Xyrem for Narcolepsy User Reviews (Page 3)

• Sleep...
• Taken for less than 1 month
• February 27, 2018

"Have only been on this drug for a very short time (a few weeks). Thought I could share my experience so far for new prescribers. Besides having to eat dinner earlier in the night and having a bedtime at 20 years old this medication has been amazing. I take my first dose while laying in bed ready to sleep and the second 3 hours after that, Making sure I don’t eat anything 3 hours prior to first dose. I wake up around 4 hours earlier than I used to feeling ready for the day and very well rested. I have experienced very few side effects besides my limbs feeling numb for a few minutes after first dose and a pretty bad headache only right after I take my doses. I plan on increasing my dose as prescribed and really hope this stays as successful as it has been. Honestly feel like this has changed my life and I’m finally feeling like I get a normal nights rest every night."

• Coco
• Taken for 1 to 6 months
• August 10, 2018

"I've been taking Xyrem for about 6 months now. First dose is 4.25 and 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 150mg Armodafinil and my sleep has been worse and I'm exhausted through throughout the day but this new medicine prevents me from actually being able to take a nap. Xyrem is my nemesis."

• Seren...
• 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 pedi 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 the 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 hrs per dose. Any more led to him vomiting. Jazz Pharma rec's everyone be on a 4.5x2 maintenance dose which is insane. We have great results on 3mlx2--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 1am 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."

• wakeful
• October 1, 2009

"Xyrem works for me. I am able to wake up easily as this medication is wearing off. I notice feeling more rested with less daytime sleepiness. I believe Xyrem helps to facilitate REM sleep during the night, so there is less tendency to go into a dream state during daily activities."

• Julieo
• Taken for 5 to 10 years
• July 6, 2017

"Xyrem has been life changing for me. I tried several different stimulants but nothing helped me. I finally found Xyrem and felt like I used to. I hate that the cost is ridiculous but it has been the only thing that works."

• Still...
• 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 60mg 2xday, was taking 1/2 that prior to starting. 1st 2 months complete exhaustion, facial pain, sinus pain and just miserable."

• 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."

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

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

• 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."

• Me sh...
• 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."

• sttkl...
• July 19, 2009

"I had about 3-years without a full night 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."

• Sleep...
• June 5, 2020

"Xyrem was more of a last resort drug for me, as it's not approved for the 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 8am 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 0.25g every 2 weeks until I hit 9g total. The higher the dose the more refreshed I feel. Side effects for me was muscle twitching in my arms and legs, which did go away when I started increasing my potassium intake and take magnesium twice a day to balance my electrolytes, since Xtrem is literally drinking sodium--and a lot of it!"

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

"My brother and I both took this medicine for narcolepsy. Started it same day. Same dosage increased at the same rate. He would fall asleep within 20-30 SECONDS of taking his and me 45-60 mins of walking around zombie like talking weird, saying strange things and talking in a non existent 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 medicine. 6 years later RINGING STILL HERE. I would not recommend 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."

• Sassie
• 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."

• Momof...
• 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 yo 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 lunch box next to bed for 2nd dose. Weird dreams after waking after 2 hours on 2nd dose. Nothing is a miracle drug but it gives me some relief."

• Severe...
• 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 5:30am 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

"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

"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."

• MrMar...
• 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."

• Tenta...
• 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."

• Bsmom
• 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 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

"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

"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

"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."

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

"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. "