Sodium oxybate User Reviews & Ratings (Page 3)

• oilfe...
• July 29, 2011

Xyrem (sodium oxybate) for Narcolepsy "My husband has been on Xyrem for a 4 years now, it has helped him so much. But the problem is that family doctors don't understand Xyrem and pain medicines together. All medicines have a risk but don't leave people in pain because they are on Xyrem."

• Anonymous
• January 26, 2012

Xyrem (sodium oxybate) for Cataplexy "I've been taking Xyrem for about 6 yrs at 4.5gms 2 x a night. My doctor said I had the worst case of Cataplexy he'd seen in his career! Xyrem with 40mgs of Desoxyn and 150mgs of Effexor during the day I have a life again! I still have to nap about midday and I still won't chance a comedy club (the Cataplexy still sneaks in once in a while) but I hope to some day. I found out the hard way to make sure you don't drink anything before taking because you will NOT wake up to pee until the dose wears off! A small price to pay when I consider what it was like before Xyrem. "

• Allizon...
• Taken for 1 to 6 months
• February 8, 2016

Xyrem (sodium oxybate) for Narcolepsy "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"

• 80sMu...
• Taken for less than 1 month
• October 20, 2018

Xyrem (sodium oxybate) for Narcolepsy "This medication might have ended up being effective for me if I could have tolerated it long enough enough to get to an effective dose, but I quit taking it because of the side effects. My blood pressure increased from 110/65 to prehypertension, up to 138/90. It also caused mild tachycardia (rapid heart rate). My normal resting heart rate is between 64 and 68. On Xyrem it was in the 80s and 90s the entire time. I also had anxiety in the morning hours, including s couple of panic attacks. I quit taking it when I became severely depressed."

• Bailey
• Taken for 1 to 6 months
• April 5, 2019

Xyrem (sodium oxybate) for Narcolepsy "This medication has absolutely changed my life in a positive way. I actually stay awake thoughout the day which is a big change for me. I now have energy to enjoy life. I’ve been taking xyrem for about 5 months now."

• PRIUS...
• Taken for 1 to 2 years
• March 23, 2019

Xyrem (sodium oxybate) for Narcolepsy "The following is my two cents regarding this drug, I am not a medical professional and do not pretend to be one: the most important thing to know about this drug is that it’ll make you wake up in the morning. (Literally) the second most important is that if you're feeling uncomfortable with this drug, hang in there, it will pass. I’m one month past my one year anniversary with this agent. Firstly I want to recollect back to when I began it. The first week was a struggle, I felt as through I had been tranquilized, my back hurt really bad, I was slowed and dizzy. The third week was better. The really great effects (of falling to sleep quickly and waking up pleasantly stimulated) began 4-5 months after starting the medication. IT works great for ADHD, Daytime Sleepiness, and Fibromyalgia. Side effects: Ditziness, tenseness in the muscles, blush face, increased libido, munchies."

• Sleepy...
• October 12, 2017

Xyrem (sodium oxybate) for Narcolepsy "I tried this off-label because I was always waking up tired and never felt rested. I took 4 mL before bed. The results were incredible. Woke up exactly 4 hours later feeling alive and not exhausted for the first time in years. I've since been diagnosed with narcolepsy so I know why this medication was so effective for me. Unfortunately I can't afford it so my only option is dexamphetamine which doesn't help me much."

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

Xyrem (sodium oxybate) for Narcolepsy "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

Xyrem (sodium oxybate) for Narcolepsy "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."

• waiting...
• September 1, 2011

Xyrem (sodium oxybate) for Narcolepsy "I have been on Xyrem for nearly 2 months now. I have been slowly increasing my doses and am currently on 4 grams 2xs/night (I'm 30 and weight about 123lbs). I take 150 mg of Nuvigil during the day. I still have yet to wake up with this amazing "refreshed" feeling everyone discusses. 1 day I accidentally forgot my Nuvigil at home and was falling asleep driving to work, which happened before I was on any narcolepsy medications. I at least appreciate not falling asleep anymore but I don't have any proof that Xyrem has contributed to it. I am close to giving up but will carry it out until I have tried the full 4.5 doses of Xyrem for a week or 2. Keep your fingers crossed for me because I am desperate to have a normal life."

• Seren...
• August 4, 2019

Xyrem (sodium oxybate) for Narcolepsy "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."

• Surreal
• July 5, 2016

Xyrem (sodium oxybate) for Cataplexy "I am 57 years old and have had some version of narcolepsy since age 30 or 35. I tried Nuvigil and then added Adderal but still had breakthrough narcolepsy and cataplexy. The cataplexy broke my foot a year ago and my wrist six months ago. This is the most amazing medication! I would go to bed at midnight and awaken at 10 or 11 in the morning. I would fall asleep for a cumulative 2 to 3 more hours during the day. I awaken between seven and 8 o'clock bright eyed and bushy tail to use my parents phrase. I am fully alert and have no further problems with sleepiness throughout the day. I am still experiencing occasional morning nausea and inappropriate diaphoresis or sweating for no reason. An ice pack at the back of my neck will break it."

• wakeful
• October 1, 2009

Xyrem (sodium oxybate) for Narcolepsy "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 (sodium oxybate) for Narcolepsy "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

Xyrem (sodium oxybate) for Narcolepsy "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."

• Rizza...
• Taken for 2 to 5 years
• October 29, 2017

Xyrem (sodium oxybate) for Cataplexy "I have narcolepsy with cataplexy and also sleep apnea. I started taking Xyrem about 3 years ago, and the difference in my ability to function is phenomenal. No more hypnogogic/hypnopompic hallucinations, drastically improved cataplexy, very few episodes of sleep paralysis. And for about 5 minutes before it knocks me out, I get a buzz of epic proportions. Sadly, xyrem has gone up more than 800% in price. It costs over $5,000 per bottle, and I'm on 3 bottles per month. Unwanted side effects that I've experienced are, during titration (dose increased by Dr) 1. I had trouble breathing properly. 2. the first night of my highest dose (4.25) it knocked me out so hard that I wet the bed. 3. Wicked vocab. I swear a lot during a dose. idk why!"

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

Xyrem (sodium oxybate) for Narcolepsy "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
• Taken for 1 to 6 months
• May 26, 2012

Xyrem (sodium oxybate) for Narcolepsy "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."

• Anonymous
• June 21, 2009

Xyrem (sodium oxybate) for Narcolepsy "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 (sodium oxybate) for Narcolepsy "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

Xyrem (sodium oxybate) for Narcolepsy "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."

• Sassie
• Taken for 10 years or more
• January 2, 2023

Xyrem (sodium oxybate) for Narcolepsy "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."

• Sleep...
• June 5, 2020

Xyrem (sodium oxybate) for Narcolepsy "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!"

• bluhat
• November 5, 2011

Xyrem (sodium oxybate) for Cataplexy "I have had a great improvement in my mental function. I can now pay attention and follow along with what is going on around me. With a switch to Desoxyn as a daytime medication wow I feel like a normal person at least for me. Get a safe to keep it in as the ramification of having it stolen are great. And the paperwork long. The number of agency's involved boggled my mind. "

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

Xyrem (sodium oxybate) for Narcolepsy "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."