Sodium oxybate User Reviews & Ratings (Page 2)

• mfl...
• June 30, 2011

For Narcolepsy "I started Xyrem about 3 months ago, and I couldn't be happier. I tried Nuvigil, Wellbutrin, Ritalin, and Prozac, and nothing kept me from sleeping 14 hours a day with hallucinations and cataplexy. After just a few weeks, I was able to stay awake all day long, and I haven't had any cataplexy in the past two months. I also got to cut my stimulant use by 2/3 during the day. I was nauseated at first, but after a few weeks, it went away. I have also lost 30 pounds without trying after starting this medicine, even though it makes me hungry at night. I still have sleep attacks, but they are usually once every one or two weeks. I would much rather have that than every day!"

• sog...
• May 29, 2013

For Narcolepsy "Wish I had been prescribed Xyrem sooner! Amazing the difference I feel. The taste is horrible, but mixing with Crystal Lite lemonade makes it bearable. Was taking 30 mg Adderall 3x a day and still struggling to get through the day. Now I'm only taking 30 mg a day. I feel so much better."

• Jen...
• Taken for 1 to 2 years
• November 5, 2015

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 started searching other forums that I am finding others having these same types of symptoms."

• Anonymous
• November 30, 2011

For Narcolepsy "This has been the only medication that has worked to combat both my narcolepsy and cataplexy symptoms. Before taking this, I was just on high doses of stimulants, and even though they helped energy-wise, I still had massive brain fog, and when my stimulants wore off, my cataplexy got even worse. This stuff is a miracle, and I have no idea what I would do without it."

• Anonymous
• March 8, 2011

For Narcolepsy "I started taking Xyrem about four weeks ago. It is very easy to take, and since taking 4.5 g 2x/night, I know pretty accurately when I will wake up (midnight alarm is not needed). I am also taking Adderall 5-10 mg 2-3x/day, and I no longer feel tired and am very focused during classes. Since taking Xyrem, even at the highest dose, the only adverse side effect I have had is nausea if I don't go to sleep within 20 minutes after taking it. HIGHLY RECOMMENDED."

• ord...
• Taken for 2 to 5 years
• October 25, 2015

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!!!"

• Fla...
• October 5, 2009

For Narcolepsy "I have been taking Xyrem since it was in research. Then it was a powder that you mixed each night before bed. While it has changed my life for the better. There are some side effects. One is after starting just once I did wet the bed. I had been warned that this might happen. So with proper protection in place, no mess. One more side effect is intense hunger after taking the dose. Some people quit the study over that side effect. The price of Xyrem is so high. These are just my experiences, everyone is different. But for my narcolepsy, I have a new lease on life. One where I can pay attention and stay awake."

• 69a...
• Taken for 10 years or more
• January 19, 2015

For Fibromyalgia "Dramatically reduced pain, fatigue, daytime sleepiness, and fuzzy thinking. The last time I skipped taking Xyrem, I was unable to go to sleep all night. I am concerned about this should I need to quit taking it."

• Cin...
• Taken for 10 years or more
• June 8, 2017

For Narcolepsy "My experience with Xyrem started about 12 years ago. The first few months were 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."

• cba...
• July 6, 2015

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."

• Anonymous
• March 10, 2011

For Narcolepsy "I have been on this medicine for 4 months, and it is the first time that I can actually wake up without feeling tired. It had gotten to the point that I was falling asleep at the wheel and at work. Now I feel like a new man. My sex life has come back to the level like I am 20 years old. Great medicine."

• Joh...
• Taken for 1 to 6 months
• April 23, 2013

For Narcolepsy "Took my first dose Saturday night. Wow! What a difference the next morning. I was wide awake, alert, and hot to go to my work and my college lessons! As I write this, I have been on Xyrem for about three months and recently started having hand tremors occasionally. I noticed that one other person ('Anonymous') mentioned shaking; once in a while, my tremors are strong. Xyrem certainly has cured my severe narcolepsy, which began about a year ago without warning. I am glad to see that several people have been on Xyrem for years without any adverse side effects and no withdrawal symptoms when they stopped briefly."

• ksl...
• Taken for 2 to 5 years
• November 2, 2012

For Narcolepsy "I noticed a lot of complaints about nausea. Do not eat anything for at least 2 hours before you take it. When I first started taking it, I would wake up pouring sweat and throwing up. I finally figured it out, though. If I take my first dose at bedtime, I fight it and don't sleep. So what seems to work now is going to bed and a couple of hours later then take the dose (I always have to pee anyway)."

• Anonymous
• March 17, 2009

For Narcolepsy "Xyrem is life-changing. I have been taking a free sample of Xyrem for 4 weeks, and now, for the 1st time, I wake up feeling refreshed and awake. I no longer feel like a narcoleptic. Before Xyrem, each day I crawled out of bed with an indescribable level of exhaustion, and I reached for the Dexedrine pills just to drag through another day."

• sle...
• Taken for 1 to 6 months
• December 1, 2016

For Narcolepsy "I have mixed feelings about this medication. When you put aside all the side effects, it's great. It 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 outweigh 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!"

• Anonymous
• April 28, 2010

For Narcolepsy "The first couple of nights, I experienced horrible nightmares in which I could not awaken from until 2 1/2 hours later when my alarm finally sounded. The next week, my dosage was increased, causing me to experience severe weakness, dizziness, and vomiting. The third week, my dosage was again increased, and I experienced the inability to go to sleep. These side effects caused me to discontinue the medication."

• MCa...
• Taken for 1 to 6 months
• April 22, 2018

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."

• Anonymous
• May 4, 2009

For Narcolepsy "I have found this medicine to be extremely helpful, although I do have some side effects from it. I have been on Xyrem for about 4 months now. I wake up feeling better than I have in years, but I have a trembling feeling (like being very cold) on the inside of my body that lasts for about 1 hour, and my hands shake very badly for about 3 hours. Both of these side effects occur upon getting up in the morning. I will say I can tolerate the shaking because this medicine is truly amazing."

• Bro...
• Taken for 5 to 10 years
• July 18, 2020

For Narcolepsy "I tried Ritalin, Adderall, Adderall XR, but nothing worked very well for my narcolepsy. During the day, I always felt that I could fall asleep within 5-10 minutes if I wanted to, no matter what was going on. I switched doctors, and the new doctor prescribed Xyrem. For me, it has been life-changing! I can read books for hours without getting drowsy, which never was the case previously. The only issue is taking a dose in the middle of the night, as sometimes I can sleep through the alarm. I then have to reduce the size of the dose so I can get up when my 2nd alarm goes off. It works well-try it!"

• Tru...
• August 1, 2010

For Narcolepsy "Xyrem actually worked! For the first time in my life, I felt like a normal person. Then, the migraines to beat all migraines began. I was awake but in so much pain, and the only thing that helped at all was packing ice all around my head. I hoped the headaches would go away, but after a couple of weeks, I gave up. I didn't want to be awake with that much pain."

• Anonymous
• Taken for 1 to 6 months
• July 13, 2012

For Narcolepsy "I have been taking this medication for 2 months, and let me tell you how stupid I am. DO NOT EVER LEAVE YOUR MEDICATION IN THE HEAT OR HUMIDITY. I kept leaving my medication in my car because I didn't want my girlfriend's brother to steal it. When Xyrem is left out in the heat, it becomes less effective. If my narcolepsy is not treated, I become severely bipolar due to the lack of sleep. I almost had to go to the mental hospital before I read a note in my new package proclaiming Xyrem's ineffectiveness due to heat. Lo and behold, I took my new batch of Xyrem last night and felt decent this morning."

• Xyr...
• Taken for 1 to 2 years
• August 16, 2016

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

• Anonymous
• January 26, 2012

For Cataplexy "I've been taking Xyrem for about 6 years at 4.5 grams, 2 times a night. My doctor said I had the worst case of cataplexy he'd seen in his career! Xyrem, with 40 mg of Desoxyn and 150 mg of Effexor during the day, I have a life again! I still have to nap about midday, and I still won't chance a comedy club (the cataplexy still sneaks in once in a while), but I hope to someday. I found out the hard way to make sure you don't drink anything before taking because you will NOT wake up to pee until the dose wears off! A small price to pay when I consider what it was like before Xyrem."

• nar...
• August 19, 2014

For Narcolepsy "I'm on 2.5 mg twice a night. It puts me to sleep for two hours, but it's the best two hours of sleep I get. Unfortunately, I don't sleep long while on it, and I am wide awake after four hours for about two hours in the morning."

• Fib...
• March 2, 2013

For Narcolepsy "I was given Xyrem two months ago to help with narcolepsy with cataplexy along with fibromyalgia. I had an expectation based on what I was told it would do that I would instantly be falling asleep. It didn't happen. Minimal effects. My neurologist started me on 2.25 mg x 2 at night. When we discussed the situation on my next visit and I talked with the Xyrem nurse, this was common on this dosage. He increased it to 3.0 for the next six weeks. I am now seeing some results in sleep, cataplexy, and narcolepsy. He did tell me that he increases to maximum dosage at much slower rates than any doctors to lessen the side effects. To date, all I have had was a slight headache several days, which might or might not be related. So far, so good!"