sadly, xyrem has gone up more than 800% in price. It costs over $5,000 per bottle, and I'm on 3 bottles per month. Unwanted side effects that I've experienced are, during titration (dose increased by Dr) 1. I had trouble breathing properly. 2. the first night of my highest dose (4.25) it knocked me out so hard that I wet the bed. 3. Wicked vocab. I swear a lot during a dose. idk why!"

Rizzamae (taken for 2 to 5 years) October 29, 2017

3 users found this comment helpful.
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For Narcolepsy "I tried this off-label because I was always waking up tired and never felt rested. I took 4 mL before bed. The results were incredible. Woke up exactly 4 hours later feeling alive and not exhausted for the first time in years. I've since been diagnosed with narcolepsy so I know why this medication was so effective for me. Unfortunately I can't afford it so my only option is dexamphetamine which doesn't help me much."

   
10

Sleepy Bill October 12, 2017

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For Narcolepsy "I am 29 years old and have had narcolepsy since I was 7. I started Xyrem after three doctors recommended it. 9g/night in 2 doses, & finally get the deep sleep I never had. I dream, but not the endless series of exhausting dreams that feel like memories, Nor dreams during the day! Some mornings I wake up feeling fantastic and motivated, some mornings I think, ‘just one more hour!’ and need a cup of coffee or tea to get started. I think that is what normal feels like. Hardest part is not eating 4-5 hrs before, bc I like to go to bed around 8:45/9:30pm. Basically I have my life back and wish I’d gone on Xyrem years ago instead of being afraid of side effects that haven’t even happened on max dose. Thank you, Xyrem, for giving me my life back!"

   
10

Sir Wakealot (taken for 1 to 6 months) October 6, 2017

7 users found this comment helpful.
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For Narcolepsy "Xyrem has been life changing for me. I tried several different stimulants but nothing helped me. I finally found Xyrem and felt like I used to. I hate that the cost is ridiculous but it has been the only thing that works."

   
10

Julieo21 (taken for 5 to 10 years) July 6, 2017

6 users found this comment helpful.
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For Narcolepsy "My experience with Xyrem started about 12 years ago. The first few months where very hard. If I moved after taking it, I would vomit. The headaches were almost unbearable and I lost weight, but after the first few months and 12 years later, the only side effects I have now are night sweats and I can keep that in control if I drink enough water throughout the day. I can't even remember my life before Xyrem but I know that it gave me my life back."

   
10

Cindy Sleeps (taken for 10 years or more) June 8, 2017

8 users found this comment helpful.
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For Narcolepsy "Narcolepsy with Cataplexy; overall very positive results for the past 10 years. Have had some severe side effects at random times, such as major cramping or very painful reaction if taken closer than 4 hours apart."

   
8.0

MrMartyP May 19, 2017

2 users found this comment helpful.
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For Narcolepsy "Fell asleep"

Astro Apple (taken for 1 to 6 months) May 18, 2017

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For Narcolepsy "I have mixed feelings about this medication. When you put aside all the side effects, it's great. It's doesn't quite put me to sleep as quickly as they say, but when I am asleep it is the best sleep I've had in a VERY long time! But sometimes I feel the side effects out way the sleep. If you have any kind of depression.. I would be very careful. The nausea can be very bad, my legs turn into jello, I can get very irritable, I don't have much of an appetite, and I have to take a stimulant in the morning for the grogginess. But even with all of that, I would still recommend this medication because it works. It definitely helps with narcolepsy and my cataplexy. I was very nervous about trying it, but I love my doctor for pushing me to try it!"

   
7.0

sleepymorgan0089 (taken for 1 to 6 months) December 1, 2016

14 users found this comment helpful.
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For Narcolepsy "More like Xyrem distress! What an awful medicine. It is expensive and it does not work. Don't waste your money. Find something else to help you sleep."

   
2.0

Sleepy in Palm Beach (taken for 1 to 2 years) September 19, 2016

5 users found this comment helpful.
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For Narcolepsy "My experience about xyrem is phenomenal. Going back, I can't imagine myself how I survived before this medication, comparing how I used to feel before taking the medication. I'm at least 70 percent feeling better. I read a couple suggestions on this website as far as not eating 2 to 3 hours before and not drink much water 5 hrs before, I will try them to see if I can get any improvement. So far my only issue is on the second dose, it wears off quick, it feels like I passed out for a couple hours and wake up to pee and that will be it but still can feel that heavy eyes just won't be able to fall asleep again."

   
7.0

Xyrem saves me (taken for 1 to 2 years) August 16, 2016

10 users found this comment helpful.
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For Cataplexy "I am 57 years old and have had some version of narcolepsy since age 30 or 35. I tried Nuvigil and then added Adderal but still had breakthrough narcolepsy and cataplexy. The cataplexy broke my foot a year ago and my wrist six months ago. This is the most amazing medication! I would go to bed at midnight and awaken at 10 or 11 in the morning. I would fall asleep for a cumulative 2 to 3 more hours during the day. I awaken between seven and 8 o'clock bright eyed and bushy tail to use my parents phrase. I am fully alert and have no further problems with sleepiness throughout the day. I am still experiencing occasional morning nausea and inappropriate diaphoresis or sweating for no reason. An ice pack at the back of my neck will break it."

   
9.0

Surreal2000 July 5, 2016

8 users found this comment helpful.
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For Narcolepsy "I think the good of this medicine out weighs the negative."

   
8.0

Cacky June 13, 2016

6 users found this comment helpful.
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For Narcolepsy "Xyrem does help me get rested enough so my daytime sleepiness is less.. And definitely helps with cataplexy. However, I just restarted it 5 days ago and I have experienced nausea, headache, sweating.. I really hope it subsides the longer I'm taking it."

   
8.0

Me shell March 10, 2016

10 users found this comment helpful.
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For Narcolepsy "For the last month I have been sick, very restless sleep, muscle spasm, vomiting for several hours with movement after meds have worn off. I had to stop using Xyrem this month because the same faulty batch I got in January, they shipped me again this month... I tried to call and complain about the side effects. Unfortunately the SDS Pharmacy isn't offering any solutions to fix or solve the issue that a lot more people are dealing with.... So disgusted with this company"

   
1.0

Allizon Alves (taken for 1 to 6 months) February 8, 2016

15 users found this comment helpful.
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For Narcolepsy "It saved my life. No more sleeping at my desk. I have had very little trouble with side effects. I learned to make sure 2 hours lapses after I eat before I take It so it will work."

   
10

susthib (taken for 5 to 10 years) January 6, 2016

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