SODIUM OXYBATE: FDA Approved Drugs and User Comments

User Comments:

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.”

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

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.”

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

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

EllatheCanadian January 7, 2018

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”

Shakespeate November 3, 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!”

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

Sleepy Bill October 12, 2017

* The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.