XYREM Reviews (SODIUM OXYBATE)Average Rating: 4.0 (26 Ratings)Filter ResultsCompare XYREM with similar:
Type: Rx Drug
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Results are sorted by Age from youngest to oldest (reviews with no age reported listed first). Key to Ratings: 1=LOW (I would not recommend taking this medicine.) Page: 1 2 |
More on XYREM: Reviews Summary | Drug Safety Information
| RATING | REASON | SIDE EFFECTS FOR XYREM | COMMENTS | SEX | AGE | DURATION/ DOSAGE | DATE ADDED |
| 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 | 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 | 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 day | 8/31/2011 | 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 | 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 day | 10/31/2017 | 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 | 4/25/2009 | 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 | 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 day | 10/8/2011 | 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 day | 8/13/2016 | 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 | 5 | Narcolepsy | Works great, I finally sleep through the night! | Cost is too high, Thank God for insurance! | F | 38 | 6 years | 9/6/2009 | 5 | Narcolepsy with Cataplexy | Very good drug. Too bad it is so expensive | M | 39 | 8 months | 7/4/2008 | 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 | 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 | 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 day | 4/10/2010 | 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 day | 7/5/2020 | 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 day | 11/3/2013 | 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 day | 10/14/2021 | 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 | 1 | Narcolepsy | The third dose increase, I finally fell asleep. But not long later, I awoke and felt I was drowning underwater in the worst sleep paralysis with no REM, then I finally came out of it in a frenzied panic attack uncontrollably and repeatedly screaming my boyfriends name and sweating like a freak. It was far more absolutely terrifying than any of the thousands of hypnompic and hypnagogic hallucinations with sleep paralysis I had ever had in my entire life. And ultimately still did not work to keep me asleep. I am brave, but was too terrified to try it again. | I craved the idea of the physical rest and night of eventless sleep this product could bring to my life. I suffered for a few more years unmedicated as Provigil and Nuvigil had problems for me as well (Dopamine reuptake inhibitors). Finally a new Doctor suggesting trying just adding large doses of mixed amphetamine salts (Adderall Immediate release taken in three doses) with a low dose of an antipsychotic to mitigate the unwanted side effects (Geodon). This finally worked, and when it wore off, I would sleep solid and event-free at night. I will enter my age when I tried the Xyrem. | F | 44 | 7 days N/A 1X day | 3/11/2023 |
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). FDA Approval Date: 2002-07-17 (Sources: U.S. Centers for Medicare Services, FDA)