Xyrem User Reviews & Ratings (Page 4)

• Kkb...
• Taken for 6 months to 1 year
• December 29, 2018

For Narcolepsy "My brother and I both took this medicine for narcolepsy. Started it the same day. Same dosage increased at the same rate. He would fall asleep within 20-30 seconds of taking his and me 45-60 minutes of walking around, zombie-like, talking weird, saying strange things, and talking in a nonexistent language (haha). We both developed ringing in our ears. After 8 months, I was done, my blood pressure was off the charts, my husband wasn’t sleeping because I made the comment about wondering how it would feel falling out of a 3rd story window (I don’t remember any of that). They said the ringing in my ears would stop once off the medicine. 6 years later, ringing still here. I would not recommend it to anyone. My brother went off after 6 months because of ringing, and insurance decided not to cover the cost for him. We had to have it overnight shipped directly to us."

• col...
• Taken for 2 to 5 years
• December 14, 2019

"I have taken Xyrem for insomnia (not narcolepsy) for the past couple of years. I only take it as needed, and I take it if I wake up and cannot fall back asleep (I do not dose it at sleep onset). This happens very often since I have nocturia (I awaken to urinate 4-5 times a night). The key takeaways: Xyrem will put you to sleep, and it is a deep sleep. However, Xyrem has horrible side effects. At first, it seemed like it energized me for the entire day. Pretty soon, however, the drug turned on me to the point that I feel terribly tired and anxious (anxiety is moderate to severe) the entire day. Tolerance builds very quickly to its potent but short-lived sedative effects, so I only take it twice a week. If you are desperate for sleep, take it (if you can find a good doctor), but be very careful about escalating your dose and watch out for side effects."

• MrM...
• May 19, 2017

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."

• Dog...
• Taken for 6 months to 1 year
• January 23, 2019

For Narcolepsy "My wife's experience with this medication had been horrible. I have seen her take this medicine, and within 15 minutes she is asleep. She is delusional and acts in a childlike manner also. She falls asleep standing at times and has had a few bad falls also. Recently, she fell in the bathroom and was up against the door, and it took me two hours to get her out. My wife has been experiencing delusions and paranoia, but she has become addicted to it also. I am now reaching out to doctors to help with all of this, and as of now, I have found zero help."

• Ten...
• Taken for less than 1 month
• January 28, 2021

For Narcolepsy "I have narcolepsy type 1 (w/ cataplexy). I believe my case is fairly mild, as I've not experienced the hallucinations, and I've never fallen asleep in the middle of talking or walking. I've been taking Xyrem for three weeks. The higher doses are definitely more effective than the lower. I don't feel more awake during the day yet, but I am sleeping solidly at night, no more waking up every 45 minutes, and less dreaming before I get to sleep. I'm still experiencing small cataplectic attacks, but I've seen where those aren't really impacted until you get to 9g a night. On the downside, if I wake up before the dose has run its course, I'll be buzzed or stone drunk and dizzy. I'm encouraged by other folks saying that those symptoms dissipate over time. So far, par for the course and sleeping well."

• All...
• Taken for 1 to 6 months
• February 8, 2016

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."

• Bsm...
• Taken for less than 1 month
• October 1, 2021

For Narcolepsy "I was so hopeful that this med was going to fix me. The taste I read was awful, but it wasn't too bad. Tasted like ocean water. I take psych drugs that are sedating and muscle relaxers and opioids, which had to be spread out 6 hours before taking Xyrem. That means ALL my sedating drugs have to be taken by 3 pm, which kind of sucks. Took the first 2.25 dose at 9 pm. Took a half hour to kick in. Fell asleep. Up by 11. Dang. I read you can take the second dose 2.5-4 hours after the first. So at 11:30, took the 2nd dose. Half hour wait again. 1 am rolls around, I'm WIDE AWAKE. I understand it takes some people time to titrate up, and with the low doses, it can be frustrating. But then around 3 am, I had 2 panic attacks, full body flushing, heart racing, severe impending doom feeling. The anxiety lingered throughout the next day. I tried it again on night 2, and the SAME things happened like clockwork. My doctor advised me to come off and said I must not tolerate the drug due to the anxiety. *Crying* back to square one."

• mad...
• Taken for 5 to 10 years
• November 30, 2023

For Narcolepsy "This medication is amazing. I'm astonished at how well I sleep and how well I wake up in the morning, often without an alarm clock for the first time in my life. Daytime sleepiness is greatly reduced when combined with additional daytime medication."

• 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?"

• Anonymous
• October 12, 2021

For Narcolepsy "I admit, I was greedy to feel better and not well-informed about the process of titration when I began this med; I followed the titration schedule but kept increasing the dosage even when my EDS improved and I noticed my anxiety was heightened. After my first night at 4.0x2, I had a full-on anxiety attack. Reduced the dosage to 2.25x2, another anxiety attack. I had to go off Xyrem for a painful month while getting on 10 mg/day of Buspirone, a non-sedating anxiolytic. Talked a lot with my sleep doctor, psychiatrist, and the pharmacists at ESSDS. Now I only take one dose of 3.0 when I wake up (on my own or to the alarm) in the middle of the night, between 2:30-3:30 am. I'm completely off the Ritalin I relied on to stay alert/awake. So grateful I found a dosage level that doesn't cause debilitating anxiety and wish I'd known to take more care through the titration process, stopping when my EDS was affected, not because the Rx notes on the bottle say to keep increasing."

• sec...
• Taken for 10 years or more
• February 3, 2025

For Cataplexy "Used for almost 20 years now. Love it, but on occasion, I have a night where I don't think it even worked. I like it and wish I knew why it costs so dang much. We feel guilty for using it. Bet it would be awesome in slow-release form. (Feel free to use the idea. I don't need credit, I need sleep.) I do really wish I could have a sit-down with someone about it. There are so many questions we have about usage."

• Fib...
• October 29, 2009

For Fibromyalgia "Xyrem got rid of my pain significantly, as well as the feeling of being drained. I felt as if I no longer had fibromyalgia. The side effects were difficult. Still trying to work with those."

• bjs...
• Taken for 1 to 2 years
• May 15, 2012

For Fibromyalgia "Better sleep, less pain."

• sus...
• Taken for 5 to 10 years
• January 6, 2016

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."

• Ell...
• January 7, 2018

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

• Phu...
• Taken for 1 to 6 months
• July 5, 2015

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."

• 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."

• Anonymous
• July 15, 2011

For Narcolepsy "I have been taking Xyrem for my narcolepsy for 6 months. It is wonderful to feel like a productive, normal person again."

• Sle...
• June 23, 2009

For Narcolepsy "Xyrem gave me the ability to return to work with the use of stimulants during the day. Stimulants alone did not work."

• Anonymous
• August 31, 2009

For Narcolepsy "Without Xyrem, I am a complete mess."

• Sou...
• Taken for 5 to 10 years
• August 15, 2019

For Narcolepsy "2 of 7 days in a week, this medicine works for me. Other 5 days, whole day I felt so annoyed and so angry that I cannot explain. 1 dose can sleep 2-3 hours and 2 doses like 1-2 hours."

• mis...
• January 10, 2013

For Narcolepsy "2.75 g x 2 every night for five years. Deeper sleep with dreaming not infrequent. No side effects whatsoever. I've not gotten used to the salt added during manufacture."

• Eda...
• July 3, 2018

For Narcolepsy "Xyrem helps me get restorative sleep."

• Cac...
• June 13, 2016

For Narcolepsy "I think the good of this medicine outweighs the negative."

• Anonymous
• November 13, 2008

For Narcolepsy "Truly life-changing for those with narcolepsy/cataplexy."