Sodium oxybate for Narcolepsy User Reviews (Page 3)

• wak...
• 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."

• Sle...
• 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 the 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 the 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, I feel like this has changed my life and I’m finally feeling like I get a normal night's rest every night."

• Jul...
• 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."

• 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."

• Spe...
• Taken for 1 to 6 months
• July 15, 2024

"Coming from Xywav, I was ready to not have to wake up in the middle of the night for my second dose (which I missed fairly regularly). I love Lumryz and its one dose! Waking up just feels so natural now, and I feel great all the time since I'm not missing doses. I haven't had any problems with the large salt amount, I take Magnesium every night before bed. My blood pressure was usually 110/70 - 120/80, at first it bumped up to 145/75, but I take 2 garlic pills every morning, and it's back down to 120 or 130/70. I can't recommend this enough! I myself am covered by Avadel's patient assistance program since my insurance didn't cover it, hopefully it'll be easier for others to get it covered."

• 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."

• 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."

• 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."

• 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."

• Igo...
• Taken for 1 to 6 months
• May 2, 2024

"I've been on Lumryz for 2 months, and I am adjusting well. I have not experienced any real side effects. This is my first narcolepsy drug. I would say, on average, I'm sleeping about 7 hours per night without interruption. It took me about 3 weeks, but I am happy with the results so far. My days are much better."

• 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."