Xyrem for Narcolepsy User Reviews (Page 2)

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

"My experience with Xyrem started about 12 years ago. The first few months were 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."

• cba...
• July 6, 2015

"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

"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."

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

"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 a while, 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."

• ksl...
• Taken for 2 to 5 years
• November 2, 2012

"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 of hours later then take the dose (I always have to pee anyway)."

• Anonymous
• March 17, 2009

"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."

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

"I have mixed feelings about this medication. When you put aside all the side effects, it's great. It 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 outweigh 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

"The first couple of nights, I experienced horrible nightmares in which I could not awaken from until 2 1/2 hours later when my alarm finally sounded. The next week, my dosage was increased, causing me to experience 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."

• MCa...
• Taken for 1 to 6 months
• April 22, 2018

"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."

• Anonymous
• May 4, 2009

"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."

• Bro...
• Taken for 5 to 10 years
• July 18, 2020

"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!"

• Tru...
• August 1, 2010

"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."

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

"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 bipolar due to the lack of sleep. I almost had to go to the mental hospital before I read a note in my new package proclaiming Xyrem's ineffectiveness due to heat. Lo and behold, I took my new batch of Xyrem last night and felt decent this morning."

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

"My experience with Xyrem is phenomenal. Going back, I can't imagine how I survived before this medication, comparing how I used to feel before taking it. I'm at least 70 percent better. I read a couple of suggestions on this website regarding not eating 2 to 3 hours before and not drinking much water 5 hours before, I will try them to see if I can get any improvement. So far, my only issue is that on the second dose, it wears off quickly. It feels like I passed out for a couple of hours and woke up to pee, and that will be it, but I still can feel that heavy eyes just won't be able to fall asleep again."

• nar...
• August 19, 2014

"I'm on 2.5 mg 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 hours for about two hours in the morning."

• Fib...
• March 2, 2013

"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 2.25 mg 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!"

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

"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 though I had been tranquilized, my back hurt really badly, 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: dizziness, tenseness in the muscles, flushed face, increased libido, munchies."

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

"This medication might have ended up being effective for me if I could have tolerated it long 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 a couple of panic attacks. I quit taking it when I became severely depressed."

• Bai...
• Taken for 1 to 6 months
• April 5, 2019

"This medication has absolutely changed my life in a positive way. I actually stay awake throughout 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."

• wai...
• September 1, 2011

"I have been on Xyrem for nearly 2 months now. I have been slowly increasing my doses and am currently on 4 grams 2 times a night (I'm 30 and weigh about 123 lbs). I take 150 mg of Nuvigil during the day. I still have yet to wake up with this amazing 'refreshed' feeling everyone discusses. One day, I accidentally forgot my Nuvigil at home and was falling asleep driving to work, which happened before I was on any narcolepsy medications. I at least appreciate not falling asleep anymore, but I don't have any proof that Xyrem has contributed to it. I am close to giving up but will carry it out until I have tried the full 4.5 doses of Xyrem for a week or two. Keep your fingers crossed for me because I am desperate to have a normal life."

• oil...
• July 29, 2011

"My husband has been on Xyrem for 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."

• Sle...
• October 12, 2017

"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."

• Sle...
• Taken for less than 1 month
• February 27, 2018

"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 the 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 the 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, I feel like this has changed my life and I’m finally feeling like I get a normal night's rest every night."

• Coc...
• Taken for 1 to 6 months
• August 10, 2018

"I've been taking Xyrem for about 6 months now. The first dose is 4.25, and the 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 150 mg Armodafinil, and my sleep has been worse, and I'm exhausted throughout the day, but this new medicine prevents me from actually being able to take a nap. Xyrem is my nemesis."

• Jul...
• Taken for 5 to 10 years
• July 6, 2017

"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."