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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. Learn more about Xyrem.

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Condition Avg. Ratings Reviews Compare
Cataplexy
9.4
   
4 reviews 1 medications
Narcolepsy
8.3
   
63 reviews 15 medications
Summary of Xyrem reviews 8.9 67 reviews

Reviews for Xyrem

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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 Sodium oxy dosage increased per instructions over time, had delusional, withdrawn effects and slowed speech. 4 months after starting sod oxy she was found dead in her apartment from a massive heart attack.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

2 users found this comment helpful.
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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

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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

1 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

3 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

4 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

1 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

13 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

8 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

5 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

3 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

9 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

14 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

16 users found this comment helpful.
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For Narcolepsy "Price gouging"

   
8.0

laserjock (taken for 1 to 2 years) December 31, 2015

11 users found this comment helpful.
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For Narcolepsy "I have had narcolepsy ever since I can remember. Insead of hanging out after school I would come home and go to sleep for the night. If I can sleep I do even if I only have 10 mins I well fall asleep. I can't drive more then 10 mins even if i manage to keep my eyes open I start seeing double. Its been a huge struggle that most people don't understand or write off as lazyness or being to busy. I have so many crazy stories of things I have fell asleep doing or things my children have done while I unintentionally feel asleep. Stimulants would help the first couple days. Day 4 I make as well not even take 1 or 2 or 3 or 4 because I would still fall asleep. Xyrem has help but still fall asleep all day. Currently been taking for 1 year thinking of increasing"

   
9.0

wouldsleepallday (taken for 1 to 2 years) December 28, 2015

11 users found this comment helpful.
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For Narcolepsy "After a few years of being diagnosed with narcolepsy and excessive daytime sleepiness, someone I knew who had narcolepsy as well recommended I ask my doctor about Xyrem. I am glad I did because about a week after taking it I started feeling normal again. I still have some "bad" days, but they are better than my best days prior to taking Xyrem. The only thing I don't like is their list of side effects being unclear. I have had stomach issues, loss of appetite, and significant weight loss. I was beginning to think something was wrong with me because these are not side effects listed on their website. It wasn't until I stated searching other forums that I am finding others having these same types of symptoms."

   
9.0

Jennafisch1285 (taken for 1 to 2 years) November 5, 2015

26 users found this comment helpful.
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For Narcolepsy "I have been on this medication for narcolepsy with cataplexy since 2013. It's the only drug to have helped me be able to keep driving, and be awake during the day when I'm supposed to and sleep so good at night. It's truly a blessing!!! The side effects are nonexistent for the most part. I highly recommend it!!!"

   
10

orders (taken for 2 to 5 years) October 25, 2015

25 users found this comment helpful.
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For Narcolepsy "I had been terrified to try this medicine because of the warnings. I was diagnosed with Narcolepsy w/ catalepsy 4 years ago Started Xyrem last year. Amazing. I take the full dose twice a night.I don't have to struggle to make myself get out of bed in am.Don't have have other symptoms I had before. take my daytime medicine,but don't need as much and I fall asleep (unintentionally) less frequently during the day. I usually take only one nap during the day. And I don't get sleepy driving like I used to. I take it right as I get into bed. I still can be awoken by loud sounds or my dog, which is good because I feared that I would not wake when needed. I had no side effects-they are over-blown. In the past, this was sold over the counter!!"

   
10

Rain eyes (taken for 1 to 2 years) August 22, 2015

31 users found this comment helpful.
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For Narcolepsy "I am 20, 21 in a few months, I am 150lbs and 5'6" and I am on 2.5g 2x per night with 3 hours between the two doses. I am on night #8 and I wanted to share my current experience for newly prescribed patients. I am very happy with this treatment! My quality of life has improved around 80% and I realize I still have a while to go before my body is completely adjusted to this new chemical. I do not take any ANY other medications, and I only eat fresh foods, no fast foods for years, and I have cut my sodium intake due to the high levels of sodium in xyrem. I have only had one B12 energy shot since my first day on xyrem. I have very vivid dreams (that feel like) all night. I sleep very solid and deep, and when its time for dose #2 my body knows."

   
10

baggy eyes (taken for less than 1 month) July 9, 2015

29 users found this comment helpful.
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For Narcolepsy "I'm still in the early stages of taking XYREM (week 6), but it has changed my life. I almost never take naps, and have had my narcoleptic episodes significantly reduced. I get around 8 hours of sleep every night, and can stay awake with no issues all day. Sometimes in the morning I feel a little groggy, but can't get back to sleep which i'm sure is just the medicine wearing off as it goes away shortly after I get up and about."

   
10

#cb# July 6, 2015

21 users found this comment helpful.
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For Narcolepsy "I suffered from narcolepsy due to spending too much time in the REM sleep stage. Xyrem regulates my sleep architecture, and now I no longer suffer from excessive daytime sleepiness."

   
10

Phunkyphotog (taken for 1 to 6 months) July 5, 2015

19 users found this comment helpful.
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For Narcolepsy "I was diagnosed with Narcolepsy in the beginning of 2014 at the age of 42. Despite a clear diagnoses and despite struggling with this disorder for close to 37 years (first symptoms appeared when I was 5 years old in form of hypnagogic hallucinations and cataplexy) I was resisting my doctors recommend course of action which included first and foremost the use of Xyrem. I had like everyone else visited forums and was very concerned about the lack of success stories and of course the possible side effects. By the beginning of 2015 I came to the realization that I had not only completely exhausted myself but also all alternative routes of fighting my narcolepsy and therefore decided to try Xyrem. I was very nervous and the first few nights and days were difficult and fairly unpleasant as my body didn't appreciate the sodium oxybate. Both my doctor and the central pharmacy were very helpfully, but in the end it is oneself who has to get through it. After 5 days I started to experience what I most of the world would call proper sleep. I go to bed and take me dose and after 15 minutes fall asleep. 2-3 hours later I wake up by myself and take the second dose. Normally I wake a few minutes before the alarm goes off and I manage to get through the day without coffee (impossible a few month ago) and only 200mg of Modafinil. The night is no longer a continues row of dreams, but passes in the blink of an eye. There are a few rules that I feel are key to success. Don't eat 3 hours before going to bed. Don't drink anything put small amounts of water. Stay away from coffee after lunch. Stay away from chocolate and sweets after 5pm. Keep a diary of your progress or get yourself a Jawbone, Fitbit or some other tracking devise. And finally, go out and tell people of your success and visit a forum and leave feedback even when you don't have the time, because other people need to know that there are success stories."

   
10

Now I sleep May 12, 2015

72 users found this comment helpful.
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