Sodium oxybate for Narcolepsy User Reviews (Page 4)
Brand names: Xyrem, Lumryz
Sodium oxybate has an average rating of 7.8 out of 10 from a total of 102 reviews for the treatment of Narcolepsy. 72% of reviewers reported a positive experience, while 15% reported a negative experience.
Reviews for Sodium oxybate
- Anonymous
- October 12, 2021
Xyrem (sodium oxybate) "I admit, I was greedy to feel better and not well-informed about the process of titration when I began this med; I followed the titration schedule but kept increasing dosage even when my EDS improved and I noticed my anxiety was heightened. After my first night at 4.0x2, I had a full-on anxiety attack. Reduced dosage to 2.25x2, another anxiety attack. I had to go off Xyrem for a painful month while getting on 10 mg/day of Buspirone, a non-sedating anxiolytic. Talked a lot with my sleep doctor, psychiatrist, and the pharmacists at ESSDS. Now I only take one dose of 3.0 when I wake up (on my own or to the alarm) in the middle of the night, between 2.30-3.30am. I'm completely off the Ritalin I relied on to stay alert/awake. So grateful I found a dosage level that doesn't cause debilitating anxiety and wish I'd known to take more care through the titration process, stopping when my EDS was affected, not because the Rx notes on the bottle say to keep increasing."
- Bella
- Taken for 5 to 10 years
- December 18, 2020
"I have ME/CFS and Xyrem saved me. I experienced a plethora of crippling symptoms including horrific insomnia for 7 years. Then my Doc prescribed me Xyrem and I regained back some functioning making life worth living again. I have some side effects but the benefits hugely outweighed the side effects."
Frequently asked questions
- How does Xyrem work for narcolepsy?
- Is Xyrem a controlled substance / narcotic drug of abuse?
- How much sodium is in Xyrem?
- Can any doctor prescribe Xyrem?
- MLE
- Taken for less than 1 month
- March 27, 2022
"After taking Xyrem, I was amazed to feel what regular people feel when they sleep and how they wake up! It was amazing! My brain fog and anxiety completely resolved and I had no need for daytime stimulants. Physically, my brain no longer felt heavy and congested. I don’t know how else to explain it but just amazing to feel what normal feels like."
- Poppy
- Taken for 1 to 6 months
- July 4, 2022
"My Doctors call my narcolepsy severe and for 6 months I was going through trial and error trying to find the medication best fit for me. In March, my doctors told me they would like to trial Sodium Oxybate with me. I never expected it to be this incredible. It has honestly spun my entire life around and I can finally do things in the day time and not feel completely shattered after. Before, riding my horse would exhaust me and I would take a big nap afterwards but now I don't feel the need too. I can stay awake most days all day with no naps. It makes me feel so much happier and brighter, I used to be very grouchy simply because I was so tired! Some negatives would be the symptoms I've experienced since taking it. Feeling sick and having no appetite. I went from 10.6 stone to 8.13 stone within about 4 months, although I have stopped losing weight it has cause issues with my day time medication working too well because of my weight loss, rising my heart rate."
Are you taking this medicine?
- Jenner
- Taken for less than 1 month
- July 15, 2018
"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."
- Igor
- Taken for 1 to 6 months
- May 2, 2024
Lumryz (sodium oxybate) "I've been on Lumryz for 2 months, and I am adjusting well. I have not experienced any real side effects. This is my first narcolepsy drug. I would say, on average, I'm sleeping about 7 hours per night without interruption. It took me about 3 weeks, but I am happy with the results so far. My days are much better."
More FAQ
- maddy...
- Taken for 5 to 10 years
- November 30, 2023
Xyrem (sodium oxybate) "This medication is amazing. I'm astonished at how well I sleep and how well I wake up in the morning, often without an alarm clock for the first time in my life. Daytime sleepiness is greatly reduced when combined with additional daytime medication."
- sol
- Taken for 1 to 2 years
- February 19, 2019
"I love this medication but I'm having the absolute worst time with getting it renewed it took two months to get the prescription filled last year and its taken weeks just to hear I've been denied again and it's heart breaking cause having it gave me the ability to get my first job and start college and iIdon't know what to do without it."
- Slick
- Taken for 2 to 5 years
- May 15, 2018
Xyrem (sodium oxybate) "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. "
- susthib
- Taken for 5 to 10 years
- January 6, 2016
Xyrem (sodium oxybate) "It saved my life. No more sleeping at my desk. I have had very little trouble with side effects. I learned to make sure 2 hours lapses after I eat before I take It so it will work."
- Phunk...
- Taken for 1 to 6 months
- July 5, 2015
Xyrem (sodium oxybate) "I suffered from narcolepsy due to spending too much time in the REM sleep stage. Xyrem regulates my sleep architecture, and now I no longer suffer from excessive daytime sleepiness."
- Ellat...
- January 7, 2018
Xyrem (sodium oxybate) "Diagnosed at 27 and changed my whole life using this drug.....never knew what life was."
- Jojo
- Taken for less than 1 month
- March 13, 2019
Xyrem (sodium oxybate) "I had a bad reaction to Xyrem. Nausea, panic attacks, delusional thoughts, feeling like a bad hangover every day, depressed. I ended up in the emergency room and I stopped taking this medication."
- Sourov
- Taken for 5 to 10 years
- August 15, 2019
Xyrem (sodium oxybate) "2 of 7 days in a week this medicine work for me. Other 5 days, whole day I felt so annoying and so angry that I can not explain. 1 dose can sleep 2- 3 hours and 2 dose like 1 -2 hours. "
- Anonymous
- July 15, 2011
Xyrem (sodium oxybate) "I have been taking Xyrem for my narcolepsy for 6 months. It is wonderful to feel like a productive, normal person again."
- Anonymous
- August 31, 2009
Xyrem (sodium oxybate) "Without Xyrem, I am a complete mess."
- Sleep...
- June 23, 2009
Xyrem (sodium oxybate) "Xyrem gave me the ability to return to work with the use of stimulants during the day. Stimulants alone would did not work."
- miste...
- January 10, 2013
Xyrem (sodium oxybate) "2.75g x 2 every night for five years. Deeper sleep with dreaming not infrequent. No side effects whatsoever. I've not gotten used to the salt added during manufacture."
- Edano
- July 3, 2018
Xyrem (sodium oxybate) "Xyrem helps me get restorative sleep."
- Cacky
- June 13, 2016
Xyrem (sodium oxybate) "I think the good of this medicine out weighs the negative."
- Sleepy...
- Taken for 1 to 2 years
- September 19, 2016
Xyrem (sodium oxybate) "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."
- Krazsk
- January 11, 2015
Xyrem (sodium oxybate) "It didn't work for me. It gave me opposite effect. It would me up and left me wide eyed alert awake. But no other sleeping pills work either. Most wind me up and make me antsy."
- Anonymous
- November 13, 2008
Xyrem (sodium oxybate) "Truly life changing for those with narcolepsy/cataplexy."
- okane
- Taken for 2 to 5 years
- January 25, 2015
Xyrem (sodium oxybate) "When taken as prescribed medications works well for restful sleep."
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
- En español
Xyrem (sodium oxybate) "I’ve been on a single nightly dose for a little longer than a week and was sooooo happy to feel “normal”. I take it at 11pm -12am and wake up 6:30am 8:30am without an alarm. Excessive drowsiness greatly reduced. Side effects were feeling hot and a burning, aching feeling in legs. I was willing to live with that in exchange for being able to clean my kitchen and vacuum in the same day. But 2 nights ago within minutes of taking dose, on an empty stomach, I started feeling very nauseous and belching. Last night after about 20 minutes I spontaneously vomited 3x and then only slept 4.5 hours. Why would this start after a week? I’m devastated. Has anyone else experienced this? Does it stop?"