User Reviews for Xyrem
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.
Learn more about Xyrem.
|Cataplexy||2 reviews||1 medications|
|Narcolepsy||41 reviews||15 medications|
|Fibromyalgia||7 reviews||21 medications|
|Summary of Xyrem reviews||50 reviews||8.3|
Reviews for Xyrem
For Narcolepsy "I was diagnosed with Narcolepsy in the beginning of 2014 at the age of 42. Despite a clear diagnoses and despite struggling with this disorder for close to 37 years (first symptoms appeared when I was 5 years old in form of hypnagogic hallucinations and cataplexy) I was resisting my doctors recommend course of action which included first and foremost the use of Xyrem. I had like everyone else visited forums and was very concerned about the lack of success stories and of course the possible side effects. By the beginning of 2015 I came to the realization that I had not only completely exhausted myself but also all alternative routes of fighting my narcolepsy and therefore decided to try Xyrem. I was very nervous and the first few nights and days were difficult and fairly unpleasant as my body didn't appreciate the sodium oxybate. Both my doctor and the central pharmacy were very helpfully, but in the end it is oneself who has to get through it. After 5 days I started to experience what I most of the world would call proper sleep. I go to bed and take me dose and after 15 minutes fall asleep. 2-3 hours later I wake up by myself and take the second dose. Normally I wake a few minutes before the alarm goes off and I manage to get through the day without coffee (impossible a few month ago) and only 200mg of Modafinil. The night is no longer a continues row of dreams, but passes in the blink of an eye. There are a few rules that I feel are key to success. Don't eat 3 hours before going to bed. Don't drink anything put small amounts of water. Stay away from coffee after lunch. Stay away from chocolate and sweets after 5pm. Keep a diary of your progress or get yourself a Jawbone, Fitbit or some other tracking devise. And finally, go out and tell people of your success and visit a forum and leave feedback even when you don't have the time, because other people need to know that there are success stories."
Now I sleep May 12, 2015
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For Narcolepsy "I have been taking Xyrem for 8 years now, and only wish I had started sooner. The first 32 years of my life were spent suffering from undiagnosed narcolepsy and constantly being exhausted during the day. After finally taking myself to a sleep specialist I discovered that, even though I would sleep at night, I was never getting any recooperative sleep. They started me on Xyrem (and methylphenidate er during the day) and I feel so much better now. The cataplexy and sleep paralysis are gone! I sometimes wonder if I am building up a tolerance to it because it may take me an hour to fall asleep, but I love this stuff! I haven't had many side effects, except if I'm still awake after an hour and a half - then it's pretty miserable and nauseous."
Txyrs37 (taken for 5 to 10 years) April 23, 2015
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For Narcolepsy "This medication has changed my life. I have never had a problem falling asleep. But I wasn't experiencing restorative sleep. I have been chronically fatigued my entire life. This medicine has almost completely resolved my cataplexy. I still have an occasional episode. No stimulants ever helped. I could take Ritalin, dexedrine and go right back to sleep. I've never known what it felt like to get stage 4 restorative sleep. It has helped my mood disorder and chronic pain as well. Never underestimate the value of a good nights sleep. This stuff has worked magic. I don't know what will happen when the coupon expires as my insurance company has balked at paying the high price for this."
Bashdude February 24, 2015
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For Narcolepsy "I have been diagnosed with narcolepsy, cataplexy, and fibromyalgia. I was on Provigil and Adderall, and still falling asleep. Doc started me on 2.5 mg twice a night. I was sleeping. At night only! I am on 3.0 mg now, and still taking the Adderall during the day. I am not falling asleep at work, and my cataplexy and hallucinations are almost nonexistent! I still get tired pretty early on in the evening, but I was starting to worry about my ability to continue working. It also seems to be helping with the pain. I get nauseous sometimes during the day, but have found that it's because I need to drink some water or eat something. I feel like the old me again. I just hope the insurance doesn't decide not to cover it."
want my life back 99 February 16, 2015
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For Fibromyalgia "Dramatically reduced pain, fatigue, daytime sleepiness, and fuzzy thinking. The last time I skipped taking Xyrem, I was unable to go to sleep all night. I am concerned about this should I need to quit taking it."
69andup (taken for 10 years or more) January 19, 2015
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For Narcolepsy "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."
narcoleptickate August 19, 2014
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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."
aries_tab (taken for 5 to 10 years) October 23, 2013
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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. "
hopeandme (taken for 5 to 10 years) July 23, 2013
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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!"
sleepingbeauty2013 (taken for 2 to 5 years) July 13, 2013
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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."
sogladitryed May 29, 2013
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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. "
John Freeland (taken for 1 to 6 months) April 23, 2013
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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!"
Fibronot March 2, 2013
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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). "
kslater (taken for 2 to 5 years) November 2, 2012
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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."
Anonymous (taken for 1 to 2 years) October 3, 2012
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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."
Anonymous September 27, 2012
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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."
Anonymous (taken for 1 to 6 months) July 13, 2012
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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."
Anonymous (taken for 1 to 6 months) May 26, 2012
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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."
Jon Pitman February 26, 2012
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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. "
Anonymous January 26, 2012
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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."
Anonymous November 30, 2011
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