Sodium oxybate for Cataplexy User Reviews
Brand names: Xyrem, Lumryz
Sodium oxybate has an average rating of 8.2 out of 10 from a total of 6 reviews for the treatment of Cataplexy. 67% of reviewers reported a positive experience, while 0% reported a negative experience.
- Surreal
- July 5, 2016
Xyrem (sodium oxybate) "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."
- Rizza...
- Taken for 2 to 5 years
- October 29, 2017
Xyrem (sodium oxybate) "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!"
Frequently asked questions
- How does Xyrem work for narcolepsy?
- Is Xyrem a controlled substance / narcotic drug of abuse?
- Can any doctor prescribe Xyrem?
- How much sodium is in Xyrem?
- bluhat
- November 5, 2011
Xyrem (sodium oxybate) "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. "
- Ree
- Taken for 1 to 2 years
- August 29, 2020
Xyrem (sodium oxybate) "Xyrem helped with the cataplexy symptoms and helped with my day to day. However, the first dose did not always work and that left me in a very disorienting state. I also suffer from depression and the xyrem intensified this. I overdosed twice because of this. I had zero self control when taking this medicine. The first overdose was on purpose. The second, I’m not sure, I blacked out. This medicine really helps, since being taken off I realized how much is was helping. However mentally it is better for me to be off it."
Are you taking this medicine?
- Tired...
- Taken for less than 1 month
- October 31, 2015
"I have been diagnosed with Narcoplepy w/cataplexy 1 month ago. I realized something was wrong with my sleep habits several years ago, but attributed it to stress. I thought I slept well at night only to find out that I never go into restful sleep. The constant chain of dreams is frustrating and can be disturbing. I do take Modafinill with medioka results. I was prescribed Xerym and at first I was excited then became extremely terrified of type of medication. I thank everyone for sharing the positive results as many mostly will mention the negative. It has been very helpful in calming my nerves for my fist dose tonight!"
- Sierra
- Taken for less than 1 month
- August 25, 2024
Lumryz (sodium oxybate) "Keeps me from having cataplexy, but causes severe, painful restless leg syndrome."
Reviews may be edited to correct grammar/spelling or to remove inappropriate language and content. Reviews that appear to be created by parties with a vested interest are not published. This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge, and judgement of healthcare professionals.
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- Drug class: miscellaneous anxiolytics, sedatives and hypnotics
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Xyrem (sodium oxybate) "I've been taking Xyrem for about 6 years at 4.5 grams, 2 times a night. My doctor said I had the worst case of cataplexy he'd seen in his career! Xyrem, with 40 mg of Desoxyn and 150 mg 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 someday. 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."