User Reviews for Sodium oxybate to treat Narcolepsy
Also known as: Xyrem
Sodium oxybate has an average rating of 7.7 out of 10 from a total of 94 ratings for the treatment of Narcolepsy. 70% of users who reviewed this medication reported a positive effect, while 15% reported a negative effect.
Xyrem (sodium oxybate): “I was diagnosed with Narcolepsy in the beginning of 2014 at the age of 42. Despite a clear diagnoses and despite struggling with this disorder for close to 37 years (first symptoms appeared when I was 5 years old in form of hypnagogic hallucinations and cataplexy) I was resisting my doctors recommend course of action which included first and foremost the use of Xyrem. I had like everyone else visited forums and was very concerned about the lack of success stories and of course the possible side effects. By the beginning of 2015 I came to the realization that I had not only completely exhausted myself but also all alternative routes of fighting my narcolepsy and therefore decided to try Xyrem. I was very nervous and the first few nights and days were difficult and fairly unpleasant as my body didn't appreciate the sodium oxybate. Both my doctor and the central pharmacy were very helpfully, but in the end it is oneself who has to get through it. After 5 days I started to experience what I most of the world would call proper sleep. I go to bed and take me dose and after 15 minutes fall asleep. 2-3 hours later I wake up by myself and take the second dose. Normally I wake a few minutes before the alarm goes off and I manage to get through the day without coffee (impossible a few month ago) and only 200mg of Modafinil. The night is no longer a continues row of dreams, but passes in the blink of an eye. There are a few rules that I feel are key to success. Don't eat 3 hours before going to bed. Don't drink anything put small amounts of water. Stay away from coffee after lunch. Stay away from chocolate and sweets after 5pm. Keep a diary of your progress or get yourself a Jawbone, Fitbit or some other tracking devise. And finally, go out and tell people of your success and visit a forum and leave feedback even when you don't have the time, because other people need to know that there are success stories.”
Xyrem (sodium oxybate): “After trying almost every sleeping medicine approved in the US, nothing has worked better for my narcolepsy. I haven't had any negative side effects, and I have been treated with Xyrem for more than 2 years. Little by little over the last 24 months I have noticed that my memory has improved, my reflexes are faster, and I am able to work 40 hours a week on my feet, without being abnormally tired. It has truly given me a life I would have never experienced. I was "sleeping" my life away 14 hours at a time.”
Xyrem (sodium oxybate): “This medicine is a life-changer. Has reduced my excessive daytime sleepiness by about 80%. I rarely have to take any daytime narcolepsy medicines. Has also stopped the hypnopompic hallucinations almost completely. I feel like I got my life back. I went from considering applying for disability to working full time with no accommodations. This medicine gave me my life back! Just be aware that it can take a good 6 months to adjust to it, find your therapeutic dose, and work off your sleep debt (from lack of deep sleep). I ended up being prescribed an anti-nausea medicine while I was titrating my dose in order to overcome the nausea at first. But now I can take it just fine. It's tough to adjust to but so worth it in the long run!”
Xyrem (sodium oxybate): “REM, REM, REM day and night, absolutely comatose 24 hours a day, terrible muscular weakness and fatigue, inability to think or move around actively for more than an hour or two on any day - all of this for two years. Then I began taking the low dose of Xyrem 12 days ago and my life is already turning around. I still get only five or six hours of sleep a night, but I'm no longer in bed all day. I can stay active for four or five hours now, and my creative juices have begun to flow again. Thank you, Xyrem, for saving my life (for I had almost decided to end it)!!!”
Xyrem (sodium oxybate): “My daughter was diagnosed with narcolepsy when she was 12. Severe and accompanied by cataplexy, hallucinations in REM within 90 seconds, all facets of sleep disorders seemed concentrated in her young body. She never got to drive a car. Narcolepsy dictated her quality of life. On methylphenidate, which increases heart rate, for 27 years, she convinced her Dr to help her get in a sodium oxybate program. Sodium oxy dosage increased per instructions over time, had delusional, withdrawn effects and slowed speech. 4 months after starting sod oxy she was found dead in her apartment from a massive heart attack. Accumulated effects from yrs of stimulants? A sudden jolt from sodium oxybate ? Congenital defect? She did not abuse meds. CAUTION”
Xyrem (sodium oxybate): “This medication has changed my life. I have never had a problem falling asleep. But I wasn't experiencing restorative sleep. I have been chronically fatigued my entire life. This medicine has almost completely resolved my cataplexy. I still have an occasional episode. No stimulants ever helped. I could take Ritalin, dexedrine and go right back to sleep. I've never known what it felt like to get stage 4 restorative sleep. It has helped my mood disorder and chronic pain as well. Never underestimate the value of a good nights sleep. This stuff has worked magic. I don't know what will happen when the coupon expires as my insurance company has balked at paying the high price for this.”
Xyrem (sodium oxybate): “I had been terrified to try this medicine because of the warnings. I was diagnosed with Narcolepsy w/ catalepsy 4 years ago Started Xyrem last year. Amazing. I take the full dose twice a night.I don't have to struggle to make myself get out of bed in am.Don't have have other symptoms I had before. take my daytime medicine,but don't need as much and I fall asleep (unintentionally) less frequently during the day. I usually take only one nap during the day. And I don't get sleepy driving like I used to. I take it right as I get into bed. I still can be awoken by loud sounds or my dog, which is good because I feared that I would not wake when needed. I had no side effects-they are over-blown. In the past, this was sold over the counter!!”
Frequently asked questions
- How does Xyrem work for narcolepsy?
- How much sodium is in Xyrem?
- Is Xyrem a controlled substance / narcotic drug of abuse?
- Can any doctor prescribe Xyrem?
Xyrem (sodium oxybate): “Xyrem is a wonderful medication that changed my life for the better. While it is a bummer that it took 45 years to figure out my problem, I am happy that it happened. Doctors diagnosed my narcolepsy as depression or ADHD. I diagnosed with would like to thank my doctor. I was reading reviews of local psychiatrists, and his reviews made him out to be a pompous individual. I do not know about you, but a confident, know-it-all doctor would be a change for me. He was the only medical professional to suggest a sleep study. Xyrem works by causing you to sleep very deeply in controlled, short-duration intervals. I have two, four-hour intervals of sleep. Your sleep is of such high quality that you are do not get sleepy during the day. I cannot give a higher recommendation for this medication.”
Xyrem (sodium oxybate): “I am 20, 21 in a few months, I am 150lbs and 5'6" and I am on 2.5g 2x per night with 3 hours between the two doses. I am on night #8 and I wanted to share my current experience for newly prescribed patients. I am very happy with this treatment! My quality of life has improved around 80% and I realize I still have a while to go before my body is completely adjusted to this new chemical. I do not take any ANY other medications, and I only eat fresh foods, no fast foods for years, and I have cut my sodium intake due to the high levels of sodium in xyrem. I have only had one B12 energy shot since my first day on xyrem. I have very vivid dreams (that feel like) all night. I sleep very solid and deep, and when its time for dose #2 my body knows.”
Xyrem (sodium oxybate): “Xyrem has changed my life. For the first time, I can awaken from sleep feeling refreshed. For the first time, I can achieve a deep sleep. The quality of sleep that I get while on Xyrem is a miracle. Before Xyrem, I used to sleep extremely light all night long, while waking dozens of times and tossing and turning. Between constant REM (dreaming) and spurts of very light sleep, I was so exhausted in the morning and I could barely function during the day. Also, I had a hard time with falling to sleep at night. And trying to maintain a set sleep schedule was nearly impossible.”
Xyrem (sodium oxybate): “I was on 40 mg of Dexedrine and 40 mg of Ritalin a day and still had to quit work as I was falling asleep. Stopped both medicines the day I left work. Started on Xyrem and now am back at work full time at age 69. A miracle.”
Xyrem (sodium oxybate): “I tried ritalin, adderall, adderall XR, but nothing worked very well for my narcolepsy. During the day, I always felt that I could fall asleep within 5-10 minutes if I wanted to no matter what was going on. I switched doctors and the new doctor prescribed Xyrem. For me, it has been life-changing! I can read books for hours without getting drowsy, which never was the case previously. The only issue is taking a dose in the middle of the night, as sometimes I can sleep through the alarm. I then have to reduce the size of the dose so I can get up when my 2nd alarm goes off. It works well-try it!”
Xyrem (sodium oxybate): “I have been taking xyrem for nearly 10 years. It has changed my life for the better. I don't mix it with water; I just take it straight twice a night. I am on 3.75 mg 2x per night. I stay on a pretty strict sleep schedule even on the weekend.”
Xyrem (sodium oxybate): “I have been taking this a little over a year. I just recently went up to the highest dose. I like this medicine with the exception that the first dose makes me feel stoned and I get hungry. As long as I go straight to bed and not watch t.v. or talk to my kids I am ok. If I do anything other than go to bed I don't go to sleep. When I do go to sleep I don't even have to set an alarm I automatically wake up. I am still tired in the mornings and depending on work it can be worse at other times. I take Ritalin 2x during the day. My quality of life has improved to the point where I do not fall asleep while working, I don't race to get home to lay down, I don't take naps as much as I used to. I am still "tired" but functional.”
Xyrem (sodium oxybate): “I have been taking Xyrem for 8 years now, and only wish I had started sooner. The first 32 years of my life were spent suffering from undiagnosed narcolepsy and constantly being exhausted during the day. After finally taking myself to a sleep specialist I discovered that, even though I would sleep at night, I was never getting any recooperative sleep. They started me on Xyrem (and methylphenidate er during the day) and I feel so much better now. The cataplexy and sleep paralysis are gone! I sometimes wonder if I am building up a tolerance to it because it may take me an hour to fall asleep, but I love this stuff! I haven't had many side effects, except if I'm still awake after an hour and a half - then it's pretty miserable and nauseous.”
Xyrem (sodium oxybate): “Xyrem has changed my life, but not without side effects. Prior to starting this medication, I was exhausted all the time. So exhausted I felt drunk. I was also getting vivid hallucinations at night, sleep paralysis, & nightmares. I never felt rested, no matter how much I slept. Since starting this medication, I actually wake up feeling like I got a good night’s sleep. I have energy for the first time in 12 years and feel normal for once. Now for the drawbacks. I have found that the high sodium throws off my magnesium & potassium. This causes severe muscle cramps & chest pain. I have been able to combat this by drinking a ton of water, exercising (sweating out as much if Xyrem as I can), & taking an OTC potassium & magnesium supplement. For context, I also have POTS so the high salt has actually helped w/that. Overall, this medication is worth the extra steps I have to take to get rid of the side effects. I feel the best I’ve felt in years.”
Xyrem (sodium oxybate): “I am 29 years old and have had narcolepsy since I was 7. I started Xyrem after three doctors recommended it. 9g/night in 2 doses, & finally get the deep sleep I never had. I dream, but not the endless series of exhausting dreams that feel like memories, Nor dreams during the day! Some mornings I wake up feeling fantastic and motivated, some mornings I think, ‘just one more hour!’ and need a cup of coffee or tea to get started. I think that is what normal feels like. Hardest part is not eating 4-5 hrs before, bc I like to go to bed around 8:45/9:30pm. Basically I have my life back and wish I’d gone on Xyrem years ago instead of being afraid of side effects that haven’t even happened on max dose. Thank you, Xyrem, for giving me my life back!”
Xyrem (sodium oxybate): “I have been on this medication for 10 years. It has changed my life. I recently had to be off of it for a week for some insurance prior auth issues and the difference was huge. I was basically useless during the day with increased fibromyalgia pain and daytime sleepiness. 10 years”
Xyrem (sodium oxybate): “After a few years of being diagnosed with narcolepsy and excessive daytime sleepiness, someone I knew who had narcolepsy as well recommended I ask my doctor about Xyrem. I am glad I did because about a week after taking it I started feeling normal again. I still have some "bad" days, but they are better than my best days prior to taking Xyrem. The only thing I don't like is their list of side effects being unclear. I have had stomach issues, loss of appetite, and significant weight loss. I was beginning to think something was wrong with me because these are not side effects listed on their website. It wasn't until I stated searching other forums that I am finding others having these same types of symptoms.”
Xyrem (sodium oxybate): “I have been diagnosed with narcolepsy, cataplexy, and fibromyalgia. I was on Provigil and Adderall, and still falling asleep. Doc started me on 2.5 mg twice a night. I was sleeping. At night only! I am on 3.0 mg now, and still taking the Adderall during the day. I am not falling asleep at work, and my cataplexy and hallucinations are almost nonexistent! I still get tired pretty early on in the evening, but I was starting to worry about my ability to continue working. It also seems to be helping with the pain. I get nauseous sometimes during the day, but have found that it's because I need to drink some water or eat something. I feel like the old me again. I just hope the insurance doesn't decide not to cover it.”
Xyrem (sodium oxybate): “Wish I had been prescribed Xyrem sooner! Amazing the difference I feel. The taste is horrible but mixing with Crystal Lite lemonade makes it bearable. Was taking 30mg Adderall 3x a day and still struggling to get through the day. Now I'm only taking 30mg a day. I feel so much better.”
Xyrem (sodium oxybate): “I have been on this medication for narcolepsy with cataplexy since 2013. It's the only drug to have helped me be able to keep driving, and be awake during the day when I'm supposed to and sleep so good at night. It's truly a blessing!!! The side effects are nonexistent for the most part. I highly recommend it!!!”
Xyrem (sodium oxybate): “I started Xyrem about 3 months ago, and I couldn't happier. I tried Nuvigil, Wellbutrin, Ritalin, and Prozac, and nothing kept me from sleeping 14 hours a day with hallucinations and cataplexy. After just a few weeks, I was able to stay awake ALL DAY LONG, and I haven't had ANY cataplexy in the past two months. I also got to cut my stimulant use by 2/3 during the day. I was nauseated at first, but after a few weeks it went away. I have also lost 30 pounds without trying after starting this medicine, even though it makes me hungry at night. I still have sleep attacks, but they are usually once every one or two weeks. I would much rather have that than everyday!”
Xyrem (sodium oxybate): “My experience with Xyrem started about 12 years ago. The first few months where very hard. If I moved after taking it, I would vomit. The headaches were almost unbearable and I lost weight, but after the first few months and 12 years later, the only side effects I have now are night sweats and I can keep that in control if I drink enough water throughout the day. I can't even remember my life before Xyrem but I know that it gave me my life back.”
Xyrem (sodium oxybate): “I had to ramp up to the highest dose before it put me to sleep - before that, I'd be in a weird state but not asleep. When I did get to a dose that would put me to sleep, I would take it (10 pm), sleep for 2 hours and wake up (12 am). Then I'd have to wait an hour for the 3 hour minimum before I could take the second dose (1 am). Then I'd wake up after 2 hours again (3 am). I would be in a state I describe as somewhere between a panic attack and a hangover. I couldn't read or really do anything - I'd just have to sit there and wait for it to wear off around dawn. It didn't work for me.”
This information is NOT intended to endorse any particular medication. While these reviews might be helpful, they are not a substitute for the expertise, knowledge and judgement of healthcare practitioners.
Learn more about Narcolepsy
IBM Watson Micromedex
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Mayo Clinic Reference
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