Sodium oxybate User Reviews & Ratings (Page 4)

• Chr...
• December 2, 2019

Sodium oxybate for Narcolepsy "It was frightening. I had a psychotic episode. Never had an experience like that in my life. Made me so depressed. I cried and cried. I asked another doctor if she’d ever prescribed it. She said once, and her patient had a psychotic episode."

• Sle...
• June 5, 2020

Sodium oxybate for Narcolepsy "Xyrem was more of a last resort drug for me, as it's not approved for use in IH (Idiopathic Hypersomnia) and also the fact that I'm being treated for anxiety and bipolar II. Modafinil and Vyvanse helped me at least stay awake for a good chunk of the day, but actually waking up was basically impossible. I could set an alarm at 8 a.m. and snooze through all the alarms. My brain was literally craving for me to stay sleeping, it was horrible. With Xyrem, even if I still feel sleepy enough to fall asleep after my alarm goes off, I still hear the next one go off and not have that desperate need to go back to sleep. It caused me to be able to lower my stimulant doses. I'm going up 0.25 g every 2 weeks until I hit 9 g total. The higher the dose, the more refreshed I feel. Side effects for me were muscle twitching in my arms and legs, which did go away when I started increasing my potassium intake and taking magnesium twice a day to balance my electrolytes since Xyrem is literally drinking sodium-and a lot of it!"

• Sno...
• April 24, 2020

Sodium oxybate for Narcolepsy "I’ve been on Xyrem for 3 years. It worked a little better in the first year, but my body got used to it. It works well only if I take it on an empty stomach after fasting for 48 hours. It is only on these occasions that I get enough sleep and wake up refreshed, but then my body retaliates, and when I go back to take it 3-4 hours after dinner, I get to sleep just 2 hours with the first dose and maybe 3 hours with the second dose and wake up very tired. I tried skipping dinner and stopping eating at 2 PM, and again, it worked in the beginning, but then my body adjusted. I guess I’ll just continue to struggle with being tired during the day. Sunosi causes my heart to race, and I couldn’t tolerate it."

• wou...
• Taken for 1 to 2 years
• December 28, 2015

Sodium oxybate for Narcolepsy "I have had narcolepsy ever since I can remember. Instead of hanging out after school, I would come home and go to sleep for the night. If I can sleep, I do, even if I only have 10 mins, I will fall asleep. I can't drive more than 10 mins, even if I manage to keep my eyes open, I start seeing double. It's been a huge struggle that most people don't understand or write off as laziness or being too busy. I have so many crazy stories of things I have fallen asleep doing or things my children have done while I unintentionally fell asleep. Stimulants would help the first couple of days. Day 4, I might as well not even take 1 or 2 or 3 or 4 because I would still fall asleep. Xyrem has helped, but I still fall asleep all day. Currently, I have been taking it for 1 year, thinking of increasing."

• Ree...
• Taken for 1 to 2 years
• August 29, 2020

Sodium oxybate for Cataplexy "Xyrem helped with the cataplexy symptoms and helped with my day-to-day. However, the first dose did not always work, and that left me in a very disorienting state. I also suffer from depression, and the Xyrem intensified this. I overdosed twice because of this. I had zero self-control when taking this medicine. The first overdose was on purpose. The second, I’m not sure, I blacked out. This medicine really helps, since being taken off, I realized how much it was helping. However, mentally, it is better for me to be off it."

• Spa...
• Taken for 5 to 10 years
• April 5, 2019

Sodium oxybate for Narcolepsy "I've been on Xyrem since 2011, and it is a game changer for me. I had fragmented sleep from narcolepsy for several years before my diagnosis, and every night was agony. That said, Xyrem requires frequent adjustment of the two doses, since doctors have no way of knowing which combination of nightly doses works best. You have to experiment until you find your correct doses."

• Kkb...
• Taken for 6 months to 1 year
• December 29, 2018

Sodium oxybate for Narcolepsy "My brother and I both took this medicine for narcolepsy. Started it the same day. Same dosage increased at the same rate. He would fall asleep within 20-30 seconds of taking his and me 45-60 minutes of walking around, zombie-like, talking weird, saying strange things, and talking in a nonexistent language (haha). We both developed ringing in our ears. After 8 months, I was done, my blood pressure was off the charts, my husband wasn’t sleeping because I made the comment about wondering how it would feel falling out of a 3rd story window (I don’t remember any of that). They said the ringing in my ears would stop once off the medicine. 6 years later, ringing still here. I would not recommend it to anyone. My brother went off after 6 months because of ringing, and insurance decided not to cover the cost for him. We had to have it overnight shipped directly to us."

• Dog...
• Taken for 6 months to 1 year
• January 23, 2019

Sodium oxybate for Narcolepsy "My wife's experience with this medication had been horrible. I have seen her take this medicine, and within 15 minutes she is asleep. She is delusional and acts in a childlike manner also. She falls asleep standing at times and has had a few bad falls also. Recently, she fell in the bathroom and was up against the door, and it took me two hours to get her out. My wife has been experiencing delusions and paranoia, but she has become addicted to it also. I am now reaching out to doctors to help with all of this, and as of now, I have found zero help."

• col...
• Taken for 2 to 5 years
• December 14, 2019

Sodium oxybate "I have taken Xyrem for insomnia (not narcolepsy) for the past couple of years. I only take it as needed, and I take it if I wake up and cannot fall back asleep (I do not dose it at sleep onset). This happens very often since I have nocturia (I awaken to urinate 4-5 times a night). The key takeaways: Xyrem will put you to sleep, and it is a deep sleep. However, Xyrem has horrible side effects. At first, it seemed like it energized me for the entire day. Pretty soon, however, the drug turned on me to the point that I feel terribly tired and anxious (anxiety is moderate to severe) the entire day. Tolerance builds very quickly to its potent but short-lived sedative effects, so I only take it twice a week. If you are desperate for sleep, take it (if you can find a good doctor), but be very careful about escalating your dose and watch out for side effects."

• MrM...
• May 19, 2017

Sodium oxybate for Narcolepsy "Narcolepsy with cataplexy; overall very positive results for the past 10 years. Have had some severe side effects at random times, such as major cramping or very painful reaction if taken closer than 4 hours apart."

• Igo...
• Taken for 1 to 6 months
• May 2, 2024

Sodium oxybate for Narcolepsy "I've been on Lumryz for 2 months, and I am adjusting well. I have not experienced any real side effects. This is my first narcolepsy drug. I would say, on average, I'm sleeping about 7 hours per night without interruption. It took me about 3 weeks, but I am happy with the results so far. My days are much better."

• Ten...
• Taken for less than 1 month
• January 28, 2021

Sodium oxybate for Narcolepsy "I have narcolepsy type 1 (w/ cataplexy). I believe my case is fairly mild, as I've not experienced the hallucinations, and I've never fallen asleep in the middle of talking or walking. I've been taking Xyrem for three weeks. The higher doses are definitely more effective than the lower. I don't feel more awake during the day yet, but I am sleeping solidly at night, no more waking up every 45 minutes, and less dreaming before I get to sleep. I'm still experiencing small cataplectic attacks, but I've seen where those aren't really impacted until you get to 9g a night. On the downside, if I wake up before the dose has run its course, I'll be buzzed or stone drunk and dizzy. I'm encouraged by other folks saying that those symptoms dissipate over time. So far, par for the course and sleeping well."

• All...
• Taken for 1 to 6 months
• February 8, 2016

Sodium oxybate for Narcolepsy "For the last month, I have been sick. Very restless sleep, muscle spasm, vomiting for several hours with movement after meds have worn off. I had to stop using Xyrem this month because the same faulty batch I got in January they shipped me again this month. I tried to call and complain about the side effects. Unfortunately, the SDS Pharmacy isn't offering any solutions to fix or solve the issue that a lot more people are dealing with. So disgusted with this company."

• Bsm...
• Taken for less than 1 month
• October 1, 2021

Sodium oxybate for Narcolepsy "I was so hopeful that this med was going to fix me. The taste I read was awful, but it wasn't too bad. Tasted like ocean water. I take psych drugs that are sedating and muscle relaxers and opioids, which had to be spread out 6 hours before taking Xyrem. That means ALL my sedating drugs have to be taken by 3 pm, which kind of sucks. Took the first 2.25 dose at 9 pm. Took a half hour to kick in. Fell asleep. Up by 11. Dang. I read you can take the second dose 2.5-4 hours after the first. So at 11:30, took the 2nd dose. Half hour wait again. 1 am rolls around, I'm WIDE AWAKE. I understand it takes some people time to titrate up, and with the low doses, it can be frustrating. But then around 3 am, I had 2 panic attacks, full body flushing, heart racing, severe impending doom feeling. The anxiety lingered throughout the next day. I tried it again on night 2, and the SAME things happened like clockwork. My doctor advised me to come off and said I must not tolerate the drug due to the anxiety. *Crying* back to square one."

• Bor...
• August 18, 2021

For Narcolepsy "First, narcolepsy symptoms began after a flu, and after a few years, sought a diagnosis. First, started on modafinil 200 mg, then five years later, dosage was increased to 400 mg per day. Became refractory to it after 10 years. Dexedrine/Methylphenidate gave me palpitations and tachycardia. My sleep specialist gave me Xyrem - which was a game changer - never slept so well since I was a child. But I simply could not afford the cost - how can a drug company charge more for a product than what you can get it on the street?"

• Ida...
• Taken for 2 to 5 years
• February 3, 2018

For Narcolepsy "After getting diagnosed with narcolepsy, my local neurologist tried several medications that my body did not like! In fact, in a liver function test, my AST levels were 196 (normal range is 0-40), ALT was within range. Basically, my liver was inflamed. So, I traveled to a new doctor who got me off all the pills and started me on Xyrem. It took some time getting used to it. I was nervous for 6 months. Strange things occurred if I woke up too soon. The trick is starting a low dose and every 3 months, make an adjustment until you are sleeping 3-4 hours solid. It's ridiculously expensive, and insurance companies will deny it every year, which is a pain, but it's the only medication that my body will tolerate. It's a lot of work! If you are on Medicare like I am, just this year, it's really expensive. So, applying with NORD to help cover it, I hope. The pharmacy is very helpful, but it takes time and energy to jump through all the hoops. I'll gladly jump since it's my only option."

• mad...
• Taken for 5 to 10 years
• November 30, 2023

Sodium oxybate for Narcolepsy "This medication is amazing. I'm astonished at how well I sleep and how well I wake up in the morning, often without an alarm clock for the first time in my life. Daytime sleepiness is greatly reduced when combined with additional daytime medication."

• Jac...
• Taken for 2 to 5 years
• June 28, 2019

For Narcolepsy "Since being on Zyrem, I noticed a huge reduction in my daytime sleep episodes, that, with the addition of Vivance (3 years ago), has given me 3 years of zero daytime sleep episodes using the same original dosages. I have had a few issues with dose mistakes, leaving me sweating and hot. We are given a huge pile of safety information telling what can go wrong, but zero practical info on what to do if it does. I was told to ask my doctor. Answer: Go to the refrigerator and eat. Simple, effective, and a lot more quicker than having to call my local poison hotline first. I would have given a 10 otherwise, as the EDS pharmacy is professional and prompt. Just expect your questions to have secret answers that they cannot divulge by FDA law. It's all about safety, but I'm pretty sure it's not."

• MLE...
• Taken for less than 1 month
• March 27, 2022

For Narcolepsy "After taking Xyrem, I was amazed to feel what regular people feel when they sleep and how they wake up! It was amazing! My brain fog and anxiety completely resolved, and I had no need for daytime stimulants. Physically, my brain no longer felt heavy and congested. I don’t know how else to explain it, but just amazing to feel what normal feels like."

• Tir...
• Taken for less than 1 month
• October 31, 2015

For Cataplexy "I have been diagnosed with narcolepsy with cataplexy one month ago. I realized something was wrong with my sleep habits several years ago, but attributed it to stress. I thought I slept well at night only to find out that I never go into restful sleep. The constant chain of dreams is frustrating and can be disturbing. I do take modafinil with mediocre results. I was prescribed Xyrem, and at first I was excited, then became extremely terrified of this type of medication. I thank everyone for sharing the positive results as many mostly will mention the negative. It has been very helpful in calming my nerves for my first dose tonight!"

• Mrs...
• Taken for less than 1 month
• March 2, 2022

Sodium oxybate for Narcolepsy "I’ve been on a single nightly dose for a little longer than a week and was sooooo happy to feel “normal.” I take it at 11 pm - 12 am and wake up 6:30 am - 8:30 am without an alarm. Excessive drowsiness greatly reduced. Side effects were feeling hot and a burning, aching feeling in legs. I was willing to live with that in exchange for being able to clean my kitchen and vacuum in the same day. But 2 nights ago, within minutes of taking the dose, on an empty stomach, I started feeling very nauseous and belching. Last night, after about 20 minutes, I spontaneously vomited 3 times and then only slept 4.5 hours. Why would this start after a week? I’m devastated. Has anyone else experienced this? Does it stop?"

• Anonymous
• October 12, 2021

Sodium oxybate for Narcolepsy "I admit, I was greedy to feel better and not well-informed about the process of titration when I began this med; I followed the titration schedule but kept increasing the dosage even when my EDS improved and I noticed my anxiety was heightened. After my first night at 4.0x2, I had a full-on anxiety attack. Reduced the dosage to 2.25x2, another anxiety attack. I had to go off Xyrem for a painful month while getting on 10 mg/day of Buspirone, a non-sedating anxiolytic. Talked a lot with my sleep doctor, psychiatrist, and the pharmacists at ESSDS. Now I only take one dose of 3.0 when I wake up (on my own or to the alarm) in the middle of the night, between 2:30-3:30 am. I'm completely off the Ritalin I relied on to stay alert/awake. So grateful I found a dosage level that doesn't cause debilitating anxiety and wish I'd known to take more care through the titration process, stopping when my EDS was affected, not because the Rx notes on the bottle say to keep increasing."

• Bel...
• Taken for 5 to 10 years
• December 18, 2020

For Narcolepsy "I have ME/CFS, and Xyrem saved me. I experienced a plethora of crippling symptoms, including horrific insomnia for 7 years. Then my doc prescribed me Xyrem, and I regained back some functioning, making life worth living again. I have some side effects, but the benefits hugely outweighed the side effects."

• dom...
• Taken for 6 months to 1 year
• September 7, 2025

For Fibromyalgia "I've had fibromyalgia for over 30 years and was recently diagnosed with narcolepsy. I was prescribed Xywav and it greatly improved my sleep. It helped with the brain fog from fibromyalgia but doesn't take away the fibro pain. I was hopeful but disappointed. Xywav works great for narcolepsy but not for fibromyalgia."

• Mis...
• Taken for 1 to 2 years
• July 10, 2025

Sodium oxybate for Narcolepsy "The first few nights, the medicine kicked my booty. I was sedated, but I was in a state of desperation to get food. A year and a half later, my sleep is about 5 hours a night, not as good as the previous 8 hours. My body is getting used to it, but I am living! I am able to homeschool my children, drive, and stay awake without naps. The only side effect I cannot kick is hunger, it comes within 15 minutes of taking. I have to fast all day because I'll eat 2,000 calories uncontrollably. I gained 50 pounds on this drug, now I'm able to maintain my weight for the most part. On heavy eating nights, my Xyrem does not work as well, of course, but at least I can still get some benefit from it. I told my doctor about the extreme hunger, he found it was a small percentage of people that it has that effect, I was one of them. My insurance is changing, and I'm afraid I'm going to lose my Xyrem or have a huge copay. I can't go back to my original life."