Xyrem User Reviews & Ratings (Page 4)

• Severe...
• Taken for 6 months to 1 year
• April 18, 2022

For Narcolepsy "Worst drug ever. Some nights I wouldn't even sleep, I would be high and euphoric while I had to wake up at 5:30am to work in the hospital. Severe withdraw as soon as it wears off leading to panic attacks and not to mention severe depression. Felt like I never woke up refreshed, I was in a mental fog all day until it was time to take it again and I built tolerance fast. Worst part the side effects never mentioned was anxiety and depression until I called the hot line over and over. Even my. dr never heard of that happening. My eyes had discharged, my pupils were huge and I even pointed it out to my doctor. Felt like I was in daze for a whole year"

• Snow...
• April 24, 2020

For Narcolepsy "I’ve been in xyrem for 3 years. It worked a little better in the first year but my body got used to it. It works well only if I take it on empty stomach after fasting for 48 hours. It is only on these occasions that I get enough sleep and wake up refreshed but then my body retaliate and when I go back to take it 3-4 hours after dinner, I get to sleep just 2 hrs with the first dose and maybe 3 hrs with the second dose and wake up very tired. I tried skipping dinner and stop eating at 2 PM and again, it worked in the beginning but then my body adjusted. I guess I’ll just continue to struggle being tired during the day. Sunosi causes heart to race and I couldn’t tolerate it"

• Sparky
• Taken for 5 to 10 years
• April 5, 2019

For Narcolepsy "I've been on Xyrem since 2011 and it is a game changer for me. I had fragmented sleep from narcolepsy for several years before my diagnosis and every night was agony. That said, Xyrem requires frequent adjustment of the two doses, since doctors have no way of knowing which combination of nightly doses works best. You have to experiment until you find your correct doses."

• colle...
• 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 4-5x/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-severe) the entire day. Tolerance builds VERY quickly to its potent but short-lived sedative effects, so I only it 2x/week. If you are desperate for sleep, take it (if you can find a good Dr.), but be very careful about escalating your dose and watch out for side effects."

• MrMar...
• 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."

• Tenta...
• 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."

• Bsmom
• 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 second dose 2.5-4 hours after first. So at 11:30 took 2nd dose. Half hour wait again. 1am rolls around, I'm WIDE AWAKE. I understand it takes some ppl time to titrate up and with the low doses it can be frustrating. But then around 3am 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 might 2 and the SAME things happened like clockwork. My Dr advised me to come off and said I must not tolerate the drug due to the anxiety. *Crying** back to square o"

• MrsH
• 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 11pm -12am and wake up 6:30am 8:30am 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 dose, on an empty stomach, I started feeling very nauseous and belching. Last night after about 20 minutes I spontaneously vomited 3x 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 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 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 2.30-3.30am. 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."

• maddy...
• 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."

• Fibro...
• 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 fibro. The side effects were difficult. Still trying to work with those."

• Slick
• Taken for 2 to 5 years
• May 15, 2018

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. "

• bjszj
• Taken for 1 to 2 years
• May 15, 2012

For Fibromyalgia "Better sleep less PAIN"

• susthib
• 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."

• Ellat...
• January 7, 2018

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

• Phunk...
• 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."

• Sourov
• Taken for 5 to 10 years
• August 15, 2019

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

• Jojo
• 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."

• Anonymous
• August 31, 2009

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

• Sleep...
• June 23, 2009

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

• miste...
• January 10, 2013

For Narcolepsy "2.75g 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."

• Edano
• July 3, 2018

For Narcolepsy "Xyrem helps me get restorative sleep."

• Cacky
• June 13, 2016

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

• Sleepy...
• Taken for 1 to 2 years
• September 19, 2016

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."