Sodium oxybate User Reviews & Ratings (Page 3)

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

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 though I had been tranquilized, my back hurt really badly, 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: dizziness, tenseness in the muscles, flushed face, increased libido, munchies."

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

For Narcolepsy "This medication might have ended up being effective for me if I could have tolerated it long 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 a couple of panic attacks. I quit taking it when I became severely depressed."

• Bai...
• Taken for 1 to 6 months
• April 5, 2019

For Narcolepsy "This medication has absolutely changed my life in a positive way. I actually stay awake throughout 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."

• wai...
• September 1, 2011

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 2 times a night (I'm 30 and weigh about 123 lbs). I take 150 mg of Nuvigil during the day. I still have yet to wake up with this amazing 'refreshed' feeling everyone discusses. One 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 two. Keep your fingers crossed for me because I am desperate to have a normal life."

• oil...
• July 29, 2011

For Narcolepsy "My husband has been on Xyrem for 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."

• Sle...
• October 12, 2017

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."

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

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 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

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."

• Sur...
• July 5, 2016

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 Adderall 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-tailed 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."

• wak...
• October 1, 2009

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."

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

For Narcolepsy "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

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 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."

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

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 hypnagogic/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!"

• Anonymous
• June 21, 2009

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."

• stt...
• July 19, 2009

For Narcolepsy "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

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."

• blu...
• November 5, 2011

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 ramifications of having it stolen are great. And the paperwork is long. The number of agencies involved boggled my mind."

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

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."

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

For Narcolepsy "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

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 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

For Narcolepsy "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

For Narcolepsy "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

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."

• Sle...
• June 5, 2020

For Narcolepsy "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

For Narcolepsy "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."