Drug Ratings for XYREM

Average Rating: 4.6 (17 Ratings)

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Key to Ratings: 1=LOW (I would not recommend taking this medicine.)
5=HIGH (this medicine cured me or helped me a great deal.)   

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 5  Narcolepsy w/Cataplexy chronic pain Started at 3mg (2xnight) now 4.5mg ( 2x night) helped me get my life back and work full-time, also taking Dextroamphetamine 10mg (IR) PRN 2xday and Dextroamphetamine 15mg(ER) 2x day recently changed to day med Modafinil 200mg 1xdaily due to increased tolerance to Dextroamphetamine and lost its effectiveness and also to give my body a break. Unfortunately, my productivity & energy level is now way low although surprisingly my analytical skills & verbal skills are very improved...sometimes too obsessive. With Xyrem at night....sucks if you dont go to bed immediately or if something forces you to wake up like an emergency or loud neighbor or needy kids because I look and act drunk...a happy drunk though that has the munchies big time...hide the food! Gotta turn out all lights...turn off TV...no phone or Xbox or games or else your night sleep patterns are ruined...at least for me. Overall well worth the peace of mind and being able to function closer as a "normal" human without so much Cataplexy during day and less sleepy time during g day. Still need to take mini naps but a 80% quality of life improvement for me as a professional...alot less day time hypnogagic hallucinations and alot less Cataplexy attacks that make me look stupid during meetings. ;) oh..recently added Gabapentin 300mg to address cervical herniated disc pain and hand and feet radiculopathy...only 2nd day...so far working well...over heated hands & feet went away and pa F 39 2 years
4.5 mg 2x
 5  CFS I was bedridden from CFS prior to Xyrem. 8 years later I'm still taking it and I'm still out of the bed enjoying activities with the family. I can even exercise without post external malaise. Before Xyrem physical therapy had me extra sick for days. I can't believe CFS is still an off label diagnosis. I'm so afraid the insurance company is going to take it away from me one day and once again I will be bedridden. Please help us and approve Xyrem for CFS! F 40 8 years
9 ml
 5  Idiopathic daytime sleepiness None It gave me my life back - maybe even better. I used to sleep all day and be awake all night, like I was on Chinese time. Other sleeping pills or alcohol rarely worked and made me groggy. With Xyrem I have no grogginess and wake up alert and rested. My Dr said it dramatically improved my "sleep architecture" the amount of time I spend in the various phases of sleep. Can't imagine living without it - just wish it was not so expensive... F 43 2 years
4 cc 2X D
 3  Hypersomnia/Cataplexy High BP, renal (kidney) abnormalities on bloodwork, & because of xyrem I'm on 4 additional medications which have almost killed me (heart issues). Personally, I'd love to know how much of a kickback the Dr. receives for each prescription of xyrem filled! BTW, I am at the top dose & it takes approximately 45min for me to feel the effects. :( F 35 2 years
4.5g 2x PM
 5  Fibromyalgia/Insomnia I suffer severe nausea if I have to get up and move around after taking it. This drug has saved my life. I had basically been sick my entire life. I hadn't worked in 22 years. At the time I began taking it, I had entered somatapause, and I was losing my ability to function at all. Two different doctors had warned me that I needed to start researching nursing homes before I turned 50. Now I work every day, and can exercise (some) and have been incredibly well. The lack of approval by the FDA and my insurance company are hurting me though because of the cost. F 59 5 years
3 grams 2X D
 4  Narcolepsy When I first started taking it I sometime felt like someone was sitting on my chest and my arms and legs began to feel very heavy. It really helped me get some of my life back, I am no longer sleeping 18 hours a day :). Of course I still have pain from Fibromyalgia and OPLL but at least I can wake up F 37 1 years
4.5 2X D

 4  Complex Sleep Apnea Restless legs in the morning, feeling that I have to move my legs to get any comfort. Started initially as a general ache, but has progressed to what feels like full blown RLS. Overall, however, Xyrem has helped a lot with the EDS. It's now a tradeoff if I can deal with the RLS and keep reaping the benefits of being less sleepy. F 29 2 years
4 2X D
 4  Narcolepsy/cataplexy No real side effects. A little disoriented and clumsy if you have to get up in the middle of the night while under it's effects. Life changer. This drug has helped me sleep more normally throughout the night without all of the wakenings and arousels associated with Narcolepsy. No more Sleep Paralysis or Night Tremors either. I use to wake up each morning feeling terrible and more tired then I was when I went to bed. Now I wake up and am ready to go, feeling good. Has also decreased my excessive day time sleepiness associated with Narcolepsy. M 40 3 years
3.75 2X D

 5  hypersomnia/insomnia if you fight sleep when it kicks in, watch out. some nausea and clumbsiness. extreme hunger once medicine starts to work. drug has been a miracle for me. I actually take .5mg of clonazapam (klonopin) as well. and yes thank god for insurance. The crazy things I have noticed is that if you fight the sleep it brings on, it will make me out of my mind-- nauseous, disoriented, etc. i do much better on it when I take it and just turn out the lights. A+ F 25 3 months

 5  Fibromyalgia A little clumsy in the middle of the night while getting up to go to the bathroom and taking 2nd dose. Without Xyrem I don't think I would be able to continue working at my full time job. I take 3.75 grams twice a night. This was prescirbed for me after a sleep study. It has not taken away all my morning stiffness or feelings of being sluggish but I would say I've seen about a 50% improvement. This is a VERY expensive drug - monthly cost is retail of over $2,000 but thank GOD for my health insurance I only pay $25 a month. F 49 1 years
 4  Fibromyalgia Lower doses didn't get me to sleep. Second week on next level the second dose would work but not the first. slight headache in am It would be great if someone could add what dosage they were on when it worked for the fibromyalgia. I am hoping that it will work for me - - its only been two weeks, just not sure if dose is too low did you all take a few weeks to ramp up to higher dose ? F 49 14 days
 5  Fibromyalgia Occasional nausea Xyrem gave me my life back! I started taking it for sleep disturbances related to fibro, and now I don't know what I'd do without my nightly Xyrem dose. It makes me feel refreshed and ready to go the next day, without any grogginess. F 30 2 years

 5  Narcolepsy Works great, I finally sleep through the night! Cost is too high, Thank God for insurance! F 38 6 years

 5  Narcolepsy / Cataplexy Slight dopamine rebound in the morning that caused anxiety at times. This is a great drug for those who suffer from sleep problems. It works to normalize the sleep pattern. I read that it chemically acts as the REM sleep cycle. It helps me stay alert, and times that I have stopped taking it, I notice that my loss of sleep quality allows my immune system to drop, so I get sick easily. M 35 7 years

 5  Fibromyalgia Clumsy getting out of bed in middle of night. Astonishingly effective. Eliminated my fibro pain and stiffness. Xyrem allowed me to sit all day and only be slightly stiff, when before I'd be nearly unable to walk if I didn't move around regularly. With fibro, sleep quality is the key. Recently I started taking a new medication that interferes with my sleep, while continuing Xyrem. My fibro pain and stiffness are back, though still better than before. Note: I also use CPAP for sleep apnea. F 51 3 years

 5  Alcohol withdrawal None This drug helped me a lot to get rid of my alcohol addiction. I think I've been an alcoholic since I was 20. It was literally making me die, lost a lot of the good things in life. This drug got rid of the cravings and all sort of other symptoms. Plus it made look to life in a better way. M 52 5 months

 5  Narcolepsy with Cataplexy Very good drug. Too bad it is so expensive M 39 8 months

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