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User Reviews for Sodium oxybate systemic

Also known as: Xyrem

The following information is NOT intended to endorse drugs or recommend therapy. While these reviews might be helpful, they are not a substitute for the expertise, skill, knowledge and judgement of healthcare practitioners in patient care.

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Condition Avg. Ratings Reviews Compare
Cataplexy
9.4
   
5 reviews 1 medications
Fibromyalgia
8.0
   
8 reviews 20 medications
Narcolepsy
7.9
   
75 reviews 15 medications
Summary of Sodium oxybate reviews 8.1 88 reviews

Reviews for Sodium oxybate

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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."

   
3.0

80sMusicLover74 (taken for less than 1 month) October 20, 2018

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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."

   
2.0

Coco (taken for 1 to 6 months) August 10, 2018

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

   
10

Dedeno (taken for less than 1 month) July 30, 2018

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For Narcolepsy: "Started Xyrem (6/15) and I didn't sleep for 36 hours. I was a walking zombie. Then I started to get severely chapped lips, it got worse I had a bunch of sores in mouth & outside my mouth. My face was burned from the inside out & I had blisters all all over my face. Then what really got my attention was on Thur 6/28 my BP was high my Dr sent me to ER my pressure was 181/123 pulse 143. I was a nervous wreck on this med and I had had a rare reaction called Stevens Johnson Syndrome (SJS). For the first weeks while I was titrating my dose, I honestly I didn’t need nap while taking Xyrem. For the 1st time in my life I wasn’t sleepy. When I take 2-3 doses, I wouldn’t want to sleep, I wanted to go somewhere & do something other than take nap. With my side effects & complaints, I just wish the company would be more compassionate. I just wish the SDS pharm would seem concerned, other them saying we have never heard of anyone having side effects or reaction similar to mine."

   
1.0

Jenner (taken for less than 1 month) July 15, 2018

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Xyrem (sodium oxybate) for Narcolepsy: "Xyrem helps me get restorative sleep."

   
9.0

Ed July 3, 2018

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Xyrem (sodium oxybate) for Narcolepsy: "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"

   
10

Depressed May 24, 2018

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Xyrem (sodium oxybate) for Narcolepsy: "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. "

   
1.0

Slick (taken for 2 to 5 years) May 15, 2018

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Xyrem (sodium oxybate) for Narcolepsy: "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."

   
1.0

MC (taken for 1 to 6 months) April 22, 2018

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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."

   
9.0

SleepyAud (taken for less than 1 month) February 27, 2018

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For Narcolepsy: "After getting diagnosed with Narcolepsy my local neurologist tried several medications that my body did not like! In fact in a liver function test my AST Levels were 196 ( normal range is 0-40) ALT was within range. Basically my liver was inflamed. So I traveled to a new Dr. who got me off all the pills and started me on Xyrem. It took some time getting used to it. I was nervous for 6 months. Strange things occurred if I woke up too soon. The trick is starting low dose and every 3 months make an adjustment until you are sleeping 3-4 hours solid. It's ridiculously expensive and insurance companies will deny it every year which is a pain but it's the only medication that my body will tolerate. It's a lot of work! If you are on Medicare like I am just this year it's really expensive. So applying with NORD to help cover it I hope. The pharmacy is very helpful but it takes time and energy to jump through all the hoops. I'll gladly jump since it's my only option."

   
10

IdahoKris (taken for 2 to 5 years) February 3, 2018

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Xyrem (sodium oxybate) for Narcolepsy: "Diagnosed at 27 and changed my whole life using this drug.....never knew what life was."

   
9.0

EllatheCanadian January 7, 2018

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Xyrem (sodium oxybate) for Narcolepsy: "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"

   
1.0

Shakespeate November 3, 2017

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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!"

Rizzamae (taken for 2 to 5 years) October 29, 2017

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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."

   
10

Sleepy Bill October 12, 2017

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Xyrem (sodium oxybate) for Narcolepsy: "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!"

   
10

Sir Wakealot (taken for 1 to 6 months) October 6, 2017

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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."

   
10

Julieo21 (taken for 5 to 10 years) July 6, 2017

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Xyrem (sodium oxybate) for Narcolepsy: "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."

   
10

Cindy Sleeps (taken for 10 years or more) June 8, 2017

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Xyrem (sodium oxybate) for Narcolepsy: "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."

   
8.0

MrMartyP May 19, 2017

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Xyrem (sodium oxybate) for Narcolepsy: "Fell asleep"

Astro Apple (taken for 1 to 6 months) May 18, 2017

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Xyrem (sodium oxybate) for Narcolepsy: "I have mixed feelings about this medication. When you put aside all the side effects, it's great. It's doesn't quite put me to sleep as quickly as they say, but when I am asleep it is the best sleep I've had in a VERY long time! But sometimes I feel the side effects out way the sleep. If you have any kind of depression.. I would be very careful. The nausea can be very bad, my legs turn into jello, I can get very irritable, I don't have much of an appetite, and I have to take a stimulant in the morning for the grogginess. But even with all of that, I would still recommend this medication because it works. It definitely helps with narcolepsy and my cataplexy. I was very nervous about trying it, but I love my doctor for pushing me to try it!"

   
7.0

sleepymorgan0089 (taken for 1 to 6 months) December 1, 2016

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For Fibromyalgia: "This is truly the best medicine/treatment for fibromyalgia or CFS. It's such a shame that most people with these awful illnesses can't get it. I dont wake up 2-4 hours after my first dose to take my second. I feel like that was truly for people who have narcolepsy. When I wake up naturally after my first dose I take my second dose. I'm truly sad for all who don't even get the chance to try this. The FDA would rather people take their lives than let them have a treatment that works for fibromyalgia and CFS."

   
10

Fighting4ME September 21, 2016

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Xyrem (sodium oxybate) for Narcolepsy: "More like Xyrem distress! What an awful medicine. It is expensive and it does not work. Don't waste your money. Find something else to help you sleep."

   
2.0

Sleepy in Palm Beach (taken for 1 to 2 years) September 19, 2016

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Xyrem (sodium oxybate) for Narcolepsy: "My experience about xyrem is phenomenal. Going back, I can't imagine myself how I survived before this medication, comparing how I used to feel before taking the medication. I'm at least 70 percent feeling better. I read a couple suggestions on this website as far as not eating 2 to 3 hours before and not drink much water 5 hrs before, I will try them to see if I can get any improvement. So far my only issue is on the second dose, it wears off quick, it feels like I passed out for a couple hours and wake up to pee and that will be it but still can feel that heavy eyes just won't be able to fall asleep again."

   
7.0

Xyrem saves me (taken for 1 to 2 years) August 16, 2016

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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."

   
9.0

Surreal2000 July 5, 2016

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Xyrem (sodium oxybate) for Narcolepsy: "I think the good of this medicine out weighs the negative."

   
8.0

Cacky June 13, 2016

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