Sodium oxybate for Narcolepsy User Reviews (Page 4)

• Bor...
• August 18, 2021

"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?"

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

Sodium oxybate "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."

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

"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."

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

"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

"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."

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

Sodium oxybate "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 "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

"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."

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

Sodium oxybate "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."

• Pop...
• Taken for 1 to 6 months
• July 4, 2022

"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 daytime and not feel completely shattered afterward. Before, riding my horse would exhaust me, and I would take a big nap afterward, but now I don't feel the need to. 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 caused issues with my daytime medication working too well because of my weight loss, raising my heart rate."

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

"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 it's taken weeks just to hear I've been denied again. It's heartbreaking, because having it gave me the ability to get my first job and start college, and I don't know what to do without it."

• Jen...
• Taken for less than 1 month
• July 15, 2018

"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 my mouth & outside my mouth. My face was burned from the inside out, and I had blisters all over my face. Then what really got my attention was on Thur, 6/28, my BP was high, my Dr. sent me to the ER, my pressure was 181/123, pulse 143. I was a nervous wreck on this med, and I had a rare reaction called Stevens-Johnson Syndrome (SJS). For the first weeks while I was titrating my dose, I honestly didn’t need a nap while taking Xyrem. For the first 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 a 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 than saying we have never heard of anyone having side effects or reactions similar to mine."

• sus...
• Taken for 5 to 10 years
• January 6, 2016

Sodium oxybate "It saved my life. No more sleeping at my desk. I have had very little trouble with side effects. I learned to make sure 2 hours lapses after I eat before I take it so it will work."

• Phu...
• Taken for 1 to 6 months
• July 5, 2015

Sodium oxybate "I suffered from narcolepsy due to spending too much time in the REM sleep stage. Xyrem regulates my sleep architecture, and now I no longer suffer from excessive daytime sleepiness."

• Ell...
• January 7, 2018

Sodium oxybate "Diagnosed at 27 and changed my whole life using this drug... never knew what life was."

• Anonymous
• July 15, 2011

Sodium oxybate "I have been taking Xyrem for my narcolepsy for 6 months. It is wonderful to feel like a productive, normal person again."

• Joj...
• Taken for less than 1 month
• March 13, 2019

Sodium oxybate "I had a bad reaction to Xyrem. Nausea, panic attacks, delusional thoughts, feeling like a bad hangover every day, depressed. I ended up in the emergency room, and I stopped taking this medication."

• Sle...
• June 23, 2009

Sodium oxybate "Xyrem gave me the ability to return to work with the use of stimulants during the day. Stimulants alone did not work."

• Anonymous
• August 31, 2009

Sodium oxybate "Without Xyrem, I am a complete mess."

• Sou...
• Taken for 5 to 10 years
• August 15, 2019

Sodium oxybate "2 of 7 days in a week, this medicine works for me. Other 5 days, whole day I felt so annoyed and so angry that I cannot explain. 1 dose can sleep 2-3 hours and 2 doses like 1-2 hours."

• mis...
• January 10, 2013

Sodium oxybate "2.75 g x 2 every night for five years. Deeper sleep with dreaming not infrequent. No side effects whatsoever. I've not gotten used to the salt added during manufacture."

• Eda...
• July 3, 2018

Sodium oxybate "Xyrem helps me get restorative sleep."

• Cac...
• June 13, 2016

Sodium oxybate "I think the good of this medicine outweighs the negative."

• Anonymous
• November 13, 2008

Sodium oxybate "Truly life-changing for those with narcolepsy/cataplexy."

• oka...
• Taken for 2 to 5 years
• January 25, 2015

Sodium oxybate "When taken as prescribed, medication works well for restful sleep."