Xyrem for Narcolepsy User Reviews (Page 3)

• Coc...
• Taken for 1 to 6 months
• August 10, 2018

"I've been taking Xyrem for about 6 months now. The first dose is 4.25, and the second dose is 5.0. I usually don't fall asleep for around 45 min after the first dose. It takes even longer for me to fall asleep after the second dose. I'm averaging 12% deep sleep. I don't eat anything past 7 and usually take the medication around 11, so I know that's not the issue. I recently started taking 150 mg Armodafinil, and my sleep has been worse, and I'm exhausted throughout the day, but this new medicine prevents me from actually being able to take a nap. Xyrem is my nemesis."

• Ser...
• August 4, 2019

"My 11 y/o son has narcolepsy with cataplexy and has been on Xyrem for 5 months. It's been a game changer, but it isn't perfect. The pediatric neuro sleep specialist had him start on a dose of 2.25, which was WAY too high and made him completely incapacitated and violently ill. We joined a Xyrem support group and started over at 1.25. We titrated up slowly in .25 increments until we got to 3 ml twice a night--at that point, he was sleeping 4 hours per dose. Any more led to him vomiting. Jazz Pharma recommends everyone be on a 4.5x2 maintenance dose, which is insane. We have great results on 3 ml x 2--he sleeps, doesn't nap at all during the day, and needs no stimulants. He has increased anxiety, but Lexapro helps with that as well as preventing his C. X isn't easy to take--someone has to help him wake up to take it at 1 a.m. and prevent him from going to the kitchen to eat/X munchies--but it's the ONLY thing that has allowed him to get restful sleep."

• Anonymous
• June 21, 2009

"This medication has allowed me to have a life now that I am not forced to sleep 14 hours a day. While it does do wonders, it still in most cases isn't a complete cure (at least not for me), and I take stimulants to maintain a wakeful state."

• stt...
• July 19, 2009

"I had about 3 years without a full night of sleep. Once I started Xyrem, my sense of being tired was gone. I was also taking Provigil. Xyrem was used for the cataplexy issue and the restless leg syndrome. The downside to Xyrem is that it caused sleep apnea, of which did not make my wife happy, and after 2 months of using the mask and machine, it was not worth being on Xyrem. Also, it had interactions with other medications."

• Anonymous
• Taken for 1 to 6 months
• May 26, 2012

"I love this medicine! I am pretty young and had never had to take medicine before, my doctor started me on Nuvigil, but it gives me a headache every day. After a month, he started me on Xyrem. At first, it was too low a dose (1.5 grams), and I felt like I hadn't slept at all, but then he upped it to 3 grams, and I don't even have to take the Nuvigil anymore. I can get 8 hours and stay awake all day, I do get pretty sleepy after eating, but that is nothing compared to not having any kind of medications to help. I do feel sick if I wake up too early, or if I wake up on time, it takes an hour before I can stomach food."

• Sas...
• Taken for 10 years or more
• January 2, 2023

"I was diagnosed in 2006 with narcolepsy-cataplexy and obstructive sleep apnea. I began taking Xyrem in late 2008. Because I also had OSA, I was required to use a CPAP machine while taking Xyrem, which was vitally important for my safety and success. I immediately began sleeping and had a significant reduction in daytime sleepiness. Not only that, but the weight I had accumulated from a 14-16 year sleep debt began melting off of me because I was finally getting deep sleep. You must allow a minimum of 2-3 hours between your last meal and bedtime, otherwise, you will not sleep well. I also made nutrition/lifestyle changes like consuming a very low carb/ketogenic diet (carbs put me to sleep). Over time, I was able to reduce my dosage. I have taken Xyrem for 14 years, all the while living a normal life, raising my children, earning two college degrees, and enjoying a successful career. I am so thankful for the impact Xyrem has made on my health and life. Thank you."

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

"Worst drug ever. Some nights I wouldn't even sleep, I would be high and euphoric while I had to wake up at 5:30 a.m. to work in the hospital. Severe withdrawal 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 were anxiety and depression until I called the hotline over and over. Even my doctor 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 a daze for a whole year."

• Sti...
• March 3, 2011

"Just started my 6th month of Xyrem and not sure it is doing anything except keeping me awake every other night, giving me the munchies, waking me up (if I slept), freezing, and decreasing the effectiveness of my Adderall up to 60 mg 2x day, was taking 1/2 that prior to starting. 1st 2 months complete exhaustion, facial pain, sinus pain, and just miserable."

• Chr...
• December 2, 2019

"It was frightening. I had a psychotic episode. Never had an experience like that in my life. Made me so depressed. I cried and cried. I asked another doctor if she’d ever prescribed it. She said once, and her patient had a psychotic episode."

• Mom...
• January 25, 2020

"Been tired since high school. Diagnosed last year at 37 years old with 5 kids ages 17-2. I’m post-gastric bypass 12 years ago. Hit or miss some nights work, others don’t. After 1st dose, 3 hours sleep, and 2nd dose, lucky to get 2 hours. My 15-year-old son has narcolepsy too. A little more sleep than me, but hard to get him up. He is still tired during the day as well. I have a new med called Sunosi if I need it during the day, but my heart races too fast. I’m going to try not eating 3 hours before bed, as some have said. Xyrem also works better the colder it is, so going to try an ice pack in the lunch box next to bed for the 2nd dose. Weird dreams after waking after 2 hours on the 2nd dose. Nothing is a miracle drug, but it gives me some relief."

• Me ...
• March 10, 2016

"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."

• Sle...
• June 5, 2020

"Xyrem was more of a last resort drug for me, as it's not approved for use in IH (Idiopathic Hypersomnia) and also the fact that I'm being treated for anxiety and bipolar II. Modafinil and Vyvanse helped me at least stay awake for a good chunk of the day, but actually waking up was basically impossible. I could set an alarm at 8 a.m. and snooze through all the alarms. My brain was literally craving for me to stay sleeping, it was horrible. With Xyrem, even if I still feel sleepy enough to fall asleep after my alarm goes off, I still hear the next one go off and not have that desperate need to go back to sleep. It caused me to be able to lower my stimulant doses. I'm going up 0.25 g every 2 weeks until I hit 9 g total. The higher the dose, the more refreshed I feel. Side effects for me were muscle twitching in my arms and legs, which did go away when I started increasing my potassium intake and taking magnesium twice a day to balance my electrolytes since Xyrem is literally drinking sodium-and a lot of it!"

• Sno...
• April 24, 2020

"I’ve been on 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 an 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 retaliates, and when I go back to take it 3-4 hours after dinner, I get to sleep just 2 hours with the first dose and maybe 3 hours with the second dose and wake up very tired. I tried skipping dinner and stopping eating at 2 PM, and again, it worked in the beginning, but then my body adjusted. I guess I’ll just continue to struggle with being tired during the day. Sunosi causes my heart to race, and I couldn’t tolerate it."

• wou...
• Taken for 1 to 2 years
• December 28, 2015

"I have had narcolepsy ever since I can remember. Instead 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 will fall asleep. I can't drive more than 10 mins, even if I manage to keep my eyes open, I start seeing double. It's been a huge struggle that most people don't understand or write off as laziness or being too busy. I have so many crazy stories of things I have fallen asleep doing or things my children have done while I unintentionally fell asleep. Stimulants would help the first couple of days. Day 4, I might as well not even take 1 or 2 or 3 or 4 because I would still fall asleep. Xyrem has helped, but I still fall asleep all day. Currently, I have been taking it for 1 year, thinking of increasing."

• Spa...
• Taken for 5 to 10 years
• April 5, 2019

"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."

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

"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."

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

"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."

• MrM...
• May 19, 2017

"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."

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

"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 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

"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

"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

"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

"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."

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

"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."