The following information is NOT intended to endorse drugs or recommend therapy. While these reviews might be helpful, they are not a substitute for the expertise, skill, knowledge and judgement of healthcare practitioners in patient care.
Xyrem (sodium oxybate) for Narcolepsy: I have been taking xyrem for nearly 10 years. It has changed my life for the better. I don't mix it with water; I just take it straight twice a night. I am on 3.75 mg 2x per night. I stay on a pretty strict sleep schedule even on the weekend.
Xyrem (sodium oxybate) for Fibromyalgia: I'm pretty frustrated that they didn't have Xyrem for Chronic Fatigue Syndrome because it is such a huge help for it. Like many I have fibromyalgia and CFS (like a world renowned doc I have seen he believes that it is the same condition). I would just like to say that for 10-11 hours each day I now shower, get ready, take my son to school, take my son to his practices, go to his games, go on vacations, go places, do laundry, iron, wash the dishes, make lunches, take care of the dog, etc. Before Xyrem all I could do was lay and feel horrible. I take it's different than most because this is how it works for me. I have to wait at least 3 hours (due to digestion) after eating a meal before taking it.
14 users found this comment helpful.
Review by sleepingbeauty2013 (taken for 2 to 5 years):
Xyrem (sodium oxybate) for Narcolepsy: This medicine is a life-changer. Has reduced my excessive daytime sleepiness by about 80%. I rarely have to take any daytime narcolepsy medicines. Has also stopped the hypnopompic hallucinations almost completely. I feel like I got my life back. I went from considering applying for disability to working full time with no accommodations. This medicine gave me my life back! Just be aware that it can take a good 6 months to adjust to it, find your therapeutic dose, and work off your sleep debt (from lack of deep sleep). I ended up being prescribed an anti-nausea medicine while I was titrating my dose in order to overcome the nausea at first. But now I can take it just fine. It's tough to adjust to but so worth it in the long run!
11 users found this comment helpful.
Xyrem (sodium oxybate) for Narcolepsy: Wish I had been prescribed Xyrem sooner! Amazing the difference I feel. The taste is horrible but mixing with Crystal Lite lemonade makes it bearable. Was taking 30mg Adderall 3x a day and still struggling to get through the day. Now I'm only taking 30mg a day. I feel so much better.
Review by John Freeland (taken for 1 to 6 months):
Xyrem (sodium oxybate) for Narcolepsy: 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.
Xyrem (sodium oxybate) for Narcolepsy: 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!
Xyrem (sodium oxybate) for Narcolepsy: 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.
Xyrem (sodium oxybate) for Narcolepsy: 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).
Xyrem (sodium oxybate) for Narcolepsy: I have been taking this a little over a year. I just recently went up to the highest dose. I like this medicine with the exception that the first dose makes me feel stoned and I get hungry. As long as I go straight to bed and not watch t.v. or talk to my kids I am ok. If I do anything other than go to bed I don't go to sleep. When I do go to sleep I don't even have to set an alarm I automatically wake up. I am still tired in the mornings and depending on work it can be worse at other times. I take Ritalin 2x during the day. My quality of life has improved to the point where I do not fall asleep while working, I don't race to get home to lay down, I don't take naps as much as I used to. I am still "tired" but functional.
13 users found this comment helpful.
Xyrem (sodium oxybate) for Fibromyalgia: I can always count on getting a deep sleep using 4.5g 2x night. Sometimes I'll use it 3x in a night. I have used it for almost 3 years. Just to see if I was addicted I stopped cold turkey and had absolutely no adverse symptoms. Just to be really sure I have stopped suddenly for a week or so about 3 times in as many years and never a bad reaction. This is absolutely the best medicine that I have tried for Fibromyalgia, and I have tried so very many, almost all of which had terrible withdrawal symptoms when I went off of them.
22 users found this comment helpful.
Xyrem (sodium oxybate) for Narcolepsy: 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.
Xyrem (sodium oxybate) for Narcolepsy: I love this medicine! I am pretty young and had never had to take medicine before, my doctor started me on Nuvigil but it gives me a headache every day. After a month he started me on Xyrem. At first it was too low a dose (1.5 grams) and I felt like I hadn't slept at all but then he upped it to 3 grams and I don't even have to take the Nuvigil anymore. I can get 8 hours and stay awake all day, I do get pretty sleepy after eating but that is nothing compared to not having any kind of medications to help. I do feel sick if I wake up too early, or if I wake up on time it takes an hour before I can stomach food.
Xyrem (sodium oxybate) for Narcolepsy: I was on 40 mg of Dexedrine and 40 mg of Ritalin a day and still had to quit work as I was falling asleep. Stopped both medicines the day I left work. Started on Xyrem and now am back at work full time at age 69. A miracle.
17 users found this comment helpful.
Xyrem (sodium oxybate) for Cataplexy: I've been taking Xyrem for about 6 yrs at 4.5gms 2 x a night. My doctor said I had the worst case of Cataplexy he'd seen in his career! Xyrem with 40mgs of Desoxyn and 150mgs 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 some day. 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.
Xyrem (sodium oxybate) for Narcolepsy: This has been the only medication that has worked to combat both my narcolepsy and cataplexy symptoms. Before taking this I was just on high doses of stimulants and even though they helped energy wise I still had massive brain fog and when my stimulants wore off my cataplexy got even worse. This stuff is a miracle and have no idea what I would do without it.
15 users found this comment helpful.
Xyrem (sodium oxybate) for Cataplexy: 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.
Xyrem (sodium oxybate) for Narcolepsy: I have been on Xyrem for nearly 2 months now. I have been slowly increasing my doses and am currently on 4 grams 2xs/night (I'm 30 and weight about 123lbs). I take 150 mg of Nuvigil during the day. I still have yet to wake up with this amazing "refreshed" feeling everyone discusses. 1 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 2. Keep your fingers crossed for me because I am desperate to have a normal life.
Xyrem (sodium oxybate) for Narcolepsy: 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.
11 users found this comment helpful.
Xyrem (sodium oxybate) for Narcolepsy: I started Xyrem about 3 months ago, and I couldn't happier. I tried Nuvigil, Wellbutrin, Ritalin, and Prozac, and nothing kept me from sleeping 14 hours a day with hallucinations and cataplexy. After just a few weeks, I was able to stay awake ALL DAY LONG, and I haven't had ANY cataplexy in the past two months. I also got to cut my stimulant use by 2/3 during the day. I was nauseated at first, but after a few weeks it went away. I have also lost 30 pounds without trying after starting this medicine, even though it makes me hungry at night. I still have sleep attacks, but they are usually once every one or two weeks. I would much rather have that than everyday!
22 users found this comment helpful.
Xyrem (sodium oxybate) for Narcolepsy: 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.
15 users found this comment helpful.
Xyrem (sodium oxybate) for Narcolepsy: I started taking Xyrem about four weeks ago. It is very easy to take and since taking 4.5 g 2x/night, I know pretty accurately when I will wake up (midnight alarm is not needed). I am also taking Adderall 5-10 mg 2-3x/day and I no longer feel tired and am very focused during classes. Since taking Xyrem, even at the highest dose, the only adverse side effect I have had is nausea, if I don't go to sleep within 20 minutes after taking it. HIGHLY RECOMMENDED.
21 users found this comment helpful.
Xyrem (sodium oxybate) for Narcolepsy: Just started my 6th month of Xyrem and not sure it is doing anything except keeping me awake every other night, giving me the munchies, waking me up (if I slept) freezing and decreasing the effectiveness of my Adderall up to 60mg 2xday, was taking 1/2 that prior to starting. 1st 2 months complete exhaustion, facial pain, sinus pain and just miserable.
Xyrem (sodium oxybate) for Narcolepsy: My 2nd night with Xyrem was last night. I was not expecting an overnight miracle, but I was thinking it would have been different. No side effects. Tired, but hopeful for these next couple weeks.
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