Sodium oxybate and Nausea: What Users Say

• sle...
• Taken for 2 to 5 years
• July 13, 2013

For Narcolepsy "This medicine is a life-changer. It has reduced my excessive daytime sleepiness by about 80%. I rarely have to take any daytime narcolepsy medicines. It has also stopped the hypnopompic hallucinations almost completely. I feel like I got my life back. I went from considering applying for disability to working full time with no accommodations. This medicine gave me my life back! Just be aware that it can take a good 6 months to adjust to it, find your therapeutic dose, and work off your sleep debt (from lack of deep sleep). I ended up being prescribed an anti-nausea medicine while I was titrating my dose in order to overcome the nausea at first. But now I can take it just fine. It's tough to adjust to but so worth it in the long run!"

• Txy...
• Taken for 5 to 10 years
• April 23, 2015

For Narcolepsy "I have been taking Xyrem for 8 years now, and only wish I had started sooner. The first 32 years of my life were spent suffering from undiagnosed narcolepsy and constantly being exhausted during the day. After finally taking myself to a sleep specialist, I discovered that, even though I would sleep at night, I was never getting any recuperative sleep. They started me on Xyrem (and methylphenidate ER during the day), and I feel so much better now. The cataplexy and sleep paralysis are gone! I sometimes wonder if I am building up a tolerance to it because it may take me an hour to fall asleep, but I love this stuff! I haven't had many side effects, except if I'm still awake after an hour and a half - then it's pretty miserable and nauseous."

• wan...
• February 16, 2015

For Narcolepsy "I have been diagnosed with narcolepsy, cataplexy, and fibromyalgia. I was on Provigil and Adderall, and still falling asleep. Doc started me on 2.5 mg twice a night. I was sleeping. At night only! I am on 3.0 mg now, and still taking the Adderall during the day. I am not falling asleep at work, and my cataplexy and hallucinations are almost nonexistent! I still get tired pretty early on in the evening, but I was starting to worry about my ability to continue working. It also seems to be helping with the pain. I get nauseous sometimes during the day, but have found that it's because I need to drink some water or eat something. I feel like the old me again. I just hope the insurance doesn't decide not to cover it."

• 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!"

• 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."

• 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)."

• 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!"

• Sur...
• July 5, 2016

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 Adderall 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-tailed 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."

• Me ...
• March 10, 2016

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."

• Mrs...
• Taken for less than 1 month
• March 2, 2022

For Narcolepsy "I’ve been on a single nightly dose for a little longer than a week and was sooooo happy to feel “normal.” I take it at 11 pm - 12 am and wake up 6:30 am - 8:30 am without an alarm. Excessive drowsiness greatly reduced. Side effects were feeling hot and a burning, aching feeling in legs. I was willing to live with that in exchange for being able to clean my kitchen and vacuum in the same day. But 2 nights ago, within minutes of taking the dose, on an empty stomach, I started feeling very nauseous and belching. Last night, after about 20 minutes, I spontaneously vomited 3 times and then only slept 4.5 hours. Why would this start after a week? I’m devastated. Has anyone else experienced this? Does it stop?"

• Jim...
• Taken for 1 to 6 months
• February 23, 2025

For Narcolepsy "I've been on Lumryz for the past 5 months or so. Plenty of time to build my opinion on the drug. I'll describe the pros and cons from my perspective, but do understand that each person will have a different experience. Pros: - Slightly reduces the likelihood that I have a sleep attack strong enough to knock me out. Cons: - On low doses, I get pretty bad brain fog in the morning if I try to do something mentally taxing, like conversing. On high doses (7.5g), the brain fog for the first few hours after waking up is so severe I can't bring myself to even go outside. For those concerned whether I'm sleeping enough, I am sleeping 6+ hours each night. - When I discontinued the medication for a few days, I found that I couldn't sleep without it anymore. Perhaps my body developed a bit of a dependence on it? Not sure, but it was scary. - Makes you feel really drunk and motion sick. - Tastes like grainy ocean water with a tinge of soap."

• Joj...
• Taken for less than 1 month
• March 13, 2019

For Narcolepsy "I had a bad reaction to Xyrem. Nausea, panic attacks, delusional thoughts, feeling like a bad hangover every day, depressed. I ended up in the emergency room, and I stopped taking this medication."