Sodium oxybate for Narcolepsy User Reviews (Page 2)

• Flagh...
• October 5, 2009

Xyrem (sodium oxybate) "I have been taking Xyrem since it was in research. Then it was a powder that you mixed each night before bed. While it has changed my life for the better. There are some side effects. One is after starting just once I did wet the bed. I had been warned that this might happen. So with proper protection in place no mess. One more side effect is intense hunger after taking the dose. Some people quit the study over that side effect. The price of Xyrem is so high. These are just my experiences everyone is different. But for my narcolepsy I have a new lease on life. One where I can pay attention and stay awake."

• kslater
• Taken for 2 to 5 years
• November 2, 2012

Xyrem (sodium oxybate) "I noticed a lot of complaints about nausea. Do not eat anything for at least 2 hours before you take it. When I first started taking it I would wake up pouring sweat and throwing up. I finally figured it out though. If I take my first dose at bedtime, I fight it and don't sleep. So what seems to work now is going to bed and a couple hours later then take dose (I always have to pee anyway). "

• John...
• Taken for 1 to 6 months
• April 23, 2013

Xyrem (sodium oxybate) "Took my first dose Saturday night. Wow! What a difference the next morning, I was wide awake, alert and hot to go to my work and my college lessons! As I write this I have been on Xyrem for about three months, and recently started having hand tremors occasionally. I noticed that one other person ("Anonymous") mentioned shaking; once in awhile my tremors are strong. Xyrem certainly has cured my severe narcolepsy, which began about a year ago without warning. I am glad to see that several people have been on Xyrem for years without any adverse side effects, and no withdrawal symptoms when they stopped briefly. "

• Cindy...
• Taken for 10 years or more
• June 8, 2017

Xyrem (sodium oxybate) "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."

• cbano
• July 6, 2015

Xyrem (sodium oxybate) "I'm still in the early stages of taking XYREM (week 6), but it has changed my life. I almost never take naps, and have had my narcoleptic episodes significantly reduced. I get around 8 hours of sleep every night, and can stay awake with no issues all day. Sometimes in the morning I feel a little groggy, but can't get back to sleep which i'm sure is just the medicine wearing off as it goes away shortly after I get up and about."

• Anonymous
• March 10, 2011

Xyrem (sodium oxybate) "I have been on this medicine for 4 months, and it is the first time that I can actually wake up without feeling tired. It had gotten to the point that I was falling asleep at the wheel and at work. Now I feel like a new man. My sex life has come back to the level like I am 20 years old. Great medicine."

• Doggjr
• Taken for 6 months to 1 year
• January 23, 2019

Xyrem (sodium oxybate) "My wifes experience with this medication had been horrible. I have seen her take this medicine and within 15 minutes she is asleep. She is delusional and acts in a child like manner also. She falls asleep standing at times and has had a few bad falls also. Recently she fell in the bathroom and was up against the door and it took me two hours to get her out. My wife has been experiencing delusion and paranoia but she has become addicted to it also. I am now reaching out to Drs to help with all of this and as of now I have found zero help."

• Anonymous
• March 17, 2009

Xyrem (sodium oxybate) "Xyrem is life changing. I have been taking a free sample of Xyrem for 4 weeks and now for the 1st time I wake up feeling refreshed and awake. I no longer feel like a narcoleptic. Before Xyrem, each day I crawled out of bed with an indescribable level of exhaustion and I reached for the Dexedrine pills just to drag through another day. "

• MCano
• Taken for 1 to 6 months
• April 22, 2018

Xyrem (sodium oxybate) "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."

• sleep...
• Taken for 1 to 6 months
• December 1, 2016

Xyrem (sodium oxybate) "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!"

• Anonymous
• April 28, 2010

Xyrem (sodium oxybate) "The first couple nights, I experienced horrible nightmares in which I could not awake from until 2 1/2 hours later when my alarm finally sounded. The next week, my dosage was increased which I experienced severe weakness, dizziness and vomiting. The third week, my dosage was again increased and I experienced the inability to go to sleep. These side effects caused me to discontinue the medication."

• Brother
• Taken for 5 to 10 years
• July 18, 2020

Xyrem (sodium oxybate) "I tried ritalin, adderall, adderall XR, but nothing worked very well for my narcolepsy. During the day, I always felt that I could fall asleep within 5-10 minutes if I wanted to no matter what was going on. I switched doctors and the new doctor prescribed Xyrem. For me, it has been life-changing! I can read books for hours without getting drowsy, which never was the case previously. The only issue is taking a dose in the middle of the night, as sometimes I can sleep through the alarm. I then have to reduce the size of the dose so I can get up when my 2nd alarm goes off. It works well-try it!"

• Anonymous
• Taken for 1 to 6 months
• July 13, 2012

Xyrem (sodium oxybate) "I have been taking this medication for 2 months and let me tell you how stupid I am. DO NOT EVER LEAVE YOUR MEDICATION IN THE HEAT OR HUMIDITY. I kept leaving my medication in my car because I didn't want my girlfriend's brother to steal it. When Xyrem is left out in the heat it becomes less effective. If my narcolepsy is not treated I become severely bi-polar to the lack of sleep. I almost had to go to the mental hospital before I read a note in my new package proclaiming Xyrems ineffectiveness due to heat. Low and behold, I took my new batch of Xyrem last night and felt decent this morning."

• Anonymous
• May 4, 2009

Xyrem (sodium oxybate) "I have found this medicine to be extremely helpful, although I do have some side effects from it. I have been on Xyrem for about 4 months now. I wake up feeling better than I have in years, but I have a trembling feeling (like being very cold) on the inside of my body that lasts for about 1 hour, and my hands shake very badly for about 3 hours. Both of these side effects occur upon getting up in the morning. I will say I can tolerate the shaking, because this medicine is truly amazing."

• narco...
• August 19, 2014

Xyrem (sodium oxybate) "I'm on 2.5mg twice a night. It puts me to sleep for two hours but it's the best two hours of sleep I get. Unfortunately, I don't sleep long while on it and I am wide awake after four hour for about two hours in the morning."

• Chris...
• December 2, 2019

Xyrem (sodium oxybate) "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 psychotic episode"

• Fibro...
• March 2, 2013

Xyrem (sodium oxybate) "I was given Xyrem two months ago to help with narcolepsy with cataplexy along with fibromyalgia. I had an expectation based on what I was told it would do that I would instantly be falling asleep. It didn't happen. Minimal effects. My neurologist started me on 2.25mg x 2 at night. When we discussed the situation on my next visit and I talked with the Xyrem nurse, this was common on this dosage. He increased it to 3.0 for the next six weeks. I am now seeing some results in sleep, cataplexy and narcolepsy. He did tell me that he increases to maximum dosage at much slower rates than any doctors to lessen the side effects. To date all I have had was a slight headache several days which might or might not be related. So far so good!"

• Trulak
• August 1, 2010

Xyrem (sodium oxybate) "Xyrem actually worked! For the first time in my life, I felt like a normal person. Then, the migraines to beat all migraines began. I was awake but in so much pain and the only thing that helped at all was packing ice all around my head. I hoped the headaches would go away but, after a couple of weeks, I gave up. I didn't want to be awake with that much pain."

• oilfe...
• July 29, 2011

Xyrem (sodium oxybate) "My husband has been on Xyrem for a 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."

• Xyrem...
• Taken for 1 to 2 years
• August 16, 2016

Xyrem (sodium oxybate) "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."

• Allizon...
• Taken for 1 to 6 months
• February 8, 2016

Xyrem (sodium oxybate) "For the last month I have been sick, very restless sleep, muscle spasm, vomiting for several hours with movement after meds have worn off. I had to stop using Xyrem this month because the same faulty batch I got in January, they shipped me again this month... I tried to call and complain about the side effects. Unfortunately the SDS Pharmacy isn't offering any solutions to fix or solve the issue that a lot more people are dealing with.... So disgusted with this company"

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

Xyrem (sodium oxybate) "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 through I had been tranquilized, my back hurt really bad, 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: Ditziness, tenseness in the muscles, blush face, increased libido, munchies."

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

Xyrem (sodium oxybate) "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."

• Bailey
• Taken for 1 to 6 months
• April 5, 2019

Xyrem (sodium oxybate) "This medication has absolutely changed my life in a positive way. I actually stay awake thoughout 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."

• Sleepy...
• October 12, 2017

Xyrem (sodium oxybate) "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."