XYREM Reviews

Average Rating: 4.1 (25 Ratings)

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 SEDATIVES HYPNOTICS    DEA Schedule III   

 Type: Rx Drug
  

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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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RATING  REASONSIDE EFFECTS FOR XYREMCOMMENTSSEXAGEDURATION/
DOSAGE
DATE ADDED
 
 1  Narcolepsy I never had felt any kind of mood issues until I started taking Xyrem. Xyrem did help me wake up in the mornings & sleep less during the daytime but mentally I felt SOOO MISERABLE & HAD HIGH BLOOD PRESSURE ! I NEVER FELT SO MISERABLE MENTALLY!!!!! I wish they had medication that could help with very low irritable dull moods. If there was smtg that help I would still be taken Xyrem­ F 43 0 months
9 2X D
10/14/2021
 3  I had cataplexy Sweating, fatigue and some hearing loss With tinnitus after taking the medicine . Anybody has experienced this? M 42 0 days
2X D
7/5/2020
 5  Narcolepsy w/ cataplexy When I first started taking it there was extreme weight loss. Lost 30 pounds in a little over a month, but this was the first time my body ever felt rested in my life. The dosage was 4 grams twice per night, but the problem was the anxiety/depression that accompanied it. Dropped to 2.75-3 grams twice per night for many years after that and it lessened the mental side effects. There has not been any other notable bad side effects for me. I have found that my body has built up a tolerance over the years and I now take between 3-3.25 grams twice per night. Each dosage only lasts about 2 hours anymore versus the 3-3+ it used to. I occasionally give myself a break from xyrem. The first night is really tough to sleep, but usually about 24 hours after stopping I begin I begin to sleep more and have extremely vivid dreams. After 2-3 days of not taking it the daytime sleepiness begins to come back and some cataplexy begins to show itself. M 38 16 years
3g/2x
1/10/2020
 2  Chronic insomnia Increased blood pressure (from 110/65 to prehypertension range, up to 138/90), mild tachycardia (rapid heart rate), nausea, night sweats, panic attacks, depression This drug might have been effective for my sleep disorder if I had been able to stick with it and titrate up to the highest dose, but I had to quit taking it because of the side effects. It caused me to become severely depressed, and caused a significant rise in blood pressure and heart rate. F 44 17 days
3.75 grams
10/20/2018
Email
 4  Fybo and narcolepsy If I take the 2nd dose too late ...I am a bit groggy but other than that ...no side effects 50 7 years
7.5
9/18/2018
Email
 2  Narcolepsy Caused anxiety during the day. Sometimes mild, sometimes serious. On higher doses, the anxiety turned to a mild to moderate depression and frequent crying. It definitely made me less tired/sleepy during the day, but caused a persistent anxiety, sometimes depression, and sometimes irritability. It was not worth the trade off. I tried stopping eating 3+ hrs before bed before the xyrem dose, spacing the 1st and 2nd nighttime dose earlier and later, lowering the 1st and 2nd dose down from 2.25 to 1.5 or less, and increasing the 1st and 2nd dose. The higher the total dose, the worse the anxiety and depression, but the less tired I was. Fortunately, my diagnosis of narcolepsy without cataplexy is a borderline case, so just allowing myself to sleep 9-10 hrs/day combined with adderall is enough to prevent sleepiness from being a problem. Many people will probably benefit from this medication and wouldn't have these same side effects. This is just my experience. M 32 3 months
4.5 1X D
10/31/2017
Email
 5  Narcolepsy w/ cataplexy Slight dehydration, "munchies", mild intoxication, euphoria, increased sex drive Great medication. Truly life changing. Titration can be rough, but totally worth it. F 27 3 months
4 & 3.75
7/17/2017
 3  narcolepsy with cataplexy It works great gave me my life back but caused a lot of depression and anxiety. Had to go on Zoloft The customer service is HORRENDOUS!!!! if not for this is give them a 5 F 37 8 years
4.5 2X D
8/13/2016
Email
 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
5/28/2014
Email
 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
1/18/2014
Email
 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
11/3/2013
Email
 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
10/24/2012
Email
 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
12/8/2011
Email
 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
10/8/2011
 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
8/31/2011
Email
 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
4/10/2010
 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
12/12/2009
 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
11/15/2009
Email
 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
10/13/2009
Email
 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
10/10/2009
  

XYREM  (SODIUM OXYBATE):  This medication is used to treat narcolepsy, a condition that causes severe daytime sleepiness. Sodium oxybate can decrease daytime sleepiness and also reduce the number of sudden short attacks of weak/paralyzed muscles (known as cataplexy) that can occur in patients with narcolepsy. Sodium oxybate is a central nervous system depressant. It is also known as gamma hydroxybutyrate (GHB).   (Sources: U.S. Centers for Medicare Services, FDA)

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