Sodium oxybate User Reviews & Ratings (Page 4)

• Sassie
• Taken for 10 years or more
• January 2, 2023

Xyrem (sodium oxybate) for Narcolepsy "I was diagnosed in 2006 with narcolepsy-cataplexy and obstructive sleep apnea. I began taking Xyrem in late 2008. Because I also had OSA, I was required to use a CPAP machine while taking Xyrem, which was vitally important for my safety and success. I immediately began sleeping, and had a significant reduction in daytime sleepiness. Not only that, but the weight I had accumulated from a 14-16 year sleep debt began melting off of me because I was finally getting deep sleep. You must allow a minimum of 2-3 hours between your last meal and bedtime, otherwise you will not sleep well. I also made nutrition/lifestyle changes like consuming a very low carb/ketogenic diet (carbs put me to sleep). Over time I was able to reduce my dosage. I have taken Xyrem for 14 years, all the while living a normal life, raising my children, earning two college degrees, and enjoying a successful career. I am so thankful for the impact Xyrem has made on my health and life. Thank you."

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

Xyrem (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 is was helping. However mentally it is better for me to be off it."

• Momof...
• January 25, 2020

Xyrem (sodium oxybate) for Narcolepsy "Been tired since high school. Diagnosed last year at 37 years old with 5 kids ages 17-2. I’m post gastric bypass 12 years ago. Hit or miss some nights work others don’t. After 1st dose 3 hours sleep and 2nd dose lucky to get 2 hours. My 15 yo son has narcolepsy too. A little more sleep than me but hard to get him up. He is still tired during the day as well. I have a new Med called Sunosi if I need it during the day but my heart races too fast. I’m going to try not eating 3 hours before bed as some have said. Xyrem also works better the colder it is so going to try an ice pack in lunch box next to bed for 2nd dose. Weird dreams after waking after 2 hours on 2nd dose. Nothing is a miracle drug but it gives me some relief."

• Severe...
• Taken for 6 months to 1 year
• April 18, 2022

Xyrem (sodium oxybate) for Narcolepsy "Worst drug ever. Some nights I wouldn't even sleep, I would be high and euphoric while I had to wake up at 5:30am to work in the hospital. Severe withdraw as soon as it wears off leading to panic attacks and not to mention severe depression. Felt like I never woke up refreshed, I was in a mental fog all day until it was time to take it again and I built tolerance fast. Worst part the side effects never mentioned was anxiety and depression until I called the hot line over and over. Even my. dr never heard of that happening. My eyes had discharged, my pupils were huge and I even pointed it out to my doctor. Felt like I was in daze for a whole year"

• Sparky
• Taken for 5 to 10 years
• April 5, 2019

Xyrem (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."

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

Xyrem (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 4-5x/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-severe) the entire day. Tolerance builds VERY quickly to its potent but short-lived sedative effects, so I only it 2x/week. If you are desperate for sleep, take it (if you can find a good Dr.), but be very careful about escalating your dose and watch out for side effects."

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

Xyrem (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."

• MrMar...
• May 19, 2017

Xyrem (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."

• Bsmom
• Taken for less than 1 month
• October 1, 2021

Xyrem (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 second dose 2.5-4 hours after first. So at 11:30 took 2nd dose. Half hour wait again. 1am rolls around, I'm WIDE AWAKE. I understand it takes some ppl time to titrate up and with the low doses it can be frustrating. But then around 3am 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 might 2 and the SAME things happened like clockwork. My Dr advised me to come off and said I must not tolerate the drug due to the anxiety. *Crying** back to square o"

• Borzo...
• August 18, 2021

For Narcolepsy "First narcolepsy symptoms began after a flu, and after a few years, sought a diagnosis. First, started on modafinil 200mg, then five years later, dosage was increased to 400mg 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 good 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?"

• Idaho...
• 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 Dr. 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 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."

• Jack
• 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 yrs 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,??. Its all about safety, but I'm pretty sure its not."

• MrsH
• Taken for less than 1 month
• March 2, 2022

Xyrem (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 11pm -12am and wake up 6:30am 8:30am 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 dose, on an empty stomach, I started feeling very nauseous and belching. Last night after about 20 minutes I spontaneously vomited 3x 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

Xyrem (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 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 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 2.30-3.30am. 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."

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

For Cataplexy "Hi, I have been diagnosed with Narcoplepy w/cataplexy 1 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 Modafinill with medioka results. I was prescribed Xerym and at first I was excited then became extremely terrified of 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 fist dose tonight!"

• Bella
• 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."

• 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."

• Spencer
• Taken for 1 to 6 months
• July 15, 2024

Lumryz (sodium oxybate) for Narcolepsy "Coming from Xywav, I was ready to not have to wake up in the middle of the night for my second dose (which I missed fairly regularly). I love Lumryz and its one dose! Waking up just feels so natural now, and I feel great all the time since I'm not missing doses. I haven't had any problems with the large salt amount, I take Magnesium every night before bed. My blood pressure was usually 110/70 - 120/80, at first it bumped up to 145/75, but I take 2 garlic pills every morning, and it's back down to 120 or 130/70. I can't recommend this enough! I myself am covered by Avadel's patient assistance program since my insurance didn't cover it, hopefully it'll be easier for others to get it covered."

• Poppy
• Taken for 1 to 6 months
• July 4, 2022

For Narcolepsy "My Doctors call my narcolepsy severe and for 6 months I was going through trial and error trying to find the medication best fit for me. In March, my doctors told me they would like to trial Sodium Oxybate with me. I never expected it to be this incredible. It has honestly spun my entire life around and I can finally do things in the day time and not feel completely shattered after. Before, riding my horse would exhaust me and I would take a big nap afterwards but now I don't feel the need too. I can stay awake most days all day with no naps. It makes me feel so much happier and brighter, I used to be very grouchy simply because I was so tired! Some negatives would be the symptoms I've experienced since taking it. Feeling sick and having no appetite. I went from 10.6 stone to 8.13 stone within about 4 months, although I have stopped losing weight it has cause issues with my day time medication working too well because of my weight loss, rising my heart rate."

• Jenner
• Taken for less than 1 month
• July 15, 2018

For Narcolepsy "Started Xyrem (6/15) and I didn't sleep for 36 hours. I was a walking zombie. Then I started to get severely chapped lips, it got worse I had a bunch of sores in mouth & outside my mouth. My face was burned from the inside out & I had blisters all all over my face. Then what really got my attention was on Thur 6/28 my BP was high my Dr sent me to ER my pressure was 181/123 pulse 143. I was a nervous wreck on this med and I had had a rare reaction called Stevens Johnson Syndrome (SJS). For the first weeks while I was titrating my dose, I honestly I didn’t need nap while taking Xyrem. For the 1st time in my life I wasn’t sleepy. When I take 2-3 doses, I wouldn’t want to sleep, I wanted to go somewhere & do something other than take nap. With my side effects & complaints, I just wish the company would be more compassionate. I just wish the SDS pharm would seem concerned, other them saying we have never heard of anyone having side effects or reaction similar to mine."

• Igor
• Taken for 1 to 6 months
• May 2, 2024

Lumryz (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."

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

Xyrem (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."

• sol
• Taken for 1 to 2 years
• February 19, 2019

For Narcolepsy "I love this medication but I'm having the absolute worst time with getting it renewed it took two months to get the prescription filled last year and its taken weeks just to hear I've been denied again and it's heart breaking cause having it gave me the ability to get my first job and start college and iIdon't know what to do without it."

• Fibro...
• October 29, 2009

Xyrem (sodium oxybate) for Fibromyalgia "Xyrem got rid of my pain significantly as well as the feeling of being drained. I felt as if I no longer had fibro. The side effects were difficult. Still trying to work with those."

• Slick
• Taken for 2 to 5 years
• May 15, 2018

Xyrem (sodium oxybate) for Narcolepsy "XYREM will ruin your life. I don't care how many people say it has helped them. You cannot maintain taking this drug for your entire life, it is not safe. "